Growth Specialist?

Hello C.,

I have a son who is diagnosed with Growth Hormone Deficiency at age 3 (however, he probably had it from birth). He is now 9 and has been on Growth Hormone therapy, but it was a long process. There is a lot of information and a long story. If you e-mail me directly I would be happy to give you my number so we can talk. I am in Mesa also and would be happy to get together. I have been through all of the pediatric endocrinologists in the valley and Dr. Mary Sarrantonio is the BEST.

my response is completely based on my experience, so it may not apply. is your son showing an signs of food allergies? my son never ate very well, and when we started him on milk, threw up all the time. he was 9 lbs at birth, but quickly went down to the 5th percentile. his doctor thought nothing was wrong, but we followed our gut and took him off dairy. he instantly started growing. does your kiddo eat okay? does he throw up, have rashes, complain after eating, etc? finding the cause is important before you start thinking about ghtherapy. it could be an allergy, celiac, orother issues. questions to ask are: eating habits, other symptoms/problems, is it a steady decline, or plateau on the charts, is it a genetic thing (are both parents small), etc. then take it from there. good luck!

C.,

You need to have your son evaluated for Celiac Disease. This was already mentioned by Amanda. Diagnosis isn't the end of the world, but if it is this diet issue, and he is put on the right diet, your son has the potential to put on several inches within a year. I've seen it happen with other children.

In Tucson, I am the head of two special diet support groups and my daughter has Celiac Disease. Please email you and I can let you know what it's like.

The good news about a diagnosis is, there are no hormones or drugs involved. It is only a diet change.

~D.
Cel-Kids Tucson
Children's Special Dietary Group
Southern Arizona Celiac Support

This might seem 'out-there' to you, but have you ever heard of Celiac's Disease? It's a wheat gluten allergy... and in children it causes stunted growth. Do some research on it too, along with the hormone therapy and all that other stuff. People with Celiac's (I'm one) can't absorb nutrients into their bodies, because when they digest wheat gluten it strips the villi in their intestines - causing pain, bloating, loss of appetite, and a Whole Lot of other symptoms.

The symptoms are different in children than they are in adults - most kids who are diagnosed with ADHD actually have Celiac's. It's very hard to get a positive from a blood test though, very frustrating. But the only cure is to not eat wheat gluten, ever... so it's good to not have to be stuck on pills forever. Do some research - and, Good Luck!

My son had similar signs as yours - just gradually falling off the growth charts. After seeing several specialists and several tests, they have recently concluded that his growth hormone is deficient. But I would also explore celiac's and thyroid issues. We are now faced with the decision of whether to start growth hormone therapy and I am not sure that is the path we will take. If there is an actual health risk, I would consider it, but I don't want to put him through all that if he might just be a little short. My advice would just be to keep in mind your ultimate goals/concerns as you meet with specialists. They will likely be more than happy to run tests or give treatments indefinitely. (It's been 2 1/2 years running for us). Remember you are his best advocate for what is in his best interests.
My next step is going to be researching how heredity affects growth hormone performance. Good luck!

Hi C.!
I have been through the same situation. I am a mother of 2 boys my older son who is 4 1/2 is normal size and grew great. My youngest who is now 3 did not. He fell below the growth charts by the age of 1 and off of the weight charts by 3 months old. We had him tested for everything they could think of and we got out answer when his growth hormone levels came back to low. He started his growth shots a year and half ago and he is doing great! he has now caught up on the height chart at 25% and is finally on the weight chart at 1% that doesnt sound like much but it has made a huge difference. I have been through this whole process before because I was growth hormone deficient and took the shots for 7 years. I was the size of a 4 year old at age 9. but now I am 5'5" its not as bad as it sounds. If you ever have questions I would be more then willing to talk to you! My son is also seeing alvin perelman like the other woman that answered. He is great and my son really likes him. I would highly recommend him! anyway definetly if you have questions or anthing feel free to message me I will give you my number!
thanks
E.

Hi C.,
My son was on growth hormone therapy for years. It is definitely a controversial issue, and certainly not something I entered into lightly.

He was born normal size, but by 2 years of age his size fell completely off the charts. He was tested for many things and eventually diagnosed as Failure to Thrive. He spent his chilhood healthy, but was always a full 3 years behind in bone size. He was simply monitored annually until age 9, then they started watching his growth with bone growth hand xrays, and did another battery of tests to see if there was any other issues. Everything came back fine, but again, his bone age was 3 years younger.

At age 10 his bone age fell even farther behind, so finally the referral to an Endocrinologist followed. He administered a test that took about 4-5 hours where they used an IV to stimulate the body to produce it's own Growth Hormone, then tested his blood levels. My son was then "officially" diagnosed with Pituatary Dwarfism - also called Growth Hormone Deficient. (my son's nickname in school was dwarf, so I was glad I could use the term GHD. Kids can be so mean)

I did the research, I read the books, I sought additional opinions, and hesitated quite a bit before making my decision. After all, this was MY son. No one else cared about him the way I do, and no one else feared for him as much as I do. But the reality was that he would most likely never even reach 5 feet tall. And the hormone used is supposed to be safe, and the body recognizes it as something that is supposed to be there.

My son is 17 and 5'8". We stopped the growth hormone just before he turned 16, and that was my son's decision at the time. We could have continued since his bones were still open, but he had caught up to the average size of his friends, and I think he was just tired of taking the shots after a few years. He is happy the shots worked, and feels normal - and no more height related nicknames for him.

We saw Dr. Alvin Perelman in North Scottsdale, and we do highly recommend him. He is wonderful, and always available by phone after hours. His website shows that he also has a new office in Mesa:
http://www.swpedendo.medem.com/

If you go to the website there are extensive resources and websites you can go to for more info. The other organizations I used for info:
http://www.magicfoundation.org
http://www.hgfound.org

Good luck to you and your little one!
D.