Precocious Puberty

On Jul 02 2008, susan Wrote:
Hi
My daughter started developing breast buds at age 8. When I brought her to the doctor they said she was fine. Never ordered any tests. so I trusted them. Now my daughter is 12.5 and I brought her to the endo just to check to see if she had hypothyroid. He said that her bone age is 14.5 and she will not grow anymore-She is 4 ft 11 inches and weighs 85 pounds. I wish my doctor would have sent her for my tests.

On Jun 30 2008, Rebecca in Cleveland OH Wrote:
Our daughter first showed signs of puberty at 9 months. She is now 3-1/2 and was recently, after several tested, diagnosed with CPP. The doctor has advised that she should start Lupron Depot-PED shots but we have found out our insurance company will not cover them. My understanding is these shots cost $1900.00 per shot and this is just not in our budget. She is moody and almost impossible at times and we are told that these shots may help. Please have any of you been denied by your insurance company and if so what did you do?

On Jun 28 2008, Leslie Husain (CPP Coordinator) Wrote:
Dear anonymous from april 5th,
It's sounds like your endocrinologist has done all the correct tests. The normal age for breast buds to occur can be as early as 8 years old. My Endocrinologist would not have treated my daughter if she was any older than 8. I think you have done all you can do but that's just my opinion.

Take Care,
Leslie

On Jun 26 2008, anonymous from april 5th Wrote:
We saw our endocrinologist this past week and he says that he does not feel he needs to see our daughter anymore at this time. 2 weeks before her 8th birthday in March she developed a breast bud on her right side and now has some very fine pubic hair. She has always been tall (80th%) but has definitely had a "spurt" this past school year. She is 4'6. Our endocrinologist did a bone scan that came back 2 years advanced. She aslo had an ultrasound that came back normal with no ovarian or uterine growth and no cysts/tumor. He did not feel it necessary to do any bloodwork. He says that because she still has only the very small breast bud on her right side and it has not changed in nearly 5 months and because ethe ultrasound was fine that her primary care physician can examine her at her normal checkups and that he will reevaluate later if he needs to. He says he believes she is still prob. 2 yrs. away from her period. My question is "was this thorough or should I have insisted on more tests?" I left feeling a little relieved and a little concerned too. What do you think? I do not want to err on the side of not getting the right tests or asking the right questions....

On Jun 20 2008, alexandra NJ Wrote:
hi my daughter is 5 years old and she got her period for the first time last month and she got it again this month... we saw the endocronologist and they did all the testing and now they gave me the choice of lupron or supprelinLA... Were going toward supprelinLA. Does anybody have any info on supprelinLA?She's also had many mood swings since she was two years old. We thought it was because she has other complications like hydrocephillus that was causing that. Im glad i found this site..

On Jun 16 2008, Helpless Wrote:
Man it is such a comfort to hear you parents... My daughter was diagnosed with CPP about a year ago. She is 91/2 and like many of your children she has an endless appetite, great mood swings and although they tell me her levels are good her breast are continuing to grow (36C). I agree this children have the strength to deal with just about anything we can throw at them. Sometime it is me who doesnt. I miss my little girl. She doesnt smile like she used to. She used to be one of the happiest kids you would ever meet and now she is so moody and angry. I too thought the lupon shot would help with that. But like you i am seeing the moods increase as it becomes closer to her next shot. How do i help her??? Does anyone know does the weight gain and mood swings level out again once these shots stop?

On Jun 07 2008, Jessica/Oklahoma Wrote:
Dear Concerned (from May 25th),

No, I have not read that fluoride is a cause of PP. It is simply something that we observed--twice. It seems right for US to watch the fluoride. There is so much research that still needs to be done. I personally feel that fluoride (for anyone) is helpful for teeth, but not for the entire body (based on what I've read--you might want to google it). Emmy visits the hygenist every three months instead of every six just to make sure, and I request no fluoride treatments there. We do use fluoride toothpaste, which she spits out. My decision to halt major sources of fluoride is individual.

On Jun 04 2008, Michele in California Wrote:
Mary-Thanks for the information!It is somewhat of a relief to hear from someone who is having a similar experience and I'm glad to hear your daughter's growth has slowed. My daughter's Doctor hasn't mentioned the possibility of increasing the frequency of her injections to every 14 days. I will ask about that at the next visit.Her most recent labs indicate a rise in her LH, FSH and DHEA levels, not by much, but obviously we want them to go the other way. I'm still waiting on the estridol results. She also had a skeletal survey which was normal. I just wonder what the overall effect will be on their actual height considering the rate they are growing.

On May 27 2008, Mary from Florida Wrote:
Dear michele we too have had the same experience My Daughter Started treatment when she was 6 and she is 8 and in the beginning of treatment we too thought that her bone age would also slow down or stop. But instead it kept advancing. We started on 11.25mg every 28 days then went to 15mg every 3 weeks and her bone age and symptoms of PMS were still present so our doctor changed her dose again and now she has been on the 15mg every 14 days. I think she is supressed enough but not completely. Her bone age is still advancing but now its 6 months for 6 months instead of 1 yr or more every 3-6 months. When my daughter was 6 her bone age was 10 now she is 8 and her bone age as of 3 months ago was 11 1/2. We will check it again in 2 weeks at our next doctor appt. Hope this help with your question.

On May 25 2008, anonymous Wrote:
Dear Jessica/Oklahoma,

I hadn't thought about fluoride as being an endocrine disruptor.

We live in a rural area and my daughter takes fluoride tablets because our water is not fluoridated. The dentist tells us this is an absolute must for my daughter to take the tablets. We only moved into this area 2 years ago and that is when she began taking the tablets.
Have you read specifically anywhere that fluoride can be a cause of precocious puberty and advanced bone age. My daughter's bone age is advanced by three years and she has other adrenal symptoms.
Thank you,
Confused/Concerned

On May 24 2008, Michele Wrote:
Hi! My daughter is 5 and she has been on Lupron for the past year. She is on the highest dose every 21 days but yet her bone advancement continues and her estridol level is finally pre-pubertal. Additionally, her LH level is still not supressed. She had a years worth of growth over the last 6 months at her last check-up which puts her bone advancement at 3 years. Has anyone had a similar experience with their child? I'm wondering if there is something else causing the continued growth or is this the case with a number of children with CPP. Any information would be appreciated.

On May 20 2008, Jessica/Oklahoma Wrote:
Dear One Day At A Time (from May 8),

Thank-you for your kind words! We have finally decided not to pursue any more testing (or treatment with GnRH agonists) for our daughter.
We feel that no treatment is the safest course of action at this time.

Yes, I also think that CPP is genetic. However, I think that it is possible for it to be modified by environment (organics, no growth hormone, avoiding "endocrine disruptors," etc.). In fact, on two occaisions, we have noticed a significant increase in our daugther's maturation shortly after she received large amounts of fluoride via dental treatments. Whether that was conincidental or not is an interesting point.

The fact that your daughter did fine without treatment gives me hope that if I can put off Emmy's development a little bit, she might do as well.

We thank you again.

On May 12 2008, anonymous Wrote:
Denise,
My daughter's endocrinologist told us the field is looking at patterns of "catch up growth" (Whether they catch up to chronological age quickly or over course of years) in preemies and SGA as potentially triggers for early puberty. I

On May 09 2008, Denise Wrote:
Hello,
My dtr has just turned 6. She has body odor , breast buds and very fine under arm hair. It looks as though she is going into early puberty and I will get her tested next month at the genetics clinic. She is under a geneticist because she was small for gestational age at birth. For years she was very small and is still on the small side but has grown a lot in the last year. Has anyone heard of a link between being small at birth and PCC? Also does anyone think her growth spurt could account for the signs of puberty.

Many thanks

Denise in London

On May 08 2008, One Day at a Time Wrote:
Dear Jessica/Oklahoma (post Apr 30)
In response to your question, no daughter has not experienced ANY behavioral or emotional issues from early puberty. In fact, she is a very strong person. Similar to your daughter, she is mature for her age. My daughter’s bone-age tested out as being 2 years past her actual age. We have had MANY conversations about her CPP and we are very open with one another. The only behavioral and emotional issues I see right now are the NORMAL (pre)teen things such as mood swings, etc. As far as her height, she is fully aware that at 4’11” she has reached her maximum height and is fine with it. I have always made it a point to let her know that height has nothing to do with a person’s potential, and make it a point to stress that when we come across an adult of short stature (my brother recently had bypass surgery and his female surgeon actually stands on a stool to perform surgery). In regards to a physicians recommendation to start Lupron – this decision should be made after careful and prayerful consideration by YOU. Do not let society or physicians talk you in to what is “normal” and scare you with what physical and emotional scarring they will have to endure if you do not administer Lupron. I have ABSOLUTELY no regrets about taking my daughter off Lupron, but I do have regrets from ever having given it to her. This is a decision that only YOU can make. My daughter is having a good childhood. She has many friends, does very well in school, is active in youth programs, loves to sing and perform, and is looked up to by many of her peers (and actually envied by many of her girlfriends who WANT their period). When she was on Lupron, I did as much research as possible, but was never satisfied as far as the lack of long-term side effect information. I will advise you to think LONG AND HARD before taking that route. The odd thing is, when I discontinued the injections – I never received a call of concern or any other call from her primary physician or her endocrinologist!!! When it was brought up with her primary during her annual physical, they simply asked if she was still taking Lupron, I said “no” and they made a note in her chart – no questions asked. Strange.

I would also like to point out that, despite what her endocrinologist told me, I believe that CPP is, in fact, inherited. My husband’s mother (now deceased) began her period at age 5 and had an adult stature of 4’11” like my daughter. She had a normal childhood and adult life, married, had two kids, etc. In addition, I have a son who has (undiagnosed) CPP. Being my firstborn, and a boy, I was not totally aware of what was normal/abnormal as far as developing a bit earlier. Like my daughter, he is slightly shorter than most of his peers. Now age 17, he is 5’3”. He handles it well and I make sure, like my daughter, that I stress that height does not affect his future. And fortunately, he has several men he looks up to that are also of short stature.

So, Jessica, as I mentioned – DO WHAT YOU FEEL IN YOUR HEART IS RIGHT. Do not let society, relatives, friends, and especially physicians tell you how to raise YOUR CHILD. Why let your daughter be a test for a relatively new drug with no KNOWN side effects (infertility, cancer, etc.). I wish you and your daughter the best as you learn together through her journey.

On May 05 2008, anonymous Wrote:
hi jessica libby will be having her fourth injection soon she has them every ten wks so she not been on them that long.her mood swings are abit better on treatment i always know when she is due her injection cos her mood swings get worse a few weeks before.has your daughter had mri scan.how is your daughters growth is she big for her age.does she eat alot.my daughter has only just started with being hungry all the time before she never ate much but now we cannot fill her.and she is having a big growth spurt she had grown over 5 cm in 5mth and then when we went for mri she had grown anougher cm in 6wks i got her some new shoes 4wks ago for my wedding tryed them on her and could not get her feet in them had to take them back.i know what you mean about being forward for her age cos libby is i wish i had a pound for every time someone said that she was forward for her age.thanks

On May 03 2008, Jessica/Oklahoma Wrote:
Dear linz,

Yes, your response is helpful. Our daughters are close in age. Emmy (sometimes, not often) has mood swings like you described. Her last stim test was OK--thank God--and I attributed her mood changes to fatique or hunger. I will pay closer attention to them. When did your daughter start treatment? I take it that Libby's mood swings did not start with the medication? It would be nice if the medication helps to stabilize her moods.

