Children and Growth Hormones? 6yo DD may have to do this. Experiences or Advice?

[The Mystery Machine]

My 6yo dd is small (34lbs). Always has been (16 1/2" at birth). At her 6yo checkup she started to plateau her growth curve. Not good since she is not even in any % range.

So I took her to the Pediatric Endocronologist yesterday and sure enough something could be amiss. She has to get tested for a chromosonal defect for Turners Syndrome before they could even begin growth hormone therapy. If she had this syndrome, the growth hormone therapy is controversial or not recommended.

So I was wondering if you know anything about giving hormones to kids or your experiences (medically) with your "small" kids?
Thanks!

 

[crazyme5kids]

I knew of one person who's daughter was on them, but she was in high school. I can't tell you much else, other than she was very small for her age. My daughter was always small, but started her growth spurt in her teen years, my one son is on the small side too. He hit the 50 pound mark for his ten year check up. He is amongst the smaller kids in his grade, but the Dr isn't concerned yet because his growth has been basically consistant (although slow). What does your pediatrician say?

 

[The Mystery Machine]

My 6yodd is about the size of a 3yo right now so she is very small.
My ped & I have been charting her & at her 6yo check up it was clear that her growth has almost come to a halt, not good.
So he sent me to the endocrinolgist who has made it clear that something is "not right" with dd. She should be in the 25%.

What % were your kids in? 6yo dd has never been in a %.

 

[Wendy]

My 5 1/2 year old is very small for his age. He started off his first 6 months just fine, but then just stopped growing. For an entire year, he didn't grow at all and dropped completely off the growth charts. We saw several pediatric endocrinologists at that time, and although growth hormones were briefly mentioned, they did not want to do that until later on if it was necessary. Sorry, I can't help more, but since it was never seriously considered I didn't research it much. At one point, they were almost certain that he had Cystic Fibrosis and we started seeing a pediatric gastroenterologist for that. Luckily, he did not it after all.

After watching him very, very closely for a year and doing all sorts of tests, he finally started growing again all by himself. He just a year ago finally made it onto the growth chart and is now in the 15th percentile.

Good luck! Hopefully they'll be able to figure out quickly why your DD isn't following a normal growth curve and get her going again.

 

[MosMom]

My sister is on growth hormones and gets a shot everynight after dinner. It isn't a biggie and we all know how to give her the shot. It rotates between arms, thighs, and stomach everyday. It is working though because she used to be quite scrawny and they went through several steps before going to hormones. They thought maybe she had a gluten allergy so they cut all gluten out of her diet, that didn't help. Eventually, they went to the growth hormones and she is just about normal size now. I don't know if there are other forms of growth hormones besides having a shot though. HTH a bit.

 

[The Mystery Machine]

Originally posted by Wendy
we started seeing a pediatric gastroenterologist for that. Luckily, he did not it after all.

DD suffers from constipation...I did mention this to the Endo. Hmmm...

Thanks for the replys. I am just praying she doesn't have Turners Syndrome, which means no ovaries basically and the use of a growth hormone is questionable in that case. Either way my little cutie is headed for some rough roads. I think she will be getting every Pokemon card that exists with all the tests she is going to have.

 

[danacara]

Originally posted by The Mystery Machine
Either way my little cutie is headed for some rough roads. I think she will be getting every Pokemon card that exists with all the tests she is going to have.

You are a good Mom Jeannine, obviously very sweet to her.

The good news: if it does indeed turn out to be a standard growth hormone deficiency, this is a correctable problem. There are even some interesting new therapies for Turner's, if that's the case.

Good luck to you both.

 

[crazyme5kids]

My kids were always in the 5th percentile. My youngest is there also (18 months). I know my son was only around what your daughter weighed at that age, and I think my daughter was in the mid thirties at 6 as well. I remember talking to the Dr about it though. Good luck with your daughter and I hope all goes well. Keep us posted, I'll be thinking about her.

