Re: Dr.Cohen, new patients& waiting

April 28, 2004

The office did tell us that the waiting list is 8-10 months out and there is

nothing that can be done because he doesn't even have emergancy

appointments available.

We have been trying to get an appointment since October. We were told that

in March they would call us and give us an appointment date. We still don't

have an appointment. On Monday, they told us that it would be another six

months before we are seen. We could easily wait a year for this appointment.

April 29, 2004

> ,

>

> WOW! A year in the life of a child with Mito can bring so many changes. We

have seen so many changes in the last several months. When I look back a

year ago the kids have changed so much! I worry about what another year

will mean and if it will be too late. Who cares for your child now? What type

of

Mito do they have?

Tammy, We don't know what type of mito we're dealing with. Nobody is caring

for our children. We have suspected mito since last summer and have begged

our pedi for referrals. He finally started trying to get us referrals in

October. In

March, our new autonomic neuro and our regular neuro (who are in

Milwaukee while we are in central IL) finally agreed that they think our boy

has mito. But they don't know what type. He is now acting like he is having

absence seizures. Our DD has not even seen a neuro for mito yet. She's

tougher to get in to docs for neuro stuff. She has a great pulmo/critical care

doc who knows what is going on with her brother.

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