To clarify my earlier post, we love our pediatric endocrinologist. It's just that most of our testing has been done locally and the results were communicated to him. I am not too sure about the accuracy of our small-town hosital, so I wonder about the information that is given to our specialist. At least he does our stim tests personally! I am just looking for a medical facility--that can handle this. Our doctor is great, although I personally agree that "two heads are better than one" in almost every situation.

On a different subject, has anyone seen any differences in their child with CPP using organic foods or other lifestyle changes? We are seriously thinking about removing potential "endocrine disruptors" from my daughter's food, just to see if we can alter the course of her problem, and avoid medication for longer.

On May 02 2008, linz Wrote:
hi jessica just like to say my daughter is on treatment for early puberty she was 4 in feb just to answer your question libby has mood swings one min she is angry the next she is crying for no reason libbys nurse asked me if there was any pattern to the mood swings but there is not they just come and go we have had alot of tears at nursery she will just start crying for no reason.hope this helps

On Apr 30 2008, Jessica/Oklahoma Wrote:
Dear One Day At A Time from April 29th,

Your post was interesting and helpful. I would like to ask if your daughter experienced any behavioral and/or emotional issues from early puberty? Our Emily is only five, however she is quite mature, and seems happy despite what has happened. Also, I am not too concerned about her height right now, as she is growing normally.
I am leaning towards not treating (if possible) because of the long-term concerns--on which information is more available than in the past. My daughter is reserved and quiet by nature, but I want her childhood years to be good, too, and I know I might not be able to have it both ways. Thanks for any input.

On Apr 30 2008, Jessica/Oklahoma Wrote:
Hi,

We really like our pediatric endocrinologist, however he is the only physician near us, and, as I understand it, trained most of the rest of the specialists in the other part of the state. Also, my local pediatrician said that the pediatric endocrinologists all specialize within the speciality now. We are considering seeking a second opinion only for the additional input. Does anyone know of a really good medical facility that evaulates CPP children more or less regularly?

For "One Day At A Time": I have spoken with other women who tell me that running and jumping were uncomfortable enough for them to consider breast reduction surgery. Albeit your daugther is young, and perhaps you do not want surgery right now--maybe a special sports bra, would be helpful.. Perhaps a larger-breasted woman could give some personal insights. My pediatrician had some useful suggestions for us. It can't hurt to check around!

Thank-you to anyone who can help with a good medical facilty for further evaluation/more input.

Thanks to anyne who can help with a good medical facility

On Apr 29 2008, Lori-KY Wrote:
Hi, new here and looking for some others who have used the Suprellin LA implant for CPP.

My daughter just shy of 5 began developing pubic hair. We did some basic testing through a local OBGYN who was seeing her anyway for a labial mole removal. Only her estrogen was slightly elevated, and Bone Age came back as 6 yrs 6 months, albeit read by a radiologist who seldom does Bone Age interps. (rural hospital) We were referred to an endocrinologist. When we finally got in to the endo 3 months later, she had developed breast buds and underarm hair also. She was 5yr 2mo at that time.

Addominal U/S showed enlarged uterus and overies. Stim test was positive, and Bone Age study done at that time and read by someone more skilled in that process came back at 7yr 10mo. MRI was negative.

Suprellin LA implant was placed last Tuesday. So far so good. We see the endo back in about a month. They will do a mini stim test at that point.

I'm interested in talking to some others who have had the Suprellin LA implant 6 months or longer to hear what their experience has been, and what kind of followup has done with their child.

Thanks!

On Apr 29 2008, Jessica Wrote:
Hi,

Over the past two years, our 5-year-old daughter has had most of the tests--including a second stim test last week, which I expect to be positive--for CPP. I have no doubt that the Lupron will do what it's supposed to, however I am very, very concerned about the long-term effects of this type of hormonal treatment. There do not appear to be any studies about this, that I've found so far. I'm completely not sure which way to go. Is NOT treating CPP possible at all? Or, would anyone be willing to share their child's experience years after the treatment was stopped, specifically about fertility, osteoporosis, etc.?

On Apr 29 2008, One Day At A Time Wrote:
My daughter was diagnosed wtih CPP at age 7. She took Lupron for about a year, but I was second-guessing myself at every appontment - whether there would be long term effects (her ability to have children), etc. So, I had the treatment stopped. She started her period at age 8 (and handles it like most 13-years NEVER could - I am so proud of her). I believe she's reached her full height (4'11") since she's been this height for nearly 2 years.

My question is about breast growth. This is one area that I have seen significant and constant change. She is now 12 and wears a 34C bra - which she's been in for about 6 months and is really ready for a 36C or 36D. She is not a large girl - this is ALL breast. It does not bother her, except if she has gym and is required to do running, jumping, etc. and there are guys in the class. Other than that, and shopping for clothes, it does not seem to bother her and she handles it just as well as when she first got her period.

My question is - Is this normal for kids with CPP? Her pediatrician does not bring it up during routine physicals, and I hesitate to bring it up in front of her and let her know of my concern (and possibly make her scared or worried). Has anyone ever experience this issue?

Thanks so much for ANY input ! !

On Apr 29 2008, anonymous Wrote:
Hi Leslie

Can you share info on your daughter's height?
How tall was she when she started Lupron? How tall when she was taken off Lupron? And how much further growth from the end of Lupron to her final height? My daughter,9,advanced bone age of 11, CPP, on Lupron, is in the 10th percentile for height. Just curious about growth patterns. Thanks

On Apr 28 2008, Leslie Husain (CPP Coordinator) Wrote:
Hi Linz,

Tessa is now 17 years old and 5'7". Her Pubic hair growth and breast developement continued to advance throughout her treatment.
Her bone growth did stop and she didn't start her period early. Tess started treatment right after she turned 8 and stopped right after she turned 10. She didn't get her period until 12 and not monthly until she was 14.

I don't think Tess has had any symptoms due to her pituitary adenoma.

Good Luck to you and your daughter.
Let me know the results of the mRI.
Leslie

On Apr 28 2008, linz Wrote:
hi leslie i will ask more questions when we get the results but i know when the dr said what it was he did not say cyst he used adifferent word.libby had mri just over a week ago so it should not be long now.how old is your daughter has the treatment slowed everything down.the dr said the same about libby that what ever it is a cyst or what ever he did not think it caused the early puberty he said there was no way of finding out if it caused early puberty or not.but it does make you wonder if it is causing it but i guess we will never know.has the micro caused any problems thdey told us to keep a eye on vision and headaches.thanks for advise

On Apr 26 2008, Leslie Husain(CPP Coordinator) Wrote:
Anonymous from April 5th,

I think with a ultrasound they do check the size of the ovaries. the GnRH test is blood test that takes a few hours. They inject a substance( I don't know the name) and then draw blood at specific times. They are checking to see if the pituitary is active or not.

In regards to how our family and friends handled Tessa's CPP. I didn't keep it secret but we didn't tell everyone we met either. I felt I had to tell the school nurse, just in case. It just never was much of an issue. Her friends just knew that she had developed earlier than them and ,to tell the truth, they were a little jealous of her. I'm a pretty open person and I think my daughter has inherited that from me.

How did all the tests come out?

So sorry it took me so long to respond. I must have missed your post.

Peace,
Leslie

On Apr 26 2008, Leslie Husain(CPP Coordinator) Wrote:
Dear Jessica,

Do you mean CPP or PP? If you mean CPP, yes I have heard it diagnosed in patients as young as your daughter. Just wait until you get the rest of the tests done, then you can move on from there.

Hang in there.
Leslie

On Apr 26 2008, Leslie Husain(CPP Coordinator) Wrote:
Hi Linz,

My daughter had a 4 by 9 Microadenoma in her pitiutary. They founf it when they did a MRI on her. They found it to be of no significance. They informed me that 5% to 10% of the population is walking around with adenomas in their pituitries but don't know it unless they have had a MRI performed. Don't hesitate to ask your Dr. what they found in your daughter's MRI and how to spell it. Ask the Dr. to explain how these MRI results will affect your daughter. Then go home and google it, look up information on it.

Parents are their childrens best advocate.

I thought that cysts were usually fluid filled and don't usually cause much problems.

Hope fully this has helped. Let me know what her new MRI results are.

Peace and Blessings,
Leslie

On Apr 22 2008, linz Wrote:
hi they are not sure if it is cyst or what it is we only just found out threw our nurse that there is some kind of thickening and it is not on the pituitary it is between the pituitary and the hipothelmus soory dont think i have spelled it right so hope you know what i mean.she has just had anougher mri we waiting for results they also found some signal changers to the temprol lobe but they not sure what they mean.i know when we went to see dr wright he said to the other dr that libby needed a mri scan and he said cos she has a small and i am sure he said something that begin with m and i thought is that drs word for cyst but they never seem to give you the words they use but i can not seem to find anything on cysts everything seems to have a different name.libby started with breast development her overies are bigger than what they should be she gets discharge every so often.she has sleeping problems tryed melatonin did not work.thanks

On Apr 21 2008, Leslie Husain(CPP Coordinator) Wrote:
Hi Linz,

Is it a cyst or an microademo on the pituitary?

Leslie

On Apr 20 2008, linz Wrote:
hi just found this site my daughter who is just 4 is on treatment for early puberty.she had mri scan a year ago and has just had anoughter one waiting for results.just wondering if anyone whos child has had mri and got a cyst on pineal gland and they think there is a cyst on pituitary gland they said there is some kind of thickening cos i can not seem to find any information or any other children that has a cyst on pituitary if so would love to hear from you.thanks

On Apr 20 2008, Jessica- VERY concerned Mom Wrote:
Dear Leslie or other parents.... My daughter is 6 months old and we are patiently waiting for the blood work to come back so we can move forward. her endo suggest that she has pp. rapid growth spurts, full pubic hair, breast buds, body odor, swollen pink genitals. All within the last month. Waiting for blood work to move forward with Xrays, ultrasound and MRI. Has ANYONE heard of pp in such a young infant?????? My endo is very concerned and has given me her direct # just in case her period starts while we are waiting..... I'm a bit overwelmed and had never heard of this until I sat with our Endo... Any advice or guidance would be kind. Thank you

On Apr 18 2008, Karen Wrote:
Hi everyone. my daughter is 8 and has been on Lupron injections for 8 months now, and they just go her hormone levels to a normal range. I have been reading the message board, and have gotten a lot of great information on here abut the physical side of CPP. Thank you for letting me know I am not alone! My question is about the emotional/psychological side of CPP and if anyone has had similar experiences like mine. My daughter has always been moody, even when she was a toddler, but she is doing things that concern me, like writing a letter to a boy in class to tell him she likes him but not to make fun of her because she is sick but her mom makes her go to school anyways. Also, that her baby cousin died and that she is pregnant. (None is true, of course.) We started going to a psychiatrist she stated her behaivior is what she would expect from a 6th grader. She is in 3rd. She also seems to have trouble staying friends with girls her own age, even though she has know them since kindergarten.

