Replies to This Discussion

Permalink Reply by Lori Ware on December 10, 2008 at 5:39pm

Seph is on Genotropin. we have NO negative side effects after 4 mths on the treatment. THe first month was rough getting used to the shot, but now it is old hat. Good Luck!!! Lori
Polly Sundeen said:

Hi all!
We are in the process of getting Cole approved for treatment. He has been prescribed Genotropin (1.3 mg/daily) by Dr. Rutter. He's 9 years old. I'm just curious and would like to know if anyone has seen any negative side affects. I'm thrilled to read all the positive ones....but I still worry. I'd also be interested to know what form of HGH others are on (Genotropin/ Norditropin/Humatrope?) and what influenced the physician to prescribe one over another.
Thanks!
Polly Sundeen

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Permalink Reply by Karen Jones on December 12, 2008 at 8:42am

Janine,

Hey, how are you doing with the ght shots? Scott just received his packgage yesterday. Did you have a nurse come to your home for directions? Are you guys around on Christmas break? I know Scott would really like to get together with your son!!! Any possibility? You have my email address, let me know. Karen

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Permalink Reply by Mindy on January 8, 2009 at 12:59am

Hi - what was the criteria for all of you being prescribed the growth hormone? My son has dropped from the 50th to the 25th precentile on height since starting steroids, and he hasn't grown at all since visiting Dr. Wong last summer. I would be interested in starting growth hormone simply because of the mobility improvements.

Did everyone that started growth hormone have their sons tested prior and have low levels diagnosed?

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Permalink Reply by Kim Innabi on January 8, 2009 at 1:31am

Hi Mindy:

I have Kaiser insurance and my son is 12 years old. He has been taking steroids for four years and has dropped into the 3rd percentile in height (he is barely 4ft tall and weighs 98 lbs - he has grown only one inch in the last three years). I have been reading all the positive info from other parents regarding GH and I have also been to see Dr. Wong. I approached my endo at Kaiser strongly encouraging him to put Nicholas on GH, but he had a laundry-list of reasons not to. I have spent hours gathering info to support GH, not to mention he has spoken to Dr. Rutter and Dr. Wong and done research on his own. At this point he still not convinced that it is appropriate and is a "NO", but I am really pushing him to at least do the stim test. It seems like he is going to give a little on that and perhaps authorize the test - but he feels that the shortness is because of the steroids and therefore using GH would be a misuse of the intention of the drug and not appropriate. The doctor is doing what they used to do with steroids - trying to make it seem like the side-effects are not worth the benefits (which I understand the side-effects are not too many, and definitely nothing compared to the side-effects of the steroids). It seems like it depends on what insurance company you have and also having a supportive doctor with experience in DMD and growth hormone would probably help too. Mine admits that he has no experience with this, nor do the other endo's that he has consulted. All I can contribute to this discussion is that I am having a horrible time and I really want GH!. But I can't even get Kaiser to cover the wheelchair that my son needs, so I don't have much faith in ever getting the GH from them. I'm spending all my time fighting with my insurance right now - I hope you don't have Kaiser!!! (Although I'm sure others out there may have had very positive experiences with them and are quite happy with their care!). I'll see you in DC in Feb. if you are going. Good luck with the GH.

Kim

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Permalink Reply by Lori Ware on January 8, 2009 at 10:44am

Kim I am so sorry that you are having trouble with your insurance and Doc!!! We see Dr. Wong and are on HgH. We did the stim test and Seph's numbers were normal, but since he has fallen off the growth chart AND he is already be teased about his size (he is only in Kindergarten), Dr. Wong felt for Quality of Life issues AND the fact that she is seeing such great benefit, we should put him on them. If there is anyway you can see Dr. Wong to get on the HgH, even if Kaiser won't approve it, they would with Phizer (sp?) who has a 'bridge' program for HgH. This means they will GIVE you the drug for FREE until your insurance approves it AND they have a department that does the fighting for you!!!! Obviously it is in their best interest to do this as the drug is expensive and they make $ in the long run! I was told that it could take up to 1 year for all the appeals to be exhausted and during that time the drug is FREE to you! Amazing!

Even though Seph's levels were normal, due to his short stature, our insurance approved it upon first look! I was amazed..and glad and sad! I only got 1 mth on the bridge program and then had to begin paying my $50/mth co-pay! Oh well, it has been worth it! He grew 2 inches the first 3 mths and I can tell since October he has grown more! We go back in early Feb, so we will see then how much he has grown in 6 mths!

I hope you can make this work out for you!!!

Lori

Kim Innabi said:

Hi Mindy:

