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How long...

We are currently investigating surgery for my almost 6 year old son. We had our first round of testing (PET, ictal and interictal scans) the week of June 11th. We're just waiting on all tests and results to be sent up to Cleveland Clinic and for them to review his file. Our epi strongly believes they'll recommend a right temporal lobectomy as well as a resection of an area of dysplasia near his motor strip - with the possibility of MST's around it. My question is - how long do you think we'll have to wait for them to schedule us for more testing and surgery? If I sound like I'm pressing for surgery, I pretty much am at this point. Nathan's currently on his 5th, 6th and 7th meds. He's now cognitively delayed with a significant expressive and receptive speech delay. He was completely typically developing before the sz's started. This is basically our last hope... and I'm getting impatient, lol. If you could give me a quick timeline of your process I'd appreciate it. Thanks, Nancy

Comments

Re: How long...

It sounds like surgery is the thing to do. Make sure that the place you are going to for surgery is replicable. If possible, get two different doctor opinions. If that means a total of two weeks in the hospital for your child, and you can afford it, get two opinions. Try to find out if the doctor can find a real reason for your child having seizures. If one place does find a reason, and the other doesn't, you know the place to go.

Re: How long...

What's your status?

My son was just diagnosed. I'd like to know if you had the surgery. We are looking at surgery 6 weeks from now. How is he?

kmom

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