Please let me know if there is anyone out there who has had similar situations. My daughter has done other things that have concerned me that I thought I would not have to deal with until she was in her teenager years.

Thank you for your help!

On Apr 17 2008, Leslie Husain(CPP Coordinator) Wrote:
Dear Confused/Concerned,

I totally understand your concern. They did find a adenoma tumor in my daughter's pituitary and felt that it had nothing to do with her early puberty changes. They informed me that 5% to 10% of the public is walking around with these types of tumors and they would never know it unless they had a MRI performed.

In regards to Lupron studies, I don't know of any. But if you find any I would surely appreciate it if you could post it here.

Good Luck with your daughter and deciding on treatment.
I believe in educating yourself and going with your gut feeling. That has always worked for me. Parents our their childs best advocate.

Peace and Blessings,
Leslie

On Apr 10 2008, anonymous Wrote:
Dear Leslie,

My comments on April 3rd were absolutely not meant to offend you or anyone else who has chosen Lupron as a treatment for their child. I understand that you would only do what is in the best interest of your child as would anyone else writing on this board, including myself.

I only ask these questions as part of my research as my daughter continues to have testing and using Lupron may become a topic of discussion with her doctor.

And as we've been going through the testing that the doctor has ordered, I am grateful beyond belief that no tumors or structural abnormalities, or serious conditions have been found related to her 3 year advanced bone age, advanced height and adrenal puberty symptoms. Going through the testing has been emotionally agonizing, yet studded with moments of enormous relief as tests come back normal.

If it ends up that all we have to be concerned about is protecting her height, at the end of the day I'll take it happily over some of the other options that have been presented.

I am just trying to gather current information about Lupron to be as certain as I can that it is safe both in the short and long term.

My biggest question is, "What kind of data is out there about the long term hormonal and reproductive health of young women who have used Lupron or another drug that functions similarly during childhood? Have there been any studies? Also, how long has Lupron been in use?"

It seems that I am not the only one who is wondering about this (ie. July, February 10).

As always, I appreciate any information that you can provide. And I am grateful to you for extending yourself to help parents like me who are trying to find honest answers.

Confused/Concerned

On Apr 10 2008, anonymous from April 5th Wrote:
Thank you, Leslie. We will be having her ultrasound Mon morning....what exactly are they looking for? Is it the size of the uterus and ovaries? Also, what can you tell me about the stimulation test? What does that involve and what are they looking for? One more thing... how did your friends/family treat you and your daughter concerning this? Or was this kept private?

On Apr 09 2008, anonymous Wrote:
Hi,This question was never answerd and i myself is wondering.Does anyone know??????
Can you provide any information on the use of Growth Hormone with Lupron? Once Lupron is started does height growth generally stop? On the growth charts my daughter is in the 10%. She's received her 2nd month of Lupron. I'm curious if the decision to start growth hormone is based soley on growth hormone levels?
Thanks so much!

On Apr 08 2008, Leslie Husain(CCPP Coordinator) Wrote:
Dear Abi,

The endocrinologist may not order any additional tests. Most Dr.s feel that puberty signs after the age of 8 years old are normal. One test the Dr. may order is a GNRH test which checks to see if the pituitary is shut down or not.

Good Luck at your appointment. Let us know if you have any more question.

Take Care,
Leslie

On Apr 07 2008, Leslie Husain(CPP Coordinator) Wrote:
Dear anonymous from April 5th,

The Lupron injections are administered once a month. We used a patch with Emla Cream on it a hour before to help numb the skin where the injection was going to be given. That helped a lot. I think there is a injection pump out now but I am not familiar with it. My insurance did cover all of the injection up until my daughter turned 10 years old. She did not have any side effects from the injections.

I hoped this has helped answer some of your questions. Maybe someone else can write in about the injection pump.

Take Care,
Leslie

On Apr 07 2008, anonymous Wrote:
My daughter turned 8 in December. Recently she started developing breast bud and there some underarm hair as well. Also she started having body odor. She has always been in the 50th percentile, both height & weight wise, and there is no drastic change in that.

Our pediatrician did the bone age testing and some blood work and both came back normal. He referred us to an Endocrinologist to make sure everything is fine. We'll be meeting her only in July. I'm very concerned that if everything is normal, why she is showing signs of puberty. What type of testing does an Endocrinologist do to find out if it is CPP? Appreciate any input.

Thanks,
Abi

On Apr 05 2008, anonymous Wrote:
We saw an endocrinologist this past week and had a bone scan. Our eight year old who is very tall for her age has a bone age of ten and a breast bud on her right side. So far no signs of pubic hair or underarm hair but some occasional body odor. We will be having an ultrasound in a couple of weeks to check her ovaries and uterus and will also have a stimulation test done. The doctor mentioned that treatment may be in her future...Can anyone tell me about this? How often are the shots? Are they very painful? Side effects? Cost and insurance coverage? I would greatly appreciate any information you can pass along!!

On Apr 04 2008, Leslie Husain(CPP Coordinator) Wrote:
April 03,2008,

No this Message Board is not sponsored by the manufacturers of Lupron. This Blog is supported by the parents who have children who have been through or are going through CPP. We don't decide on Lupron treatment just for the height issue only. There is also the early menstration, the early breast and pubic hair developement. Early breast developement increases chances of getting breast cancer later on in life. And all of the emotional issues that all those early changes bring. We, as parents of children with CPP, don't take the decision of starting our kids on Lupron treatment lightly. My daughter did not want to have her period at 8 years old and she also wanted to be as tall as her mom. She didn't quite make it to 5'9" but she did make it to 5'7". To her that was a whole lot better than being abnormally short,under 5' tall. Most of the girls that are diagnosed with CPP also develope a weight issue due to there condition. Without the additional height they would remain over weight and may develope additional problems.

These are some of the reasons why my daughter and I decided to have her go on Lupron treatments. It's for each individual family to decide whether Lupron Treatment for CPP is right for them. Hopefully my daughter will grow up and have as many children as she wants. Hopefully the choice my daughter and I made, 9 yeras ago, won't affect her negatively. I love my daughter with all my heart and soul and I would never subject her to a substance that I felt in my heart would damage her. I went with my gut, with my research(on Lupron)and with my faith and made the decision to start my daughter on treatment. I'm at peace with that decision.

Peace and Blessings to you.
Leslie

On Apr 03 2008, anonymous Wrote:
My question is the same as February 10th Julie's question. Is Lupron really safe?? What are the long term effects?? Will we find out later when these children try to become pregnant that we caused problems for them by giving them hormones??
If it means that or height, I'd rather my daughter have short stature and be a completely healthy female??
I have found this site to be incredibly helpful and informative and I am appreciative to be able to access it, but I also wonder if this site is supported by the manufacturers of Lupron.
I'm really hoping to hear that that is not the case and Lupron is completely safe.

Please advise,
Anxious from the November posts.

On Mar 21 2008, emotional mom Wrote:
my daughter just turned 3 and 1 week later got her first period. we were actually having her monitored for precocious puberty. she had elevated hormone levels, advanced bone age and her ultrasound showed thickening of her uterine lining and breast buds but.... we opted to wait longer before treating because of her age. So we waited 3 months and repeated the scan and blood tests and were waiting for results when she got her period. so now we are waiting for the insurance company to approve the lupron shots but i am worried that it is too late to help with her height and it appears from reading o n this site there is mixed reviews. i am also interested in the yearly implant. my other concern is that the mri showed a small pineal cyst which i am concerned is affecting her pitutary gland or that it isn't a cyst and is really a hormone secreting tumor that got caught in the early phase. so we are having another mri done. so any input would be appreciated.

On Mar 15 2008, anonymous Wrote:
Hi,
Can you provide any information on the use of Growth Hormone with Lupron? Once Lupron is started does height growth generally stop? On the growth charts my daughter is in the 10%. She's received her 2nd month of Lupron. I'm curious if the decision to start growth hormone is based soley on growth hormone levels?
Thanks so much!

On Mar 06 2008, anonymous Wrote:
My understanding is that the male hormones that cause pubic and underarm hair are not regulated with Lupron. Only the female hormones are controlled. For my daughter, her breast buds did subside, but the pubic hair,underarm hair and body odor all remained. She has not had her period, and she was diagnosed 3 years ago.

On Feb 21 2008, Leslie Husain(CPP Coordinator) Wrote:
Dear Anonymous from Feb 19th,

With my experience with my daughter she had pubic hair and breast buds and they continued to grow through out her treatment. I thought the puberty signs would regress or atleast stop but they didn't. She never got her period and her growth plates stayed open during her treatment. Her height now is 5"7" so I believe even though her puberty signs adavnced, the treatment was a great success.

Leslie

On Feb 19 2008, anonymous Wrote:
My seven year-old daughter is on the autism spectrum and has been diagnosed with CPP. She just received her second Lupron injection. Following the initial injection, puberty was actually exaccerbated. She experienced spotting and intensified pubic hair growth. My physician said that downregulation would occur within two to three months. Since breast buds are small, we're confident that they will shrink to a pre-puberty stage. My question is, will the majority of pubic hair disappear? Sincere thanks to all with information.

On Feb 11 2008, Eric in Texas Wrote:
I am so glad to have found this resource and hope that you can help. Our 11 year old son has been diagnosed with early puberty. His endo had recommended Lupron Depot PED 15 mg monthly to allow our son to reach his full height potential. We are small business owners and buy insurance from BCBS TX. Our plan caps prescription drug benefits at $3,000 per person so we are looking at around $15,000 in out of pocket expense per year. I am asking for suggestions for minimizing the expense of this therapy. Are there low cost sources for this drug out there?

On Feb 10 2008, anonymous Wrote:
My daughter will be 8 next month. She had Hepatoblastoma (liver cancer) when she was three. One of her chemo's caused CPP. She has pubic hair and breast buds. The endo. wants to start Lupron shots. I have done my research, talked to parents of other children taking the shots now. I have not found anyone that there child has been off of the shots for a few years. I am very concerned about long term side effects. It seems as though no one knows what they are. Does anyone here know?
Julie

On Feb 08 2008, Leslie Husain(CPP Coordinator) Wrote:
Dear Md. Mom,

I think you also should be looking for hair under your son's arms and also for pubic hair. His genitalia should also be enlarged not the normal size for a boy of his age. Those are some of the signs they look for in boys suspected of having CPP.

Hopefully this has helped. Just write again if you have any additional questions. I check this board nearly everyday.
Take Care,
Leslie

On Feb 08 2008, MD Mommy who is Now Officially Worried Wrote:
I can't believe this is even a condition! My son is just shy of 6 years old and to be honest, we have always sort of marveled at...and perhaps even celebrated his height.

That said, that sort of Motherly "?Something?" has had me a bit concerned lately and I'm afraid that my son seems to have most of the symptoms or warning signs. Obviously nothing is certain with my speculations but I'll be making an appt for him tomorrow!