 

[wld]

A friend of mines daughter was diagnosed with Turners at about age 10 I think. She has been taking growth hormone for a couple of years and just was able to stop last month after making it to around 5 foot (she is 14) She does have ovaries I am assuming because she started her period about a year ago. Her mom describes it as a "mild" case of Turners. She is a bit more immature than others her age and has had some social skill issues as well as some psychological ones. She would be the first to tell you she's not nuts though!!! Things came to a head this summer and she is actually doing much better now. If she does end up being diagnosed with Turners and you would like to talk to a fellow mom let me know. I know my friend would be willing to share. Best Wishes to you and your daughter

 

[BWVDenise]

My ds is 4 1/2 and is the size of a 2 yo. He is growing ever so slowly, but the ped. says that as long as he gains 2 lbs a year, he is considered normal. I worry so much about his size. I just hope that some day he can reach a light switch! Keep us posted, okay?

 

[HugsForEeyore]

My nephew is very small - he is seven and is about 41 inches tall - just tall enough for Splash Mountain! But he does have a rare skull deformity (it's called acrocephalopolysyndactyly type 2 in case anyone's ever heard of it!) which contributes to his small size. He was seven pounds at birth, and eleven pounds when he turned one. So he was never on the charts, either!

But when he was four, the doctors thought he was too small so he was suppose to start taking growth hormones. But when the doctors checked his natural growth hormone levels, they were normal. We were advised that children should never get growth hormones if their levels are normal to begin with. So the growth hormones were never given, and we just accept that he will never be a tall guy. He also had a point when he was one year old where he did not grow at all for many months, but now he is growing taller slowly. His projected height as an adult is somewhere between four and a half to five feet tall. But he is doing well, and that is most important.

Hope for the best for your DD!

 

[bsnyder]

Jennine,

My 9 year old niece, Ellie, was diagnosed at birth with Turner's Syndrome.

She has been on growth hormone since she was 4 via a daily injection.

This is from the Turner's Syndrome Society website (http://www.turner-syndrome-us.org)

"Growth hormone, either alone or with a low dose of androgen, will improve growth velocity and probably final adult height. Growth hormone is approved by the Food and Drug Administration for treatment of Turner syndrome and is covered by many insurance plans."

Please feel free to PM me if you have any questions about Turner's and/or growth hormone, and I'd be glad to try to help!

If the tests do show Turner's, please know that most Turner's girls lead very normal lives!

 

[LurkerLisa]

Sorry, but I don't have enough time at this moment to fully answer questions or tell our story, but here is the very short version (no pun intended)

I have a daughter who has been on Growth hormone for 6 years. She had a Pituitary tumor (Rahtke's Cyst) and had surgery when she was 7 to remove it. She is now a normal 14 yo and is 5" 4", but there are several things that we didn't know about then that we might have done differently. Please email me for more information - put something in the subject line about the DIS or growth hormone so I don't accidently delete you as spam.

Also, there is a support group that is pretty great
www.magicfoundation.org

Lisa
queenie123@aol.org

 

[sharbear]

Wow I am suprised that there are so many people on the DIS who have had experience with growth hormones. I thought that this was quite rare. My nephew gets shots for growth hormones. He has done really well from off the growth carts to the 50% range. In fact he is now taller than his brother who is two years older.

 

[The Mystery Machine]

I am going to get her blood drawn this week and the chromosome test will take 3 weeks to get results back.
Thanks & I will let you know!!!

Denise I was where you are BUT weight was never the concern with my dd, it is her height that is focused on and how it is plotted on her chart. As long as she was growing the minimum I think it was 7cms her ped wasn't concerned. She didn't grow enough from 5-6yrs old.
Basically from my visit to her Endocrinologist I got the impression I should have had my dd evaluated sooner simply because she was 16 1/2" at birth. I didn't know that.
If I could go back in time I would have taken her sooner to the specialist. All in all I do trust my ped and we have been watching it, so we will see.

Thanks