I have Kaiser insurance and my son is 12 years old. He has been taking steroids for four years and has dropped into the 3rd percentile in height (he is barely 4ft tall and weighs 98 lbs - he has grown only one inch in the last three years). I have been reading all the positive info from other parents regarding GH and I have also been to see Dr. Wong. I approached my endo at Kaiser strongly encouraging him to put Nicholas on GH, but he had a laundry-list of reasons not to. I have spent hours gathering info to support GH, not to mention he has spoken to Dr. Rutter and Dr. Wong and done research on his own. At this point he still not convinced that it is appropriate and is a "NO", but I am really pushing him to at least do the stim test. It seems like he is going to give a little on that and perhaps authorize the test - but he feels that the shortness is because of the steroids and therefore using GH would be a misuse of the intention of the drug and not appropriate. The doctor is doing what they used to do with steroids - trying to make it seem like the side-effects are not worth the benefits (which I understand the side-effects are not too many, and definitely nothing compared to the side-effects of the steroids). It seems like it depends on what insurance company you have and also having a supportive doctor with experience in DMD and growth hormone would probably help too. Mine admits that he has no experience with this, nor do the other endo's that he has consulted. All I can contribute to this discussion is that I am having a horrible time and I really want GH!. But I can't even get Kaiser to cover the wheelchair that my son needs, so I don't have much faith in ever getting the GH from them. I'm spending all my time fighting with my insurance right now - I hope you don't have Kaiser!!! (Although I'm sure others out there may have had very positive experiences with them and are quite happy with their care!). I'll see you in DC in Feb. if you are going. Good luck with the GH.

Kim

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Permalink Reply by Kim Innabi on January 8, 2009 at 11:40am

Hi Lori:

Thanks for the info! I did look into the Pfizer program a little, and also forwarded that info to my doctor. He said it would not help me because Kaiser does not use Pfizer as one of their drug suppliers, and therefore they have no contract with Pfizer. They would not buy drugs out-of-contract (can't remember his exact words). He did say that IF he decided to put Nicholas on HG, I would have the drug in a matter of two days. I just have to convince him that Nicholas needs it. The amazing thing to me is that he has been in touch with Dr. Wong and Dr. Rutter, and still will not believe that there are positive benefits with GH! He is actually disputing a couple things (like increased strength and bone health). How would he know if he doesn't have any patients that are taking it to base that on...Dr. Wong has REAL patients that she is seeing results in! But because there is no "official " study with positive documented results, it is experimental to my health insurance and they can choose not to supply it (and since it is expensive, that is obviously their choice). I'm still working on it though - at least he agreed to approve the stim test yesterday - although to me it makes no difference if it is the streroids or actual GH deficiency causing the shortness, I want to try it anyways!!!! Nicholas is in Jr. High and some of the 2nd graders are taller than he is at school! I'm so glad you were able to get GH for your son - that is wonderful news! Take care,

Kim

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Permalink Reply by Tina on January 8, 2009 at 1:57pm

Lori,
So, his Growth Hormone levels were within normal limits and she still prescribed GH injections for him? Is there any chance this drug could have an adverse effect on your son since his levels are normal? Is she doing a Growth Hormone study on a population of Duchenne boys with low GH levels and on ones with normal results GH while testing both groups' strength and monitoring bloodwork during this study? If so, is she close to publishing her results?

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Permalink Reply by Lori Ware on January 8, 2009 at 3:00pm

She did go ahead even with normal numbers, since he was off the growth chart. His bone age at 6.5y/o was only 3.5 and that had not changed in 1 year. There are very little side effects to HgH, in fact many in other countries are using it for weight control!!!
Anyway, at conference, she told me that she was looking for funding for a study. Seph is not in a 'formal' one, but I know that they are keeping statistics. Fortunately for us, unfortunately for a study, Seph was doing so well before going on HgH that it will be hard to tell if this helps him. He still rarely even uses a gowers to get off the floor! But, Dr. Wong did say with the combination of Synthyroid (low thyroid), HgH, and how well he seems to be doing now, the HgH will help sustain that for quite a while (she assumes).
We go back in Feb, and I will TRY to remember to ask where she is with getting a formal study going.

Tina said:

Lori,
So, his Growth Hormone levels were within normal limits and she still prescribed GH injections for him? Is there any chance this drug could have an adverse effect on your son since his levels are normal? Is she doing a Growth Hormone study on a population of Duchenne boys with low GH levels and on ones with normal results GH while testing both groups' strength and monitoring bloodwork during this study? If so, is she close to publishing her results?

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Permalink Reply by BeritSofie on January 8, 2009 at 6:27pm

Hi everyone

Can anyone please give me Dr. Wong's email adress ? Have been reading this thread and find it very interesting for our boy, 9 years old. Hasn't grown much the last three years, and we also have a weight issue (steroids?)

Berit

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Permalink Reply by Lori Ware on January 8, 2009 at 7:58pm

For a quicker response you may want to email her nurse Andrea Mynatt-Norman Andrea.Mynatt-Norman@cchmc.org, Andrea will get you whatever info you need from Dr. Wong.

Lori

BeritSofie said:

Hi everyone

Can anyone please give me Dr. Wong's email adress ? Have been reading this thread and find it very interesting for our boy, 9 years old. Hasn't grown much the last three years, and we also have a weight issue (steroids?)

Berit

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Permalink Reply by Janine on January 8, 2009 at 8:33pm

Mindy,

My son is growth hormone deficient. He did have a stim test and all of his gh levels were very low. After the test came back the endo's office took care of the insurance company.The only thing they denied the first type of gh and we just switched to another one and they appoved it.

Kim,

I am shocked that with the size of your son your endo has not already done a stim test. It would not suprise me if he was gh deficient. You would think that would be done right away. What is his reason for not doing one, because he is on steriods? If he had come in and not had dmd he probably already would have had one done. He may have a different opinion once the stim test results come back. I guess you'll just have to wait and see. Let us know.

Janine

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Permalink Reply by Kim Innabi on January 9, 2009 at 11:34am

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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