Growth Hormone Deficiency in Children

On Jun 25 2008, Kim, Ventura, CA Wrote:
Greetings Anonymous:
Thanks for the compliments on this free message board. My name is Kim and I am the Adult GH Consultant for MAGIC and the father of Elena, age 13. I know what you are saying and this is on my list of to-do's! We do need more information on transistion. I do have some information on transistioning to adulthood if you, or anyone would want to contact me at kim@magicfoundation.org.

If you have the time, may I suggest that you consider attending the MAGIC Foundations Annual Family Conference July 24 to 27 in Chicago. You will be able to talk to other parents in your situation and gain some support to proceed for your child's good health.
Again thanks for contact us.
Kim


On Jun 25 2008, anonymous Wrote:
To the moderator:

This board is a great board and very supportive. However, is it possible to have a separate support board for the 15 years and older (adolescent) being treated with GH?

Thanks and I understand if this couldn't be done.

On Jun 25 2008, anonymous Wrote:
To the moderator: (please do not post this on the board)

This board is a great board and very supportive. However, is it possible to have a separate support board for the 15 years and older (adolescent) being treated with GH?

Thanks and I understand if this couldn't be done.

On Jun 24 2008, Maureen Wrote:
Debbie - I am certainly no expert and my son just started Humatrope almost two weeks ago. Did your doctor do a Growth Hormone Stimulation test?
We have been very fortunate that our insurance saw our son's as a straight forward case. He will be a freshman in high school in Sept.
Question for anyone - I must be pulling the pen out wrong because he says it hurts, but the actual injection does not - suggestions?

On Jun 24 2008, anonymous Wrote:
NO that is not a bone age report, it is an academic test.

On Jun 24 2008, anonymous Wrote:
Hi all, is this a legit site in evaluate bone age? http://vl.academicdirect.ro/medical_informatics/bone_age/v1.0/

Thank you!

On Jun 23 2008, Debbie- Arizona Wrote:
Hi All- my son is GHD. He is 14 yrs 10 mos - 4ft10" 88 lbs. We went through several blood tests, bond-age etc. Our insurance (BCBS) would not approve him for treatment. We have been to so many Dr.'s - very frustrating. I saw a story on our local PBS about this network. I have thought about getting some sort of growth hormones online and doing this myself. My son started school at 5- he will be a sophmore in high school in August08. Making this even more challenging for him. He looks like a 5th grader. He has worn the same clothes for 4 years. I need any help or suggestions. I am a single parent. His older sister is 5'9" - normal weight. I am 5'8" - his father about the same. Suggestions or comments would be appreciated.
Thank you

On Jun 16 2008, Maureen Wrote:
Jamie - thank you so much for taking the time with me a few weeks ago when we learned our 14.5 year old son was GHD -( 4.6 peak on STIM test/2.5 year bone delay) We started Humatrope on Saturday and are hoping for good results. The doctor thinks he has 4.5 good years of growth. I know what we are told, but might anyone be willing to share what kind of results they have seen with there older children on GHT.
Thanks so much!

On Jun 10 2008, Jamie Harvey Wrote:
IGFD and GHD are different but VERY closely connected. There is no website that I know of which outlines the numbers specifically. If you would like to email me you phone number (don't put it on this board!!!) I will call you and explain it Mom to Mom so to speak. My name is Jamie and I am one of the old timers with MAGIC. My daughter went through all of this...my email address is jamie@magicfoundation.org

On Jun 10 2008, anonymous Wrote:
Dear all, is there different between IGF-1 deficiency and GHD? Can someone please point me to a good website that explains all the numbers from a GH stimulation report? Thank you very much.

On May 24 2008, Jamie Wrote:
To Confused Anonymous- contact jamie@magicfoundation.org for help. It is very complicated as you can imagine and hard to explain everything clearly via a post.

On May 24 2008, wendy Wrote:
hi my son is 17 1/2 we just started therepy 2 weeks ago. we missed the low GHD till now.
My son anthony weighs 90lbs and looks like he is 12. but very cute lol. he hates looking so young and get teased alot. I was wondering if anyone else started this late age. we are paying for therepy our self, since insurance denied us. my dr hasn't had anyone start this late age. anyone out there start this late. what result did you get. I know we won't get hiegh but maybe he can fill out look more like a man then a 12yr old kid. I just hope we are not wasting our money. any feed aback welcome Please...... thank you wendy

On May 02 2008, Out of answers mom Wrote:
I was very happy to see a few others writing here about behavior problems. My son has taken hgh since he was 7 (he's just about to turn 13). We mentioned his mood swings when we first started a few times to the dr. but he said no, hgh is not the reason. He has also had frequent headaches for several years, sometimes twice a week. He was very reserved and never very talkative to anyone (since hgh). He was never violent though, and did well in school etc. Last fall however, he had an extremely violent episode that shook our entire community. We took him off of hgh and since he is a completely different kid. He talks to people he has never spoken to before, he does not withdraw into himself like he did for years when he gets hurt (which was a major concern of ours for years), and he has had maybe 4 headaches in 5 months which is a HUGE HUGE decrease. I just feel that I can't be alone with these concerns and since then I have heard of other kids in our very small town area that have kids with behavioral issues on hgh and they "come out of it" when they are taken off. Of course, the doctors deny any kind of behavioral affect at all as well as for the headaches.
If anyone would like to comment with their behavior changes etc. I would love to hear from them.
ntflint@fmtc.com

On May 02 2008, anonymous Wrote:
My son has undergone all the tests for GHD and the endocrinologist recommended starting him on growth hormone. Unfortunately our insurance company did not agree. We took him to another endocrinologist who was enrolling patients for a clinical trial for children with idiopathic short stature and he told us that our son was not a candidate for GH. We are SO confused. On the growth hormone stimulating test his results were below 10 for five of the six measurements (two separate tests). If anyone could shed light on this it would be SO helpful. The second doctor told us that you only need one result above 10 to be considered normal. Also, his bone age from the same hand xray has been read by one as normal for his age (10 years) or two years delayed. I would appreciate hearing from anyone with similar experience. Thanks

On May 01 2008, Shelly Wrote:
If anyone can attend the educational convention this year, July 24th in Chicago, the best speakers will be teaching us about all of this AND we have question and answer time. Plus many families will be there for more help. Go to the front page of the website and look at their schedule! I went last year and am absolutely going back this year...but will be driving instead of flying! Please come- we all need to talk and learn from each other! My daughter loves it and feels "just like a regular kid" when she is there. She has such a better attitude about all of this after we get home. Please think about it if you can.

On May 01 2008, anonymous Wrote:
Helpful travel information about gh is here: http://www.magicfoundation.org/www/docs/11.1441/traveling-with-growth-hormone-medication.html

On Apr 27 2008, anonymous Wrote:
Dear All,
Thank you so much for your messages, makes you feel you are not alone. Sera thank you for message, we alos keep a diary where we record all his food intake, nappies etc, we have been doing it since he was born. He is nto a fussy eater, since the treatment started he started eating well and eats pretty much everything. I cook all his food, so I know he gets lots of calories. Louis was given Neocate a hypoallergic milk, initally the docs thought he was lactose intolerance, since he hated all formulas, and somehow loved the Neocate. We introduced milk products gradually and realsied he is not since he was eating all things with diary, so probably hated all formulas and preferred the taste of Necoate. Regarding his crawling and walking, he hasn't got much muscle, I think Louis had this problem from day he was born, so never had a chance to devlop muscles before his treatment started. With th etreatment his legs are getting stronger so hopefully he will devolp enough muscles in future to be able to do other things.
Clare thank you for message, I will look into the foundation you mentioned. I am not under Great Ormond Street hospital, when I called them to get an appointment to see a specilaist they advsied my son was too young to be GHD, since he was only 10 months old and the waiting list was too long. So i decided to take him privatley to see the consultatnt who is at Great Ormond Street and guess what an appointment next day since I was paying. Since we have kept his consulatnt private now he has retired from GOH and only does private. Our treatment is in conjunction with our GP and the consultant.
Thanks more later.
Kind Regards Shefali

On Apr 24 2008, Sera , Florida Wrote:
Dear Shefali,
My son Gavin was diagnosed with GHD around Christmas 2007. We are finally going to start treatment next week. Gavin is the oldest of my three sons -- he is 3 1/2 yrs old. He was born 6 lbs. 1 oz.
I didn't know at that time what the years ahead would show. Our pediatrician kept excellent records of his weight and height. When he turned 1 he was 26 inches tall and only 17 lbs. We fed him anything he would eat. But he was still so small. Our pediatrician had us document every calorie that he ate for a week to see if he was getting the recommended caloric intake. He was a very pick eater. Our pediatrician recommended that we keep him on Enfamil toddler formula for the extra nutrition and vitamins. He also told us to give him PediaSure which also had added calories to his diet. It did help him gain a little weight. By age three he was 23 lbs and is stalled out at 24 lbs. But I do believe that the Formula and PediaSure help him gain some weight.
Just be very aware if your son gets sick. Gavin has been in the Hospital for dehydration 3 times with Rotavirus and once with dehydration from bronchitis. Since he was so small every ounce count and dehydration happens fast. We are hoping that the GH therapy will help him with his weight as well as his height (he is only 34 inches tall now).
My suggestion is the Toddler formula and PediaSure. I know it is scary having a underweight child but you have to try everything possible.
Best of luck, you are in my prayers. I understand how you feel.
My olny concern is the fact that he is not crawling at 14 months. Gavin was behind on his walking compaired to his younger brothers but he was crawling, standing and walking while holding on by age 1.
You might want to look into that further. Give him plenty of tummy time. Put thing in front of him that he likes so he will army crawl or maybe shuffle to the object that he wants. Some babies skip crawling and go straight to walking.
Good luck.

On Apr 10 2008, clare,england Wrote:
why havent you posted my response to shefali? You can delete the line which offers her the extra support at this difficult time, of the pituitary foundation, i felt it relevant as most of the users on here are american and the other site is english and the lady probably uses the same hospital as me for her child

On Apr 09 2008, anonymous Wrote:
Hi. My 11 year old son was just diagnosed with GHD and the Dr. wants to start shots. My husband is all for this but I'm not so sure. I seem to be in the minority here. Does anyone else feel anxious about making this decision? I'm trying to educate myself and all I come across are people that are all for it. Any insight would be greatly appreciated. Thanks.

