growth hormone therapy?

[Green_Tea]

Wondering if anyone has experiences to share about this. DS will be 14 next month and is off the charts small for his age. His pediatrician has said that it's time for us to consider this next step, as his growth and weight game is extremely slow (there is no known medical reason - he has always been very tiny). He was evaluated by the endocrinologist previously (1.5 years ago) and they said to wait and see if puberty kicked in, but unfortunately that doesn't seem to be happening any time soon.

Would love to hear about other's experiences. We have a telehealth appt with the endo later today.

[pharmjenn]

No personal experience with the therapy, but my DS did have a growth plate xray of his wrist when he was 8yo because he had started growing pubic hair and they wanted to check things. I remembered that a childhood friend had attempted to do growth hormones (in the 80s) and they also xrayed her growth plate. I guess if the plate is already closed, hormones won't do anything. My friend is now late 40s and about 4'5''

[KpbS]

Yes, make sure to ask about getting imagining of his growth plates. DS had this done for some knee problems he was having and the imagining was helpful to know how much longer his growth plates had (estimated) before they closed.

Did your husband experience puberty later? You? Has he seen a pediatric gi? I would pursue that route also possibly.

[georgiegirl]

Yes! Can’t write now but DS1 started daily growth hormone shots in November and has had great results

[Green_Tea]

Yes, make sure to ask about getting imagining of his growth plates. DS had this done for some knee problems he was having and the imagining was helpful to know how much longer his growth plates had (estimated) before they closed.

Did your husband experience puberty later? You? Has he seen a pediatric gi? I would pursue that route also possibly.

Yes, he has had the imaging done in the past, and I am sure they will want to repeat it.

My husband and I both experienced puberty on a normal timeline (even early for my husband) as did my two older children.

I will ask the endo about a pediatric GI. DS's health is otherwise completely fine, so GI issues have never been an issue though of course it makes sense to consider all angles.

[Green_Tea]

Yes! Can’t write now but DS1 started daily growth hormone shots in November and has had great results

I would love to hear more when you have the time to post!

[essnce629]

Has he been tested for celiac disease? It's a simple blood test. I've read that delayed puberty and short stature are the most common symptoms of celiac disease in kids and the first thing that should be ruled out, especially if the parents are average size.

[Kindra178]

My niece did it. She's 16 now and normal height and weight. She had a thyroid issue and zero growth hormone. I am happy to connect you.

I would definitely head back to the endo.

[Kestrel]

Almost? My youngest niece was tiny from birth, and was scanned and evaluated for growth hormones. They eventually decided to hold off until she was 15, based on family history of late growth and open growth plates. She ended up growing on her own, with a growth spurt 15-18 and grew 6 inches to her final height of a (still petite) 5 foot 2 inches.

[Green_Tea]

Has he been tested for celiac disease? It's a simple blood test. I've read that delayed puberty and short stature are the most common symptoms of celiac disease in kids and the first thing that should be ruled out, especially if the parents are average size.

Yes, he has been tested for celiac.

[georgiegirl]

My DS1 (almost 11) was always small but he seemed to get smaller and smaller. Pediatrician did a bone age scan at 6.5 and was 3 years delayed, so he was sent to endo. Several years of watch and wait. At one point his growth velocity slowed and endo recommended the stim test (using two meds to induce growth hormone spurts...3+ hours of IV and monitoring), and he passed at age 8. But he had the test again at 10 (because of very slow growth...1.3” in a year), and he failed. So he was approved for growth hormones. (Generally height needs to be below 3% plus fail the stim test.). He needed a MRI first. Started in November, and he grew 2.3” in the first 6 months!!! There are some great Facebook groups on the topic. Message me if you want more details.

[Green_Tea]

Thanks GeorgieGirl! I will message you!

I just spoke with the doctor and she's ordering bloodwork to measure hormone levels, and getting new bone age scans. She is also putting him on an appetite stimulant because he has a really hard time getting enough calories (he's always been this way - even as a baby). As a point of reference, he will be 14 next month and weighs 70.6 lbs. He's always followed his own curve and is growing and gaining weight, just VERY slowly. He could easily pass for a third grader, and he will be a freshman in the fall. It's hard not to worry.

[NCGrandma]

Just one comment: hope you have good health insurance! (My experience isn’t particularly relevant — a family member with Turner Syndrome, a genetic condition that affects only girls, but the cost of growth hormone — especially if long-term daily shots are needed — can be eye-popping.)


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[georgiegirl]

Just one comment: hope you have good health insurance! (My experience isn’t particularly relevant — a family member with Turner Syndrome, a genetic condition that affects only girls, but the cost of growth hormone — especially if long-term daily shots are needed — can be eye-popping.)


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It can be expensive if your insurance is crappy. But most companies offer assistance if you meet income guidelines AND a copay card that doesn’t have any income requirements. We actually pay $0 because of the copay card.


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