HELP NEEDED IN NJ

[Guest guest]

My son will be 12 in January, he's already had a T & A at age 10 before

being diagnosed with . The surgery obviously had no effect, which

led us to the boards. We tried Prednisone which worked but

shortened the time between episodes from 6 weeks to 5 weeks. This 5

week pattern has continued even though we stopped the prednisone about

4 months ago. Cimitedine(sp) was prescribed but has had no effect. The

emotional and educational impact is worsening as he gets older. He's

had these episodes for as long as we can remember. If anyone has a

recommendation for a doctor in the central NJ area who has experience

with this condition please reply. Thank You.

[Guest guest]

I can't help you with NJ information. However, I would suggest getting

your son on an IEP at school for " other health issues. " The school is

then obligated to educate your son (that might mean they provide him a

tutor or whatever he needs). Check out PACER at Pacer.org they will

talk to you on the phone and/or send you information to help advocate

for your son in his school. They are based out of MN where I am a

social worker. When we tell a school we contacted PACER they literally

will do whatever the child needs, but they have to be on an IEP which

your son qualifies for by having . I don't know how much out of

state schools know about PACER, but they will give you great advice and

send out the documentation for you to bring to the school. Best of

luck with your son. I'm sorry the T/A did not seem to be the answer.

Lynn

[Guest guest]

Thanks Lynn!!