On Apr 08 2008, clare Wrote:
hi shefali, are you under Great Ormond Street Hospital in London? This is where i take my son. There is another site which i used frequently called the pituitary foundation that has lots of people on who live in and around london, might be worth having a look.

clare, Kent

On Apr 01 2008, Shefali Wrote:
Hi,
I am new to the message board, our son who was born last year in Jan was not growing from the begining of his life, after lots of tests etc we had no answers. Finally we took it upon ourself and took him to an endocronlogist who at first said he doesn't have GHD, since this affects older children and not soemone at 11 months, he also did not have small penis which is common. We insisted on tests and after few weeks we were told he is producing low growth hormone. He immediately started the treatemnt last Nov so it hss now been around 16 weeks we have been on the treatment. Since then he has grown 4 cms and the doctor was pleased. My worry is he hasn't gain much weight, since he was bron he only gained 2 kgs, so at 14 months age he only weights 5.3 kgs which is a weight of about 5 motnhs old baby. Since we have been on the treatment he started eating vey well and eats a lot of food but still the weight gain is a big issue to us. I like to know if anyone has been in a similar situation and would give some advise. He is so skinny, he only learnt to sit, he can't crawl or walk, since he has no weight on his legs, they are stick thin. Any advise would be helpful. We are in London UK and don't have much support around us, we feel very alone, since we know no one in this situation, we feel we are the only one, all children born after our son has grown bigger and crawling and our son is still a baby. I have so many worries, since he has been born 14 motnhs ago we have not enjoyed our life, babies bring a lot of joy and happiness and for us we have been in and out of hospitals and doctor chambers since, sometimes wonder if there is a light behind the dark tunnel. I am alawys so worried about him what will happen to him, the world is so cruel, will he able to walk,go to a normal school, play outside.
Thank you for listening.
Kind Regards Shefali

On Mar 31 2008, Doris Wrote:
Hi, This is my first day on this site. I have a GHD son, who is 13. He has been on GH for a year now, and is doing great. My problem is that he is being switched to a pen that needs to stay refrigerated. When we go on trips, often we do not have a refrigerator in the motel room. This summer we were planning to go to Canada for 2 - 3 weeks. Does anyone know of a good portable refrigerator made for small amounts of medication, and where you can purchase one. It would be great if it also had some way to freeze the freezer packs he needs to use during the times we are not at a motel, but traveling. I've looked on a site for diabetics and they just have ones that hold 1 - 2 pens. For a longer trip, I need something slightly bigger. Any suggestions?

On Mar 30 2008, clare,england Wrote:
my son hasnt been put on GH treatment either, because the paediatrician said its more important to test his cortisol first because of my sons tiredness.I have also been told that even though my 3.5year old son IS GHD that they are monitoring his growth and may not start treatment till he drops off the charts for height and probably not for a few years. This annoys me also because if they know his pituitary isnt producing the hormone (small pituitary gland and already has diabetes insipidus), then why not start him on it immediately. My son is being admitted in 2 weeks for the cortisol profile so im going to ask about the GH again then.

On Mar 27 2008, anonymous Wrote:
Bryan, Thanks. I will see if I can get an appointment sooner for the second Growth Hormone Test.

On Mar 26 2008, Bryan Wrote:
To Anonymous,
I can understand waiting on INsurance tests. But because the important parts that growth hormone affects are his heart, lungs, bones etc. I cannot imagine why ANYONE working in his best interest for long term good health, would say to wait! Why wait until AFTER damage is done to fix a problem when it can be fixed BEFORE more damage happens? What are they thinking??? Fight for your son! The doctor doesn't have to live with his decision- you son does. If he fails the test- his body is proving it needs help. Why make him suffer just because people can't see the wound yet doesn't mean it is not there.

On Mar 26 2008, anonymous Wrote:
Ray, Thank You for your reply. The endocrine clinic says first of all there are not too many growth hormones approved for my son's age. He is not even two yet. They also think that they will need to do another Growth Hormone Stim. Test because the insurance won't do anything to help unless my son fails two tests. They also said they like to wait until the child will appreciate the daily shots like when the child is in kindergarten and complaining that they are smaller than everyone else although the endocrine clinic said they could start at three years old but, they want to keep checking his growth to see how much he grows before then.

On Mar 26 2008, Ray Wrote:
The folks who had him taking pediasure were operating under the impression that your son was not getting enough to eat and that is why he wasn't growing. But with a GHD diagnoses, you now know that isn't the case. You could give him 5000 calories a day and he won't grow because he doesn't have the growth hormones needed. It's like a car, you can fill up the tank with gas, it still won't start if you don't have a battery.

If it were me, I would discontinue the pediasure. The endrocronoligist is the top dog for this medical problem, so do what he says.

Did he say why he doesn't want to start him on replacement thearpy yet?

On Mar 24 2008, anonymous Wrote:
We just found out that my son has low Growth Hormones however, they do not want to start him on Growth Hormones yet. The Failure To Thrive Clinic has always had us use things like Pediasure to help my son grow but, the endocrinologist says things like Pediasure will just make him fat. These two clinics are at the same hospital so they should communicate with each other. The thing is my son is so small I don't think putting a little bit of fat on him would be so bad. Should we continue using the Pediasure until they start my son on Growth Hormones? My husband wants to discontinue the Pediasure because we know my son is GHD and the endocrinologist is the one that diagnosed him with the low Growth Hormones. I am just confused right now as to what to do.

On Mar 07 2008, anonymous Wrote:
Dawn, I am 4"11 and my daughter needed gh too. It is not all your fault because science did not have all the answers...I will be glad to talk with you. Email me with your phone number privately and I will call you. jamie@magicfoundation.org

On Mar 07 2008, Dawn Wrote:
I just found out my son has ghd. He is 4 years old. We are starting on his shots Monday. This is all happening so fast I really don't know what is going on. I feel like this is my fault. I myself am only 4'11" and have most of the symptoms. Can anyone clue me in on what I should expect and should I be seen even though I am 26? I just feel lost and confused.

On Mar 02 2008, anonymous Wrote:
At the advice of Jamie, and considering the situation in Washington with the bill regarding the changes in prescribing growth hormone, I would like to share part of an email that I went to her. This will give a perfect example of why this bill just CANNOT pass! (My son is ghd, 19 years old, and has life-threatening hypoglycemia if he does not receive this drug.)

"Our insurance company must be onto something regarding this already. They will only send a 30 day supply of gh now. In addition, because my husband's insurance company, Humana, has gh as a level IV drug, we have a $2500 co-pay per YEAR!... Right now, we have to come up with $650 before they will send out the next shipment to us.... It is hurting us terribly. I hate what it is doing to us. I just hate it all."

Jodi (RSS and GHD Divisions)

On Mar 01 2008, Mich Wrote:
My son has gh deficieny, he is 5 years old. We've been taking Saizen for 4 weeks now. His moods have changed, he's not the sweet little boy anymore. He seems a little angry, and will cry for no reason. Will this pass, has anyone had this happen to them?

On Feb 14 2008, Barbara - GHD Coordinator Wrote:
Hi Diana,

What a situation!! We've been using Genotropin for over a year now, and I know how expensive it is. I'm really surprised that Pfizer will not talk to you about thier assistance program. They have been nothing but wonderful in my son's case. I'm sure they can help you, but here's what you do..... we have a message board for insurance questions. The woman that monitors it is names Andrea. She is a whiz when it comes to situations like this. Definetely post over there and see what she can help you with. She is great! Good luck! I'm sure it will work out for you. The most important thing is to keep your family together. Please let me know if there's anything else, but definetely post on the insurance message board.

On Feb 14 2008, Diana in Virginia Wrote:
My son, 10, has GHD, has been taking Genotropin shots since he was 3, and is doing fantastic. We have had a wonderful experience with all this, no problems with insurance coverage, which I carry on my low-paying job. But now, that is changing. We live in Virginia. My husband has a new job in Utah and has moved out there already, while we stay here until the end of the school year, at which time we plan that I will quit my job here and we will move out there. We asked immediately about health insurance coverage with the new job, and they do not cover growth hormone. I contacted Pfizer to ask about options and learned that the Bridge program has an assistance program for the under-insured. However, we can't find out from Pfizer if we would qualify for this assistance program. If we don't qualify, we absolutely cannot afford to pay for the drug out of pocket, since it would cost more than half of my husband's annual gross salary (in other words, most of his take-home pay).

Pfizer won't talk to us because I still have insurance coverage until I quit. We find it so essential that our son continues with his growth hormone that we want to ensure we will be able to get it. If I quit my job and move to be with my husband, we have no insurance coverage for the growth hormone. What if Pfizer decides we don't qualify for their assistance program? They won't tell me anything about the income requirement for assistance at this point. If we didn't qualify, we would have absolutely no way of getting my son's growth hormone. This is a risk I do not feel I can take.

So we are considering that the kids and I might have to stay here in Virginia while I work at my low-paying job because it does have the health insurance coverage for growth hormone, while my husband lives and works in Utah. Not an ideal situation, especially after my husband was in Afghanistan for the last year -- we'd really like to be able to live together as a family again.

Long story short -- does anyone have any info about the income guidelines for the Pfizer Bridge assistance program? We will definitely quality as under-insured, we've already gotten that verified. But will we qualify for the assistance based on income? Does anyone know the income level for a family of four to qualify for assistance?

Many thanks for any information you can give.

On Dec 28 2007, Barbara - GHD Coordinator Wrote:
Hi anonymous from the UK,

First of all, don't hate yourself. You have the courage and guts the seek out support which I personally think is the greatest thing a person can do when they feel lost or depressed. I was very small too as I was growing up, and was made fun of a lot. When I was 8 years old, I was still in size 4 clothes. It was a nightmare. Then, when my son was diagnosed with GHD last year, I thought I was going to go off the deep end. Anybody who is an outsider to the condition has no idea what it's like battling with those horrible feeling of inadequacy every day. But, I believe that this is what makes us stronger. It took a while for me to come around because I was so afraid my son would have to put up with the ridicule that I did as a child. I'm sure he does, but he has taught me to just let things go.

I know you feel very alone, but please dont You're a lot stronger than you give yourself credit. Stay Strong!

On Dec 17 2007, anonymous Wrote:
Hi everyone.
I'm new to this and I don't usually seek help from anyone but I thought it was time to share. I was diagnosed with Growth Hormone Deficiency when I was born and since then I have been subject to daily genetrophin injections for which the Government (UK) funds for my medication.

I am now 19 years of age and I stand at 5ft 2. I believe growth hormone deficiency is the main cause of my depression. I still haven't shaken it off and it seems unlikely that I ever will. When I was younger I was bullied for my shortness everyday. I was never popular - I always wanted be accepted. Even when I was in collge/sixth form, kids 5 years younger than me used to call me names. Unfornately, the bullying never really stopped until university. I'm much better now although I still get very much depressed and self-conscious about myself, which resuslts me to being quite anti-social. Making friend is so difficult and that's not because I don't put any effort in. I always do but no matter how hard I try, I can't seem to shake off the feeling that people don't want to be there with me.

I try to stay positive and sometimes it helps but there's always that day where I wonder what life would be like had I not been growth hormone deficient. On those days, I get really upset. Why was I diagnosed when other members of my family weren't? Why does it seem like bad things always happen to me? Sometimes I hate myself for who I am.

On Dec 13 2007, Mary Florida Wrote:
To cindi my daughter is 7 and also has CPP and CAH Non classic and was diagnosed at age 6 but started puberty at age 5 her bone age is 11 and she is on lupron 15mg injections every (2) weeks now and has been on GH injections for 3 months she takes Genotropin 2.4 mg everyday. My question to you is did you have a hard time getting the GH approved by your insurance? My daughter was tested for GH deficiency and failed by 1 point whatever that means. We were denied medication via phone and we are going through the appeal process now and We are in process of waiting for answer by insurance to see if they will pay. I would like to talk with you if possible to get idea on how this process works. You can contact me via phone or leave me your e-mail addy.
I thank you for any help in this matter. My e-mail addy
sheba19907@aol.com

On Dec 12 2007, Barbara - GHD Coordinator Wrote:
Hi Anonymous,

In regards to your child's percentile drop, just know that most of the pediatricians will tell you, "don't worry, he/she will grow". This has happened to a good majority of us here. You sound very concerned (and rightly so), so maybe you should get in touch with a pediatric endochrinologist and have your child examined. In my personal situation, my son was normal at birth and about 2 years old, he stopped growing and slowly fell off the chart. My husband and I finally took it upon ourselves (after about 3 1/2 years) and had him tested. Sure enough, there was a problem...he had GHD. It couldn't hurt to have your child tested. I agree with Ray. Good Luck!! We're here for you.

