Hi Tami,
I don't know your insurance situation nor do I know all Jasmine's specifics, but I do know that many doctors do NOT know enough about this rare disease and often give poor advice like I've just read. PLEASE, PLEASE do not disciplne her for problems that may not be her fault. My 20 year old niece never showed any obvious MM symptoms prior to her strokes or diagnosis, and then one day she just urinated with absolutely no control at all. We rushed her to the hospital and later that day she suffered a stroke and many more severe strokes followed. PLEASE first get an opinion from a MM expert before taking the advice from these doctors!!
If an out of state MM specialist does not take your insurance, try and find a neurosurgeon with MM experience who does take it. Anyone I've ever spoken with who had a successful outcome fighting this disease had to be extremely aggressive and fight for it because of the lack of knowledge in the medical community. I admit it may not be an easy road but there IS help out there!! Jasmine has a excellent chance for a successful future IF the proper approach is taken and IF she has a doctor with MM experience.
tkalbrier wrote on Apr 6th, 2008 at 10:11pm: Jasmine is just 14 and has Down Syndrome, I have also been led to believe that this often accompanies DS and that she will always be at risk.
What were you led to believe she would always be at risk for?? If her MM is treated properly and she gets the proper blood flow to her brain, that lessens the chance of a stroke and any brain damage. Yes, Down Syndrome is often associated with MMD, but we've seen many successful outcomes with DS and MMD, with the proper treatment. Please do not be mislead by your doctors without at least getting an opinion from an experienced MM surgeon.
I pray that Jasmine gets the treatment she needs. You both will be in my thoughts and prayers.
Please keep us posted.
Mar