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Growth Hormone therapy, as well as treatments for delaying puberty for children is often confusing. To help you we have put together a list of questions by parents who have viewed the webcast videos. If you don't see an answer to your question, or just need to talk with a parent who has gone through growth hormone deficiency, insulin-like growth factor deficiency, Turner Syndrome, precocious puberty or others- Please call! That is why we are here. We have faced this and know how challenging it can be!
› My child did not start the Growth Hormone drugs until he was 5 1/2, did we lose valuable time?
No at 5 you have years of growth and will get all the genetic potential.
› I had a pituitary tumor 6 years ago. I take a lot of medications and hormone replacement. I would like to know if there is any drug reactions between my GH and cortisone. I have gained a lot of weight since my surgery. I wonder if either has much to do with that.
Your doctor needs to balance the drugs. I presume this is happening. If so all should be OK, but do ask if you have concerns.
› My son is 3 1/2 years old and has been diagnosed with GHD. We are starting treatment in a couple of weeks. We watched your presentation. We have two questions: We're wondering why you insist on an MRI? This has never been offered. Second, which delivery system would be easiest (less painful) for our son?
It has been my habit to do a MRI just to be sure. Since it is a shot, all systems hurt a bit and all children get used to the shot especially after they see growth. Daily vs. once or twice a month...really up to you and your doctor.
› My son is 11 years and 8 months old. His weight is 53 pounds, his height 53 inches. We took him to a child endocrinologist and they did a wrist x-ray and blood work. The blood work came back and it was felt that he needed to go on to the 3 hour blood test to be done next week. He has not out grown his clothes in 2 years, feet have not grown. Either is it safe to say he most likely suffers from GHD. I want to be somewhat prepared for the outcome. With this info do you feel he most likely suffers from this? Also if it came back normal, how do I help him deal with being treated so badly about being small? He actually wants to grow so bad that he's excited that this maybe an answer. Please respond. Thank you, Sue.
I think that you are right to pursue the testing. If he truly hasn't grown then the likelihood of gh problms is real. Don't tell him anything until you know the truth.
› How early can one see the response of therapy in terms of increase in height or side effects?
I frequently am pleased with the response in 3 months.
› What is the cost of daily inj & depot inj? If therapy is stopped due to some reason, does natural body hormone continue working or does growth stop altogether?
The cost is dependent on the supplier, etc, but it is expensive, several thousand dollars a year. If you need shots, you won't grow without them.
› Hi, I am an 18 year old male who was diagnosed with GHD at the age of 2.5. I quit the replacement therapy at age 16 when it was obvious that stopped growing. Recently, within the last 1.5-2 years, I have developed major clinical depression, mild narcolepsy, have frequent cluster headaches. Do you think that GHD is related to this? If so, should I start replacement therapy again?
Seems to me that GHD is rearing its head...get tested and get replacement therapy if needed. You need to be tested first and replaced if indicated. Call your doctor.
› I would like more information about the connection (if any?) between Leukemia and GH shots.
Good question: Leukemia did seem to occur and a cluster was reported about 10 years ago... seems now, since we are watching, that GHD children develop leukemia at rates like the general population.
› I know that the treatment of GH affects insulin levels. Do thse levels return back to normal once GH treatment has ceased or does the patient have to take some other medication to control insulin levels while on GH and after treatment has stopped. I would be very interested in your reply. Kindest regards, Louise.
These effects are not clinically significant to you. They do not cause or treat diabetes. The sugar levels are not clinically significant.
› My son is 13 years and 10 months old. He was recently diagnosed with GHD. We will be seeing an endocrinologist Feb. 5. He doesn't show any signs of puberty. What do you think we can expect for his results? Have we waited too long?
If needed, treat, it is not too late. He may recommend medicine to slow down puberty. It seems to help with adult height. Consider this too.
› Is there a relation between growth hormone deficiency and high cholesterol in children?
Not that I am aware of. Remember GH deficiency is very rare and hyper cholesterol is very common. Wouldn't surprise me to see children with GH and cholesterol problems.
› How many people in the US suffer from growth deficiencies? In newborns/toddlers (Children) and Adults? How many new cases of this disorder is discovered each year?
We know there are somewhere in the range of 7 to 10 thousand children on GH at any point in time. As to new cases per year, I don't think I really know and doubt any one person might know.
› My son has been getting daily injections for 2 years. It has always been very difficult for him to deal with. Some medical experts have suggested this could cause traumatic psychological problems in the future for him. Is there any evidence of this?