On Dec 12 2007, Ray Wrote:
I think the fact that he rapidly changed his measurements on the growth charts may be a cause for concern. It certainly wouldn't hurt to have him checked further.

On Dec 12 2007, anonymous Wrote:
hi..i am very new to this but have joined magic to hopefully get some support in getting some help for my son..he weas born quite small at 47cm and 5lb 7 and grew steadily in the first 6 months to get to just under the 50th percentile. It was from 8 months that he became slipping off the chart til at 2 years he was under under the 5th percentile. Because he has remained there in both height and weight, doctors just tell me that he is in proportion and not to worry about it. He is now 3.5 years old and about to start kindy. He is already affected by being small..he is treated like a baby..cause he really does look young. He is 87 cm tall and weighs 11.3kg...am i right for being concerned?? Im not sure anymore??

On Dec 12 2007, cindi Wrote:
Hi - my daughter has cpp and is on lupron and growth hormones. For insurance reasons we have to switch the brand of growth hormones from nutropin to genotropin. Has anyone had to switch mid therapy and if so - what do i need to know about it - thank you!

On Dec 04 2007, Jamie Wrote:
From Jamie at MAGIC; we are currently developing a list of doctors (pediatric endocrinologists) who are recommended by families. If you have the name/city and phone number of a ped. endo. you would recommend to other families- PLEASE take a minute and let us know who they are! Thanks! Email jamie@magicfoundation.org with the details so we can tell other families.

On Dec 02 2007, Susan in Maine Wrote:
Thanks everyone, but I think we've figured out the urination thing. Seems to be more a combination of a lazy kid and a father who was letting her get away with not paying attention! The key was that there was never a problem around me - only around her Dad! I guess the lesson is that sometimes it isn't a medical problem - just a kid being a kid.

As to Maya being diagnosed with CPP even though she was already nine: for a whole host of reasons, it was NOT a good thing for her to be going thru puberty. One of these is that she was only 44" tall, and already in phase 3/4 puberty. We could not afford for her growth plates to fuse.

Maya was born in Cambodia with multiple birth defects and didn't have a very good start in life. When she arrived in the US at age 23 months she weighed only 10lbs and had the development of a 3 month old.
Here is a link to her story if anyone is interested. http://kennebecjournal.mainetoday.com/news/local/3941153.html#begin

It's wonderful to have this resource!

On Nov 28 2007, Barbara- GHD Coordinator Wrote:
Hi to all,

We know that some of you have posted a comment or question but it has not appeared on here. We're sorry for the delay but you know how computers are. If you haven't given up on us, please post your comment or question again so we can help you out. We're all here for each other, so don't worry about asking the same question over again. It's a delicate and confusing situation, and we're all in the same boat. Hope to hear from you again!!

On Nov 28 2007, Barbara - GHD Coordinator Wrote:
Hi Lisa,
Natalie is right, the earlier this disorder is diagnosed, the better. I think the reason why you see so many of us on here with older children on GHT is because many pediatricians do not like to give a GHD diagnosis. They're very famous for saying "don't worry, he/she will grow...." In my personal situation, my husband and I knew there was something wrong with Michael around the age of 5, but our pediatrician just kept telling us "well, mom is short, so he's taking after you mom" Thanks doc! When he was 7 years old, we finally took it upon ourselves to take him to an endochronologist, and low and behold, my son was diagnosed. We visited him every 4 months for about 3 years, monitoring him very closely until age 10. It was then that the Endo said we have to start GHT. Many of these specialists are very conservative because of the darn insurance companies. If they don't dot thier I's and cross thier T's correctly, they will deny the treatment. It's a complicated situation, but no matter how old your child is, we're all in the same boat. Please let us know how this is going for you.

On Nov 28 2007, Natalie Wrote:
Response to Lisa: the earlier the problem is discovered the better the treatment results can be. There are a few stories written by people who started this group on this website. You can see them by going to the growth hormone deficiency in children page and clicking on them. All of their children were diagnosed before the age of 7 I think. But our doctor says it is always good to check the child's history and then start searching for answers right away. Call MAGIC they have Mom's who can talk with you.

On Nov 28 2007, Lisa Wrote:
Hello all. I am totally new to this, but I think we may be headed down this road. My son is a twin, and had a good birth weight of 6lb4oz. He was in the 50th percentile for height & weight up until about 3 yrs old, when his height began to drop off. Now at 6 he is in the 15th percentile. His weight is still around 40th, but he does not appear chubby at all, and feels very solid. Developmently he is quite advanced, at least 1-2 grades ahead in school. We've recently had a bone age test and he is 2 years behind. My ped is going to refer us to an endo. I am definately on the slight side, and was a late bloomer, I am 5'4" now. My husband is 5'10". My dad is very short, around 5'5", his brother shorter, and his mother only 4'11". His twin sisters growth is on the high side (of course!) and she is now about 3 inches taller than him.

One thing I noticed on this board is that most people have older kids..or started treatment later. Is it better to start later or earlier? Not sure what we will find...pituitary issues or GH...so I guess I am a little premature. But just curious...

On Nov 27 2007, Barbara - GHD Coordinator Wrote:
Hi Susan,

I'm not too sure about the increase in urination, but please, if anyone out there has had this experience, tell Susan about your experiences.

I just want to say that the Pfizer Bride Progam is phenomenal! I'm with you on that one. Let us know how everything goes.

On Nov 22 2007, anonymous Wrote:
9 1/2 with CPP isn't that the normal age for girls to start puberty? Why would a doctor put her on meds to delay it? Was she diagnosed with another disorder that needed to be treated? My daughter started puberty at 5 and by the time she started lupron injection she was 6 with bone age of 11 after being on lupron for 1 yr. at a very high dose it slowed down her growth to a snails pace but has her bone age still advancing at a very fast pace. My daughter was also diagnosed with Non classic Congenital Adrenal Hyperplasia and is on hydrocortisone every night for that. I also noticed that my daughter has not stopped odor and axillary arm hair as well as pubic hair growth and has discharge. So now we have her on GHT and we are trying to get some height back that has been lost with her advanced bone age. My daughter grew little over 1 inch in 2 months and we are so happy but in the same breath i am very worried that when we do another bone age in 3 weeks I have a strong feeling we may find that her bone age is still advancing rapidly and all this medication she is on to stop puberty is really not helping and that means it was all for nothing. Does anyone have any helpful suggestions that can help me? Maybe there is something else she has that has not been discovered yet Very frustrated mom in florida

On Nov 20 2007, Susan in Maine Wrote:
Re: Increased Urination

My 9 1/2 year old daughter started HGH due to a severe GHD in early September. She also started Lupron for CPP in late August. In the last week or so she has had several 'accidents' when she wet herself with a significant volume of urine. This is a new development. Does anyone have any experience with this? I am calling her endo and our family doctor tomorrow, but am interested in what other parents might have to say.

And count me in as one of the big fans of the Pfizer Bridge program!

On Nov 20 2007, Barbara- GHD Coordinator Wrote:
Hi Ray,

That's great! Hopefully they will be able to help you out. It pays to say something sometimes, even if you usually don't.

On Nov 15 2007, Ray Wrote:
Some good news.

Our daughter had an appt. with her Dr. yesterday. She is now at 30lbs and 33 inches. Puts her firmly in the proper range on the growth chart. And I usually don't mention money to the doctors because I know they don't do much with that. But in this case I did mention the raise in our insurance and how they will only cover 50% starting 2008. He sent in the lady that does handle that stuff and she said that she knows of a couple of groups that offer financial assistance. She is going to get in contact with the SPOC folks and have them work with us, so hopefully we will be able to get some help.

On Nov 10 2007, anonymous Wrote:
My son is 3 1/2 and is in his 3rd week of Nutropin shots. Can someone tell me if it gets any easier and any tricks to trying to get a squirmy toddler to sit stil so you don't have to poke him several times or restrain him? I would very much appreciate any input. Also, we rotate but his rear end seems to bruise, are we doing it too hard? WE're gonna try the ice trick and if that doesn't work we'll call the doctor and see about lidocaine. I don't know how to make it better for him. Thanks

On Nov 10 2007, anonymous Wrote:
We are seeking a good Dr. in the NJ or Pa area. WE have been to the same Endo for 3 years and really are getting fed up with "lets see what happens" from him Can anyone recommend a good Dr. that understands this short stature. PLease advise us. Any feedback will be appreciated. BGAJG@verizon.net

On Nov 09 2007, anonymous Wrote:
Ray
Contact the Patient Assistance Dept of the Manufacturer of your medication - they may be able to help.

On Nov 08 2007, Ray Wrote:
Help, I just found out that our insurance is changing their coverage in 2008. We will now have to pay 50% of the cost of her Hormone Replacement. There is no way we can afford that. That's like half my paycheck. We are barely holding on as it is. Any suggestions?

On Nov 03 2007, Lori Wrote:
Leslie,

That is wonderful news!!! It does get easier with time!! It is just part of our night time now - my son has been on Genotropin for 3 years next March and has grown almost 12 inches in that time.

On Nov 02 2007, Leslie Wrote:
Sarah grew .6 inches in the first four weeks on Nutropin!! I just had to share with someone who would understand the hugeness of that! We are very very excited that her body is already processing and using the growth hormones. She was 54.9 inches at her one month appt, up from 54.3!! Just for reference, she is 13 and 4 months old and weighs 69lbs now! That's a 3 pound gain as well!

thanks again for advice on the shots. We got lidocane cream from the doctor and have also used ice a few times now. This week has been much better so I guess we will get better over time.

And thanks for providing somewhere for me to share the news!

Leslie (mom to Sarah who has grown more in 4 weeks than she usually grows in 6 months to a year!!) What a releif!

On Nov 01 2007, Cindy Wrote:
Hi Leslie, Our son who is 9 started norditropin about 3 1/2 weeks ago. Hard to believe it has been that long already. He has no body fat and refuses to go anywhere but the thighs. We use ice to numb the area and give the shot on the top or the side alternating between the four areas. He says now that he hardly feels it and he does not pay attention when we give the shot. I hold the shot with one hand and use my thumb to inject the meds. We do not pinch, the nurse said it is not needed and he bleeds more when we do or at least seems to. I make a conscious effort not to press into the skin so it took several tries before I stopped leaving pressure marks but it does get more routine if not easier. (who really wants to give their child shots). We also use the nordi pen mate which hides the needle and presss of a button injects the needle so I don't have to. Our son hates needles and so it also helps that he can not see the needle

Cindy

On Oct 30 2007, Barbara - GHD Coordinator Wrote:
Hi Leslie,

My son takes his shot in the thigh all the time. Usually it's off to the side a bit where there's more skin to grab.

