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Growth Hormone Deficiency, Human Growth Hormone Therapy/Shots, spam me please

post #1 of 14
Thread Starter 
I have to run out for a bit, but wanted to post this before leaving in hope that upon my return I find many replies.

Just returned from the Endocrinologist with my 15yr old son. He has GHD & they want to put him on GHT, One shot-EVERY SINGLE DAY for at least the next 4-5 years...

Any sort of feedback is appreciated please. The good/bad/success/ugly/etc, all of it!

In the event that I have mis-categorized my thread, please accept my apology now.
post #2 of 14
We went through all of the testing and years of follow-ups with DS. He does not have GHD, but he is considered a "slow-grower" and is small for his age.

I don't know a lot of info. about growth hormone therapy. DH and I always thought that we'd cross that bridge when we got to it.

When we went to the endocrinologists, they were equally concerned about DS's mental state regarding his small stature. How does your DS feel? That might put you in the right direction. (If you are wondering whether to do the therapy or not.)

I've heard that there are side effects to the therapy. I've also heard that it only does so much. (The brother of a colleague at work went through Growth Hormone Therapy.)

I totally understand your concern about this and only wish I had answers for you. Take care!
post #3 of 14
One of the neighbors was just diagnosed, but he's only 10. His parents have decided to wait for the treatments. They also said he'd need one shot a day for several years.

The ten year old wants to do it though. He's the size of a four or five year old, and he's ten. His six year old sister towers over him. He's got the build of a ten year old, in a very short body and he hates it. Some girl at school told him he reminded her of Winnie the Pooh. "Short and stout".
post #4 of 14
My info is only second hand. My little brother had a friend who did this. His parents were both quite tall actually but he was SOOOO tiny. He is still below average in height though I guess taller than he would have been without the hormones. I know he feels the shots were absolutely worth the couple extra inches it but I have no idea of the risks or side effects.
post #5 of 14
Thread Starter 
Thank you Ladies!!!

Nextcommercial, that is sad. I am kinda wishing I *had* this option years ago for him. I have watched the heartache and emotional turmoil my son has gone through in the past 5 years.


My son is in the -1 % for his weight and just under the 3% for his height. We have put this off for many years. I *knew* by 10 that he was not growing properly.. but wanted to give his body the 'chance' to take off.

Well, after 5 bone age scans and now the Endro we are faced with the decision of doing the Growth Hormone Therapy for the next 4-5 years, every single day. He wants to do it. I asked him if there was ANYTHING that made him question/not want this, he said yes... THE MONEY, awe! It is approx $40,000.00 per year, woah! Thank the G*ds we have insurance that would cover the Hormone Therapy!!!

From what I understand, there is no 'long term' research for this....? From what the Dr says, he has approx 4-5 yrs to grow to his potential height, IF WE START NOW.. but if we put it off, less the chance of him reaching his potential height. She said, if his potential height is 5'10 he would most likely be only 5'4 with out the Therapy. I do not want that for my child!

The other issue we have is, Grammy, who belives you can cure/fix ANYTHING with a Chiropractor (which I adore ours!!!) Biofeedback and her Quantum Laser. She is.. well, as my Partner sums her up in ONE WORD, very "abrasive"!!! She does not care if you want to hear HER OPINION, which is always right, you are going to hear it! I know we could hide it for some time, but 4 years is a loooong time to hide Hormones in your fridge with out them eventually being noticed!

I get the alternative aspect of medicine, I agree with MANY alternative therapy/remedies... However, This has gone on all to long, it is time to help my son. NOT to make him suffer long and 'wait' for a stupid $5,000.00 laser to make him grow, kwim/
post #6 of 14
I'd recommend the book Normal at Any Cost:
http://www.amazon.com/Normal-Any-Cos...2440293&sr=8-1
post #7 of 14
Quote:
Originally Posted by phathui5 View Post
I'd recommend the book Normal at Any Cost:
http://www.amazon.com/Normal-Any-Cos...2440293&sr=8-1
I was going to post this. This book contains links/references to studies about GHT.
post #8 of 14
Another good resource is the Magic Foundation.
post #9 of 14
Our 4 year old son was diagnosed with GHD at 7 months old. He has taken a shot every night since then and his endocrinologist says that he will be taking his shots until he has stopped growing. The needle is very small and ds barely seems to even notice when we give him his shot. We also will have to look at whether or not he will need to have sex hormone shots once he reaches the bone age of puberty, which will be several years after he reaches the actual age of puberty.

I would caution against taking the shots unless absolutely medically necessary. A very, very rare side effect is swelling of the brain. Every time they up my son's dose we are reminded by his medical team of the warning signs to be on the look out for this possible side effect.

Also a note about insurance coverage. When my son was first diagnosed my dh's insurance covered all but $60 a month for the medication but after 2 years his company went through a difficult time and made some switches to their medical coverage. We would have been paying just about the entire cost of the medicine after that. So as far as insurance goes you may want to take that possibility into consideration as well.
post #10 of 14
I had GHD and took shots for a few years from about age 12-16, I think. I think they were just 3 times a week. Humatrope or something. I am 5'2" but would have been less than 5 feet were it not for the shots.

I started getting tested, bone scans, etc after my growth flatlined for a year or so.

I'm keeping my eye on my middle son wrt to this, who is almost 4, because he is TINY. I've asked our ped about it but our pet is a tiny little man and almost seemed kinda defensive. Heee. (It's not funny but it kinda is.)

My advice is to do it.
post #11 of 14
Thread Starter 
Quote:
Originally Posted by SashaBreeze View Post

I would caution against taking the shots unless absolutely medically necessary.

My son being on GHT is not a MEDICAL NECESSITY at this time. However, if he does not get something, the emotional/mental aspect of what he has been/is/will go through could potentially cause him to be in need of psychiatric care.
Also, he *will* need other hormones in his body to put him into puberty. DR said he would need testosterone shots, which scare me more so than the GHT. The tests relieved that his pituitary glad is working, that his body has the hormones needed to produce puberty, but his body is not at all going through the phase due to his lack of other hormones that prevent puberty... does that make sense? His blood work also showed some abnormalities with his Thyroid. Going for more blood work to rule out Human Error in the lab.


Delta, thank you for your post. I am truly concerned for his well being as he grows older in age, but does not grow in body, which has hindered his growth emotionally. KWIM?
post #12 of 14
Quote:
I am truly concerned for his well being as he grows older in age, but does not grow in body, which has hindered his growth emotionally.
This combined with him WANTING to do it would have me doing it if it was my child. Yes there are risks, there are risks to everything. Do the risks outweigh the benefits?
post #13 of 14
My oldest has been on HGH therapy for GHD for almost 3 years now. He fell off his curve and off the charts for height back when he was a toddler. The decline just got more and more severe. So we finally took him to a pediatric endocrinologist and DS underwent testing--which ultimately showed him to have GHD.

DS has a daily shot. He has tolerated the therapy very well. It can definitely be a controversial decision to make in some circles. But we researched this and are more than comfortable with giving him treatment for something that his body does not produce enough of on its own.
post #14 of 14
Quote:
She does not care if you want to hear HER OPINION, which is always right, you are going to hear it! I know we could hide it for some time, but 4 years is a loooong time to hide Hormones in your fridge with out them eventually being noticed!
If you go with the therapy I'd get a mini fridge & put it somewhere where she won't see. She does not need to know about this at all
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