For some children gh injections seem very traumatic. As you know, likely having taken an injection yourself when training, it really doesn't hurt. You didn't say his age, but I advise parents that the couple of kids who managed to talk, beg, and threaten their way out of gh injections regretted it when they grew up. One even blames her mom for not taking good care of her since she doesn't like her height. If counseling is needed get it. Ask your endocrinologist.
› My son is 1.8 years old & having less weight ~ 8.5 Kg. and also looks small. His teeth are also delayed. Is it due to growth hormone deficiency? Please advise how to diagnose? He is very active.
This is a situation where a consultation with a good pediatric endocrinologist seems indicated. This is what we do every day, decide whether the child is not growing normally and why. It may or may not be hormone related. It may be something constitutional, like his gastrointestinal system. It is impossible to answer whether there is a problem unless he is seen.
› What kind of material do you use to test growth hormone defects and how to you test growth hormones for defects?
I personally use clonidine and arginine; others use l-dopa, glucagon, insulin and some screen with exercise.
› Our son is 3.5 years old and has been diagnosed as having a rating of 3 out of 10 as producing the growth hormone. He will be undergoing an MRI in two weeks to check vital organs. What are the chances if there are no other physical defects? Will he under treatment catch up with his potential growth rate?
I've not heard of a rating system; I think it might imply a fairly low growth hormone response. If so, and the MRI is OK, he will grow if treated.
› My grandaughter was diagnosed with growth hormone disorder has taken genotropin for 9 months but there has been very little progress less than a half inch. Kinsley is 8 yrs. old and looks like a 4 to 5 year old but she has other problems to such as heart defects and d'george syndrome. Could you give me some advice?
Chronic medical problems, such as heart disease, make growth difficult, even on GH. I would be sure she is receiving all the shots, at the right dose, and that storage, etc is appropriate. Beyond that, the issues of competing diseases, that can hurt growth must be considered.
› Can you explain how a child is tested? My 2 1/2 year old just had blood work and he is borderline low. Now, they want to admit him into a hospital for further intravenous testing. Please tell me more. Thank you. Paula
Standard growth hormone testing involves placement of an intravenous line from which we can draw blood every 30 minutes or so for a few hours. Medicines are given which stimulate the pituitary to make growth hormone. The samples of blood are sent to a lab for testing. The whole procedure usually takes a morning at the hospital.
› Does GH deficiency affect the onset of puberty? My daughter was diagnosed recently. She is 11 years 10 months with no signs of puberty approaching? Also, her baby tooth loss has been delayed. Any connection to GH deficiency?
Puberty is frequently delayed with GH deficiency.
1. She is biologically younger...I expect the bone age is much younger. That may be why no puberty.
2. She may be missing other hormones. It is hard to test when they are so young. Your doctor will watch for signs of puberty after starting GH treatment. If none appear in a reasonable time (14 or 15), other tests will be done.
3. Teeth delay may or may not be related
› My son's growth hormone deficiency was not diagnosed until a year ago when he was 8 1/2 years old. He has responded well to growth hormone this year (growth of about 4 inches), but should we expect that he will catch up for his earlier slow growth?
You should continue to see catch up growth over the next few years. He will then grow along his growth curve. I would expect him to fully correct.
› How can intrauterine growth retardation be related to growth deficiency?
Children with IUGR, inter uterine growth retardation, are born full term but very small. Some new data suggest that growth hormone treatment allows the children to get back on the growth curve, that is, catch up to normal children.
› What side effects might the medication have in later life for our son?
At present we know of no long term side effects of treatment. We do know that not treating GH deficient children leads to short stature, which is obvious; but it also leads to decreased bone mineral density and increased risk for cardiovascular disease.
› Is there a life expectancy for children with GHD or SOD'S?
I know of no data on life expectancy for GH deficiency.
› What is the relationship between growth hormone deficiency and osteoporosis?
There is pretty clear literature that growth hormone deficient adolescents and young adults are at risk to develop osteoporosis. Indeed, when followed, GH deficient adults have bone densities as measured by DEXA scan that is like a very old person.
› What are the long-term health risks involved in administration of GH in adults?
Depends...people who don't need it and get it on their own are taking a large risk. We don't know, but I worry that they may cause diabetes or other problems. BUT...for those who have GH deficiency I believe that we have good data that GH helps prevent problems related to the heart and bones.
› How do I know if we should have our children tested for growth hormone deficiency? Both my children (girl and boy) are small and short in stature. My son is 12 years old, 67lbs, and 57 inches tall. My daughter is 10 yrs old 50 lbs and about 48 inches tall.
Testing for GH deficiency comes when children don't grow normally. I worry less about actual size and more about growth rates. I have diagnosed GH deficiency in children who are still in the normal range on the growth curve, but have fallen away from their normal pattern. Likewise I follow many children who are below the normal lines on the curve, but growing normally.