On Oct 29 2007, Ray Wrote:
Does anyone have the dates for the 2008 conference? When we found out about it this past year, it was too late to make plans to go. So we decided that we will go next year. I realize that is might seem kind of early to be asking, but where I work, we have to schedule next year's vacations in November. So if I don't request a specific week off work, then I run the chance that won't be able to get it later. So if someone knows the dates and location, I would really appreciate it.

Thanks

On Oct 25 2007, Barbara- GHD Coordinator Wrote:
Hi Laura,

No, you're not alone. We're all in the same boat. In time, maybe your son will be ready to do the shots himself, but let him tell you when he's ready. My son decided to do it on his own when I was sick because the first time his dad did it, it was a disaster. I had the flu and just could not get out of bed, and I heard him telling my husband "no dad, let me try please" He let him do it but watched him very carefully. It went well. Still, when it's shot time, I always watch my son do it, and sometimes I'll say "ok, can I try it tonight?" Whenever we hit the capillaries, it became a game to see which one squirted the farthest. (I know that sounds twisted, but to an 11 year old it's funny). I hope you feel better soon. Just remember, we're all here for each other.

On Oct 24 2007, Mike Wrote:
Leslie,
I am not sure that them giving the shot is such a big deal. Pete went through such a tough time last year in 7th grade with all of the name calling( shorty, shrimp etc) I think it made him all the more determined to do this on his own. The endo has told us not to worry about puberty because she thinks he is a long ways away. Plenty of growing time and she will delay it if necessary. One thing we have seen that seems encouraging( 2 weeks into this) is his energy level seems to be up. Maybe I am just imagining but he just seems to be a little more frisky and a little more bright eyed.
The thigh shots he does on top, right in the middle of the thigh. The first couple of times he broke out in a sweat but seems to be no problem now.

On Oct 24 2007, Leslie Wrote:
Thanks Lori and Mike! We did get training by home health, but using the pen is still tough for us. Sarah doesn't even want to pinch her own shot area anymore, so we may have awhile before she will give her own shots. She's still a little freaked by needles in general. The lidocane cream helped alot last night, but we must have hit a capillary again because it bled. Thanks for your suggestions and comments.

One more question. When we use the thighs, we are on the top/side of the thigh, so if she is sitting, we are giving it on the side of her leg. Are you giving the shots on the top of the thigh, or top/side?

Thanks again. Not sure if we will ever get used to giving her shots. Next Monday is our 1 month doctor visit, we need it!

Leslie

On Oct 23 2007, Laura Wrote:
Thanks so much for responding to my questions. I knew that there had to be somebody out there that had started these shots as late as we had so whew....thank you. I forgot to mention that Dad is 6'2", but we are not aiming near that (I am only 5'1") or maybe we should aim for the middle, I'm not sure, his endo says about 5'7 or 5'8" Right now my son is 11 years 6 months and this Sunday, October 28, marks his 1 year of taking the GH shots. He is 4'3 1/2 right now. We see the endo next weeks so I will be excited to see if she gets the same measurements. Puberty is a scary thought to me - but his endo says there is medication that will allow him to go through puberty but not allow his growth plates to fuse. Right now he is not showing any signs, much to my relief. He sometimes shows some interest in giving the shot to himself such as holding it to his leg - but he doesn't have the dexterity or the strength in his thumb to push down yet. Any ideas how I could encourage him? I have pneumonia right now and can't convince him to let Dad do his shot - only me, and I am worn out by shot time. I am trying to muddle through the best I can. I have found it easiest with him, if I don't pinch the skin on the side of his thighs (he hasn't noticed that I am just laying my hand there) I just use one hand to give him his shot and Sue talked me through alot of it (everynight was a crisis for a while) I am right handed so when it came to his left side, I felt like I was tripping over my own arms, but it does get easier with time. I promise it does, I find it helpful to sit on the floor at an angle next to him with an overhead light on. I usually count in my head to 2 as I am putting it in, if it goes to fast, it hurts, and then I count to 5 as I am pushing the medicine in (with the Nordiflex pen). It does take a little bit of pressure at first, but it will get easier with time, I used to always leave pressure marks on him, but somehow, we have just blossomed into our own routine every night (we keep it around the same time and after a shower so he is relaxed). I'm still doing the shots in his thighs, still hit a capillary or two, but I don't panic so much any more. I go on his cue (using the 5 minute rule), I count to five a gazillion times slowly until he says okay but feel and go regular (ha ha, which makes me think he is pumping gas) and that works for us. He is very particular about where things are placed for whichever leg including the pen, the sharps box - there can be nothing else on our couch. If it helps him - I'm willing. Thank you all so much for your replies. It's nice to know that I am not in this alone and there are plenty of you in the boat with me. Thanks a million

On Oct 23 2007, Mike Wrote:
Hi Leslie,

We are by no means experts after only 2 weeks but this is what we have seen and were told by the nurse.
There will occasionally be a drop of blood because you will hit a capillary every so often. The video and nurse both say to count to 5 but we count to 7 then pull out. I think by him giving the shots he can determine what feels good and can control the pressure better than I could. Will your daughter self administer? Our son doesnt have much fat either but he uses the tops of thighs, back of upper arms and we tried the stomach last week.
He just puts the needle in on the arms and legs and pinches a little on the stomach. Hope this helps. Probably some folks out there that are much more experienced than I am.

On Oct 23 2007, Lori Wrote:
Leslie,

Forgot to respond to your last questions - You grab the skin - so "pinch an inch" and then inject into the "inch" - I hold that with one hand and inject with the other and push plunger slowly with my thumb - the nurse or Dr. should have trained you on how to give the injection - if your not sure I am sure they wouldn't mind going over it again - it was nerve wracking the first time I did it and now its just second nature. My son barely flinches when he gets his shots now.

On Oct 23 2007, Lori Wrote:
In response to Leslie,

Have you Dr. prescribe Lidocaine (think thats the correct spelling) it is an anaesthetic cream - you use a small amount cover with plastic wrap and tape for about 15 mins, then clean off and prep the site as normal and inject into the numbed area - your daughter won't feel anything - or use an ice pack if time doesn't permit using cream - place on skin for a minute or two and then inject in the numbed area. I usually count to 10 after pushing plunger down all the way - then removed the needle - this should reduce seepage of meds. We inject in the stomach, thighs and top of buttocks. Hope this helps.

On Oct 22 2007, Leslie Wrote:
Suggestions??? My daughter is 13 and 1/2 years old, she is 54" and 64lbs and is on her 4th week of Nutropin. She's pretty little - especially when you consider she is going to highschool next year about the size of an 8 or 9 yo. So far she is not having side effects except for the occassional headache that seems to pass quickly. OUR PROBLEM is giving the shots. Either my husband and I just aren't that good at it or she doesn't have enough body fat. We were able to get size 3/16 inch needles to use on her instead of the 1/2 inch. Often there is a drop of blood after the shot, and sometimes we take the needle out too quickly and there is a little pool of medicine. She says they hurt. What are we doing wrong? We are using the backs of her upper arms, her outer thighs and her stomache. She has no real amount of fat anywhere. SUGGESTIONS?? The pen takes quite a bit of pressure to give the shot....I think we are pressing into her body when we are trying to press the button.

How do YOU hold the pen? one hand or two? Do you bunch up some fat/skin? or do you just put the needle straight in?

Thanks!

On Oct 17 2007, anonymous Wrote:
Mike,

Good luck with the shots - that terrific that your son wants to do them! Never had any problems with oozing - occassional bleeding but nothing major. They are powerful meds - my son has grown 12" in 31 months!

Lori

On Oct 16 2007, anonymous Wrote:

Thanks Lori,

I like the ice idea but he is dead set on giving the shots himself so the stomach idea gets him a little queasy.
On another note, he took his 4th shot last night in the back of the arm. First 2 in the thighs and other in the arm also. However last night a couple of hours after his shot the site started to ooze. I could not tell if it was the hormone or just liquid. Talked to the nurse and she said it was nothing to be worried about. Only difference last night was he got into a wrestling match with his sister a couple of hours after the shot. I read somewhere else on the magic site( i cannot find it again) where someone else had reported this. Has anyone here had this happen?

Thanks for your help.

Mike

On Oct 16 2007, Barbara - GHD Coordinator Wrote:
Hi Anonymous,

When my son was finally diagnosed with GHD, I did so much research that I drove myself into a total panic. There is so much info out there, and some of it is completely off the wall, so sometimes you just don't know what to believe. Delayed bone age is good because it gives them more time to grow then the average kid thier age. My son's boneage is about 2 1/2 years behind now, so I look at that as a good thing. As parents, we always dread the start of puberty in our kids, because most times, moodiness and attitude go along with it. But, as mom's (and dad's) of GHD kids, puberty is a constant source of worry for other more serious reasons. I know exactly how you feel because like you, not a day goes by that I don't think about it.

On Oct 16 2007, anonymous Wrote:
Thanks Barbara. I get into a panic pretty easily and read more into things than I shoud! My son didn't start GHT until very early puberty but he does have a delayed bone age of two years. The doctor always expected late puberty for my son but it started at an average time. His puberty is a source of constant worry for me!

On Oct 16 2007, Lori Wrote:
In reponse to Mike:
My son Ryan gets his shots in the thighs, stomach and buttocks - (6 sites) we rotate. We use a anaesthetic cream to numb the area or if time doesn't permit we use an ice pack to temporarily numb the area - either way he doesn't feel anything. When we do the shots in the stomach we grab some tissue - I usually have my son slouch over so I can grab some fat. I still administer the shots - my son has no interest in doing them. Hope this helps.

On Oct 15 2007, Barbara - GHD Coordinator Wrote:
Hi Anonymous (sorry I don't know your name)

No that's not what I meant. When a child goes through puberty, and the bones are fused, then it is too late, GHT will not help. However, when a child is in certain stages of puberty, and the bones are NOT YET fused, GHT WILL work until the bones fuse. I should have made that clearer, sorry about that. There are medications to slow down the process of puberty while the child is going through GHT, but that's not always necessary depending on what stage of puberty he/she is in.

On Oct 15 2007, anonymous Wrote:
Barbara, you wrote "He was just 11 when we started him, so it's never too late as long as puberty hasn't reared it's ugly head." Puberty "reared its ugly head" right when my son was getting started on GHT. I know there are many other mom's that have posted their kids have started puberty around the time GHT was started. Are you saying we are all too late?

On Oct 14 2007, Barbara- GHD Coordinator Wrote:
Hi Laura,

That was me that said we started our son with GH last October. He was just 11 when we started him, so it's never too late as long as puberty hasn't reared it's ugly head. He is now 12 and is doing pretty good on it. We go to the endo on October 30th, but my son has gained between 4 and 5 inches since we started. He too has not fat anywhere else other than his thigh, so we just switch between the two every night. He finally started to give himself the shot about 3 months ago. What a change in his whole outlook. Suddenly, he became so proud of himself because it gave him a sense of control over this whole situation. It was not longer "c'mon Michael, time for your shot" and then he would groan. Now, he remembers himself, and really feels part of it, instead of being the "victim" (for lack of a better word). The only problem we've come across, is that he is sometimes moody, but that also could be because he's 12 and in the 7th grade. He's finally back on the charts, and there is actually one other boy in his grade that is about 1 inch shorter than him. That's a first because he was always the smallest.....by alot too! Anytime you want to talk, I'd be happy to exchange emails directly with you. Magic has helped us so much, and whenever it feel like I'm going to lose it, I just come here because everyone here understands the situation. And trust me, there are alot of ignorant people out there. Stay in touch!

