The next step (maybe)

I am just copying and pasting from a post I put on TP because I don't want to rewrite it LOL. Hope you all don't mind.


So we went to see the pead. As nice as she was she works VERY close with our neuro (we did not know this when the appt was booked). So the appt went like this

get a full back round from pg to now. All hospital trips ext

go through the list of diagnosis so far

height weight diet ext

check his muscle tone

watch him play

put him on the floor (lying down) to see how he gets up

blah blah blah

His ck levels are elevated but not as much as our family Dr lead us to believe. She is not overly worried about them at this time. She thinks that the pain he is getting is what is making his ck levels a bit higher than normal (so find out why he has pain and fix it right?) NOPE!!!!!!!

Our neuro diagnosed him with CP (Cerebral Palsy) in sept. We have been fighting this diagnosis since he got it because he does NOT have cp (we have a dd with cp). The pead checked his tone yesterday and decided he does not have high or low tone (no !@#%) but is sticking with the cp diagnosis because she does not want to step on any ones feet (see where this is going).

She is worried about him (he is at the top of her "worry" list) and wants to put him on a med that MAY (50% chance) work for the pain. Sounds great (if it works) BUT now you are masking symptoms without and answer. Why do dr's worry about stepping on others feet? That makes me sick!!!

So after talking to hubby last night I think we are going to contact Shriner's hospital in Montreal and cross our fingers they will accept his app and at least do a consult. We are getting no where (that we have not already been) quick. We are spinning in circles.

She was quite impressed with the fact that I was armed with tons of info and very educated on his conditions LOL. Well someone has to be. She wants to see him again in a few weeks and than follow him every couple of months because "she can learn from a child like him" (learn what when you will not figure out "what" is wrong with him)