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

7K views 17 replies 15 participants last post by  393401 
#1 ·
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.
 
#2 ·
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!
 
#3 ·
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".
 
#4 ·
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.
 
#5 ·
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/
 
#9 ·
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.
 
#10 ·
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.
 
#11 ·
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?
 
#12 ·
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?
 
#13 ·
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.
 
#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
 
#15 · (Edited)
Previous HGH Therapy Patient

Hello,

I am really excited I found this post. Tonight I was reflecting on childhood and was reminded about when I was diagnosed as HGH deficient. I searched the term on a whim kind of hoping I would come across forum or discussion about others who have received the treatment/therapy. But this is just as good haha.

I was diagnosed at 6 years old. My parents took me to the doctors when they realized how short I was in comparison to my younger brother and every single kid in my class. It was becoming an issue with my education because I was always being towered over by others. I was going unnoticed and was uncomfortable with trying to fight for my teachers attention. I was not learning. Thank god this went noticed before I got to the age where I'd be bullied.

Anyways.....

Doctors suggested if I had not received treatment that I'd grow to 5'4" best case scenario. My body barely produced any HGH. My parent decided it was in the best interest of my future to start HGH Therapy. I took a shot every single night for 8 years, it was a part of my life.

I'd have follow ups every few months and after a short period of time I started seeing positive results. It seems like every time I went for a follow up I had grown more and gained more weight than the previous visit. When I refer to weight, I am referring to muscle.

I had never noticed one negative effect of the therapy. Growing and being like everyone else was the result of this therapy. There are so many things I would like to credit to the treatment, however I cannot validate them 100%. If it counts for anything, during this time of the treatment and even after I was always super active, competitive, strong, athletic with a super-fast metabolism.

It may sound like I am tooting my own horn but what I am really trying to say is that the treatment works and that I would highly recommend it for others. I stopped my treatment shortly after my peak where I grew 4" over 6 months.

I know the fears of being small and can't imagine what it would like to be growing up in this day in age of bullying. I speak freely about receiving the treatment. People frequently ask if I would recommend it or allow my future children to receive the treatment. I would recommend it and I would without hesitation allow my child to receive the treatment.

I am thankful to say I received this treatment. I was full grown as a junior, standing at 5'9, 160 lbs. with 7% body fat.

I am currently 26 years old, 5'9", 175 lbs. with 7% body fat.

Please let me know if you have any questions.
 
#16 ·
Hello,

I am really excited I found this post. Tonight I was reflecting on childhood and was reminded about when I was diagnosed as HGH deficient. I searched the term on a whim kind of hoping I would come across forum or discussion about others who have received the treatment/therapy. But this is just as good haha.

I was diagnosed at 6 years old. My parents took me to the doctors when they realized how short I was in comparison to my younger brother and every single kid in my class. It was becoming an issue with my education because I was always being towered over by others. I was going unnoticed and was uncomfortable with trying to fight for my teachers attention. I was not learning. Thank god this went noticed before I got to the age where I'd be bullied.

Anyways.....

Doctors suggested if I had not received treatment that I'd grow to 5'4" best case scenario. My body barely produced any HGH. My parent decided it was in the best interest of my future to start HGH Therapy. I took a shot every single night for 8 years, it was a part of my life.

I'd have follow ups every few months and after a short period of time I started seeing positive results. It seems like every time I went for a follow up I had grown more and gained more weight than the previous visit. When I refer to weight, I am referring to muscle.

I had never noticed one negative effect of the therapy. Growing and being like everyone else was the result of this therapy. There are so many things I would like to credit to the treatment, however I cannot validate them 100%. If it counts for anything, during this time of the treatment and even after I was always super active, competitive, strong, athletic with a super-fast metabolism.

It may sound like I am tooting my own horn but what I am really trying to say is that the treatment works and that I would highly recommend it for others. I stopped my treatment shortly after my peak where I grew 4" over 6 months.

I know the fears of being small and can't imagine what it would like to be growing up in this day in age of bullying. I speak freely about receiving the treatment. People frequently ask if I would recommend it or allow my future children to receive the treatment. I would recommend it and I would without hesitation allow my child to receive the treatment.

I am thankful to say I received this treatment. I was full grown as a junior, standing at 5'9, 160 lbs. with 7% body fat.

I am currently 26 years old, 5'9", 175 lbs. with 7% body fat.

Please let me know if you have any questions.
Hi, In short my son is one of triplets born 840g - lots of history but all good today. A concern is they are 11 and while his brother and sister are the tallest in the class he is the size of a 7 year old. Going to endocrinologist next week. Amazing, strong, healthy, brave otherwise. Complains of back pain which might be due to low muscle tone??? I worry the treatment will be more than we can afford but will do all we can. Just wondering what actual drug you were on. This is another worry, what is available here etc... Which one is safest?
Worried Mom - Thats the short version :)
Any info would be appreciated - Thank you
 
#18 ·
I would probably get a second opinion.

The issues here are best resolved by getting an independent assessment. You'll feel better if another doc arrives at the same conclusions. If not, you have food for thought. What we may or may not have experienced isn't very relevant to your son's unique biology. And the idea that you SHOULD do this to avoid "psychiatric issues" is ridiculous....he may or may not need that, and frankly your response to his stature will in large measure determine that....parents are the leading contributor to self worth and self esteem.

Just as an FYI/FWIW/IMNSHO.....everyone seems to have something these days, and that requires urgent intervention for normalcy to occur. I've become skeptical and often cynical about the scientific validity of so many claims out there that I like as close to absolute proof and require that proof to be replicated by another doc before starting a treatment regimen that lasts years, costs a fortune, and has the potential of side effects. That doesn't mean your son doesn't have an endocrinological issue that requires treatment, but rather get another opinion before proceeding.
 
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