On Oct 13 2007, Mike Wrote:
My son is 13, 57" and 72lbs. 1.4 on the stim test. He just did his second shot yesterday of nutropin. The first 2 he did in the top of his thighs. He is bound and determined to administer the shots himself. What have the other parents found to be easy spots for self injection? We have heard that the belly area is good but will take some talking in to. Is the back of the arm feasible? We were planning on 4 different spots for rotation or is more required? The nurse told us that he could give one in the top of each thigh then in the sides of the thigh then start over.

Thanks for your responses,

On Oct 13 2007, Lori Wrote:
Laura,

My son started Growth Hormone 2 yrs 7 months ago when he was 11yrs, 9 months - he was 4' 3" and now at 14 yrs. 4 months he is now 5' 3".

On Oct 12 2007, Laura Wrote:
I have a question and am in need of some help, please. My son turned 11 in April of this year, we have only been doing the growth hormone since October 28 of last year. Our dose seems to increase every 3 months as he gains some weight. (Hooray we have finally made it to 50 lbs and are right at the 1st percentile - which we have never even been near the curve) He is GHD, low IGF-1 and IGFB3, SGA and IUGR. He was born prematurely at 27 weeks weighing 1 lb 13 oz and just 12 inches long. I hate that his pediatrician never suggested their might be a problem with the GHD until this last July and I didn't know enough to ask since I am not tall myself being 5'1. He is in the 5th grade and finally starting to be able to keep up physically with children his own age. We have been through so much with him and it has taken him nearly a year to be able to get his shot within 2 minutes, he can't do them himself yet, so thank you to Jamie for instituting the 5 minute rule, you have saved my sanity!


One question I have is has anyone else ever started the GH therapy this late and what results are you seeing? I noticed that on August 13 someone posted about their 11 year old son also who started in October. If there is anyway we could get together, I would love too. It's a rough road by yourself. My other question is does anybody else have the problem of their child not having enough fat anywhere except for their thighs to give the shot in? I am so afraid that we are going to wear them out, and we have started hitting capillaries so I've been trying to move over or under on the thigh. His doctor even checks every 3 months and agrees, there is no alternative than there right now. HELP. So far to date he has grown 2.2 inches and gained 7 lbs since we started. I am thrilled.

I also noticed that someone was asking about a way to make the shot go easier in the evening like a reward - what works for us is every night after his shot, he has his own calendar and he gets a sticker for that night that he gets to pick out and put it on his calander. If I did a good job, then I get a sticker too! So far I have just missed 3 nights. It also helps him keep up with how many he has had and I keep a growing book for him so he can see that it is worthwhile, not just in the heighth he has gained, but also in the way he feels like being able to keep up on field day without being winded in 2 minutes.

Thanks so much for your help.

On Oct 08 2007, Sharon Wrote:
Re: Low GH, Normal IGF-I and IGFBP3

My son is 52.4 inches (not 54.4 as I think I posted earlier) - sorry.

On Oct 08 2007, Sharon Wrote:
Re: Low GH, but normal IGF-I and IGFBP3

Hi everyone. My son failed the GH stim test (scores were appx 8 and 9), but was within normal ranges on both the IGF-I and IGFBP3. His growth's been slower than what his pediatric endocrinologist would like to see. We've been watching it for a year and a half to see if it picks up, but it hasn't. My son is 11 and 54.4 inches. He is the shortest in his class. Our endo suggests we try GH. We are expecting my insurance company to deny it initially because they require the child to fail either the IGF-I or IGFBP3, in addition to the GH stim test. I've already posted on the insurance board asking for suggestions to challenge the insurance company's coverage position. But now I've read that a low GH stim test result, with a normal range IGF-I and/or IGFBP3, might suggest a false positive GHD result. If this is the case, I'm wondering whether I should be pursuing the GH for my son. This is all so confusing. Any advice would be greatly appreciated. (By the way, he has two cousins that failed all three tests and are being successfully treated with GH therapy.) Thanks.

On Oct 01 2007, Susan in Florida Wrote:
Does anyone have knowledge of or access to an independent endocrinologist who could review our file and make a recommendation to the insurance company?

On Oct 01 2007, Ruthann Wrote:
Shawna - thank you so much for your reply! How much has your daughter grown since she has been taking the HGH? I started my son on Genotropin last Wednesday and he is not having any trouble taking his shots- thank goodness! He is taking 2 mg. The insurance has not approved it, but Pfiser is helping us with their bridge program. The medicine is $3000 per mth. I am hoping that the insurance will approve at some point in the appeal process.

On Oct 01 2007, Laura Wrote:
my son is 14 years old and just started ghd therapy. He is on 1.5mg of sumatropin with each injection. I'm concerned that we started so late with his therapy that we will get lesser results. I'm also concerened about the headacheas and mood changes.

On Sep 27 2007, Shawna Wrote:
I haven't read through all the postings yet, but would like to resond to the 9/17 one about boarderline #'s. My daughter is now 10, and has been on growth hormone for almost 1 1/2 years. She has a stim test done and her #'s fell with in the normal range, but at 8 was still wearing size 4T . The doctors opinion was that it was up to me wether or not we try treatment, and insurance probably wouldn't cover it. We decided to do it because even if the #'s were in the "normal" range, something wasn't working right. (At the time she was a little low in igf-1). That may be the culrit, but Growth Hormone therapy is working for her. Her dads insurance has fought it tooth and nail for the first year. Luckly the drug companies helped us out, and since we started I became full time, and my insurance picked it up, no questions. Her dad's insurance has since approved it for one year. My only advise on making your decision is follow your instinct, even some people in my own family told me I shouldn't do it for her, but the more I learned about it (hormone therapy) and the more support I got from people that have 'been there done that', the more confident I grew in persuing it. I think a lot of fear comes from what you don't know. If you think that it is for your family, don't wait! Your son is getting to an age where pubety is going to play a critical role in whether or not it will work! Also, if his numbers are only a little low, he may only need it for a short time. My doctor right now says two years. Of coarse I am going to keep learning all I can before we decide stop, but that may be the case for you too! Keep up the good work and fight for your sons rights!

On Sep 24 2007, Ray Wrote:
Tabitah, our daughter started at .3 but is now up to .5. She is now about the same age as your son.

On Sep 24 2007, Tabetha Wrote:
Hello, my name is Tabetha. My son is 2.5 years old. We tried starting Nutropin in July, and that lasted for 2 wks, because my son started having diarreah right away, and that lasted for a week after we stopped the hormone at the endocrinologist suggestion, and we ended up taking him to the er one night. A week after initially starting it we also noticed swelling in his right testicle area. The doctor said while this currently wasn't a side affect, I was the second parent of to state this. We tried starting the hormone last week again, however the swelling that had stayed even after we stopped the first time, was about twice as large and hardening. We took him to the emergency room. They believe he has hydrocele and a hernia, which aren't side affects of the growth hormone, but it may be aggrivating it. Has anyone else experienced anything like this? Also, my son is 2.5 yrs and 28 inches and 23 pds, the doctor started him at .4mg a day, however, I've been hearing that pediatrics should start at about .2 mg a day. I know you can't tell me how much my child should get, but does the .4 mg sound familiar to anyone?

On Sep 19 2007, Barbara - GHD Coordinator Wrote:
Hi Anonymous,

My son was not borderline GHD as yours is, he was a definite GHD with his highest level on the stim being 1.5. I have to admit, that my head was spinning the same as yours, even though we basically had the decision made for us by his low numbers, but the only advice I can say is to go with your gut feeling. As a parent, you just know what's right for you child and what's not. Still, if there's anyone out there whose been in the same situation (the child being borderline), please feel free to chime in. Either way, good luck, and not matter what, you will make the right decision for your child. Keep us posted!

On Sep 17 2007, anonymous Wrote:
My 13 year old son is 54" tall and weighs 78 lbs. He has not grown much at all in the last year or so. He still wears the same shorts that he did in the beginning of last summer. He was tested and the results showed 11.4 GH and 162 IGF-1. So far the insurance has denied his supplies and we plan to appeal it. I am still a little nervous to start him on GH only because his levels do not fall outside of the normal range. Both are on the low end though and considering his small stature, I am inclined to go ahead. I have a second opinion scheduled for October just to be sure. It's hard when we have to gamble with our children's health. Otherwise, my son is very healthy and bright-- I would hate to change that. I'm just unsure!

Does anyone else have a child that falls within the normal range for both??

On Sep 15 2007, Barbara_ GHD Coordinatro Wrote:
Hi Susan in FL,

Stay strong. Pfizer was great with us so you have the best on your side. During the stim, my son's highest number was 1.5 and his his bone age was 3 years behind, and we were still turned down on our first try at getting approved. These insurance companies only look at cost and not the actual child. It's frustrating, but Pfizer did a great job for us getting it approved. Hang in there and please keep us posted.

On Sep 13 2007, Susan in Florida Wrote:
Back to the 50th percentile boy who's GHD, Blue Cross denied him the medication for the second time this week. Apparently they give no validity to inherent weight problems, heart problems, and organ issues that will arise without the treatment. The Pfizer Bridge Program is helping us both with the next appeal as well as covering the medication until we work this out. His highest stim test was 4.7. His bone age is almost four years delayed. He has a medical problem that he can't fix without medicine. I just don't get it.

On Sep 11 2007, Jennifer Wrote:
Ray

14 years ago, I brought my 6 month old in to see her doctor explaining she is too small, she doesn't eat enough, she was 5 lbs when she was born, full term, at 6 months she weighed 10 lbs. after almost a year of testing they finally told e I was the problem and they were turning their findings over to social services. I walked out of that doctors office and never went back. Thankfully after 3 years I found a doctor who would not judge me but look at my daughter and her needs. She told me immediatedly at our first appointment that she thought Sam was GHD.

My point is, don't settle for what others think, if you know in youg gut that something is wrong or needs to be done, follow your instinct. You are your childs biggest advocate and you know what is best. Don't ever feel you are not a good parent or that you have to not talk about it. This is how people get to know and understand what our kids go through. Good Luck

On Sep 11 2007, Tammy Wrote:
This message is in response to Lorali's message from sept 05. I found The Magic Foundation from doing a search for "children growth hormones and mood swings." My husband and I are at our wits end with our soon to be 17 year old son. He started nutropin when he was 15. He was going into his freshmen year in high school @ 4'11" I always new there was something wrong, but couldn't get my doctor to hear me. We finally got a diagnosis(was not producing GH) and started him on Nutropin. Since then he has grown significanly, but his attitude and mood swings are unbearable. I've ask his doctor if this could be a side effect of the Nutropin and he said no, but when I ask a psychologist friend he was very adamant that it could very well be the problem and advise me to get him off as soon as possible. I started this search this morning in hopes of finding out if this is truly a problem. I would to hear more from anyone out there that is having the same problem. Thanks
Tammy

On Sep 09 2007, Barbara - GHD Coordinator Wrote:
Hi Ray,

Isn't it terrible that we are made to feel like we neglect our kids when we find ourselves explaining thier condition? I just chalk it up to the huge amount of ingnorance in this world. On the contrary, we are the BEST parents because we are helping our kids.

