New. Growth Hormone defiency

Tina - posted on 02/11/2009 ( 22 moms have responded )

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My daughter is 11. Eatting has always been an issue for her. She has never been up to the 3% on the growth chart. We found that her bones are only the age of a 9yr old. After a lot of testing, we started growth hormone injection 2 weeks ago. My daughter also was diagnosed with an eatting disorder and is seeing a dietician and psychologist for that. I was wondering if anyone else has experienced growth hormone treatment and what that outcome has been. Thank you.

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Annie - posted on 07/16/2012

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Hi Jenny, this post was years ago. Can you share with us how your daughter is doing now? There are lots of us making the HGH choices who would appreciate your comments and experiences. Thanks Annie

Annie - posted on 07/16/2012

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Hi Tracy, this post was years ago. Can you share with us how your son is doing now? There are lots of us making the HGH choices who would appreciate your comments and experiences. Thanks Annie

Annie - posted on 07/16/2012

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Hi Cheryl, this post was years ago. How is your son doing now? We are trying to make choices about the HGH and we are hoping to get opinions from folks whose kids have been on HGH for a while now. Thanks! Annie

Annie - posted on 07/16/2012

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Hi Summer, i just read your post about the mortality rate of children who take HGH. Has your doctor shared any more information with you? I hope your son is doing well!

Annie - posted on 07/16/2012

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Hi Tina. My son is 12 and is also about 2 years behind in bone age. He is a foot shorter than most all his classmates, has very childlike features, and his energy is nill. Something is just not right, even being slow to grow he is just not growing each year? It has become a major confidence issue and he just does not seem healthy and energetic. I have blamed the low energy on him being a poor eater but when he does eat well for a few days it does not change..... I am looking forward to your comments and observations as you observe your daughters progress. My sons stim test is next week, while I hate for him to have a problem, it will be good to know what it is or isn't and that there is help!

Summer - posted on 11/15/2011

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I'm not saying its definative, but my doctors chose not to give my son hormones because they said they are seeing an increased mortality rate in adults who had them as children.. I have a 5 1/2 yr old boy that is 32 lbs and 39 inches tall..Good Luck!!!

Vanita - posted on 11/11/2011

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want help in motivating kids for everyday injections for GHD. my son is 3.5 yrs & needs GHD treatment

Stacey - posted on 03/17/2011

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My son was diagnosed GHD around 3yrs old hes been on humatrope for close to two yrs hes always needed a nap but lately it seems like hes sleeping more than he should be, even falling asleep while his teacher is talking to him..his last check up showed that his growth is slowing..whats out there that works better than humatrope and is normal for them to sleep so much?Thanks for your help and im glad to find a place where others are dealing with this issue.(:

Cheryl - posted on 03/27/2009

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Rebecca, my daughter is IGFD and would also be taking Increlex if she's wasn't in the 3rd percentile (my husband and I are both tall resulting in her being higher on the growth chart). Currently, she's 7 years old, 41lbs and 44 inches tall and wears size 6 slim pants with the elastic pulled as tight as it will go. In shoes she wears size 10 (toddler). Her younger brother (just turned five this month) is the total opposite at 97th percentile in height and 95th in weight.



Recently she has been diagnosed with ADHD and may be starting medication soon. She struggles in the classroom and gets frustrated when things get too hard. Does your son take medication? If so, has it helped?

Tracy - posted on 03/27/2009

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Yes. We were fortunate that our son's growth problems were diagnosed early. He was tested at the age of three and started on growth hormone replacement injections at 3 1/2 years old. He is now 10 and is in the 75% of his growth chart which is a big improvement since he started in the negative 15%. He recently began giving himself his injections which was a major milestone for him. Feel free to ask me any questions. I will try to answer them if I can. Also google the MAGIC foundation. They are a not for profit clearinghouse that has two main purposes. 1.Diseminate information about all types of growth disorders. 2.Support for both family and kids with growth disorders.

Emily - posted on 03/24/2009

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YEs, I have an 11 and a 6 year old on HGH.  each 6 months as we have gone in to reevaluate is has been very exciting.  Especially the weight gain.  We also see a dietitian.  There is just so little information out there.  We have had success with nuts and cheese.  My 11 thinks nuts are soooo low fat.  What she doesn't know. 

