Anyone have a child with growth hormone deficiency?

shiloh17 · January 2012

Ds is 19months, Ftt, ng feeding tube due to failure to swallow solid foods. We just began a feeding therapy clinic at the children's hospital to get him eating. Weight wise, he is doing well and gaining (just hit the 5% on the charts). Length is another story. He is not growing as expected. We have been seeing an endocrinologist who has done some testing and it seems like all signs point to GHD. We have one more rest to confirm (pituitary sweat test) in March. If the test is positive, we will begin growth hormone injections. This all sounds so scary. Anyone out there ever deal with this? I would appreciate any advice. ETA--sorry for the typos. Im on my phone.

gracer1294 · January 2012

My 2 year old has GHD. We have been to the endo with her many times. They screened for all genetic and chromosomal abnormalities...she came back fine. Her GH levels were low each time. When she was born she was at the 90th percent for height and weight. she fell rapidly on the charts. First for weight then height followed. She was off the charts at 18 months. At 20 months she crept back onto the charts 5th % for height, but not weight. We have been providing her with high fat foods and pediasure drinks to encourage weight gain. Depending on her growth at her 2 year appointment, the doctors plan to do a growth hormone simulation test in the hospital...she will be pumped with aminio acids through one IV and then blood draws through another because it will give a more consistent and valid score of her GH. Depending on these results the doctors say that she may start with the GH...my husband and I are unsure of moving in that direction though and may decline. She has no other health concerns. we are just 6 months ahead of you in the ages of our children. Although my duaghter is 2 she easily fits in 12 month clothing... she is a peanut, but thriving otherwise.

lauraandlee · January 2012

My son has pan-hypopituitarism, diagnosed at birth. Among other hormone deficiencies, he does not produce growth hormone. It was really overwhelming at first, but I've now done over 16 months of shots, every single night and it's 10000% routine. I think starting the injections was the scariest part of his diagnosis. It really has just become part of our bedtime routine though, and he doesn't even flinch each night when getting the shot.

It is important for me to note, too, that growth hormone is NOT just for growing. It has many important roles in the body. It is a really important hormone that actually contributes to overall health and well-being (my son will take GH for his entire life, even in adulthood to maintain energy and muscle mass, bone strength and even help maintain his blood sugar.

I've posted a lot on my blog about his GH. If your insurance approves Saizen (from EMD Seronno), I would recommend it. That particular brand of GH has been said to sting less and the company associated with the drug (Connections for Growth) has the absolute BEST customer care and nurses. They sent a nurse to the house to train us for a few hours, helping us mix the hormone and everything.

Also, they offer a copay card for up to $1500 of co-pays. (Other drug companies do too, so make sure you ask about it). It's not a cheap drug by any means, but it is making all the difference in the world for our son.

ETA - Also, check out the Magic Foundation. They are a group solely dedicated to GH disorders and have info on every type on their site. They also have a FB page.

shiloh17 · January 2012

Thank you so much for all the advice. I will definitely be asking more questions once he is done with the pituitary test, and the diagnosis is confirmed. Im thankful to have other moms to help me out ??

mommy06 · January 2012

My dd has gh deficiency along with diabetes incipits. We have given her shots every day since she was three weeks old. It is scary at first, but shortly becomes routine. We are going to have her gh tested again in march to see of she started producing it on her own ( which we think she mayr have)

Gh is so imporntant in many other ways too , not just for growing. We actually found out she had it because her blood sugars continued to stay low and because we already knew she had di we tested further.

Its scary at first but it really gets easier. Good luck

kflynn81 · February 2012

I was actually doing a search on here to see if there were women TTC with pan and came across your posting. Just wanted to let you know that I was diagnosed with panhypopit as a child and required daily injections of GH from age 10-15. They said without it I would have wound up aroudn 4'6 so now at a whopping 5'2 I'm forever grateful my parents took me to doctor after doctor to find out what was wrong with me. If you have any questions I'd be happy to share what I went through/go through currently....also, yes Magic Foundation is awesome. They're based out of Oak Park, IL not sure where you are located but that is close by to where I live in the Chicago suburbs. They are national though so I'd definitely recommend looking into that organization!

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Anyone have a child with growth hormone deficiency?

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