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We're back from the pediatric neurologist

774 Views 6 Replies 7 Participants Last post by  JohannasGarden
Well, the visit went well I think. The neurologist didn't know any of his history which I thought she would've read since I saw it was at the front of his chart but that was ok because I got to tell her everything. She scheduled a VEEG that she said she could do early next week or another neurology clinic in Minneapolis could do possibly this week. So we're waiting for a call to see when that will be.

She watched my videos and agreed it was most likely seizures but she also mentioned narcolepsy! She said if the EEG comes back normal she wants to do a sleep study. She's also planning on other testing but didn't mention what all she had in mind and wants the VEEG done first.

She does see a lot of autistic like behavior but she said seizures can mess with the brain and she doesn't feel like she can make a diagnosis without ruling out seizures.

So, that's where we'll go from here. I don't know which diagnosis seems "better". Ya know? Seizures or autism? I don't know, maybe it's something entirely different.

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On the bright side Nicole, you're one step closer to finding out what it is!! I hope an appointment comes up fast for you.
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I'm so glad you have a dr. who's listenting to you and trying to find the cause.

Seizures aren't a horrible diagnosis, btw....SO many people have controllable epilepsy.
: for you and your dc!
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Glad to know you are getting some answers...

Narcolepsy, yes, that's related to that cataplexy thing I was talking about. If you want to see that video I was talking about, PM me and I'll send you the link.

At any rate, glad to know things are getting solved. Hugs to you all.
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So glad you got to see the pedi-neuro. Let us know if you have any questions about the VEEG. Between both my girls and myself, I've been through quite a few. Hopefully you will have some solid answers soon.
There was a recent study that came out saying that they now believe that narcolepsy is neurodegenerative. I don't know what they thought before though to be honest.

It's very very very rare for it to begin before the age of 15 though.

With someone so young, are they doing any blood work at all?

Good luck. I'm glad you got to see someone.
I am so glad you got in to see a neurologist who is taking this seriously.

I think what fluffypenguins was saying on one of your earlier threads is that in a child with frequent seizures and symptoms of autism, you can't really make a judgement on whether the child is autistic until the child has had some time with the seizures under control. Frequent seizures may affect development in ways that look like autism, and in that case the same child will start learning and behaving very differently without having to deal with seizures on top of his/her developmental tasks. It's just something that can't be assessed at this time.

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