Re: Has anyone had to wait 8-10mo. for a Cohen apt?

[Guest guest]

Yes, this is routine for his office. My only suggestion is to have her pediatrician personally call to make the appointment. Make sure they talk to his nurse, I believe her name is Fran. I have heard he will see urgent patients much quicker. His personal office number is . Also he is very willing to give advise or talk to pediatricians. He actually met with my daughters pediatrician one day for luch, to help her understand the disease and how to treat the patients better. She has actually been able to diagnose two other children in the practice from his help. Obviously we live in the Cleveland area, but he is always willing to talk to another doctor. I understand how frustrating it is to wait, but he is good when you really need him. Hang in there.

[Guest guest]

,

I would possibly have you primary call Dr.Cohen and talk to him on

the phone.He is very responsive to other docs. Maybe he could guide

you doc in the mean time. I have had to resort to pushing hard to

get a quicker appt. with him when was very bad. I would call

and ask to speak with his nurse and see if she can get word to him

about your concerns. It is amazing how a space can open up when he

says it is okay.

Good luck, and don't feel bad for pushing for your child,

Dawn

[Guest guest]

,

That does seem like a long time. If you get desperate and can't get in to Cohen, you might want to look into Columbia Presbyterian. I go to the adult mda clinic there but have met many of the pediatric neuros there and they seem good. Maybe others can give you more info. I met Dr. Petra Kaufmann a couple of weeks ago in passing. They are a major mito center and do fresh biopsies. There is also a Mc House in NYC that is wonderful. I have stayed there with my daughter. Of course, Cohen should always be the first choice. Good luck!!

[Guest guest]

Sydnie's seizures are getting worse and her current epi is afraid of putting her on different meds because of the mito.

, We have been in the same situation with seizure meds. What does Sydnie take for epilepsy? My daughter's epilepsy was first discovered in late '99, when she was 2 1/2. She was put on phenobarbitol and suffered nasty side effects from it. I tried to talk to her neuro about changing meds, but he was adament at that time that phenobarb was her only choice as we did not know what was going on with her metabolically. In 2002, when her seizures got worse and much more frequent, we tried using Diastat (rectal valium) for awhile to break up clusters and prolonged seizures. I found that I was using that too much and he finally reccomended trying Keppra. The Keppra has controlled her seizures well without all of the side effects I saw with the phenobarb. A few months ago, it had to be increased, and since then she only seizes when there is a reason (constipation, lost sleep, illness), and she is being weaned off phenobarb.

There are concerns with mito and some seizure drugs. Valporic acid (depakote) is one that should be avoided. But I believe that Topomax and Lamactil are both reccomended as safe for mito. There should be some info on this at tthe United Mitochondrial Disease Foundation website www.umdf.org

Hope this is helpful, I know how difficult uncontrolled epilepsy can be.

e, Chelsea's mom (nonspecific mito)