Again, he's five years old (will be six in April) and since birth has always been above 100% on the growth chart for height...typically in the 90 to 100+ percentile for weight. He's 51" and weighs 63 pounds. He's always had a deep voice. Since he was 4 we've noticed under-arm body odor and he's had his own stick of deoderant since he was 5. I don't know that I'd say that he has acne...at least not like I did when I was a teenager, but he does tend to have 1 pimple on his face -- almost always. He also does seem to have a thin/light "mustache" coming in--but I never thought much of that because my husband had a true mustache in 5th or 6th grade. Finally, beyond his size, he has a rather mature appearance to him...most people judging strictly on appearance guess him to be AT LEAST seven, often eight.

His height is a bit stunning and unexpected to us, I am 5' 7" and my husband is 5' 10". My parents are also of average heights, and you have to look to my mothers' brothers to get over 6'...but no taller than 6'2". My brother (my only sibling) is 5'11". I also have a 3 year old son who is in he 60th percentile height wise and does not exhibit any other symptoms. Point being, the internet height predictors predict my son to reach 6'4" to 6'6" which is a shocker when considering the family tree!!!

I am wondering--since my son seems to have SO MANY indications--do you think there's any chance he's just gonna be a big guy with sweaty pits and a fuzzy face...with no PP diagnosis? There's not many posts regarding boys here, but what behavioral "symptoms" could I look for? Also, if he does have it and we go with the treatment...are there any common follow-on conditions to be expected past his puberty?

Thanks so much

On Feb 05 2008, Sherra, CPP coordinator Wrote:
To Chrissy and worried sick, please just keep pursuing with an endocrinologist. Often the pediatricians don't recognize CPP. I've also seen where the first endo visit says everything is fine, and at a follow-up months later, CPP is confirmed. If it doesn't seem right to you, it probably isn't. Trust yourself.

Worried Sick, the issue with your almost 8 year old daughter is that, from my understanding, 8 is within the normal range of puberty. However, we have seen Dr's. put 8 and even 9 year olds on Lupron. It's a case by case, Dr. by Dr. decision. You say your daughter is in the 85-90th% in height. That's not really enough information because 10-15% of girls that age are the same height and most do not have any issues. Height in and of itself doesn't give you any insight into whether she has CPP. The real key is to have the blood work and bone age testing done. I would definitely go to an Endo. to get an opinion.

?s to ask:
Is she ready to go into puberty from an emotional standpoint?
Will Lupron (or other drug) give her more time to grow? We know she is tall now, but if she doesn't have much more time to grow, what will her current projected height be compared to her normal projected height? For example, my daughter's normal projected height would be 5'9", but if she wasn't treated with Lupron, she would've been 5' (give or take 2"). Now, with Lupron, the Dr. thinks she'll be around 5'8" (give or take a few inches).

We are very happy with delaying our daughter's purberty both from an emotional standpoint and growth perspective.

On Feb 04 2008, worried sick Wrote:
HELP!! My dd is 7 years old (will turn 8 next month) and is showing signs of early puberty. She has a breast bud on her right side and has also just started showing signs of pubic hair and body odor. We saw our ped. today, and I felt totally dismissed. He said this was all completely normal. It just seems so early to me!After reading through some websites and your posts, I am wondering if we should see an endocrinologist. Oh! She is also very tall for her age..always in the 85-90th%. I would greatly appreciate any advice..

On Feb 04 2008, Kathy Wrote:
Our daughter is 9 and recently diagnosed with CPP. Her bone age is 11, and her hormone levels indicated she is in full puberty. She has breast buds, pubic hair, underarm hair, and had her first period not long after her 9th birthday. She's in the 95th percentile in height. So far she's tolerated the Lupron injections very well. Her moodiness has dissipated and she's our regular happy girl again.

Somebody mentioned that a doctor said Lupron won't do much good if a girl has started her period. Why?

Also, someone mentioned that their pediatrician won't give the injections. I got the same kind of answer from the office staff, which I didn't accept. I talked to the doc, and she said no problem, we'll be happy to do it. So one of the nurses gives the injections, and she is SOOOO good at it that my daughter's fear has completely subsided, making this ordeal easier for her (and me).

On Jan 28 2008, Denise Wrote:
Hi Chrissy,
I don't blame you for wanting to go for a second opinion. There are a couple of things to keep in mind. It will take some time for the bone age to catch up to what is going on in the body. Are you noticing any other signs, such as breast development? Also, sometimes just doing blood work is not enough. The hormones come though in pulses, and at the beginning, mostly at night, so if the blood work is not done at the right time of day, they will not catch the pulses of hormone. You should request a GnRH stimulation test, as that bypasses the need to catch the pulses. I would love to have a conversation over the telephone with you. Please call the National Office at 800-3MAGIC3 and ask to speak with me. They will forward your number on to me.
Thanks and I look forward to speaking with you,
Denise,
CPP Division Consultant

On Jan 28 2008, Chrissy Wrote:
I just happend to read my post again and I would like to clarify that my daughter gained a pound a month (not a pound a week!!!) Ooops!

On Jan 20 2008, Chrissy Wrote:
When my daughter was 2 I noticed that she was starting to have strong body odor on occasion. I also noticed that she was having severe mood swings. She didn't have the odor and mood swings all the time but I started to notice that they always happend together and usually the same week out of the month. (Which just so happend to be the same week of my period.) She has gained almost a pound a week over the last few years despite eating a very balanced diet. She is very tall for her age and I expect that as my husband and I are tall but I just kept waiting for her to "slim down". (I am 6'0 and he is 6'10) We got a bone age and some blood work done and were sent to St. Louis Children's Hospital. The bone age was 10 months ahead of her chronological age. I was told that there was nothing wrong and sent home. She is 3 & 1/2 now and last month I noticed some discharge along with the body odor and mood swings. I have asked to be referred to Kansas City for a second opinion. My question is, how aggressive should I be? I feel in my heart of hearts that something isn't right, but I haven't had a doctor yet that has validated any of my concerns. Her hormone levels came back fine for her age, but no one has been able to explain why my 3 year old had body odor and has for almost 2 years now!!! What tests should be done? Is there any way to diagnose this at the age of 3? HELP! I am just trying to gather as much info so I can be an advocate for my sweet little girl!!!

On Jan 05 2008, Leslie Husain(CPP Coordinator) Wrote:
Hey Sherra,

The Endocrinologist took Tess off her injections shortly after she turned 10. She didn't start her period until age 12,even then it didn't come regularly. It took a good 2 years or more for her period to come monthly. I don't remember what her height was at the end of treatment but I do remember the Dr. predicting that she will only make it to 5'5" and she is now 5'7".

It doesn't mean that your daughter will start her period immediately after the injections are stopped. Of course this was 6 years ago but the Dr. felt, at that time, that there was no benefit to continuing Lupron injection after the age of 10.

Great hearing from you Sherra. Keep in touch!!!
Leslie

On Jan 02 2008, Sherra (CPP Co-Coordinator) Wrote:
Our injections have always been given either at the peds office or by my neighbor who is an oncology nurse. I do know other moms who have given the injections (during vacations, etc.) I am surprised that your ped. office will not help with this. Do they expect those with allergies to get those shots at home too?

Leslie, can you please tell me when you took your daughter off Lupron? Our daughter is 9 years old and our Dr. has advised her to go off at any time we feel comfortable. She is already 5'2", but both her dad and I are tall. Her sisters, both age 12 and also 5'2", have not started their period and it seems really odd to have our youngest daughter have her period before the older two. Any thoughts? I know we can not predict the future, but any advice you can give would be helpful.

On Jan 02 2008, Dora Wrote:
My daughter developed a breast bud on her left side at 6 years and 10 mos. I took her in the see her ped. she asked if she had any other puberty signs, at the time no. I am paying alot more attention to her now. I've noticed few very fine that seem to be pubic hair. She is going in to see her ped. Next week. I am sick to my stomach and havent been able to get any sleep. She has a "linea negra" and just seems more thicker, shapely than your average 7 year old. She also seems to be moody. Can this be PP? I didn't get my period until I was 11 years old. I am worried sick. I'm afraid her ped. will not give her an x-ray for bone age. Please help with any advice.

Dora

On Jan 01 2008, Leslie Husain (CPP Coordinator) Wrote:
Dear anonymous from Dec.14th,

My daughter also had a 4-8 micro adenoma in her pituitary. My Endocrinologist showed the MRI to a Nuerosurgeon and he felt there was no reason to be alarmed. The truth is that 5-10% of the population is walking around with micro adenomas in their pituitarys
and will never know they have it unless they have a MRI of their pituitary. Which most people have no cause to have that procedure done.

I don't think there is any way to predict how tall your daughter's adult height will be. It's just a waiting game.

Speaking from the experience with my daughter and her injections. She really didn't have any side effects from the Lupron. From the time she was diagnosed to the time her period started my daughter had trouble with her weight. Now she is 5'7" and weighs 128lbs. and is 16 1/2 years old. So she is quite happy with the results and has told me that the injections were well worth it!!!

Hope this has helped you.
Take care,
Leslie

On Jan 01 2008, Leslie Husain(CPP Coordinator) Wrote:
Dear Mary/NJ,

I gave my daugter all of her Lupron injections. I injected into the muscle in her upper thigh. I alternated legs monthly. One month in her left leg then the next month in her right leg. It would be helpful to have a nurse help you with the first injection. Then hopefully you should be fine on your own. It does make it much easier do administer the injections yourself. Then you won't have to struggle with making it to doctor appiontment every month.

Hopefully this helps. Anymore questions don't hesistate to ask.

Take Care,
Leslie

On Jan 01 2008, Amy Wrote:
To Mary in NJ:

My daughter (8 years old) has been on Lupron for the past few years and we have always gone to the pediatrician's office for her injections. We lived in NJ (Mercer County) when she started the injections. We now live in Bucks County, PA and we continue to go to the pediatrician's office for the Lupron injections. It was never an option for me to administer the injection myself.

On Dec 30 2007, Andi Wrote:
I am glad we found the Magic Foundation. Our daughter was diagnosed with CPP at age 8. She had actually already started her periods at age 8 before our pediatrician decided we needed to see an endocrinologist. Her bone age is 11 which is not too bad. However, since she had started her periods already, the endocrinolgist said Lupron wouldn't be any help to her. Reading some of the messages posted here I noticed some children are on Lupron even though they had already started having a period. Did your endocriniologists say the Lupron would help even though they had already started their periods? We are getting a copy of all my daughter's records and are considering getting an appointment with a different endocrinologist. I am just wondering if it would be worth trying the Lupron.

On Dec 23 2007, Mary/NJ Wrote:
My name is Mary and my daughter (almost 9) has just been diagnosed with CPP. We are going to start her on Lupron Pediatric Depot 15 mg. injections. Our instructions from the endo are to schedule an appt. with our pediatrician for the injection. Our pediatrician will not administer and says it's the parent's responsibility to administer. I have a call into the endo's office.

My question, what is the experience of the people on this list? Do you administer the injection or does a doctor/nurse? Thanks.

On Dec 15 2007, Lisa Wrote:
To Dec 12th anonymous.
Not sure if you were responding to me or not, but my daughter had the GnRh Stimulation test, Is this the one you are referring to? Her Dr. wants to check her levels in late January again. At this point, we are just closely monitoring. I pray nearly everyday, that she isn't starting.
Thanks to everyone for your responses.