On Sep 07 2007, Ray Wrote:
Ruth, I generally just tell people that my daughter has to take medication. It is so hard at times. I always feel like people look at her developmental delays are then are judging my wife and I to be bad parents. But we feed her. Daily, three times a day. And it's real food, I promise. She's just small.

On Sep 06 2007, Jennifer Wrote:
Hi,
My daughter Sam was dx’s when she was 4 with GHD has been on Humatrope for over 9 years now and recently she had been diagnosed with Crohn’s disease. Her doctors have removed her from the growth hormone and I am looking for anyone who has similar medical issues.

On Sep 05 2007, Barbara L - GHD Coordinator Wrote:
Hi Lorali,

It's funny but tonight I just yelled at my son for having a smart mouth and attitude. He was never like that before, but then again, he's never been 12 before. He's on Genotropin, so I don't think it's just the Nutropin that's making your child have an attitude. I really think it's just the hormones in general. My son has been mouthing off to us like he has never done before, and it could be that he's just testing us. He's going to fail though,lol. Good luck!

On Sep 05 2007, Barbara L - GHD Coordinator Wrote:
Hi Ruth,

It's a tricky situation when it comes to telling people about your child's ght. Some people will understand and give you support, others will look at you like you are crazy, and say things like "we'll, he/she is probably just a slow grower, did you think of that?" or they'll pass a comment on how it's ok for a child to be small so why are you forcing them to take a shot everyday...

You really have to know and understand who you are telling it to. Through my personal experience, I only explained it to my friends and family who were open minded enough to understand. Be ready for a lot of criticism though from a good majority of the people you do tell. Good luck though. We're here for you.

On Sep 05 2007, Barbara L - GHD Coordinator Wrote:
To anonymous in Fl,

Here is the website address for the Pfizer Bridge program: www.genotropin.com Go to the bottom of the page and you will see link to information about the program. They really are wonderful. Let us know how you make out.

On Sep 05 2007, Jenn Wrote:
Re: Ruth

I know exactly what you mean about not wanting to tell people about your child taking hormones. Besides my immediate family, I've only told a couple close friends and my child's teacher. Very few people understand GHD, and the stories in the media lately don't help at all. To top it off, I'm only 5' tall. I feel like people will think I'm making my daughter take shots just to be taller than me. It is sad we have to be afraid to talk about our childrens' conditions. That is why I'm so thankful for the Magic Foundation. It is great to talk to people who understand. As far as my child not feeling ashamed of her condition, I tell her it is her choice if she wants to tell her friends. So far, she has never felt the need to bring it up. Good luck.

On Sep 05 2007, Lorali - GHD message board moderator Wrote:
Has anyone ever noticed a side effect of getting mean on Nutropin? All of sudden my son is getting horribly mean and hitting and raising his hands at me and his mouth is getting so uncontrollable. Please help me : )

On Sep 05 2007, Ruth Wrote:
Does anyone have any advice about what to tell or not to tell friends about my son taking growth hormones? My best friend says to keep it quiet but I don't want my son to feel any shame about it so I am worried about telling him to be quiet about it. Any ideas?

On Sep 04 2007, anonymous Wrote:
Hi. Can you give me more info on the Pfizer Bridge program and how to contact them my daughter is 7 and has CPP and CAH and has a bone age advancement of 4 plus years and we are trying to get her on GHT because the lupron she has been on for 8 months has slowed her growth to almost nothing but has not stopped the bone age from advancing so we just upped her dose from 11.25 every 28 days to 15mg every 3 weeks and just had some more test done to see if its working yet. We are waiting for test results and hear that it is almost impossible to get the insurance to pay so i just want to be prepared when we do get denied.
Any help would be greatly appreciated
thanks mary florida

On Aug 24 2007, Barbara - GHD Coordinator Wrote:
Hi Susan,

Denying GHT is pretty common on the first try. It happened to us too, but the people at Pfizer Bridge Program were awesome!!! They filed the appeal and got our denial overturned pretty quickly. It was probably the longest week(s)of my life, but thankfully it was approved. The bridge program sent us a 30 day supply, with the pen, needles, alcohol, cooler bag, backpack for my son, etc... They are the best!! Hang in there, I have faith that you will be approved. I'll be away for a couple of days, but I'll check back as soon as I can. Keep us posted, and if you need any help, we're here for you.

On Aug 23 2007, Susan in Florida Wrote:
We learned yesterday that our insurance company denied the GHT. No big surprise there. I already faxed their grievance department and contacted the Bridge Program for help. The doctor will also file an appeal. Surely they know the long-term physical problem a child will suffer without the medication! And it has nothing to do with height!

On Aug 22 2007, Barbara - GHD Coordinator Wrote:
Hi Susan from Fl (aka anonymous)

When my son started GHT last October, in the beginning, he did experience bad headaches. Again, I think the body is just getting used to the hormones it never really had. After about the 2nd month or so, he didn't get the headaches anymore. They weren't constant when he did get them. They would come and go pretty quickly. Keep us posted.

On Aug 21 2007, anonymous Wrote:
Barbara, can you change "Anonymous" to Susan in Florida please? I am following up on my earlier comments on my son who is in the 50th percentile but with a 4 year bone age delay and GHD ...

On Aug 20 2007, anonymous Wrote:
To Barbara L.

My 50th percentile son was prescribed GHT which he began last week. He suffered a series of stabbing-like headaches today, after just five doses. A CT scan showed nothing, so we're hopeful it was some strange something and not meaningful. Have any of you parents had a child with these suddenly painful but short-lived headaches, or is it just a strange coincidence.

On Aug 17 2007, Norm Wrote:
Patty
I feel your pain and your Childs also. My son is 15 and he has been taking the shots for 8 months. He still hates the shots and the bruising but knows that this is his only chance he has to grow before it's over. I would try to maximizing the needle size in diameter, this way the injection process is over quicker. You cannot stop the pinch but you minimize the processing time. Our nurse suggested shots in the stomach area because you have less nerve ends located there.
Best wishes
Norm

On Aug 15 2007, Lori Wrote:
Re: Patty
My son has been on Genotropin injections for 2 1/2 years - we put a small spot of anaesthetic cream that the doc gave us a script for - cover it with plastic wrap and tape for about 20 mins, we wipe off and clean with an alcohol wipe and when we give him the shot he doesn't feel a thing - if we don't have time for the cream - I use an ice pack on the skin for a few mins - this numbs the area and again he doesn't feel a thing! Hope this helps!!

On Aug 15 2007, Susan in Florida Wrote:
Referring to the 50th percentile boy who was GHD, we met with the doctor today who prescribed GHT. We came armed with information regarding future health problems including heart problems and fat metabolism issues should he not be treated. Our preparations were unnecessary. She said with a 4.7 reading and a four-year bone age deficiency, he needed the meds. I will update you on his progress.

On Aug 14 2007, Lorali - GHD message board moderator Wrote:
RE: Patty

Hello Patty
My 7 year old son just started getting injections daily and to he was really iffy and did not want it at first. To help him offered to buy him special band aids to put on after giving the shot (even though it does not bleed all of the time)! That made him feel a lot better and made him feel special because he gets special band aids for taking his injection calmly. Good luck.

On Aug 13 2007, Jenn Wrote:
RE: Patty

Hi Patty. My daughter was 6 years old when she started her GH shots 6 months ago. We also began giving her shots in her sleep, but this back fired, causing her to have anxiety at night. So, I came up with a plan to help her with the injections while awake. I made up a reward calendar. She earns a sticker every night after the shot is over. At the end of each week she gets a treat or reward, like a trip to the park, a special movie, or pancakes for dinner. The chart really seems to help her. She can count the number of days until the next reward. I also find that putting a cold pack on the injection site a couple minutes before helps with any pain. Good luck.

On Aug 13 2007, Barbara - GHD Coordinator Wrote:
Hi Patty,
My son started ght this past October, but he was 11 years old so we didn't have to fight him too much on it. He was extremely hesitant at first because he's always been afraid of needles, but after all of the blood tests and everything else, after he experienced the first shot, he was ok with it. Maybe some kind of bribery would work for a while with your 4 year old? I'm not sure on that one, so if anyone out there has a little one that is on ght and has any suggestions for Patty, please chime in.

As far as fatigue and moods, I can definetely say yes my son experienced that when we first started. He was very tired, had some mood swings, and even had a few headaches at first. After about the 2nd month, all of that did subside though. Remember, thier bodies are getting something that it's just not used to getting and it will take time. Don't worry though, it will adjust :) Hope this helped you a bit. We're here for you, so don't ever hesitate to ask anything.

On Aug 12 2007, Patty Wrote:
My 4 yr old son started GH injections about 1 1/2 months ago. As would be expected, the shots were scary for him at first, but then we seemed to get passed the big hurdle and he was doing well. Suddenly, he seems to have regressed back to not wanting them, and wants to put up a struggle. I did try doing it while he was asleep, but he woke up and that didn't turn out any better. Does anyone have any suggestions as to what worked well for them? I was also wondering if anyone's child experienced bouts of fatigue or fussiness when they first started the injections? It seems like his tiredness could be related to the shots if his body is responding and is growing more than it has in the passed few years.

On Aug 10 2007, Barbara - GHD Coordinator Wrote:
Hi Rob,

I did respond to your post a few days ago, but it hasn't shown up, so here goes again. Yes you are correct, the miniquick does have a small needle. The Saizen is the only system that is needle free. It was very late when I answered this question and my brain was not functioning at full capacity. Thanks for catching that.

On Aug 08 2007, Barb - GHD Coordinator Wrote:
Rob,

You're right. The miniquick does have a needle the Saizen does not. It was very late when I answered so my brain was not functioning at full capacity. Thanks for catching that. I don't want to give anyone wrong information.

On Aug 07 2007, anonymous Wrote:
To Barb and Mary:

Barb you may need to clarify your last statement re: mini-quick and "no needles". My understanding was that the mini-quick does have a needle. The Saizen product "Cool Click does not.

Mary--there is a short discussion going on about which HGH to use on the yahoo listserve


rob

On Aug 04 2007, Barb - GHD Coordinator Wrote:
Hi Mary,

I've heard some really good things about those two hgh, but I also know people that use the Genotropin Mini-quick. You don't have to refrigerate the medication and there are no needles. You might want to look into that as well.

On Aug 04 2007, Meredith Wrote:
To Rob:

Originally, genetics would not see us for the last two years. However, when the 3rd fracture happened I insisted that we see genetics. They ran a few blood tests but nothing that the endo and kidney haven't already looked at. Genetics agreed that no kid should fracture a femur that many times but that was really the end of the visit. Very disappointing and not helpful at all. Which is why we are looking for other doctors around the country to help.

On Aug 02 2007, Rob Wrote:
To Meredith:

we just used a new endo today who we really like. He had an interesting recommendation...would we consider seeing a geneteticist. He said that they might be able to look at all the signs & symptoms and come up with an overall cause or syndrome. Might this help you?

Also you might make sure they checked vitamin d levels...vit d def can cause bone issues esp as the kidneys are integral in vit d production.