› My daughter is 9 yrs, 3 months - height 127cm. Her growth hormone deficiency was diagnosed only last week. If growth hormone therapy were to begin now, does she have enough time for growth? Assuming an average response to growth therapy treatment, what can I expect her adult height to be?
I can't tell you how big she will be. At 9, I presume that her bone age is behind and she has a lot of growing to do. She should catch up and really most likely do just fine. Give all the shots as ordered and I believe things will be fine.
› What causes Growth Hormone Deficiency?
Whatever affects the hypothalamus-pituitary structures at the base of the brain to reduce production of growth hormone release hormone or growth hormone itself. This may be an isolated deficiency or in association with other hypothalamic-pituitary hormones. The reason for many of the isolated GH deficiencies is often never identified, but some known causes include tumors, radiation or chemotherapy, trauma and congenital-hereditary disorders. MAGIC has a brochure entitled Growth Hormone Deficiency.
› My son is 3 yrs. 11 mo. old. He is 38 inches tall and weighs 31.5 pounds. I am 5'2" and my husband is 5'8'. Since my son's last checkup 10 months ago, he has only grown 1 inch in height. His height percentile has dropped from 50% to 10-25%. His weight percentile has remained constant at 25%. Should I ask to be referred to a specialist at his next checkup, or is it possible that he is going through a growth spurt now? In the past month, he has been eating much more than usual. He is very healthy but sometimes a very picky eater. Thank you for your help.
Whether referred to a pediatric endocrinologist or not, your child needs evaluation. The minimum studies include a bone age x-ray, thyroid tests and an IGF-1 level. I wouldn't wait any longer to see if his growth falls off further.
› My daughter is 12.5 years in age, bone age 13.5, height 143 cm. She was IUGR at birth. She had her first period at 11.5 years. Is there a benefit in starting growth hormone treatment at this age? Is there any harm to it?
Some. At her current bone age and height she is predicted to have about 2 inches more growth to about 58 inches. This leaves little time for growth hormone to have an impact. There might be a little more growth to be had if a GnRH agonist were given to delay progression of puberty in addition to the GH. However, we are talking about another half inch at most, which may not be worth the effort.
› My nine month old boy, Ethan, started out in the 25% and is now below the 3%. He does not like to eat and is decreasing his breast milk intake. He is a very happy baby and is meeting all the developmental milestones (crawling, smiling, babbling.). He is now diagnosed as anemic (his # was 10) and started on drops. He cries when we try to feed him, and we have tried many different foods, different schedules. He is not showing food allergies nor does he appear uncomfortable after he eats (smiles right after we stop feeding him). He is at times constipated because he is not taking in much liquids - only wants to nurse about 3 to 4 times a day and does not want water, or juice. I am 5.2 and my husband is 5.8, Ethan is currently 26" and 15.10 lb (18 ½ and 6.11lb at birth). Does this sound like a hormonal issue? We are being referred to a GI specialist. Thank you for your help.
At this age you are really talking about Failure To Thrive rather than Short Stature and evaluation generally begins with nutrition and GI disorders. Nevertheless, a metabolic or endocrine problem may be present and be a consideration down the line. The neonatal state screen is reassuring that hypothyroidism and certain inborn errors of metabolism were absent. I'd adhere to the current plan.
› This is the second time I am sending this Question, because I am not sure if I made myself clear. I asked what are the side effects? I should've asked What are the side effects of the injections, for the growth Hormone Shots?
Local side-effects include pain and bruising. Otherwise, side-effects generally are related to fluid retention, including elevation of blood pressure or transudation of fluid across synovial membranes of joints or other structures. There is no evidence that GH causes tumors to grow or leukemia. It is possible that moles or colonic polyps may be related to GH therapy. And, of course, some are unhappy with the growth of hands or feet, but these are usually proportionate.
› We just found out our 14 year old daughter has GHD, have we waited too long for treatment?
It is impossible to know if it is too late without knowing how far along she is in her Pubertal stage or her Bone age? Probably there is something left, but children may vary a great deal as to development at any given age. This is a difficult concept- please call us at (708) 383-0808 and ask to speak with the Growth Hormone Division Director for in depth and very personal assistance! That is why we are here!
Please Note: The opinions expressed in all FAQ sections of our website are personal opinions of views with responses from medical personal advising the foundation. These responses are NOT a substitute for your/your child's medical specialists. Rather they are here to help assist in your understanding. MAGIC nor any representative of, or volunteer for, shall assume any responsibility for this content or actions taken as a result thereof. ALWAYS consult your medical professionals prior to taking any action on behalf of your/your child's health care. See site disclaimer.
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