My name is Marharita. I am from Ukraine. I have a son with DMD. He is 10. I write lerttes to people from different country. I would like how do they live with this illness. My son have goes to school on the fourth grade . But ukrainians doctors haven`t known how help us. So, just know more and will have community. If will have a impossible so write me about you. My email firstname.lastname@example.org.
hi keith, you had mentioned in one of your emails to me couple of years ago that you were thinking of reducing deflazacort dosage for kyle. Did you do it and if so did you see any effects in terms of strength/dexa? we are thinking of doing the same primarily to see any +ve effect on dexa, but scared to try it. can you reply to email@example.com? thx..
Our Deflazacort shipment is being hold by FDA in the post office.We have ordered it with doctor letter even then did not go though custom.The letter from FDA states that drug you are importing are unapproved new drugs and /or can be purchased in the US.Anyone had the same experience,please share and help ?Thanks
MY NAME IS DEEPAK ARORA AND MY 6 YEAR OLD SON YUVRAJ ARORA IS EFFECTED FROM DMD (DELETION OF EXON 52)., DOCTOR'S HAVE PRESCRIBED STEROID (DEFLAZACORT) 0.9 MG ON-OFF SCHEDULE (10 DAYS OFF AND 10 DAYS ON) (AS PER HIS WEIGHT) HIS PRESENT WEIGHT IS 26 KG.
CAN YOU SUGGEST US THAT WHAT TO BE DONE BECAUSE I AM AFRAID ABOUT THE SIDE EFFECT'S FOR THAT.,
SECONDLY IF YOU CAN HELP IN MANNER TO INFORMATION ON THIS THEN WOULD REQUEST YOU TO KINDLY UPDATE US SO THAT WE CAN TAKE NEXT STEP TOWARDS HIS TREATMENT..!!
Hope your day is blessed,Keith.Do you know of a good lab carrying out DNA tests in Britain? The hospital where i take my boy are telling me they do all their DNA tests in UK and the fellows at that UK lab are saying they do not do the type of tests required to determine my son's deletion or nonsense mutation.Am telling my doc here he can send the specimens to the US but he seems know of labs in UK only.Thanks.
Hello Keith, I am trying to find FB groups and noticed you commented to someone else about them being difficult to find. I tried to find you on FB, but there were a few Keith Van Houtens and none of them in Michigan. I hope that we can connect. Thanks.
I am pramit, having a son just diagnosed with exon deletion 5, having an age 2.5 yrs. I have seen ur some messages stating 5 is though a inframe deletion, causes DMD in terms of practical symptoms. I think i share the same case here. I am not sure but? could u help...
Also what are the signs one should expect here as my son grows. My son also has a cousine brother who face the same deletion. please also suggest the medication going forward. as of now calcium and vitamin E supllements were suggested by doctor.
I think u could be a great source of information for us. we have also asked help from my sis she is doctor.
Sherri and Sara... I wanted to invite you to a meeting that has been offered to us to hear about the latest reserach in Duchenne. We are near Toledo, Ohio and it seems as though you are in Michigan. The meeting is next Thursday @ 6:30pm at The Hilton Garden at Levis Commons in Perrysburg Ohio. I can e-mail you this information if you would like. Please e-mail me at firstname.lastname@example.org.
Of course Keith....I'm still trying to figure out this website and how to use it! I didn't realize I had already made a connection. Hope to see you and Julie soon! Will you be at the Team Joseph family run in Birmingham? Take care and we are in it to beat it!!!
hello, I can not remember it way a long time ago, but was it you that was willing to come help me do something for my son's school/cubscouts about duchenne for the kids? if so would you still be willing to do something like this, we have just moved to a different school district entirely, and I would love to do something for the other kids to have an understanding, and so when they see jonathan maybe deter some picking on when he falls and things like that. i feel we need to do something, so maybe next time he actually does get hurt, he won't feel he has to hide the fact he is hurt, well something... like he did last year at old school, he actually fell on the playground, when he was suppost to have a para pro who was "busy with other kids" at the time, and he fractured his vertebra, and just got up and they let him, he told me he didn't want to get picked on by the other kids so he pretended it didn't hurt. i wanted to kill the adults at the school who let him just get up also. i have wanted to do something like this for a while now, i just don't know where to start, what to say, ect..
I'm hoping to catch up with you before the Connect Conference to see if you have a few minutes to talk about the DMD interview study we've discussed in the past. If you see this, could you email me at email@example.com and I'll send you a more thorough note. I hope you and your family are well. Thanks.