On Aug 02 2007, Mary Wrote:
Question? About to start GH for my 16mth old daughter diagnosed with Turner Syndrome... and since they are all the same efficacy/safety... I want to know the easiest delivery system.
I've heard feed back on Nutropin and Nordiflex and am considering starting one of these... Can any of you comment? One over the other? Disadvantages versus Pro's? Any info you can give me would be appreciated. Thank you

On Aug 02 2007, anonymous Wrote:
Response to Rob:
No, we haven't done a bone density scan. No one was concerned with TWO femur fractures but now that the 3rd femur fracture has occurred we are getting a little more response from doctors - mostly the renal specialist. Ortho is still hesitant to do much. He's been in a body cast for 12 weeks and has just started PT yesterday. We have to wait at least 6 months for a bone density scan.

No we are not on IGF replacement. The endo wants to wait several more months because for the last year and a half we can't get the RTA "under control". The docs can't determine if his IGF deficiency and excessive GH, along with his bone issues, are solely from RTA. Renal has another panel of bloodwork pending and then we will look for other specialists around the country and hope they can determine what is going on. Meanwhile Endo will chart his height now that he is out of a cast and can stand - wait four months and chart his height again. If little/no growth has happened, his endo will start a 4 month trial of GH and then move on to IGF-1 replacement depending on the outcome of the GH trial.

As far as growth, he is only 98 cm tall and 33 pounds. He has grown maybe 3/4" over the last year.

Any thoughts are appreciated at this point!
Meredith

On Aug 01 2007, Barbara L - GHD Coordinator Wrote:
I was wondering....how many of you have GHD kids with behavioral problems? My son is 11 almost 12 and he is just seems so laxidazical about everything. As far as school work, he just does the bare minimum and won't try to exceed in anything. Anyone else experience this problem or is it just the age?

On Jul 26 2007, Rob Spiegel Wrote:
RE: Response to Meredith about Perthes DZ from 7/11

Meredith... I'm surprised that the ortho is not calling it perthes but its just a name anyhow. I do know that renal disease can cause alterations in calcium metabolism by altering a hormone called parathyroid hormone, which i'm sure your renal doctor has checked. I would be curios to know if that between IGF and the renal dz your son has advanced osteoporosis. Have they done a bone density scan?

Our son, Alex also has necrosis of both hips left greater than right.
He had only been GH for 3-4 mos. He grew 2 inches. One question raised was did he grow too fast for the blood supply to the bone.

Is your son on IGF replacement? How long? What was the growth rate of your son?

On Jul 23 2007, Barbara L - Magic Foundation GHD Coordinator Wrote:
To Aquino from NYC

Please don't feel lonely and afraid. We're here for you! You're child is not gonna die. I know from personal experience that when you first get the diagnosis, it hits you like a ton of bricks, and then suddenly you start worrying about today, tomorrow, 20 years from now. GHD and all that goes with it, is really complicated, and I found that if the doctor is not a specialist in this area, then they really don't know the right info to give you. As far as the "circus" comment you got, I would switch doctors fast because that was just heartless. Your child is growing, so thats a good thing. My son is growing too, and that's also wonderful, but sometimes with this condition, there are other problems that arise. My son doesn't have a problem with his feet and legs, but he does have a problem with his jaw. It seems to be growing a bit more than his other facial bones and he will need some pretty complicated surgery in about 2 years to correct it. Like you, I flipped when I heard it, but after thinking about it for awhile, I realized that there could be a lot worse things. I know that whatever happens to your child is like the end of the world, trust me, I feel the same way, but everything you are doing right now for your daughter is positive and is helping her tremendously. Like I said, had I not found the Magic Foudation myself, I would have felt very alone too. It really helps to have people who are in the same situation, to talk to. This is a one day at a time process, and it's like 2 steps forward, 1 step back sometimes. Please don't feel afraid and alone, there are alot of us out there for you to lean on.

On Jul 19 2007, Jamie H- The MAGIC Foundation Wrote:
To Derek:
It is always challenging when your child starts out with this. We have some families with Charge Syndrome who you can network with or there is a "group" for Charge Syndrome...not sure how active it is. But if you call the MAGIC office at (708) 383-0808 (after the 24th of July as we are all at our National Convention currently) they can help you contact the other families in our Networking Registry. For the Charge group- Charge Syndrome, http://www.chargesyndrome.org/
Hope this helps!

On Jul 17 2007, Barbara L - Magic Foundation GHD Coordinator Wrote:
To Lori Pfister:

Hi Lori,

I found this website http://www.aace.com/pub/pdf/guidelines/hgh.pdf
It's a lot of medical terminology, but it might help you find what the guidelines are. They do say in one of the last paragraphs that GHT should be continued until the child no longer is considered of short stature. No specifics though.

I also found this info:

FDA (Food and Drug Administration)-approved conditions for treatment with somatropin:
• Adult growth hormone deficiency (including hypopituitarism)
Genotropin, Humatrope, Norditropin, Nutropin and Nutropin AQ, Omnitrope, Saizen, Tev-Tropin
• AIDS wasting
Saizen, Serostim
• Childhood growth hormone deficiency (including pituitary dwarfism and childhood hypopituitarism)
Genotropin, Humatrope, Norditropin, Nutropin and Nutropin AQ, Omnitrope, Saizen, Tev-Tropin
• Chronic renal insufficiency (in children whose height is less than the third percentile for their chronologic age)
Nutropin and Nutropin AQ
• Idiopathic short stature (children with height standard deviation scores of -2.25 or lower)
Humatrope
• Pituitary dwarfism
Humatrope
• Prader-Willi syndrome
Genotropin
• Short bowel syndrome (to lessen the requirement for intravenous nutrition)
Zorbitive
• Small-for-gestational age (children who fail to exhibit catch-up growth by age 2)
Genotropin
• Turner syndrome
Humatrope, Nutropin, Nutropin AQ

Children of short stature
Some parents consider shortness a disadvantage and want their children treated with growth hormone even though their children do not meet the FDA's guidelines for treatment. Currently, the FDA only approves growth hormone treatment for children with height standard deviation scores of -2.25 or lower. Growth hormone treatment for healthy short children is controversial. The National Organization of Short Statured Adults is opposed to the use of human growth hormone for short but otherwise healthy children.

I know this is a lot of mishmash, but I hope it helps you a bit. Much of the FDA wording is really difficult to understand unless you're in the medical field. Some insurance companies really like to make life difficult don't they. If you need anything else, please don't hesitate to ask. That's what we're here for.

On Jul 17 2007, Barbara L - Magic Foundation GHD Coordinator Wrote:
To Susan in Florida,

It's unusual for a child to be in the 50th percentile and found to be GHD. It could be that this is a recent onset of GHD. When my son was younger, he was always in the 50%, then little by little he started falling off the chart. Our pediatrician kept saying, "don't worry he'll grow". We took it upon ourselves to take him to an endochronologist and at age 10 1/2 he was diagnosed as GHD. His numbers were 1.5. He only started treatment last October, but has done beautifully since then. His boneage at the time of the stim was about 2 years behind. This is a very complicated condition, but you are so right, going with your gut instinct when it comes to your child is the best thing you can do. Keep us posted on how things are progressing. Good luck!!

On Jul 17 2007, Aquino from New York City Wrote:
My daughter is 2 1/2 years old. She was born in feb. 2005 and one month later was on meds for hypothyroidism. At six months I noticed she was not growing much especially her feet. Her ped endo suggested a stim test - ghd test - mri - diagnosing her with pituitary aplasia. What the _____ does this all mean, is my child going to die!? After the initial shock and the mean comments of a second opinion ped endo "you either give her ght or sign her up to the circus". My child does not produce any growth hormones so we began the ght in march 2006 and she has grown from 25 inches to 35+ inches. We have been blessed that she has responded well to the therapy. Lately my daughter has been tripping on herself so we took her to see a podiatrist that said her bones from knees to ankles are twisted inward causing her feet to in=toe. Now she needs leg braces. What else is my daughter going to endure. We are still not sure whether or not she will mentruate at puberty, whether she will be able to produce milk for breastfeeding or all other hormones funtioning properly at all. Is there anyone that has gone through this or going through similar issues?......Lonely and Afraid

On Jul 16 2007, Lori Pfister Wrote:
My son is GHD and has been on GH for 2 1/5 years -he has grown 8+ inches. I have been on the Insurance Board as we are having major insurance issues - refuse to pay in 08 - its wonderful - my question is does anyone have any links or info on prescribing GH from the FDA and what the criteria are? I am trying to located as much info as possible. Thanks!

On Jul 16 2007, Susan in Florida Wrote:
I forgot to add, how can he be growth deficient and still be in the 50th percentile? Because he's supposed to much taller than 5'10" (according to his bone age delay - 6'5"). If he were in the 10th percentile, would anyone wonder?

On Jul 16 2007, Susan in Florida Wrote:
We just got back the stim test results on my 50th percentile in height 10 1/2 year old son. His score was 4.7 indicating he is growth hormone deficient. We are awaiting a date for an MRI. So, to recap, I have a normal child with a good bit of belly fat who's shoe size hasn't changed in a year. He has a large trunk area, and I've always said it was too large for someone his size. Instinct told me to ask his dr. for a bone age which showed him to be 6 1/2. Truly, there was no good reason for me to ask, but am I ever glad I did. Parents, listen to your instincts. No one knows or cares about your children as much as you do.

On Jul 13 2007, Derk Wrote:
Hello,
Our son, Jensen has CHARGE syndrome and our end. doc has suggested immediate gh therapy. What advice is out there for a family just starting the process? He is 8, we live in Utah. 1st ins request denied.

Thanks for your help.

On Jul 13 2007, Lora-Joy Wrote:
To: Jamie Harvey

Jamie I will track you down! :):) Thanks again for all of your support. I have told so many people in the last 3 days what an awesome organization this is. I am sure this convention is going to be a great way for me to network and find out valuable information regarding my son's issues. My son is so excited about the convention!! We can't wait!!!

Thank you Magic!!!!!!

On Jul 12 2007, Jamie H Wrote:
TO: LJ

It has been fun speaking with you!!!
Glad you are going to be able to make it to the convention! I am sure we will load you down with information to take back to your child's doc. I am so glad that the doc- too is thrilled about this! Remind me to help you find Jamie S and Meredith...I promise I will forget...so stay on top of me. I get very scattered at the convention! See you soon!

On Jul 12 2007, Barbara - Magic Foundation GHD Coordinator Wrote:
For Susan in Florida:

In regards to your question yesterday, I did some checking around and asked some people who are very knowledgable on all the new information regarding GHD, and the conclusion was that since the doctor knows all of the aspects of your child's body, and because this is such an unusual situation, it would probably be best to follow the doctor's recommendation. Of course, with all of your concerns (and very valid ones), maybe you can get a second opinion to be sure. In such a rare circumstance, the two opinions would probably be the same, but at least you will be hearing it from two different doctors. See what happens with the stim test results and take it from there. Most times, if a child is producing enough gh to be in the 50%, then growth hormone treatments are not necessary. Your doctor is probably covering all of his/her bases in trying to determine why the bone age is 4 years behind. Don't get too alarmed (easier said than done I know). Let us know what happens with the stim test. We're here to help you in any way we can.

On Jul 11 2007, Barbara - Magic Foundation GHD Coordinator Wrote:
To Susan in Fl

Hi Susan. I haven't heard of that one before. I'll forward your question to Jamie and see if I can find anything out for you.

