Ataluren
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Permalink Reply by jiasusa5 on
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My son is 9 years old and he diagnosed with out of frame deletion of exon 46-47.Is this same to non sense mutation or different,please help me understand.I also want to make sure here that kids who are at Ataluren ,got Ataluren becuase they were in clinical trials ,otherwise Ataluren is not available in market and will not be available in USA .Amelia whatever Neurology and genetic clinics will diagnose,they will prescribe prednisone if you are in USA and if you want to go for Deflazacort,you have to get it from UK.I am also new to DMD,if my knowledge is wrong please correct me.
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Permalink Reply by Amelia on
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Deletions are not the same as nonsense mutation.
We are in the USA and if we wanted the defalzacort how so you go about getting it from the UK?
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Yes that is what we searching,I am in contact with some of the parents have kid with DMD.What I have read and researched so far came to the point that Deflazacort has less side effects than Prednisone and my son's neurologist already said she will not prescribe Deflazacort.Then I asked other parents and one of them told me that Cincinnati hospital ohio is the one who give prescription for Deflazacort and then their is a online company that you can buy from with prescription.So one side you are lucky you are going for appointment to the samehospital.Choice is your which steroids you want to go with.For us we have to choose from Prednisone,Deflazacort or no steroids at all.
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I know steroids make you insulin resistant, so we will just have to see what the doctors think would be best. We will have change insulin regiments because more then likely it will cause him to run high most of the time. But maybe in a lower dose it won't be as bad. I don't know. I don't even know what to expect and I'm very nervous and have major anxiety over all of this.
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Relax Amelia ,we don't know about future ,but are still hopeful and doing our best.I want to share what we are doing and its really helping so far.Daily stretches 2 times a day for 40 secs each stretch repeating 3 times.Your physical therapist will guide you.Night splints work really good to keep the feet stretch for long time,Orthotics office will evaluate and provide it .Calcium and vitamin D supplements ,that you can start anytime.Swimming is best for these Kids.And top of all this a good diet, milk,yogurt,fruits,vegetables, will help a lot.
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Permalink Reply by Keith Van Houten on
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jiasusa5, search on this board for a thread called "awesome technique for stretching". We've used the nada chair for 7 years, it's helped a lot with stretching. It's an easy 30 minute stretch a night.
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Permalink Reply by Donna on
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Angela, What kind of growth did he experience? Did he lose mobility or when you put him back on daily was he fine? These decisions are the hardest....
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