PS.--my original post us the anonymous from Nov. 29th

On Dec 14 2007, Anonymous Wrote:
Hi Leslie,

My Daughter is 11 yr old with 74 lb weight . She already has started her periods around 1 yr and she has been diagnosed with CPP. Her Endocrinologist prescribed her Lupron Depot PED 15mg every 28 days for 5 months. She is with short stature (only 56 inches) and her Bone Age is 11 Yrs and 3 months when we did her bone age 6 months ago. Hr MRI results shows a Cyst in her brain..As per doctor it is benign, however, DR advised us to see a Neurosurgeon for a second opinion..DR. thinks that if we put her on Lupron for 5 months , her period will stop and so she can drow naturally. Question: Do you think she will grow further at least 3-4 inches while she is on Lupron PED? and What will be the Major side effects? Please guide me if you can and I am planning to put her on Lupron Depot PED 15Mg ASAP.

On Dec 12 2007, leslie Husain (CPP Coordinator) Wrote:
Dear Kentucky,
Yes, most of us have had to wait 3 months or more for our first Endocrinologist appointment. Once you see the Dr. then he will probably order some additional tests.

Hang in there!!!

Take Care,
Leslie

On Dec 12 2007, anonymous Wrote:
hi all - my daughter was diagnosed with cpp at age 7 1/2 and has been on lupron for 2 years and growth hormones for one year. She is responding well to all treatment. To anonymous - i don't think you should "trust" your doctor so completely - did your daughter have a luprolite strimulation test or just a bloodtest. The blood test really means that at that exact moment she was not in puberty. You have to insist on the more exact test.

On Dec 11 2007, misty kentucky Wrote:
My daughter has been diagnosed CPP by her physician but it will be 4 months before she can get into the Endo. She is 7 years 10 months and her bone age is 11. She is as tall as her 10 year old brother. She has begun breast development at around age 6 and has some pubic hair recent development. Her blood work came back fine except her T3 uptake was low. Has anyone had to wait so long to get into the endo. I called several of the major medical centers in our area and all of them are this back logged. She does have mood swings and is tired like a teenager would be.

On Dec 10 2007, Leslie Husain (CPP Coordinator) Wrote:
Dear Indian Mom,

I can understand your concern. Your daughter may be tall now but if she went untreated she may not make it to an adult height of
5 ft. That was one of the main reasons why my daughter chose to receive treatment. I'm 5'9" tall and she wanted to be like her mom. My daughter is now 5'7" and is very happy she went through treatment. She told everyone it was well worth it. How does your daughter feel about it? Maybe that's where you should start.

Leslie

On Dec 08 2007, Indian mom Wrote:
Hi
My daughter adopted (indian) developed breast buds at about 6yrs of age. She has been quite tall compared to her peer group since she stared nursery/KG. When I showed her to her peaditrician she said that it was ok. But as time passed by I felt that her breasts were developing furthur and fine pubic hair appeared. I took her to an endocrinologist in India and she was investigated. Her bone age was around 11yrs. MRI showed 2 tiny microadenomas (2-3mm) which they said was indcidentalomas and not significant. She was diagnosed as CPP and started on Leupron 7.5mg 4 weekly. After 3 months the blood reports showed not very good suppression.She was started on Decapeptyl(Tryptorelin) 3.75mg four weekly. Her blood tests this week shows good control.
Is there anyone giving this drug to your kids? Is this safe?
Her height at present is 140cms and weighs 36kgs. She has put on weight after the injections and does have mood swings and cries unnecessarily.
Sometimes I wonder if I am doing the right thing by playing with her hormones and I get upset.

On Dec 07 2007, worried mom Wrote:
hi- My daughter was diagnosed with cpp at age 8 and has received 2 lupron injections. She had started her periods before the injections and this month she has spotting. Is this one of the side-effects of Lupron. Please provide me with some information

On Nov 30 2007, anonymous Wrote:
My son was misdiagnosed by the pediatrician and by the time we were referred to an Endocrinologist my 8 year old son had a bone age of a 12 year old. He was started on Lupron but had a reaction to the injection causing abscesses at the injection site. Our doctor told us of a new product on the market call SupprelinLA which was a once yearly implant. It was about the size of a tic tac but was soft to the touch. It was placed under the skin in his arm by the doctor in the office. It lasts for a year. What a relief, no more shots (my son was very phobic) and his mood swings have stabilized. Best part was my insurance covered it 100%. I had to pay $40. It's new so your doctor might not have heard of it. But there is an alternative out there.

On Nov 29 2007, anonymous Wrote:
hi there~ so happy to found all of you. My daughter developed a breast bud last spring (one side only). A few months later, on her 6th birthday, we took her to see the Endo. Her x-ray that day, came back as 6yrs. 10months (so 10 months older--but both my kids have always been bigger for their age) He said lets wait & see for a while. Well in Aug.-her other breast developed a bud. So the Endo ordered the GnRH stimulation test.(which we did in Sept) The test results showed that she hadn't really started puberty yet. He said she could be VERY early in its onset. To continue to watch for other signs & we will run the test again in Jan. She has also had a growth spurt in the last few months.

Her buds seem to go up & down to me--larger, then almost gone completely. Wonder if this is "normal" from what you all have experienced. I read a lot about moodiness on here. She has recently become "whiny"--When the Dr.s ask, if she's having mood swings, I don't really think she is, I have just thought it has been adjusting to full days in school, being tired, etc. Is the moodiness really obvious to all of you?
Finally, experiences with Lupron... I know this is the medication her dr. would use. It makes me nervous to us any hormones... but can't imagine her having to deal with puberty at such an early age either. I would love to hear others stories & experiences. You can email me a miksmom2003@yahoo.com if you like.
thanks!

On Nov 28 2007, anonymous Wrote:
I have a son who will be 11 in march. he was diagonosed w/premature adrenarche and has the hair/acne and b/o. his bone scan came back almost 2 years. He is 5"4" now. my main problem is that he has a deathly fear of needles, so a stem test and blood work conversation is not going well. has anyone left "nature" take its course? the mood swings have calmed down a lot and he doesn't feel self conscious at all....thank God for these message boards!!!

On Nov 28 2007, anonymous Wrote:
Dear Leslie,

Thank you for your support. It is so nice to have an opinion from someone else who knows about these disorders first-hand. I don't know anyone in my circle of friends or family who has any idea that being tall at a young age (when your mother is 5'3") could signify a problem. Most people think it is a sign of thriving, as did I until a few months ago.

My daughter's endocrinologist did offer to schedule the hormone injection test if we continue to be extremely concerned, but she advocated watching and waiting for the time being because of the normal results of her bloodwork and ultrasounds. I'm not apt to push for the test if the doctor thinks it is not absolutely necessary. I cringe at the thought of injecting my daughter with hormones for the cortisone prodction test, when her doctor is now suspecting that everything is A.O.K.
I don't think the endocrinologist will look into the radiology report again, as she seems confident that the second reading is advanced and correct-- although she did state that the interpretations of these tests are extremely subjective. I do trust the doctor, she is very experienced, highly regarded and very careful.

Thank you for answering my questions, I'm not quite as confused anymore! I just have to watch and wait-- now probably Anxious.

On Nov 26 2007, Leslie CPP Coordinator Wrote:
Dear Confused,
You have every right to be concerned. You are your childs best advocate! Have your endocrinologist check the bone age x-ray.

In the mean time keep checking your daughter for pubic hair and breast buds. If she developes any of these signd contact your Endocrinologis. If those signs do show up the Endocrinologist may order a GNRH test and a MRI of the head.

Hang in there and if you have any additional questions please don't hesitate to ask.
Leslie

On Nov 26 2007, anonymous Wrote:
Dear Leslie,

No, she does not have pubic hair or breast development. Her doctor sent her initial bone age scan back to the radiologist for review. The radiologist said he/she may have over-evaluated the bone age and it is between two and three years advanced but not over three years advanced.
We will visit the endocrinologist again in three months and she will monitor her growth and development.
Again, she is extremely tall for a seven year old. She is 4'7". So the doctor says the advanced bone age corresponds somewhat to the advanced height.
We feel somewhat relieved, but after reading more on these boards, I am still concerned. Should I be?
Confused

On Nov 24 2007, Leslie CPP Coordinator Wrote:
Dear Confused,

Does your daughter have any pubic hair or breast development?

Leslie

On Nov 20 2007, anonymous Wrote:
to Amy:

My 9 1/2 YO daughter has a hypothalamic harmatoma that was found when she was 23 months old. She was recently diagnosed with CPP and Pituitary Dwarfism. If you would like to contact me directly, you can email me at adoptionally@aol.com

On Nov 19 2007, confused Wrote:
Hello,
I have a daughter who is 7-1/2. Her bone age is 3 yrs. advanced. Her pelvic ultrasounds came back normal and her hormone bloodwork came back normal. She has body odor and axillary arm hair. She is unusually tall for her age.

What does all this mean? I am concerned most about the advanced bone age? Is this precocious puberty, CAH or something else???

On Nov 13 2007, anonymous Wrote:
My daughter is now 4 1/2 years old and was diagnosed with CPP after 6 months of tests, an MRI and ultrasound. It is now a year, and 5 lupron injections later, and she is still growing at a rapid rate. Her bone age as of last Nov. was a little over a year advanced and now it is over 2 1/2 years advanced. The dr. increased the injection to 15 mg at her last appointment and her next scheduled injection is this Friday at which time they are going to do another round of blood tests to measure levels. My concern is the continued rapid growth rate and the breast tissue is increasing in size. What is the average time frame of the medication working? What is the next step if she continues to grow at this rate? Is there something else we should be looking at? I also wanted to mention she is definately very moody and continues to have break downs when she cries over small things. We also notice a difference in her behavior a couple of days before her injection. She becomes moody and agressive with her peers and her sister.

On Nov 13 2007, anonymous Wrote:
Can anyone tell me if it's true that Lupron can cause Vaginitis and UTI? My daughter was dx with Vaginitis today and constantly struggles with UTI's

On Nov 12 2007, Unanswered Wrote:
Hello,
My daughter was diagnosed at age 5 with precocious thelarche by an endocrinlogist. She is now 8 years old. Six months ago, her bone age was 9-10 years old. Three days ago, her bone age is now 10-11 years old. Other than this, the doctor says that she seems to be developing normally for an 8 year old. She will likely be 4'7"-4'10". He said that the only treatment that may help her would be HGH treatments but is is very expensive and my insurance would not cover it. He cannot explain why she seems to be developing normally but her bone age is increasing rapidly. Can anyone answer this?

On Nov 08 2007, Sherra (CPP coordinator) Wrote:
To Karen... My daughter did not experience any of the side effects from Lupron. I did, however, have her wear a panty liner just in case.

To Kelly.... I have not heard of general hairyness associated with CPP.

To Ally... My daughter was diagnosed with CPP when she was 6 years old. At that time, the endo. told us that, if not treated, she would have her period in 3-6 months. She's been on Lupron for 3 years and her breast buds have recessed, she has not had a period, and her bone age has stopped growing at such an accelerated rate. That has been our experience with Lupron.

