moms of kids with A

[Guest guest]

outside of DC - try Temple University hospital and Dr. Richter - I've never met

him but I've heard nothing but great things. You can also go see Dr. Luketich at

University of Pittsburgh luketichjd @ upmc.edu - he's head of the minimally

invasive surgery department and the heart lung and esophageal surgery center -

really, really busy but very nice and will fit you in in a pinch - also great

dept to handle insurance stuff. They are also connected to a childrens hospital

so I would think getting him and a ped surgeon to work together is doable. You

can also go to Cleveland Clinic and see dr. Rice. All of those require some

traveling but only a few hours and your results will be worth it!! I'm the

Sandy referred to and she's right - I had a myo done in 1989 by someone

who didn't have experience and I was OK for a long time but had an ectomy 3

years ago - I feel great now and it's all good but if I had known (or my parents

had known) of someone with more experience - maybe it would have been better!

One thing I learned was to go to the best and I went to Dr. L from NC - 10 hours

and worth every minute and every dime.

**ALSO** VERY IMPORTANT

go to your school nurse - you may even do better with the head of the school

nurses and get a medical 504 designation for your child. It is a federal law for

children with special needs - in this case, medical needs and teachers and staff

MUST comply with your childs modifications - in this case, snacks, drinks,

breaks to deal with spasms - whatever. You are probably still going to have the

occasional issue as there are the old school teachers who have the no

food/drinks thing in their classroom (I work with a few and they make me

crazy!!) but you then have a better background for your battle with

administration. When I got diagnosed, I was in HS and I had a note in my purse

from the school nurse giving me permission to eat between classes and I had

teachers who STILL wouldn't let me! Your children are going to have to grow up

fast and learn to advocate for themselves - I feel for them.

Keep us posted. So glad you found us - wish there had been a group around back

in the 80's for my parents.

~ in NC