On Jul 11 2007, Susan in Florida Wrote:
My son is an oddity. He is 10 1/2, in the 50th percentile for height, 75th for weight, and yet he has a delayed bone age of 4 years. He had a stim test completed today, but the endocrinologist said that if he fails the test with a 8 or 9, she would recommend no GHT. I think that could be a mistake that could affect him well into adulthood. Has anyone ever heard of a child who's considered normal but is that severely delayed?

On Jul 11 2007, Meredith Wrote:
Response to Rob S. in Alabama:
My son is IGF-1 deficient with Perthes in both hips. He makes way too much GH. His orthopedic surgeons won't say he has Perthes, just "avascular necrosis of both femoral heads". He has also been diagnosed with Renal Tubular Acidosis. However, his renal specialist has never seen Perthes in any of her RTA patients. We are also dealing with three femur fractures (always his left leg) in the last 2 and a half years. My son is 5 1/2 years old now. No one can figure out why he keeps fracturing his femur. I would like to stay in touch to see if anyone else has had similar Perthes/GHD/IGFD combinations.

On Jul 10 2007, Jamie H Wrote:
To: Lora-Joy
We have put your message in the panhypopituitary board as well...this one seems tough to match but we are working on it. Keep your fingers crossed!

On Jul 09 2007, anonymous Wrote:
Hi all,

I am new to this board. I have talked with Jamie several times in the last year and she has helped a lot. We are at a loss as to where to go from here. short history. My son was diagnosed at 6 years old with GHD. We started GHT last June and he has only grown 1 inch. His antibodies were tested and he was sent to a geneticist. The geneticist did many tests even a full skeletal survey- everything is normal.

The ped endo has taken him off of growth hormone and wants to see us back in Septemeber. We would like to put him back on growth hormone and give it some more time to work. Is there something else we should do. My son also has Adrenal insufficiency and takes steroids 3x per day. He is tired, has a weak leg that hurts and tingles and often just doesn't feel well. He is made of at school. He will be in 2nd grade and is the size of a 4 year old. My heart aches for him.

Does anyone know anything about increlex? Is that an option for him?

Has anyone out there had a child with GHD that hasn't responded to treatment?

We are so confused, worried and discouraged?

Please help!

Thanks,

LJ

On Jul 06 2007, Shannon Wrote:
ATTN: Gordon Anthony

Thank you for sharing about your daughter's bone age discrepancy. Could you answer a few questions? Did she have any symptoms? Did she have any irregular lab results? Did she have a stim test? How old was she when diagnosed? My daughter's labs are normal, but we're still waiting on a few. Her brain MRI showed no irregularities. She seems to have some premature breast tissue, but it is not currently developing. Is this at all similar to your case?

On Jul 06 2007, Jamie Wrote:
Response to Ray-
Are you a PR person by any chance? Would love to get PR help for MAGIC! ;-)

On Jul 05 2007, Gordon Anthony - NJ Wrote:
To Sharon on Advanded Bone Age.

My daughter's bone age was 1 year ahead of where she was at and she was started on a once a month injection of Lupron. This started over 1 year ago and she is almost on target now. We are using this along with Genetropin. The only problem was the first few time she saw this shot she freaked out. It looks like a Elephant dart. Very scary for a child but after 4 times it is not a issue for her any longer.

On Jul 04 2007, Connie Wrote:
Response to Jennifer:
Call Sue at the MAGIC office. She can help you with dietary stuff I am sure. She helped me about my son's bone age. She is a nurse.

On Jul 04 2007, Rachel Wrote:
RE: Advanced bone age
I don't know about an advanced bone age without it being precocious puberty. But our doctor did say that sometimes kids do develop earlier than others. And since my daughter did not have any other symptoms (she was a year and a half ahead on her bone age)- he told us to wait. We waited a year and her bone age came closer to her real age. I guess it just depends on the child and how all of the pieces are fitting together. What did the doctor say? Are they going to check her hormone levels?
Good luck!

On Jun 29 2007, Shannon Wrote:
One Child GHD, One Child Advanced Bone Age - Anyone Else?

Hi! I'm new to the board. My 5 yr old girl is on Humatrope for GHD. My 2 yr old girl (almost 3) had bone age this week showing advanced age of 4-5 yrs. She has NO signs of puberty. Labs have been sent out, but we're stuck waiting for 2 weeks. I can't find any information about advanced bone age without CPP. Has anyone encountered this? We hate waiting, and are craving information.

Thanks

On Jun 29 2007, JenC Wrote:
Response to Lisa Mark
Hi! My daughter was recently diagnosed with GHD. I saw your post that your doctor is Dr. Counts. She is my daughter's doctor as well. I would love to talk to you sometime about your experience. Please email Jamie - jamie@magicfoundation.org and she will give you my contact information if you are willing to talk to me.
Thanks!

On Jun 29 2007, Brandy (Daniel's mum) Wrote:
This is a response to Anonymous who wrote on May 22, 2007:

You asked how young is too young to ask for a pediatric endo? Never too young. The younger you get started the better for your child. Do not hesitate. Don't let anyone talk you out of it. If you think there is a problem, get to the pediatric endocrinologist immediately! My child went undiagnosed for nearly 4 years. He should have been diagnosed at birth. Unfortunately, however, I have been told that most pediatricians are not well versed in GHD. My son's pediatrician said things like oh let's wait another six months to a year, as long as he grows two inches then he's just short stature. My little boy didn't even double his birth weight in the first year. The next three years he gained very little and grew less than 2 inches. Three and a half years later, my little boy was still well below the growth charts, no one believed his age, and the pediatrician started talking about steroids. Steroids of all things. You can imagine what I was thinking! Steroids? I don't think so! It was only by a chance meeting at a park that I came upon someone with great knowledge who referred me to the Magic Foundation. Fortunately, also, I was referred to THE VERY BEST endocronologist (I travel hours to see him) and my little boy is growing how he should have been all along.

Do yourself and your child a big favor, get him diagnosed and begin treatment! Shots are not a big deal, there are faaaaaar worse things!

The best of luck to you and your family!

On Jun 28 2007, Brandy Wrote:
For those of you who are terrified to give shots to your newly diagnosed child, I just want to let you know that no one was more afraid than I was. I was convinced there was no way I could give a shot. Please believe me that in no time at all you will be doing the shots in your sleep. My little boy was 4 when he started the shots and he absolutely refused to let me give them to him when he was awake. I had to wait approx. 30 minutes after he fell asleep (at that point he was in a deep sleep) and then give him the shot. Too many times I found myself falling asleep with him. Finally, after three years of forcing myself to stay awake long enough, I pleaded with him to let me give him the shot before he went to bed. It cost me a new Lionel train set! Well worth it! Now he will take the shots before he goes to bed, but only in his bottom! Rest assured, that it absolutely does get very easy.

Good luck to all of you. Have a great day !
Brandy
Daniel's mum

On Jun 27 2007, anonymous Wrote:
RESPONSE TO JENNIFER
Have you tried calling the MAGIC office and asking for the networking? You can also do it online. You don't have to be a member to get help finding another parent. Also the MAGIC-Yahoo listserv is probably a great place to post this same message. Hundreds of families check there too.

On Jun 26 2007, Lisa Mark Wrote:
Hello,
Regarding the bone age....our Pediatric Endo. CRNP told us that a delayed bone age is actually a good thing in our case because it just gives you more time until the bones "fuse" thus giving you longer to "catch up."

I was heartbroken to think that my son at age 3 would be taking GH injections all his childhood. I am a R.N. and still I was thinking..."How on earth am I going to do this?" Dr. Counts from the U. of Md. took me by the shoulders, looked me in the eyes and said firmly yet gently..."You will do this. This will become routine, like brushing his teeth. This is a very treatable condition and you are fortunate." Wow, that was exactly what I needed. A straight forward no nonsense pep talk! I will be forever grateful to her.


For those of you who are starting GH for your child at a young age...we gave our son a toy "shot" from a toy physician kit. He would give us a shot first and then we would give him his shot. As my son likes to say..."easy as pie!"

If you are having a rough time, please hang in there. I was in tears many times over problems with pharmacy, insurance and approvals. I shook my head in amazement that I, an RN who worked for a pharmacy, could not figure out "the system." But I did, with prayer and a mother bear mentality! You can do it!

Our son will be 10 yrs. old in July and is growing at "his" rate. We are pleased with his growth and they say it is likely he will reach his full intended height at about 6 Feet tall. God is good and so are his physicians!

On Jun 26 2007, Jennifer Wrote:
My daughter was diagnosed with HGD 8 yrs ago and recently she had trouble going to the bathroom and we have since found out that she also has crohn's disease. I was wondering if anyone out there had a child with HGD and Crohn's? I need some website help or someone who know dietary issues

On Jun 22 2007, Jamie Wrote:
FYI- MAGIC is working on establishing a new message board for everyone (all disorders) which is about Insurance issues. It should be up next week. If you have questions, personal experiences which you can share to help others-please look out for this Board and post so that families can finally get some real help from those who have been there! If you have a problem, feel free to post it...I am sure you will not be alone!

On Jun 20 2007, Jamie Wrote:
RE: I am so excited
We have a private listserv (much like this but WAY more active). It is on Yahoo. It is private and only available to MAGIC members. If you would like the details about getting signed up- please email me-
jamie@magicfoundation.org and I can walk you through it.

On Jun 18 2007, Ray Wrote:
I am so excited to have found this website. Up to know, I thought my daughter was the only person in the world with GHD. I have never run into anyone else. And most people don't even seem to have heard of it. I'm not really surprised, I never heard of it before our daughter was diagnosed.

Maybe we need a better PR agent.

Anyway, it's nice to have found this site and to know that there are other people that can relate to what our family is dealing with.

Our daughter, Abby, was diagnosed with GHD at 1 year old. At that point, she still hadn't doubled her birth weight, and could not even roll over, let alone walk. She started replacement thearpy in Feb 2006 and the change in her has been dramatic. She is now running all over the place. And has a smile that will just melt your heart.

Anyway, like I said, I'm glad to have found this site.

On Jun 15 2007, Christy Wrote:
Re: How young is too young to see a peds endo
My son has Optic Nerve Hypoplasia and first saw his endo at 3 months old. He has been going for regular visits every 3-6months since then to test his hormone levels. The sooner you find out the root to your children's problems, the better. Good luck!

On Jun 07 2007, Rob S. Wrote:
RE: Perthes disease and ghd

Does anyone have any experience with a child having Perthes DZ while on GH. We aren't getting good info from our local doctors in Alabama. Do you continue therapy, reduce dose, stop????

On Jun 07 2007, Sally M Wrote:
RE: MAGIC Educational Program
I just found out about the educational program for growth hormone kids and am very excited about it. Has anyone ever been to one of these programs before, or is anyone on this group going this year? I talked with Jamie and am doing a yard sale this weekend to go! Thanks for the help Jamie!

On Jun 07 2007, Jenn Wrote:
RE: 4 yr old going for MRI.

This response is for Kim. I understand exactly how you are feeling. My daughter was diagnosed with GHD 4 months ago, at 6 year old. Once the stim test results were in, her doctors also sent her for the MRI. This is standard procedure. This is so the doctor can determine what may be causing the lack of growth hormone (ex. tumor, lesion) and treat it accordingly. We found out my daughte