Growth Hormones - endocrinologist who prescribe to DMD boys who are NOT GH deficient

Hello families -

 

I just wanted to reach out to ask a very off the wall question.  I am trying to get my son on GH's and he is not GH deficient.  We have done all the testing but unfortunately, there is no dr. in Northern CA who will prescribe it (that I have found yet). 

 

On Thursday, we met with a great Pediatric Endocrinologist.  I went in there armed and prepared to educate etc.  She was very open to discuss but she is very hesitant.  She is  still 50/50.  She wants to talk to some of her peers  who are doing this. I will get her in touch with Dr. Rutter in Cincinnat and Dr. Bremer at Vanderbilt.

 

Do any of you know of any other pediatric endocrinologists who will prescribe GH to DMD boys who are not GH deficient?  If so, can you please forward their contact information to me.

 

Never a Dull Moment in our DMD world...

 

Thanks -

 

Kim Maddux

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I would just google Growth Hormone, I guess. Not sure where to find info except through your doctors. Have you tried Protandim as an anitoxidant? It is really good for our boys, in my opinion. At first, giving it to Seph, I was not sure it was helping, but he went off of it and lost range of motion and strenght. Going back on it, he got it all back in 2 weeks. :) Many parents think it is a great anti oxidant. I get mine from www.protandim.com, but there may be other sources. We take 1/2 a tab a day, but a 9 y/o could easily take a whole tablet. It is expensive, so we tried the whole and found it did not make a difference, so we went back to the 1/2 tab.
Good luck!!
Thanks for replying Lori.

As far as Michael's response about Cin. Children's Hospital and Dr. Wong and team - this opinion is definitely not the opinion of most. I have never heard a negative word about her and team. Very surprising... After a horrible experience at Stanford Univ. almost 5-1/2 yrs ago (with doom and gloom and no hope and no recommendations for meds, supplements, therapy etc), Dr. Wong and team is a dream come true for us and many families.

Regarding steroids (deflazacort), my husband and I researched almost a year before we started giving to Alex. What a hard decision. We knew the benefits but the side effects were scary too. But Alex has done very well on them and has not declined at all in 5 yrs. I know many boys who can't take them due to extreme tantrums and mood swings, so we are thankful that Alex can.

Regarding GH, Dr. Wong mentioned to us (about 2 yrs ago) that this was a possible option in the future. I started researching it. Obviously it's new and not a lot of data. I learned a lot from the other families. When I was in Denver in June at the PPMD conference, I asked every parent if their son was on GH and how they were doing. Every parent had positive things to say and said they had no regrets. But again like all meds, there are side effects.

Of course, I am scared about it. I have been praying a lot that we make the best decision for Alex. What parent wants to give meds to their kids, especially when we know it can cause them to have stunted growth, cataracts etc. But look at the alternative. Boy it Sucks making these decisions.

What I love about Dr. Wong and team, is they treat the person, not just the disease. It is so rare to find a doctor like that. Alex is doing really well but he has not grown in 3 years. We just want him to be more like the boys his age, if possible. Dr. Wong and team give us this chance, when no one else does. I don't consider that "preying" I call that, caring, helping....

It is a hard and personal decision and I support and respect every families choice. We learn from each other...and I value that so much.

Now off to a nice Sunday Brunch with my family.

All the Best. Kim
Yes, truly, , it is only my opinion concerning Dr. Wong & Human Growth Hormone, and I tend to be on the dark side always suspicious. Our son started HGH when he was 13 and stayed on it until he was 15, with minimal results. Deflazacort caused him to be diminished in height but not diminished in the amount of human growth hormone produced by the pituitary gland.

My opinion of the facility and the doctors themselves is they are great 100%, however their subtle agenda of recommending and using HGH, is still to me, suspect.

However, if one considers that normal height requires normal muscle, then DMD and normal height are contradictory, moreover, shorter stature translates into less stress on cardiac and respiratory systems. The short term gain of height and even perhaps strength are may be overshadowed by the longer term gains of reduced stature and stronger cardiac and respiratory. Will we ever know for sure?

No matter... it's still just my opinion, not fact. Parents should consider all perspectives and balance long and short term gains. Since every boy reacts differently and the disease seems to manifest itself subtly different as well, this compounds the variables and stress when making choices.

Perhaps I am out of line, but, ,my experiences tell me there are no silver bullets. There are only parents and children coping and fighting this disease and it's effects however they can with the best of their abilities. It can be damn hard sometimes....
To all - best of fortunes and continue to push for a cure, thanks for your tolerance of my ranting.
Michael
Well said Micheal and all but the being suspect part. I agree! We all do what we think is best for our child as we fight together through this disease. The variables are maddening and there is no silver bullet! I believe the 'cocktail' that helps will be different and individual for each child.
My experience with deflazacort was not so good because it cause him many side effects. I want to help my son but I dont want to harm him in any way.
My son and hasnt lost the hope the soon he will be able to be ok again.
Thank you Lori for the information I will go into the web page.

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