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hooliface
member
Anyone have a child with Growth hormone def?
hooliface
member
We just got some test results today for DD and I was trying to get more information on it. I have been on line (which is NOT a good thing to do) so I thought I would ask here instead.
Anything you can tell me would be greatly appreciated. DD is 3 and her IGF-1 results came back at 22. Of course, the DR that did all the tests is out on vacation for a week so I am spinning trying to figure it all out.
Thanks
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Re: Anyone have a child with Growth hormone def?
My DD was tested for GH several times due to growth issues. I found this website helpful.
https://www.magicfoundation.org/www/docs/108/growth-hormone-deficiency-in-children
My son has panhypopituitarism, diagnosed at birth. I have used of information from the MAGIC foundation. We have given him growth hormone shots every day since he was 4 weeks old. It was super scary at first when we found out, but it's actually been really easy to do and something that has just become second nature to us.
We have his blood tested every 2 months, and his IGF-1 is still really low, so we've been upping his GH dose. For him right now, we're using it less for growth and more to keep up his blood sugar (a side effect of GH).
Definitely check out the MAGIC foundation, they're fantastic people and very helpful.
My Three Sons
#1: 2.06 #2: 1.08 #3: 9.10
DS #3 diagnosed at birth with panhypopituitarism - lack of pituitary function. He is treated with thyroxine, hydrocortisone, growth hormone and testosterone.
Thanks ladies.
Laura, do you remember what your DS level of IGF-1 was? I have been looking for reference ranges on line and they are all different. I have NO idea what to be looking for at all. I WISH that this DR was in so I could really get more answers from her.
We took DD to Mayo Clinic for diagnosis, it was quite an amazing place. We will not have a "formal" diagnosis until the specialist comes back from vacation. I am worried about doing the injections for fear of the side effects to her down the line. Of course I have had LOTS of time to sit and obsess about all this.
Thanks again for your help ladies
DS isnt growth hormone deficient (we just got him tested) but he has a growth disorder called Russell Silver Syndrome--we have also gotten TONS of fantastic support and information from the MAGIC foundation! They are great! We are in the process of getting DS started on growth hormone therapy. I cant give you info on what his IGF levels were since they just told us they were within normal range.
I too have had some concerns about the long term ramifications of GHT, are we doing the right thing?, etc. But from talking to other RSS parents (most kids with RSS end up on GHT at some point) I've learned that the benefits far outweigh the risks. Not only for growth purposes but for RSS kids at least the growth hormone has helped stablize blood sugar (RSS kids are at a risk of hypoglycemia, we have to check DS blood sugar daily), helps them gain not only weight but also muscle mass, helps them stay healthier in general, obviously helps with growth, can help increase appetite. Granted none of these things are the planned purpose of GHT but they are all positive side effects. I literally have only talked to 1 or 2 parents who have chosen to take their children off GHT and even their reasoning isnt anything horrible, more just a personal choice kind of thing. HTH!
I don't know what his IGF-1 levels were, I do know they were in the single digits, maybe 2? at his formal test (we did a formal blood draw over a 6 hour period to submit to the insurance company so they would approve the GH). Remember that the side-effects of NOT having GH can be really bad, much more than simply not growing. GH really is a misnomer as it acts upon so many other systems in the body. I plan to have DS take it for his entire life, even after he's done growing, as it helps with energy level, keeps up memory and general feelings of well-being.
My son is 6 months old. He takes three times daily oral steroids, once daily GH shots, I test his blood sugar at least once a day (he can't regulate his own blood sugar or regulate his blood pressure under extreme stress either). I also give him a thyroid replacement at night since he can not release TSH (thyroid-stimulating hormone). He has had 4 testosterone injections and will have them yearly until puberty when he will then get a testosterone patch.
There are very little to no side-effects from what he takes because he is simply replacing what he can not produce and then his body takes over from there. The steroids he'll take forever, in a low dose, will not stunt his growth. If we keep the GH low enough, it will not cause growth plates to close early, but it's still high enough to keep his blood sugar in a normal range.
It was exhausting when I found out about all of this, but thankfully we were given an amazing pediatric endocrinologist and urologist and have a wonderful pediatrician. They all work really well together to deal with this.
My Three Sons
#1: 2.06 #2: 1.08 #3: 9.10
DS #3 diagnosed at birth with panhypopituitarism - lack of pituitary function. He is treated with thyroxine, hydrocortisone, growth hormone and testosterone.
We are not for sure that our dd has growth hormone def,but just today the dr came in to inform us that her gh levels were very low and her sugars were low as well. He wanted to test her for ghd. I am VERY new at this, and the website was really helpful...thanks!