Jenny - posted on 03/24/2009

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Hi , my 17 year old daughter started growth hormone treatment when she was 15 it is working , unfortunately for my daughter she wasn't diagnosed untill she was 14 as the doctors just thought she was being funny with food. When they did the tests she had the bones of an 8 year old.She has grown about 6 inches , she is still small for her age and under developed which upsets her . As your daughter is 11 hopefully she will catch up sooner , good luck

Tina - posted on 03/10/2009

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We went to the Psychologist and dietician the other day and the psychologist feels that my daughter is either slightly depressed, suffering from some anxiety, or has an ADHD issue. She suggested we put her on Zoloft. I'm of course reluctant to do so because she is only 11 but she is having problems in school now, which has never been an issue. She went from an A-B student to C-D-F student. She has missed a lot of school (17 days) just due to so many dr visits. She has never had ADHD before so the dr doesn't think it is that. I guess we are going to try the Zoloft and if we don't see a change then take her back of it. I'm kind of at my wits end. The other thing I was wondering is if anyone has ever had pealing skin after the hormone injections. My daughters hand are pealing like crazy. When she takes a bath her skin on her hands are completely white. Weird! Anyway, thanks for the help.

Rebecca - posted on 03/10/2009

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My son, Andrew, is 9 (as of yesterday). He was diagnosed as having GHD when he was 1 1/2 and started taking Genotropin injections daily. By the time he was 5 he was also having very high blood sugars and still not growing or gaining weight. By age 6, he was diagnosed with primary IGFD and switched to Increlex twice daily. At first, we had some really low sugar levels but nothing needing hospital visits for. Just made him eat whatever I could find that he would eat. Unfortunately, to this day sometimes he won't eat a reg meal at dinner until he has a little debbie or a cupcake but then will eat his supper. I'm so happy to say that even though I JUST bought him a size 7 slim in pants and a 12 in shoes, he's gaining a full inch and at least 2 lbs every visit with the endo!!!!!! His bone age HAS caught up finally, and he no longer looks like a frail little boy. We still have sugar issues and man can this kid get GRUMPY, but other than that he's no longer being picked on at school and other kids telling him he looks like a kindergartener (when he's in 3rd grade!). I didn't notice a rapid change in him, but over 3 yrs I can finally say he is stable!!

Andrew has other problems though! He has hypothyroidism, asthma, and PDD-NOS and diagnosed ADHD. It just seems so strange to me that a child who slept for the 1st 3 yrs of his life (literally!) could be ADHD. It's like one day he "woke up" and just cant seem to stop running. The autism is very mild but still has sensory issues and routines. I have always wondered if there is another kid out there like Drew in this respect! Is he just catching up for missed time while he was sleeping or is it something else? The hypothyroidism is under control but I can always tell when he needs to be given a higher dose, as he just sleeps the day away. Does anyone know of a child with this who has ADHD or anything similar? Is it rare, or even possible? Anyone???

Kate - posted on 03/03/2009

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my daughter is 11 and been on growth hormone for 2 years. she is the size of a 6 year old. it has definitely helped. she went 2 years previous to shots with no growth at all. since the shots she is growing like most kids her age. humatrope didn't seem to do as well as genotropin has done. my daughter has no appetite at all. if i would let her, she would go all day without eating and have problem with it

Tina - posted on 02/23/2009

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Tanya, I don't know if the doctor has showed you the devices for giving the injections but we picked on called the easypod. Everything is programmed in on it. I never touch the needle and actually you never see the needle unless you turn the device upside down. My daughter just started giving the injections to herself about 5 days ago. I think the device takes a lot of the pressure off of me because all I do is push a button and the device does the injection, not me. I hope this helps.

Tanya - posted on 02/22/2009

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forgot to say, he's a twin, his sister is around 3 inches taller than he is and although she's not quite on the graph she has remained on target.....

Tanya - posted on 02/22/2009

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my son has just turned 7, he's about the height of a 4 year old but eats really well. we're waiting to start hormone treatment as they have decided after monitoring him for the last 18 months or so that he is hormone inseficient.... i will keep you posted as and when there is anything to report. I'm a little worried about administering the injections themselves but i have been told that they are better at doing this themselves. he seams very laid back about everything but i think thats because i've played things down a little, hoping my ex steps in if needed but not hoping too much!

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We are going in for the GH testing tomorrow....  J also is not a big fan of eating...  he is 4, but his bone age is 2

Cheryl - posted on 02/14/2009

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I also forgot to mention you can join the Human Growth Foundation (for a donation of $35 per year - tax deduction). The web administrator is great and will send you alot of medical information concerning your daughter's condition. He will also communicate with you in a one on one situation if you would like.



Cheryl

Cheryl - posted on 02/14/2009

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Tina,



I've been looking for all support groups that I can find concerning growth issues. My daughter is seven years old and is IGF1 Deficient (actually resistant) or Severe Primary IGFD is another way of stating the same thing. This is a great site but if you're interested there are a couple others that I've found. Magic Foundation and Yahoo Groups.



See you there!



Cheryl

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