Hello to all... I am writing again because I need to vent...I am afraid of the
unknown... What to do and am I steering her in the right way??Brooke has had RSD
this for going on three years now..Doctor after doctor...Since going to the
Institution in Pittsburgh she went down hill..They did extensive therapy for six
hours a day..She came home and was able to go to school for two weeks then after
three ambulance trips and two different hospital admissions and going to
Cleveland Clinic and being told it was in her head. Now since October she is in
and out of w/c, I am bathing,dressing,feeding,taking all care of her...She
continues with therapy and lately has had a weight loss and not able to eat or
drink they put a nasal gastic tube in Monday... It is now out and she is
starting over again with trouble eating and drinking.. She has RSD throughout
her whole body.. She is having trouble hearing , seeing and the muscle spasms
are her whole body and head...She looks like grand
mal seizures...The pain is more intense again...After her spasms she is
unresponsive for about two hours and can't open her eyes or talk...The doctors
do nothing...and know nothing...I called to see if she could get in Philadelphia
with Dr. Swartchman spelling==== and not till 2008..... Everyday is getting
worse....I fought for them to give her Neurontin and she got it but it doesn't
really help...She refuses to even think about the nerve blocks etc....With the
whole body involved would anyone recommend it????? I feel like I am watching her
waste away....I can use any input anyone has please???????She is on oxygen and
last night she was having very difficulty with breathing...But I got her to rest
and see what today brings...I think the extensive therapy is what did this...Now
the only thing md's want to do is me send her back to the institute and do it
again....I am afraid that it would make her even worse and she would never get
out of w/c or be permanently
disabled....Please w/b and give your opions....You all know what she is going
through and I don't want to be blamed for not letting her go back but she says
there is no way....Is there anyone md wise out there that you all recommend????
I am at a dead end and I can't just sit here not finding out some other way to
help her.... Please any info....Does anyone have this as bad as her..??? I mean
the whole body and spasms this bad.???I wouldn't wish this on my enemy..I wish I
could take it from her....What else is there???I look up sites on the internet
and feel like I get nowhere....
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