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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Is it possible that your insurance company would not cover it if he is not deficient in gh?
I remember seeing reports of children with growth hormone deficiencies or dwarfism and DMD but little or no muscle degeneration for example see:
Abstract
A patient with Duchenne muscular dystrophy (DMD) and growth hormone (GH) deficiency is described who had no clinical evidence of muscular weakness before initiation of GH replacement therapy. Treatment with human GH resulted in appearance of symptoms of easy fatigability and proximal muscle weakness. Thorough investigations including serum creatinine phosphokinase (CK) levels is recommended in every patient with GH deficiency before starting GH replacement therapy (www.ncbi.nlm.nih.gov/pubmed/15569563)
Seph is on HgH...given by Drs Wong and Rutter (so no help there) and does have normal levels. Our insurance does pay for it and always did. We did not even have to file an appeal. THis is not always the case, but Seph had SEVERE growth delay due to steroids. He has grown 6" in 2 years and is now at the low end of normal, almost back to the growth curve he was on prior to steroids. No negative side effects for us.
Thanks everyone. Yes, I heard that insurance is covering in most cases. Not many drs out there doing this yet. A long way to go.

Kim
Kim, we live in San Diego, however are a military family so have access to Naval Medical Center San Diego...Trey's endocrinologist who we saw for the first time last week is open to it, I don't know if she is in the Navy, just serving the Navy or if she is a civilian working within the Naval Hospital. I will check for you though. Many of the civilian Naval Docs work at the base 2-3 days a week and another clinic in the area 1 or 2 days a week.

She is very open to allowing us to do the Hgh if we choose...She actually while in school was a caretaker/nurse for a man with DMD so she luckily sympathizes and knows all about the disease. Trey is only just turning 6 but is only 6% in height (has always been little but been on steriods 6 months) and we are waiting for the blood tests to come back. She however stated that regardless, if we wanted them, that she would prescribe them to us...we just then have to weigh out the pros and cons, if hubby is gone and Trey isn't Hgh deficient but given it, he may hit a growth spurt and get very tall and I (being 5'7 and 115lbs) may have a difficult time helping him maneuver in the later years.

Anyhow, I believe we are going to take her up on the offer regardless, so with that being said maybe she will luckily be a civilian or can advocate for you...we however are waiting for the AVI patients to be chosen before we move forward as Trey is in line for the study.

Hugs, Cori
Hi Cory -

This is great. I would love to talk with your dr. if she could work with us also. We are in Northern CA and would be willing to see her if possible. I hope she has civilian patients also. I am not 100% that the dr. we saw here locally is on board yet. Our other option is the endocrinologist at Cincinnati.

If she is willing, can you give her my contact information:

Kim Maddux
kim@manda.net
925-362-9955

Thank you very much.

Kim




Cori said:
Kim, we live in San Diego, however are a military family so have access to Naval Medical Center San Diego...Trey's endocrinologist who we saw for the first time last week is open to it, I don't know if she is in the Navy, just serving the Navy or if she is a civilian working within the Naval Hospital. I will check for you though. Many of the civilian Naval Docs work at the base 2-3 days a week and another clinic in the area 1 or 2 days a week.

She is very open to allowing us to do the Hgh if we choose...She actually while in school was a caretaker/nurse for a man with DMD so she luckily sympathizes and knows all about the disease. Trey is only just turning 6 but is only 6% in height (has always been little but been on steriods 6 months) and we are waiting for the blood tests to come back. She however stated that regardless, if we wanted them, that she would prescribe them to us...we just then have to weigh out the pros and cons, if hubby is gone and Trey isn't Hgh deficient but given it, he may hit a growth spurt and get very tall and I (being 5'7 and 115lbs) may have a difficult time helping him maneuver in the later years.

Anyhow, I believe we are going to take her up on the offer regardless, so with that being said maybe she will luckily be a civilian or can advocate for you...we however are waiting for the AVI patients to be chosen before we move forward as Trey is in line for the study.

Hugs, Cori
Kim, I will most definitely do so =) We see her again in like 2 weeks! Cori



Kim Maddux said:
Hi Cory -

This is great. I would love to talk with your dr. if she could work with us also. We are in Northern CA and would be willing to see her if possible. I hope she has civilian patients also. I am not 100% that the dr. we saw here locally is on board yet. Our other option is the endocrinologist at Cincinnati.

If she is willing, can you give her my contact information:

Kim Maddux
kim@manda.net
925-362-9955

Thank you very much.

Kim




Cori said:
Kim, we live in San Diego, however are a military family so have access to Naval Medical Center San Diego...Trey's endocrinologist who we saw for the first time last week is open to it, I don't know if she is in the Navy, just serving the Navy or if she is a civilian working within the Naval Hospital. I will check for you though. Many of the civilian Naval Docs work at the base 2-3 days a week and another clinic in the area 1 or 2 days a week.

She is very open to allowing us to do the Hgh if we choose...She actually while in school was a caretaker/nurse for a man with DMD so she luckily sympathizes and knows all about the disease. Trey is only just turning 6 but is only 6% in height (has always been little but been on steriods 6 months) and we are waiting for the blood tests to come back. She however stated that regardless, if we wanted them, that she would prescribe them to us...we just then have to weigh out the pros and cons, if hubby is gone and Trey isn't Hgh deficient but given it, he may hit a growth spurt and get very tall and I (being 5'7 and 115lbs) may have a difficult time helping him maneuver in the later years.

Anyhow, I believe we are going to take her up on the offer regardless, so with that being said maybe she will luckily be a civilian or can advocate for you...we however are waiting for the AVI patients to be chosen before we move forward as Trey is in line for the study.