On Oct 24 2007, Karen Wrote:
Hi there. I am new to this, but i am so happy i found this message board. My daughter is 7 1/2 and has just been dianosed with CPP on Friday. She sarts her Lupron injections tomorrow, and I was looking for information on what other parents went through with it.

Cherise, your daughter could be mine! We have been battling since she was a toddler, and I have taken her to a psychologist also. She is moody, argumentative, disrespectful, but at times she is so sweet, thoughtful and loving as well. It all makes so much more sense now to me. I chalked her growing chest up to chubby-ness and never considered actual breasts could be growing until she told me that she had tingling in her chest. When I took her to see her doctor for an earache, I asked her to check her chest. We were referred to endo and diagnosed within a month. She still has her MRI to do, but with the injections starting, I am a little worried. What I am wondering is how common the spotting is. I tried to explain it to my daughter, but she looked confused. Did anyone experience this, and how did you handle it? I was thinking of having her wear a panty liner so if something did happen at school, at least she may not be too embarrassed about it. Also any other side effects that may happen. Everything I have read online seems like a text book answer and I want to know from those who have gone through the same thing we are about to.

Thank you so much for starting this. Everyone I have talked to is shocked when I explain what CPP is. I really appreciate the support and knowing I am not alone out there.

On Oct 15 2007, Amy Wrote:
I sent this posting last week but I haven't seen it appear yet so I'm sending it again.

To Anonymous:

My daughter's growth has continued at a much slower rate since she started Lupron a couple of years ago. She is now almost 8 years old and will continue medication probably until she is 11 years old. Her bone age is between 10-11 years but has been holding steady for quite a while now. She initially had some breast tissue but it has since changed back to fatty tissue. She does have hair growth under her arms and in her pubic area but from what the doctor says, that is normal. My biggest concerns when this all began was that she would stop growing too early and the possibility of early menstruation. Fortunately, I don't think we have to worry about that now since she's been receiving the Lupron. My insurance covers the cost of the monthly injections and all I have to cover is the copay. The pharmacy through the insurance company sends the Lupron directly to my doctor's office so it's there when we go in for the injections. As far as side effects, there is some soreness afterwards but that's all we've encountered. At this point, I am seriously considering the supprelin Implant to avoid the monthly injections. So far, I've only heard positive feedback.
A question I have: Is there anyone here who's child has a hypothalamic hamartoma? We've been going back for follow up MRI's on a yearly basis and I was wondering how often others are going and if there has ever been any change in the hamartoma. So far, we have not seen any changes since she was initially diagnosed. If your child has been diagnosed with a hamartoma, I'd love to hear from you.

Thanks!

On Oct 15 2007, Ally Wrote:
My daughter had her MRI on Sat and didn't do well.
They put her to sleep; when they woke her up she was angry and pulled her IV out of her arm she threw up the rest of the day. I plan to call today to see what they gave her as I see no need of using that meds to put her under again if need be. Also, is Lupron the only thing the put children on for PP? What are the long term effects of this med, I also heard that is $1500 a shot is this correct? I'm not 100% sure I want her on Lubron, does it really work.
Any help you can give me is appreciated, I am having a really hard time with all this, and I do hope I feel better after we get the results sometime this week.

On Oct 12 2007, Kelly Wrote:
Hello there: I have previously written on this board. We are seeing the Endocrinologist on Monday. Our daughter is 6 and does not have a diagnosis of CPP yet, but everything points in that direction. Among many other symptoms, she has had very severe explosive mood swings since she was about 2 years old. Like others have written, she is so very sweet when she's not in one of "her moods" and then bam it hits. I have always thought they were not the typical childhood outbursts.
I have read a lot of information about CPP, but there is no mention of the mood swing factor, so it is very comforting to know that this is "normal". I was guessing it was part of the hormone thing, but was only going on my own intuition.
Also, do you know if just becoming hairy in general (not necessarily armpits or pubic area) is a normal part of CPP?
Thanks for all your help.

On Oct 11 2007, Cherise Wrote:
new post...also, calling out to see if anyone in the family w/ a CPP also has a offspring w/ CIVD (common immune variable disease) ? thanks Cherise

On Oct 11 2007, cherise Wrote:
More later…quick side note to ally and Darlene… I feel your pain Ally and Darlene. To date, I have been experiencing mood swings and irritability in our girl since 4 yrs of age. We saw a psychologist then and most recent. We had a diagnosis then that she has perfectionism, anxiety, and secondary depression. When she is sweet; she is so sweet; but when she wants to just ramble or vent or out of no where go off on something – she is a different person…it has begun to weigh heavy on me and drain me

Newly diagnosed 7.5 yr old daughter is going thru CPP Confirmed w Endo 2 wks ago w/ ovary ultrasound . Called the Psychologist and reported our new findings and to ask if this changes her diagnosis and she said this all makes complete sense of what she is going thru…like a 7 yr old in a 13 yr old body yet her bone age is of a 4 yr old. Is this the worst kind? You don’t want her to have Lupron right? Diana from Toronto please send me info on Lupron. Background 3 lb wt gain this summer, noticed a little shorter compared to others her age, and breasts development Endo confirmed 2 wks ago need to stop puberty so can attain pred. ht 5’8/5’9’’…currently 48.75’’

Any info from you all appreciated…especially reading ally’s earlier entries…I cannot tell you how comforting it is to hear others explain behavior like that…that is my kid.



Conference call mon the 15th of oct w/ endo to discuss game plan. Thanks Tamika for working on these boards and msgs. Please let me know if I’m doing it correctly.



Are any of the kids w /CPP on rHGH …or what drugs are they taking to stop the puberty but aid in growth?

The next day after our diagnosis i cannot thank Denise enough for contacting me and being my mentor, friend and person to cry on. Thank you magic foundation!!!! and all your hard work denise

On Oct 09 2007, Ally Wrote:
My daughter gets angry and sometimes for no reason, hormones I guess. I just love on her a little more and let my child know that everything is going to be ok. I would help her in any way you can but I'm new to this so I'm sure others can inform you more than me.


On Oct 09 2007, Lorri Wrote:
I have noticed that she is angry and sometime withdrawn. . Has anyone seen the same thing? How do I help her?

On Oct 09 2007, Lorri Wrote:
My 8 year old daughter is currently being treated for cpp. I am wondering if any of the other parents are experiencing what I am with my daughter. I have noticed that she is angry and sometime withdrawn. It concerns me because she is such a lovable kid and I feel like something is very wrong. I asked her what she is feeling and she said "different". I am in the process of talking with her doctors to see if we should get her some counseling to help her deal with everything. Has anyone seen the same thing? How do I help her?

On Oct 09 2007, Amy Wrote:
To Anonymous:

My daughter's growth has continued at a much slower rate since she started Lupron a couple of years ago. She is now almost 8 years old and will continue medication probably until she is 11 years old. Her bone age is between 10-11 years but has been holding steady for quite a while now. She initially had some breast tissue but it has since changed back to fatty tissue. She does have hair growth under her arms and in her pubic area but from what the doctor says, that is normal. My biggest concerns when this all began was that she would stop growing too early and the possibility of early menstruation. Fortunately, I don't think we have to worry about that now since she's been receiving the Lupron. My insurance covers the cost of the monthly injections and all I have to cover is the copay. The pharmacy through the insurance company sends the Lupron directly to my doctor's office so it's there when we go in for the injections. As far as side effects, there is some soreness afterwards but that's all we've encountered. At this point, I am seriously considering the supprelin Implant to avoid the monthly injections. So far, I've only heard positive feedback.

A question I have: Is there anyone here who's child has a hypothalamic hamartoma? We've been going back for follow up MRI's on a yearly basis and I was wondering how often others are going and if there has ever been any change in the hamartoma. So far, we have not seen any changes since she was initially diagnosed. If your child has been diagnosed with a hamartoma, I'd love to hear from you.

Thanks!

On Oct 08 2007, anonymous Wrote:
I'm new to this list; my 7.5 year old daughter has Precocious Puberty. She breasts started growing at age 5 but would go back down; her Endocrinologist released us at that time. Here we are 2 years later and my daughters started to grow hair under her arms and now her breast will not go back down, we saw her Endocrinologist once again. She is taller than most in her class. Her bone age x-ray is at age 10. We are schedule to have an MRI on Sat. and waiting on her blood work to come back.
All other test she has had has come back normal.
Has anyone’s child had any problems taking the shots any side effects? I’m sure the Endocrinologist will want her to start them. He also told us that if the PP is not stop she will stop growing at age 11.
Also, how is the insurance company playing for these shots, do they pay or not.
Thanks for any help and or support you can give me.
Ally

On Oct 02 2007, Darlene Wrote:
My 9yr old daughter received the supprelin LA implant last month for her CPP. It was the pedi surgeons first implant so the rep was with him, and they did it in the OR. I know it's set up for an office prodedure but the surgeon thought my highly anxious daughter would do better in the OR. I'm glad we did it that way. SHe had po versed in pre-op, which took the edge off and then had to breath the gas through the mask in the OR. No shots, or IV. THe incision site looks great, they put a couple of disolveable sutures in and that was it. I'm waiting now to get labs done.

On Sep 30 2007, menzhong Wrote:
Alice, Thanks. I will write to you soon. It was busy past weeks.

On Sep 21 2007, anonymous Wrote:
To: menzhong
Hello, yes I would love to share more since our girls are the same. My personnal email is alicemazelet@allstream.net. Feel free to contact me! Alice

On Sep 19 2007, anonymous Wrote:
Wanted to correc the spelling of the drug that the doctor wants to place my son on every 6 hours..in a couple posts down..the correct spellingis DECADRON... not Decradon. A big thank you to anyone that can give me any feedback on this!

On Sep 19 2007, menzhong Wrote:
Our daughter is similar to Alice's daughter, she is now 9year 3months at her 5% height and weight, very small kid, she got her first breast bud at 8 1/2, half year later, got both breast buds, now I can tell her breast is growing. Her bone age was 2 year behind when she was 9, she grew a bit because of those puberty, will check again in 3months. All blood work shows normal. We feel same as Alice: The "border line" early and the small height seem to be the worse combination possible. Alice, could we share more? Can I send you email to your personal email? Thanks. Also, can someone advice if the Lupron will stop the growth or your kid still grow 2 inch a year?

On Sep 16 2007, anonymous Wrote:
Hi! I have been reading these posts and notice that there are only a few for boys. My son is 8 years old and has had every test imaginable for Precocious Puberty...MRI was fine...Ultrasounds are fine...blood work..fine. The Adrenal gland testing was a "bit" elevated (will find out more on that when we see our Endo on Thursday. The bone tst showed him at age 12 (but she questioned the results at our first visit). The Endo wants to place him on Decradon for 3 days..every 6 hours and then do another blood test. Has anyone ever done this? These tests have druf out for 3 months now with no positive diagnosis. He is 4'8" and has a little pubic hair and did have acne last year, but that has gotten better to just a few break outs here and there. Any advice, information or experience that anyone has gone through would be so very appreciated!! Thanks!

