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Permalink Reply by Lori Ware on January 9, 2009 at 11:47am

Kim, can you go through the MDA to get your son a scooter? It may get him relief while waiting on the chair! Unfortunately, that would use your MDA funds for 3 years, but maybe a scooter could accomodate him for 3 years...how is his back support and arm use? The cost is about 1500 for the Go-Go Elite Traveler by Pride. We just got my son one for long distances. He really doesn't need it for school yet, but it would work for that too if needed. Just a thought....
good luck! I can't believe they would deny him a chair when he needs one! Also, the MDA may have a loaner chair you can use in the interim.
Our local MDA is pretty bad and I had to get Dr. Wong to email them about THEIR own policies that they were trying to get around, but we got it done quickly after that! Our scooter provider was shocked that the local MDA had lied to them for so many years about their policies.
Anyway, just some ideas that may help in the short term.
Lori

Kim Innabi said:

Hi Janine:

The doctor is going off of some basic blood tests that indicate to him that he falls within the normal range for GH. He also feels that Nicholas's short stature is due entirely to the steroids - not "real" growth hormone deficiency, and he would not be short if it were not for the steroid use over the years. He is on the verge of authorizing the stim test, but he says the results will not make a difference, even if he has low GH, it is because of the steroids. He's big on the "side effects", and not having any protocol for prescribing GH to DMD patients. Since I'm fighting them to get a wheelchair right now too, it is hard to also carry this battle on - I'm asking for too much at once. He is 12 and has trouble walking now, so he is obviously going to need the wheelchair - doesn't matter how short/tall he is!!! It seems like in my case, my insurance company has a lot of ways around covering Nicholas's needs. If I had known 12 years ago I would need such extensive care, I obviously would not have stayed with Kaiser - but isn't that what INSURANCE is for...the unexpected?

Kim

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Permalink Reply by Kim Innabi on January 9, 2009 at 11:59am

Hi Lori:

Nicholas has had a scooter since August (we had to pay for it - we used the MDA $ for his new AFO's this year). He is having a hard time getting on and off it and he isn't seated properly (according to PT in Cincinnati), but it really is a lifesaver! He uses it at schoool - if not for that he would be struggling for certain. We had been pushing him around in the manual chair for at least the last three years, but in Jr. High it's hard to ask other students to take on that responsibility along with their own books and things (not that his friends wouldn't have kept doing this-they have been so great with him). The independece it has given him is wonderful for his self-esteem. It's amazing how fast he has started weakening though. Just within the last couple weeks he has been having trouble getting up off of the couch without help. He still has the strength to walk really short distances, but I help him with everything - getting up from bed, dressing him, bathroom, etc. He can feed himself and his hands and arms are very strong though - that's a good thing! Thanks Lori,

Kim

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Permalink Reply by Lori Ware on January 9, 2009 at 12:39pm

We were going to get Seph a customized seat on his scooter, but the seat would cost more than the scooter! My PT is sculping a pad for the seat that will allow for proper seating. I don't know if this is an option for you, but a thought! Good Luck!
Lori

Kim Innabi said:

Hi Lori:

Nicholas has had a scooter since August (we had to pay for it - we used the MDA $ for his new AFO's this year). He is having a hard time getting on and off it and he isn't seated properly (according to PT in Cincinnati), but it really is a lifesaver! He uses it at schoool - if not for that he would be struggling for certain. We had been pushing him around in the manual chair for at least the last three years, but in Jr. High it's hard to ask other students to take on that responsibility along with their own books and things (not that his friends wouldn't have kept doing this-they have been so great with him). The independece it has given him is wonderful for his self-esteem. It's amazing how fast he has started weakening though. Just within the last couple weeks he has been having trouble getting up off of the couch without help. He still has the strength to walk really short distances, but I help him with everything - getting up from bed, dressing him, bathroom, etc. He can feed himself and his hands and arms are very strong though - that's a good thing! Thanks Lori,

Kim

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Permalink Reply by Kim Innabi on January 9, 2009 at 12:45pm

Thanks Lori! That is definitely a good idea for Nicholas now, too - I will have to look into that!

Kim

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Permalink Reply by Cheri Gunvalson on January 10, 2009 at 9:16am

Kim Innabi said:

Thanks Lori! That is definitely a good idea for Nicholas now, too - I will have to look into that!

Kim

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Permalink Reply by Cheri Gunvalson on January 10, 2009 at 9:20am

An additional benefit from growth hormone is it took away the cushionoid symptoms such as the puffy face which really bothered my son who is 17. Prior to GH (and the testoserone cream) he looked like an 11yo. Good Luck, Cheri

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Permalink Reply by Janine on January 10, 2009 at 10:14am

Cheri,

Interesting that you said that. Yesterday at dinner when I looked at my son I thought his face didn't look as puffy as it had been.

