Anyone dealt with growth hormone therapy for their child?

FINFAN

Mom to Tinkbell
Joined
Apr 30, 2001
Hi...been surfing for a few weeks trying to deal with the latest news we've been dealt....DD is very tiny(we parents are not, me 5'9 DH 6'3) she is 55" and 57 #, and is 12. We requested a blood test about a year and a half ago to see if there was anything wrong and test came back negative, so we figured she would hit a growth spurt soon. Fast-forward to 3 weeks ago. Took her in for her sports physical and doctor suggests re-testing blood and also doing an x-ray of her wrist to determine bone size. Blood work again comes back normal, but bone size is at age 8.5. DD is proportioned, but very thin...basically healthy. We are scheduled to see a pediatric endcrinologist this Sat. The general run down is another more thourough blood test, testing her blood while checking for hormone levels(that one scares her as it requires a hosp. stay and I.V.) MRI to check pituitary gland....and here's the eye-opener....the treatment itself which is daily injections of hormones is about $50,000! Insurance MAY cover...we all know how that is...no real answer at this time, but was wondering if anyone has had any success or exp. with this? We are just staring to recover from DS school nightmare...and now this...DD is such a trooper tho...but as you can imagine, wondering what all is going to happen to her. On the up side, our friends had a great time on their last minute trip to WDW over X-Mas...thanks again for all the advice!
Pam
 
I wish I could offer words of advice. I just wanted to let you know I'm only 4'11 1/2". When I was 12, I was about 56 lbs. and about 47 inches. If there's nothing wrong with her healthwise other than tiny stature and build (by the way, I wish I had the tiny build to match my tiny stature!), I don't know if I'd do the hormone thing. Do they think she's done growing?
 
I agree with WilmaBud. If she is otherwise "normal' and healthy, I would not do the hormone injections. There are worse things than being petite, especially for a female (if it was a boy, I might be a little more inclined to do the hormone thing). I know that she probably gets teased. I have a feeling that mine will (they are off the chart on height) - I would love to have a petite child. But I would rather her be teased than be injected with hormones. I know that they are supposed to be safe, but if it is not life-threatening, I personally would rather not participate. Good luck on all the testing and hang in there.

Amy
 
Thank you all for the replies and kind "bumps"....we are going tomorrow a.m. to talk with the doctor. We are going to request that any tests needed to determine the developement of her organs be done...and if all looks o.k. along those lines...we are going to sleep on it a bit, and , of course, get another opinion! We live in the Chicago area and Children's hosp. has a ped. Endocrinologist that has caught our attention. We agree that the actual height is not a major issue, but if her skeletal system is not maturing for her insides, so to speak, we will have to do all we can to correct the problem. It really is so very helpful to have you all to talk with. Sometimes I just get overwhelmed and need to speak with those who are more level headed!:)
I will keep you posted!
Pam
 
Hello FinFan and YES!!! I am starting the therapy this month with 6yodd. So if you have some questions just ask.
My dd is VERY small. She has never been on the growth chart. We had 6yo check and her ped. said it was time to see the endo. as she only grew a couple of cms. in that year.
I went to the appt. and basically she had to have blood drawn to check for Turners Syndrome. It was negative btw. (YEA) She had the bone x-ray, but I wasn't sure of the "age" of her bones.

Basically as it is described to me that the hormone therapy does not make child grow more than they are genetically programed...BUT it will catch her up to her peers.
My dd is 6-12" shorter than her peers in her class. She is the size of a 3yo.
She is 41" tall & 33lbs.

I have to to her a daily shot. Won't be fun but dd wants to be "normal" and OUT of a baby car seat.
 
You might be able to get a little information from this site:

http://www.childrenwithdiabetes.com/index_cwd.htm

by doing a search on growth hormones. It's a site for children wtih diabetes (my 9 year old son is diabetic), but it can be a great resource for all types of autoimmune-related disorders. Some diabetic children do end up needing treatments for various reasons. There's also speculation amongst some parents of kids on treatments that the growth hormone somehow triggered their Type I Diabetes, but I don't think that's been supported by science at this point.

If she does have to go to injections, I would recommend a device called "Inject-Ease" made by B-D if the type of syringe you'll be using is compatible. Some pharmacies stock it and it can be ordered on their website. You put the syringe in the device, press it up to the injection site, push a button, and the Inject-Ease springs it into the site so quickly that it's virtually pain-free. I give my son his morning injections while he's still sleeping and he doesn't even budge. He's been doing his own injections with it since he was 7. Psychologically, I like having it because it's easier than poking a needle into your child. Good luck!
 
Hi I don't know anything about the growth hormone but I am only 56" tall (4' 8"). I am not tiny in the weight department anymore but when I got married I only weighed 85 lbs. I am not older by 28 yrs. but have gotten married, had 4 children. The 3 kids are all fine. I also now have 2 dgrdd's. I'm not sure if I would have had the growth hormone but it would be nice sometimes to be able to reach things and not be discriminated against. It would also sometimes be nice to not have people comment on your height (How short are you anyway??) But I would research what the hormone does and doesn't do, what it can and can't do. I have survived.
tigercat
 
































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