On Sep 15 2007, anonymous Wrote:
I'm so happy I found this site, I have an 8 year old, who was going through so much and her last doctor sotra blew me off. I even showed him her hair under her arms and in her pvt parts,when she was 3! and he was "no big deal". It all came to a head when I ran to the doctor after my 8 year old called me to the bathroom and showed me some T.P. stain with blood. Once more, he felt it was no big deal, and she was bleeding b/c she an active 8 year old. I walked out! found her a new doctor. She (new doctor) told me I should have walked out and found her when my child was 3. She said this was not normal. So I'm new to all of this.(less than a week old) We just got a bone age test yesterday, and she has an appt to see another doctor, to rule out any medicial issues. I'll be back with an update when I have one.

On Sep 14 2007, Sherra (CPP co-facilitator) Wrote:
With regards to the question about the Histrelin Implant... Dr. Lee and Dr. Silverman spoke about this treatment at the convention in July. They both had very positive comments regarding the implant and I believe both were part of the clinical trials. Our daughter is now 9 years old and we don't know how much longer she will be on Lupron, but if she were younger, I would be advocating for the implant. She doesn't ever complain about the shots, and our neighbor who is an oncology nurse does the injections, but even so, it would be nice to implant and forget for a year.

On Sep 13 2007, Debbie Wrote:
I was curious if someone might tell me what a normal estrogen level is in an 8 year old? My daughter's level keeps rising even after receiving her third Lupron shot.

Thanks so much

On Sep 06 2007, Amy Wrote:
My daughter was diagnosed with CPP when she was 5 years old. She has been receiving monthly Lupron injections for the past 2 1/2 years. There is a new therapy available to treat CPP and I was wondering if anyone has experience with it. The subdermal Histrelin Implant was just recently approved by the FDA. The implant is inserted into the arm and will remain there for a year. After a year, the implant needs to be removed and replaced. Has anyone had any experience with the Histrelin Implant? My daughter is concerned about the procedure to insert the implant but she would also love to be able to stop receiving the monthly Lupron injections. I would appreciate any feedback you have.

On Sep 05 2007, Jessica Meyer Wrote:
Hello. This is my first time here. My 10 month old premiee has just been diagonsed with CPP. We have been waiting on many test to finaly detrime this. At 3 months age she started developing breast. Then around 7 months old she started developing pubic hair. Now at 10 months she has hair under her arms and acne. Has anyone heard of a child so young with this? They have ruled out a tumor in her brain and her ovaires seem fine. Is there something else we should be lookin at?

On Aug 30 2007, anonymous Wrote:
RE: Jessica Austin TX

My daoghter was diagnosed with CPP at 2 1/2 yrs. old in 1999. At that time her bone age was 6 yrs. 10 mos. We began Lupron injections when she was almost 3- every 28 days for 6 1/2 yrs.- ending about a year ago.

It was very difficult especially in the beginning when I had a terrible time just getting her to the Dr.s office and had to hold her while they gave her the shot. Eventually, though never easy about the whole thing, she began to accept it as just part of her life.

I think she has always felt different from other kids her age, and I know other people have treated her differently due to her height. She has always been mistaken for being older than she is, and I think more has been expected of her because being tall to most means being more advanced.

Difficulties aside, I feel grateful that treatment was available that allowed her to have somewhat of a normal childhood. She is now 10 1/2 yrs. old, 5 ft. tall and still growing, and beginning puberty again at the right time. She has always been a happy, sweet, funny, talkative kid and that has never changed.

I hope I have been able to help. It sounds like you are on top of things. Trust yourself and your doctor. While it could be a long road for you, in the end you will be doing what is best for your daughter.

Gail Ohio

On Aug 29 2007, worried mom Wrote:
Hi: Thanks very much for your replies to my message. I have been back to our own GP (she was originally on holidays) and she will be ordering blood work, x-rays, and an ultrasound while we wait to see the Endocrinologist. She is also going to see about getting us an earlier appointment. I also have been in contact with the Orthopedic Surgeon to see if she can help. She was the one who originally raised the concern about precocious puberty because my daughter has had problems with her legs and leg pains for a few years.

Am I correct in assuming that most of children with precocious puberty have the central type with no underlying cause (i.e. brain trauma, tumor, etc.)?

Thanks again.

On Aug 28 2007, Diana Lopez Wrote:
To Alice & John Day from Toronto:

I apologize for taking so long to answer. I would love to send you the Lupron. If you want to email me and we can arrange the delivery, my address is lopezoms@hotmail.com

Diana

On Aug 27 2007, alice Wrote:
Hello worried Mom,
We are also from Canada (Toronto). Make sure you show up to the endo with growth chart, blood work and bone age, and maybe even ultrasound ordered by your GP . Your GP should be ordering that(bring the actual photo or disk, the endos like to read it themselves). The endo may like to have it all redone at the hospital, but at least you have some results that you can start discussing. We also had to wait 2 months, but it took almost 6 months to convince the GP to refer us! all that waiting is awful, but once you have seen the endo, it goes fairly fast.( Please do not hesitate to contact me at alicemazelet@allstream.net. We have been going through that for the last 12 months!)

On Aug 27 2007, Jessica Wrote:
I am struggling - my 2 year old daughter Lila was recently diagnosed with CPP. I don't find much information on this - especially not for a child as young as mine. I have expected this diagnosis for many months, but now that it's "confirmed," I find that I am not as emotionally prepared as I thought I would be. I feel a little lost. Let me tell you about us. Lila has also been a big girl - at birth she was 9 pounds 9 ounces. Around 9 months, her ped noticed developing breast buds. I had her seen immediately by a ped endo & she did not initially order any tests for my daughter & made an early diagnosis of premature thelarche. She said she would continue visits every 6mo to check on her. After about a year, I changed ped. endo. & the new doc immediately ordered a bone age test. At age 20 months, Lila's bone age was 3.5yr. Then the did a Lupron stim test - but her levels came back pretty normal. They decided to do it again in 3mo. When the did it again (Jan 2007) her levels were slightly elevated & they said they would do a bone age again in the summer. She is now almost 3yr & her bone age was 5.9yr. The endo has scheduled her to start Lupron on 9/10. I am being HOUNDED by my MIL to have a 2nd opinion - but I do feel that this diagnosis is correct. I see info on the web of others diagnosed, but don't find anything for a child under 5yr, so I am left to wander if perhaps Lila's young age & diagnosis is not common. I hate the idea of starting my very young daughter on any kind of injections this early - I don't know what to expect - how will this affect her emotionally & physically? I have a 10yr old daughter that is a Type 1 diabetic - diagnosed at age 5 - so I am very confident in this endo & we see her quite a bit. When my oldest daughter, Hailey, was diagnosed - it was a very, very hard year for her & for us. She would be erratic around needles & as a diabetic, needs to have injections done several times a day. I think the memory of that year is haunting me with the diagnosis of CPP. I don't know what to expect & unlike diabetes, I don't find a wealth of information.

I appreciate any time or advice you have for me.

Austin, TX

On Aug 26 2007, Denise Wrote:
To: Worried Mom
I don't know how things work in Canada, as I live in the USA, however, I would ask my pediatrician if he/she could make a call to the endo. to see if you can get in earlier. If that is not a possibility, I would call every day to see if they had any cancellations. Even if they don't, they may get tired of you calling and squeeze you in somewhere. Another thing you could do is get your pediatrician to give you a perscription for a bone age xray to be done. This way, when you do see the endo. you have some preliminary information back and they have something to go on. I would also bring a copy of the actualy xray with me to my appt. as some endos like to read the xray themselves. No, two months isn't tragic, but time is important. NO, I wouldn't necissarily say that just because she has begun menstruating that it is too late for medication to help.
Please feel free to contact me through MAGIC's National Office if you would like to discuss it futher.

On Aug 26 2007, Denise Wrote:
To: DW
Yes, I have heard of Lupron not working, however, not often. At the age of 8 I do not think that 15 mg is overwhelming. An appropriate dose to suppress is what is truly important. The Doctors like to go with the lowest level that will suppress, however, will go up as necessary. My daughter has been on 15 mg for the last few years and had been increased to 15 mg every 3 weeks at the age of 8. Again, the most important thing is to get adequate suppression. Without it, on a dose that is too low, you may be doing more harm than good. You could ask the Dr. to make sure that her CPP is not driven by her adrenal glands, as Lupron works when CPP is driven by the central nervous system.
I wish you all the best and please don't hesitate to contact me at MAGIC's National Office if you would like.

On Aug 26 2007, Denise Wrote:
To: DW
Yes, I have heard of Lupron not working, however, not often. At the age of 8 I do not think that 15 mg is overwhelming. An appropriate dose to suppress is what is truly important. The Doctors like to go with the lowest level that will suppress, however, will go up as necessary. My daughter has been on 15 mg for the last few years and had been increased to 15 mg every 3 weeks at the age of 8. Again, the most important thing is to get adequate suppression. Without it, on a dose that is too low, you may be doing more harm than good. You could ask the Dr. to make sure that her CPP is not driven by her adrenal glands, as Lupron works when CPP is driven by the central nervous system.
I wish you all the best and please don't hesitate to contact me at MAGIC's National Office if you would like.

On Aug 26 2007, Leslie (CPP Coordinator) Wrote:
Dear Worried Mom,

I was in the same position. Most of us here in the US have to wait up to 3 months for a endocrinologist appt. Wich is enough to drive you crazy. You have time!!! Your regular Pediatrician should be able to order a bone age x-ray in the interim. If not just, wait for your endo appt. and that will be one of the first tests he will order. It may take a little while to get your daughter diagnosed. Try to hang in there.

My daughter was very tall as well and was diagnosed when she was 8yrs.2months. I hope because your daughter's 6yrs.old she should still have some time to be diagnosed and start on treatment.

Unfortunately we all have to play the waiting game but it sounds like you have time to spare.

let me know how things go and don't hesitate to post again if you have any additional questions.

Leslie

On Aug 25 2007, worried mom Wrote:
Hello: Am I using the correct format for asking a question? My daughter is now 6 yrs 3 mos old. There is suspicion of precocious puberty due to breast development and what they think may have been a period. Also, going back, when she was almost 2 1/2 yrs old, I had taken her to the doctor because she had a linea nigra line(like the dark line on the belly of pregnant women) from her umbilicus down to her pubic bone, which was diagnosed as "just one of those things". At that time I noted that precious puberty was one of the causes listed for this.

Now we have been referred to a Ped Endocrinologist, but living in Canada, we cannot see him for another two months. I'm so very worried that we are wasting very precious time. Also, no tests at all have been ordered in the meantime, so here we sit just waiting.

I'm wondering if, because they think she may have had a period, she is progressing rapidly and there's a greater chance that her bone age is too far advanced for medication to help? She is very tall and "towers" over other children her age. She's going into grade 1 and could actually pass for a grade 3 girl. So far and thankfully, she has been unaffected by this (although she has noticed her breasts).

My main concern is over this waiting and waiting. It could be a long time before all the tests are done, etc. Time I feel is too precious to be wasting. Can you help?

On Aug 24 2007, Alice Wrote:
to:DW re: 8 year old on Lupron
Our endo did not want our daughter on Lupron because her hormone level LH after stimulation was less than 7. She says that Lupron is effective when the LH level is high.

