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Tuesday, March 16, 2010

Growth Hormone Deficiency-After the Growing Years Intro

Well after good intentions of starting this blog YEARS ago....life got in the way....2 kids got married....4 grandkids....just stuff! But now- I finally am going to make an honest effort to stay on top of this.
Why?
Well... for the past few weeks I have been getting frequent calls from Moms all over the country with the same or very similar problems....Their now grown child...who was on growth hormone therapy as a child...is now experiencing more medical issues and they need help.

Why are they calling me?

My name is Jamie Harvey and I am a co-founder of a children's charity called The MAGIC Foundation. (http://www.magicfoundation.org/). My daughter was one of the first on the bio-identical growth hormone (not a generic) from 1986-1997 (she started at age 5 and stopped at age 16).  (You can read about the early days in the post from 2007 archives on this BLOG.)

Over these many years, people have heard me talk (or read my early story online) about problems in this journey of medical "new-ness". And because there is so very little information "out there"- desperate parents are tracking me down for answers.

I need to make it clear that I am not a medical professional of any sort. I am just a mom (and now a grand-mom...lovin it!) who has been at this a long...LONG time. I decided to put all of this together so that families have some information to consider during their quest for answers.

This process will take a while...so just hang in there with me!

In the early days....when we finally got my daughter diagnosed as being growth hormone deficient and on medical treatments as a child...things were great and we thought that was the end of the problem....unfortunately it was not. Growth hormone deficiency can last a lifetime and we did not know that....way back when....and we found out the hard way! It took 12 long, agonizing years to learn about the issue of growth hormone after the growing years.

And because I know this can be boring...I am going to tell you WHY this is important ...

During the 12 years (after my daughter stopped her GH treatments)...she:

1. Developed an irregular heart beat
2. Gained lots of weight
3. Went on anti-depression med's
4. Struggled to get out of bed regularly
5. Began to have a thinning of her hair
6. Was diagnosed with Hashimoto's thyroiditis (hard to control thyroid)
7. And she began to loose her vision! Meaning she was getting close to legally blind WITH glasses on.

I will go into these issues and more in the upcoming days....

Labels: magic foundation;growth hormone deficiency

5 comments:

tonya said...

i have a comment about the eye sight, my daughter has been on ght since august of 2009 and sometimes she complains that she cant see or maybe they water up or something. she is turning 4 in august this yr and i am so concerned about this medicine it terrifies me.

ghdmom2 said...

I think you misunderstood....without the GH she was going blind. I will outline more later- but the muscles to her eyes were atrophying (aging) from not having enough GH. Without going back on it- she would have lost her vision. I would check her for allergies. The medicine was a huge blessing for her....please go to the Yahoo listserv and read the hundreds of comments from parents...or email me directly (jamie@magicfoundation.org). I will be glad to talk with you and help you understand all of this so that you are so informed that it takes the fear away. I have been there and cried myself to sleep many MANY nights...I am here if you want to talk!

tonya said...

yes most of the time i do misunderstand things. Thank you so much for clarifing. I acually think we have spoken in the past but im sure you talk to so many people that you would not remember my daughter. Again thanks so much for having this blog im hoping that it will answer all of my questions since i am fairly new to this condition.

Jennifer said...

I have to say I'm shocked. I was on GH between the age of 7 to 14. I wish I stayed on it longer since I am only 4 ft 11 inches. But I am happy being small. I am 36 now and finally saw an endocronoligist and found out I am AGHD. My stim test only peaked at .09 and my first blood test was.05. I really thought I was going insane at the end and when he told me the cause of all my physical and emotional problems are because of my lack of hormones. I cried because I knew it had something to do with my childhood Growth hormone deficincy but never got the right answers. I started my shots dec 23 2010 and even in two weeks I am not feeling like I'm about to die any minute. Really I felt like a watch that was winding down and about to stop. But I couldn't stop it. I could barely get up three stairs I had to pull myself up. I was always trembling inside, and I didn't even want to be around my family. I am thankful to God for helping me find my Dr. so I could be tested and relieved that I am starting to feel better. Just wanted to share with people who might understand.

NoahsPudding said...

Jamie,

Your story is amazing. I have been going through too much to handle since I got pregnant. We saw in the ultrasound images that our son was not developing "right" when I was 25 weeks along. The rest has been a rocky road. He has been on GH shots for 15 months now and he is still not catching up. The doctors are trying to find out if there is something else besides GHD.

This is very difficult. Very difficult.