Hugs, Cori


Cori said:
Kim, I will most definitely do so =) We see her again in like 2 weeks! Cori



Kim Maddux said:
Hi Cory -

This is great. I would love to talk with your dr. if she could work with us also. We are in Northern CA and would be willing to see her if possible. I hope she has civilian patients also. I am not 100% that the dr. we saw here locally is on board yet. Our other option is the endocrinologist at Cincinnati.

If she is willing, can you give her my contact information:

Kim Maddux
kim@manda.net
925-362-9955

Thank you very much.

Kim




Cori said:
Kim, we live in San Diego, however are a military family so have access to Naval Medical Center San Diego...Trey's endocrinologist who we saw for the first time last week is open to it, I don't know if she is in the Navy, just serving the Navy or if she is a civilian working within the Naval Hospital. I will check for you though. Many of the civilian Naval Docs work at the base 2-3 days a week and another clinic in the area 1 or 2 days a week.

She is very open to allowing us to do the Hgh if we choose...She actually while in school was a caretaker/nurse for a man with DMD so she luckily sympathizes and knows all about the disease. Trey is only just turning 6 but is only 6% in height (has always been little but been on steriods 6 months) and we are waiting for the blood tests to come back. She however stated that regardless, if we wanted them, that she would prescribe them to us...we just then have to weigh out the pros and cons, if hubby is gone and Trey isn't Hgh deficient but given it, he may hit a growth spurt and get very tall and I (being 5'7 and 115lbs) may have a difficult time helping him maneuver in the later years.

Anyhow, I believe we are going to take her up on the offer regardless, so with that being said maybe she will luckily be a civilian or can advocate for you...we however are waiting for the AVI patients to be chosen before we move forward as Trey is in line for the study.

Hugs, Cori
Hello I would like some information about this growth hormone. So with dmd also the growth hormone is not ok or the steroids afects the growth hormone. My kid is taking deflazacort does deflazacort can harm my kid?
Welcome to the Cinci "unregulated clinical trial for GH" Both Rutter and her Mentor think they can prey on DMD kids and their families fears; and follow the boys and see what happensto them. We fell for this farce for two years; nope doesn't do anything; better off not poking your sin ecery day at $5500/month and finding a local endo who can monitor him for the several complications that can occur from high doses of GH. We were lucky and cut out the nonsense before we caused real problems. The Cinci folks are off the reservation on what they are doine, eventually they'll get called on the carpet for this nonsense.
BTW insurance WILL NOT cover GH is boys are not getting a GH deficent diagnosis, though Rutter does some sweet wording for purposes of getting the diagniosis palatable for the insurance companies.
So this GH doesnt do anything good for the kids? Does the growth hormone can be deficient with dmd. Thank you for your response. Does deflazacort afffects the growth hormone?

Michael Piacentino said:
Welcome to the Cinci "unregulated clinical trial for GH" Both Rutter and her Mentor think they can prey on DMD kids and their families fears; and follow the boys and see what happensto them. We fell for this farce for two years; nope doesn't do anything; better off not poking your sin ecery day at $5500/month and finding a local endo who can monitor him for the several complications that can occur from high doses of GH. We were lucky and cut out the nonsense before we caused real problems. The Cinci folks are off the reservation on what they are doine, eventually they'll get called on the carpet for this nonsense.
BTW insurance WILL NOT cover GH is boys are not getting a GH deficent diagnosis, though Rutter does some sweet wording for purposes of getting the diagniosis palatable for the insurance companies.
That is Micheal's opinion and only his opinion. My son has been on growth hormone (with normal HgH levels) for 2 years and my insurance never blinked an eye to pay for it. Steroids do not affect normal growth hormone levels, but do cause our boys growth to be stunted. My son, was chronically delayed in growth due to them. He had a bone age of 3.3 at the age of 6.2. In the last 2 years, he has grown 6 inches and it has made a tremendous difference in how he feels about himself as well as reduced the bullying that occured due to his small size. There is some (as of yet unproven) data that indicates that HgH may help slow progression and/or slightly reverse some damage from DMD....but that is not why you go on it...you go on it for stunted growth and quality of life issues. It is not a drug to 'play' with. It is very expensive, it can have some serious side effects that must be watched and monitored. We have not had any side effects thankfully, but I do know some who have.
Hope this helps with a different persepective.
Thank you Lori for your response. My son is nine he is no longer able to walk. He has been taking deflazacort for a year and know he has acne problems and also gastritis yesterday a went to take him a blood sample because a doctor wanted to see all the nothing else was damage in his blood or any other organ. Right know my son is taking medicina for the gastratis. He is like my size and he is on a special diet because we dont want him to get fat because this will not help him to make exercises. This tests are being done by an oncologist he would like to help me to find the most effective antioxidant for my son. Where could I look for some more information about the grown hormone?
Thank you




Lori Ware said:
That is Micheal's opinion and only his opinion. My son has been on growth hormone (with normal HgH levels) for 2 years and my insurance never blinked an eye to pay for it. Steroids do not affect normal growth hormone levels, but do cause our boys growth to be stunted. My son, was chronically delayed in growth due to them. He had a bone age of 3.3 at the age of 6.2. In the last 2 years, he has grown 6 inches and it has made a tremendous difference in how he feels about himself as well as reduced the bullying that occured due to his small size. There is some (as of yet unproven) data that indicates that HgH may help slow progression and/or slightly reverse some damage from DMD....but that is not why you go on it...you go on it for stunted growth and quality of life issues. It is not a drug to 'play' with. It is very expensive, it can have some serious side effects that must be watched and monitored. We have not had any side effects thankfully, but I do know some who have.
Hope this helps with a different persepective.

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