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    Joined: Aug 2011
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    I heard back from Dr. Beljan and will be scheduling a phone consult. Thank you!

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    What a whirlwind couple of days and it's not over. Had my phone consult with Dr. Beljan who really couldn't give a good answer about dd's test results - "very unusual" was said several times. He gave us the name of a top-notch guy about 2 hours from us "Easily one of the 5 best there is - I would take my kid to see him." I called yesterday and after speaking on the phone he arranged for us to come in for a consult TODAY. He wants us to go to a pedi neurologist for an EEG asap to rule out a seizure disorder. I am in the process of making those arrangements now. Also he arranged for one of his colleagues to do a full neuropsych eval on MONDAY - as in just 5 days away! I can't believe this is moving so fast and with such a top notch person. Will keep you posted.

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    Wonderful news!

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    that is great news!

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    Pemberley, I hope you get all the information you need! This sounds like fantastic progress.

    DeeDee

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    Hope the neuropsych eval yesterday went well! Hope you did get info that makes sense and will help you better understand your dd!

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    The eval seemed to go well - dd got through it in one day and seemed to enjoy the process. She came out invigorated rather than exhausted as I had expected. He declined to give any immediate assessment but said we should have full results in a few days. He really, REALLY wants us to see his preferred pedi neurologist "world renowned expert in pediatric epilepsy" so I guess he made clear what he expects to find. It would certainly explain what we have been describing as "the words just seem to disappear from the page." I doubt that is anywhere near the whole answer but at least it would be something definitive to address.

    We have an appointment with his preferred guy late next month, unfortunately scheduled on DD's 7th birthday. Our local pedi neurologist can't see her until late January but they have scheduled a sleep deprived EEG for early next week.

    So I haven't gotten the results yet but I think getting the neuropsych was a good idea. I will keep you posted.

    Thanks.

    p.s. Dr. Beljan has asked me to keep him informed - he seems like a really good guy and a great resource. Thanks so much for providing his info!

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    Glad your dd enjoyed the testing!

    It's wonderful that you can figure out more and better help your kid.

    Good luck as you await the results of Monday's tests (and prepare for the sleep-deprived EEG)!


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    It sounds very encouraging that you've found a private evaluator who is interested in understanding your dd - it will be interesting to hear what he thinks after you have the results of his testing!

    FWIW, I have a dd with a seizure disorder and one thing you might want to do before your initial appointment with the ped neurologist is to think back through your dd's developmental history. The neurologist will most likely start before birth and ask a lot of very detailed questions that may seem very odd but all fit together in understanding your child's neurology. It sounds like you haven't suspected seizures, and fwiw we didn't suspect them in our dd until she had the type of seizure that was so obvious you couldn't miss it... but we realized in hindsight, after talking to the neurologist and going through that developmental history, that she had in fact been having seizures for quite some time, we just didn't realize that you don't necessarily lose consciousness or have convulsions with a seizure.

    The other warning fwiw, a child may have a seizure disorder and have a perfectly normal sleep-deprived EEG - that initial EEG is just a 45-minute (give or take a few minutes!) look at brain function. Our dd, for instance, doesn't have predictable seizures and they weren't happening constantly, so she's never had one appear during an EEG. It's possible that the neurologist may want to have an MRI also.

    Good luck as you move forward,

    polarbear

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    Just found out that our insurance will cover the preferred neurologist at the same level as our local one! Nice surprise indeed. They also sent paperwork to reimburse a portion of the neuropsych testing. I doubt it will cover a large percentage but every little bit will help. It looks like this may be a long and winding road.

    Thanks polarbear - always nice to hear a voice of experience. I actually did mention to dh a few times that I wondered if these "words disappearing" episodes could be some sort of silent seizure. No one ever echoed the idea though so I figured it was too far fetched to consider since I have no medical background whatsoever. I actually doubt that this EEG will show anything definitive. This whole process has been so mysterious it would be too simple to have something show up on the first test.

    I will keep you posted - thanks for all the support and feedback!

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