On Aug 24 2007, DW Wrote:
Hello-
My daughter is 8 and was diagnosed with CPP. She has had 4 lupron shots and so far they have not brought down her hormone levels. They are still high. Her Endo. MD wants to up her Lupron dose from 7.5mg to 15mg! That's double. She is on the petite side. Does this seem like a large dose and has anyone heard of Lupron NOT working. Maybe her MD is missing something? Any experience or advice would be appreciated

On Aug 22 2007, Alice Wrote:
To: anonymous re dd entering early puberty
Yes, we are exactly in the same situation. Our daughter is now 9 1/2 and has started developing breast at at 8 1/2. She is on the 10th percentile in height and weight.IT is very strange to us to see such a small child with breat. Bone age normal, but we will have another one at 9 years in 2 months.It could be accelerating. Our Canadian endo is determined that Lupron will not do her any good. An American endo thinks that we could consider Lupron but no results guaranteed. It could help as it could make the problem worse as it can stunt her growth. We are going for a third opinion by a very well respected Canadian endo but do not have the apointment yet. What we are told is that Lupron will make a difference when puberty is very early (6 or 7) but is no longer considered after 8 unless the development is galoping. We are quite confused. Yes, her final height could be well below 5 feet which we consider a handicap. The "border line" early and the small height seem to be the worse combination possible. I almost wished the puberty had started earlier, in which case the decision to treat would have been a no brainer. I understand that the height prognosis depends on how rapid the puberty is and how the bone age is affected, which we will find out in 2 months.

I would be very interested in keeping in touch with you since our daughters seem to be in the same boat. If you would like that, please do not hesitate to contact me and we can compare our experiences. My personal Email is alicemazelet@allstream.net. (I live in Canada).

On Aug 22 2007, Anonymous Wrote:
My dd is 8 yrs, 4 months and showing signs of puberty. I know that's on the low end of normal, but she's also very small - about 5th percentile for height and weight. We're going to see an Ped. Endo in a couple of months (1st appt). Anyone have experience w/ a similar issue - not necessarily way early? My concern is that if puberty is starting now, she's going to end up being extremely short, considerably under 5 ft

On Aug 22 2007, Jo Reed Wrote:
Hello All,

My 7-yr-old daughter (bone age 11), internationally adopted, diagnosed with CPP, will be starting Lupron treatments soon. She has asked if there is any way she can talk to other girls who are "growing too fast". If any of you have a daughter on Lupron who would enjoy this type of connection by email/letter/phone, please let me know. Recently (in May) a new delivery system, an implant, for Lupron was approved. We will be starting with injection, then switching to the implant as soon as we can get one. If your child has experience with the implant, or both methods, it would be a plus. You can contact me at mwwjo@hotmail.com. Thanks, Jo

On Aug 01 2007, Alice M Wrote:
Hello Sherra,
Thanks for your support. You made a really good point here. No the US ped did not read the bone age but I will make sure that she reads the next one that we are doing in november.
Thanks for the suggestion. Actually, the US ped advised us to treat if there was bone age advancement next November, otherwise, to wait and see.
I will probably seem obsessive about this situation, but we are forwarding our file to a ped endocrinologist at Sick Kids hospital in Paris, France for a third opinion, since the first two opinion we have are so different
Again, thanks for your help.
Alice

On Aug 01 2007, Sherra (CPP Co-Coordinator) Wrote:
Alice, when we went to the conference last week, the 2 Drs at the conference gave us a different opinion than our ped. endo. gave us about treatment for our daughter. (In our case, we are trying to decide when to take our daughter off meds). Although it would be nice for them all to agree, we understand that this is not an exact science. I don't think there are hard and fast rules as each case is different. I applaud you for getting a 2nd opinion.

I have always understood that advanced bone age goes hand in hand with CPP. Did the US Ped. Endocrinologist read the bone age herself? (highly recommended). Why is she recommending treatment if the bone age is not advanced? Would it be possible for you to wait 3 months, do tests again, and then make a decision? The insurance piece of this (or lack thereof) makes this a harder "case."

And, for those of you who have never been to the Magic Foundation Convention, these type of questions are exactly the discussions we have with the Drs... we speak in very specific detail about each parent's concerns. It's like getting 2 additional opinions to help in making any decisions.

On Jul 31 2007, Alice M Wrote:
Hello Leslie, CPP coordinator
Thank you so much for your comments and support!! I really appreciate. My husband is 5ft 11 in and I am
5 ft 3 in. Our daughter is 52 inches, which is not too bad on the growth chart (20th %). She used to be much lower on the chart but because of that puberty, is going through a bit of a growth spurt. The US doctor thinks she is at risk of measuring less than 5ft, possibly 4ft 9 or so. Our biggest worry is really that she may end up with a very short stature. She is not elligible for GH in Canada, and in the US we simply could not afford them.
The doctor we consulted in the US for a second opinion is a pediatric endocrinologist at Buffalo Women's and Children Hospital. She is older and seems very experienced.
I understand that Lupron is effective for stature when the treatment starts early but not when it starts late, according to studies. As far as the bone age, even if it is OK now, it may be accelerating because of all the estrogens (they do not show in blood tests, however her breast is growing rapidly and she is not an overweight child, so she must be producing estrogens. We are quite confused by the opposite opinions of the Canadian (do not treat) and US doctor (maybe consider treatment, even though it is late).We do not have access to a second opinion in Canada because it is a public system. We are already going to what is considered the best, Toronto Sick Kids hospital.

Note: The Canadian medical system is public, understaffed(long wait lists) and free. They tend to be more conservative about using expensive treatments since the system is paying for them, not the patient or the insurance

Thanks again for your input!I really appreciate!
Alice

On Jul 29 2007, anonymous Wrote:
Hi Allison,

I know when my daughter was diagnosed the Endocrinlogist told me that if she was over 8 years old he wouldn't have treated her. I believe that most Doctors consider any time over 8 years of age a normal time to show pubertal signs. If your daughter does not have a advanced bone age I would think that is a good sign that she has lots of time to grow. With advanced bone age in children it means that there growth plates will be closing earlier than there chronological age would allow. Which means that they won't grow much taller after there growth plates have fused shut. Hopefully when your daughter gets her next Bone Age X-ray done in 3 months she will still be within the normal range.

I have a few questions for you. What type of American Doctor did you get your second opinion from ? How tall are you and your husband and how tall is your daughter at the present time?

I will check with a friend and see if our Endocrinologists in US will refuse to treat after a certain age in girls.

I will be checking this Message Board several times a day and will be lookinG forward to hearing from you again.

Hang in there!!!

Leslie(CPP Coordinator)

On Jul 29 2007, anonymous Wrote:
To Diana, offering Lupron treatment

This is very generous of you
We would have an interest in your Lupron. As I explained in an earlier post, we do not have insurance coverage in the US, and are unlikely to get free treatment in Canada (they are more conservative about expensive treatments as it is a public system).
Please let me know if your Lupron is still available!
Thanks!
Alice and John Day, form Toronto Canada

On Jul 29 2007, Alice M Wrote:
Hello,
We have a 9.5 year old daughter who started rapid breast development at 8.5. She is now at tanner 4, no hair, mild acne, accelerated growth, normal bone age (6 month ago to be repeated in 3 months), Gnrh testing gives transitional values. Our Canadian endocrinologist is insisting that she is not in puberty, and refusing treatment. We had a 2nd opinion form an American doctor that was opposite. She told us that we should consider a Lupron tratment.
The main concern is that our daughter is of short stature and may very well be below 4 feet 10.

We are considering treatment out of the US if need be and despite the fact that we do not have insurance coverage there. We are extremely concerned by the situation.

We would welcome any advice/comment from families who went through that.

On Jul 27 2007, Natalie Wrote:
This is for anonymous on July 16th - I am not a doctor but my 2nd son showed signs at about the same time as your son and he did not have any Lupron shots and they feel he will be close to his predicted adult height. Our doctor at Mayo is Dr.Latif. We have been happy with the treatment of both of our sons. Each case is different but our 2 sons sounded similar since their bone ages were advanced by 2 years at 8.5 years of age.

On Jul 27 2007, Sherra (CPP Coordinator) Wrote:
In response to the question about boys and normal range of puberty, Drs. Lee and Silverman discussed this topic at the Magic Foundation Convention last week. I can't remember the exact age for boys, but I know it was later than for girls, maybe 10 or 11 years old.

On Jul 17 2007, Sherra(CPP Coordinator) Wrote:
For those of you who are seeing signs of possible CPP in your child, I encourage you to see an endocrinologist. We had 2 different pediatricians tell us that our 6 yr. old daughter was fine, that her development was normal, and her height was due to genetics (my husband and I are taller than normal). In fact, before we went to the endo., we had the bone age done and it came back normal. The pediatrician reluctantly gave us the name of the endorcinologist. Within 2 min. of our first visit with the endocrinologist, we were told that CPP was highly probably. Turns out, the bone age was reported incorrectly. Our daughter was 6 at the time with a bone age of 9, but the report had her age as 8 years old (a mistake) so a bone age of 9 was reported as "normal." At our first visit, the endo. read the bone age correctly and did the stimulation tests. By the next day, we had the diagnosis of CPP and within a week, we had the first shot of Lupron. It had taken us almost a year to get the pediaticians to take notice of our concerns and only 2 days to have the endo. confirm a CPP diagnosis.

We learned that it's important to get a copy of the test results to review for accuracy. We learned that our 2 pediatricians (one in NY, one in CO), who were reluctant to send us to an endocrinologist, are not all knowing. We learned that we need to trust our insticts and be persistent. We learned not to be afraid of a CPP diagnosis; it's much better to know and to treat than to always be wondering why our daughter seems different from her peer group.

On Jul 16 2007, anonymous Wrote:
I also know that if my daughter was 8 or older the Endocrinologist would not have agreed to see her. Does anyone know the cut off age for boys?

On Jul 16 2007, anonymous Wrote:
Hi Bee,

God Luck and make sure they put a lead shield over you daughters abdomen before they take their radiograph. Let me know what the x-ray results are when you get them and then we'll go from there.
Looking forward to hearing from you.
Leslie

On Jul 16 2007, anonymous Wrote:
Hi Natalie ~
Thanks for your reply to my post from the 9th. I don't understand what you mean by ~ my son will probably not be put on Lupron. The doctor is thinking this is the treatment for him although the hormone stimulation blood work hasn't come back yet. He's 4'10" at age 11 and started showing puberty signs at around 81/2-9 years old. The doctor says that he will never reach his adult height potential of 5'8" if we don't do something???? I'm confused with your comment. Are you on the phone list?? I would love to talk with you over the phone. Thanks so much!!

On Jul 16 2007, Natalie Wrote:
This is in response to the July 9th post regarding 11 year old boy. I have one son who was diagnosed with CPP when he was 6 and stop taking Lupron at 11.5. He is now 12.5 and 5' 6" and still growing. His bone age was at 14. I also have another son who started showing signs at 9 with his bone age being 11.5. They monitored him for 1 year but he never had any lupron treatment. Our doctor at Mayo said that if I had brought my 9 year old to her withou