Kim,

The response I got from my son's endo was that yes, steroids do stunt growth but they don't suppress the growth hormone levels. I do not feel that the neuro and the endo would have been open to gh if his levels had not been so low.

Janine


Cheri said:

An additional benefit from growth hormone is it took away the cushionoid symptoms such as the puffy face which really bothered my son who is 17. Prior to GH (and the testoserone cream) he looked like an 11yo. Good Luck, Cheri

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Permalink Reply by Dawn on January 23, 2009 at 2:13pm

Hi

I have just joined the forum and have been reading the threads about GH and steroids. We are in the UK and have a problem in that the steroids are affecting our son's growth. He is 7yrs 6mths and measure 111cm and weighs 23kg. We have an appointment with the Consultant in early Feb so I am trying to get as much information together as possible. You mention the stim test - I presume this is to check the GH levels. Should I be asking for this to be carried out? Also, how do they distinguish between the effects of the steroids and GH deficiency? From reading above, it appears that if growth is suppressed due to steroids then GH may not be prescribed, but if GH levels are low and they are on steroids then they are likely to be prescribed. I had concerns about my son's growth prior to starting the steroids but this angle got lost in all the turmoil if being diagnosed with DMD. I would appreciate any information you can give me so that I can discuss all angles with the Consultant. Have any of you who have been affected by steroids in this way had to reduce or even stop the steroids? If so, what happened?
Thanks

Dawn

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Permalink Reply by Lori Ware on January 23, 2009 at 3:39pm

Dawn,
My son had constitutional growth delay before starting steriods. That is what Dr. Wong called it! Anyway, all of my kids were really small until they hit about 5 or 6 and then they grew...my girls are now the tallest in their class. Anyway, Seph did not hit this growth spurt, probably due to the steroids. We did the Stim test and he was in normal levels, but he was 6.5 y/o chronologically, but only 3.6 in bone age. The endocronologist at Cincy agreed that he should be put on it, so we began. Amazingly, insurance agreed as well. He grew 2 inches (5cm) in 2 months!! We go back to Cincy next month and I know that he has grown more as his pants are all now too short!
good luck! Lori

Dawn said:

Hi

I have just joined the forum and have been reading the threads about GH and steroids. We are in the UK and have a problem in that the steroids are affecting our son's growth. He is 7yrs 6mths and measure 111cm and weighs 23kg. We have an appointment with the Consultant in early Feb so I am trying to get as much information together as possible. You mention the stim test - I presume this is to check the GH levels. Should I be asking for this to be carried out? Also, how do they distinguish between the effects of the steroids and GH deficiency? From reading above, it appears that if growth is suppressed due to steroids then GH may not be prescribed, but if GH levels are low and they are on steroids then they are likely to be prescribed. I had concerns about my son's growth prior to starting the steroids but this angle got lost in all the turmoil if being diagnosed with DMD. I would appreciate any information you can give me so that I can discuss all angles with the Consultant. Have any of you who have been affected by steroids in this way had to reduce or even stop the steroids? If so, what happened?
Thanks

Dawn

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Permalink Reply by Joanne Keeley on January 23, 2009 at 6:34pm

We've had my son Wyatt (11 yrs) on HGH for the 17 months. I have gone through periods of 6 wks to about 2 1/2 months without it because the insurance company wants constant reassurance that it is needed/working. Bloodwork, doctor visits and setting up the prescription all over again several times...
As of Jan 1, we have new insurance and they are not even answering my doctor's calls. I can't tell you how frustrating the process is - not to mention the fact that I was told by my doctor that you should NOT break up the therapy.
I do believe that it has done good things for my son and his mobility not to mention how it has helped him emotionally to grow taller when his friends are growing like weeds! He hasn't caught up with them by a longshot, but feels hopeful andbetter about himself. Again, I do think that it has helped with his mobility, which is most important to me...
Joanne

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Permalink Reply by Janine on January 23, 2009 at 7:17pm

Dawn,

I by no means claim to be an expert on this subject but I can share with you what the docs have told me. Yes, steriods do stunt growth but they do not make a boy growth hormone deficient. From the questions I asked I concluded that it is two different things, your growth can be stunted from prolonged use of steroids but steroids don't change the amount of growth hormone you have in your body. Yes, I would request a stim test for your son as this would be the way to measure the amount of growth hormone in his body.

Janine

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Permalink Reply by Dawn on January 24, 2009 at 9:52am

Hi all,

Thanks for the replies, they are really useful. Being in the UK we don't have the insurance issue so that's a bonus. I am just trying to gather as much information before meeting with the Consultant. Having had concerns with Jason's growth prior to him starting steroids may suggest he was GH deficient anyway. This may now be exacerbated by the steroids, so I will be asking to see if we should check his GH levels.

Thanks
Dawn

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