5.20.2008

Screaming and Sobbing and Throwing Things

The article below describes children who, like Leelo, have seizure or "blanking out" spells that were considered too mild for treatment. These children improved dramatically and phenomenally upon being treated with seizure meds:

http://snurl.com/29t0e

Leelo had an EEG done when he was three. The neurologist (not our current one) said that "the seizure activity is significant enough that if your son was not autistic, we'd put him on seizure meds."

Well, why fucking not?

I have always had a bad feeling about the possibility of constant seizures scrambling my son's brain. Given Leelo's tendency to space and blank and his atypical autism traits, I have always wondered if it was constant seizure brain fog preventing him from learning and responding to stimuli as he otherwise might.

Leelo is scheduled for another EEG on 6/2, as ordered by his current neurologist. Then five days ago we received a letter informing us that the medical director had reviewed our request and denied it because the EEG was not "medically necessary to manage our son's symptoms."

I talked to the neurologist yesterday, and she told me to absolutely not cancel the EEG. But now I'm wondering if, since we already have the initial EEG, perhaps we should just go ahead and try seizure meds anyhow? The EEG is going to be a complete fucking ordeal for us, the technician, and especially for Leelo, and perhaps we should just skip it and go to the next steps.

Don't give me any crap about magical "cures" or wishing on stars. I know seizure treatment might not have any effect. But I sure as fuck am going to investigate the possiblities as fully as I can.

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10 comments:

  1. Melissa P.3:08 PM

    My Zachary has been on Topomax since he was 6. He is now 13.
    I understand how frightening it is the seizures and the meds.
    No more seizures at all.
    Our neuro was Dr. Mark Koukkari by O'Connor Hospital in San Jose.
    He ia good.
    I lost your email address to contact you and I cannot find the email me on your new blog page.
    Can you send it to me?

    ReplyDelete
  2. OH HAI my email is aba_help

    @AT@

    yahoo.com

    Thanks Melissa.

    ReplyDelete
  3. Back in the day (1999-2001) I assisted with the fMRI scans of cancer patients who took Topomax for pain-management. Interesting drug - one of those that I wouldn't be worried about trying "just in case." Good luck!

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  4. Charlotte's seizures were (are?) really small, and I still wonder whether putting her on medication earlier might have helped with her dev delays. The neuro told me that seizures could definitely be impacting her speech. Tho given the fact that mommy has a potty mouth, that might not always be a bad thing ;)

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  5. Well, your question is really good. "Would this make any difference to whether we might try this seizure med" and the answer is probably no... Whatever the EEG says, you will likely not use the meds if the effect is bad on Leelo.

    Doctors sometimes lose sight of the goal and the effect, in the search for data and proof and certainty.

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  6. From what I understand per a neurologist, an EEG is a window in time-therefore you can still have seizures, but may not demonstrate them on EEG (ces't moi). So a repeat EEG may not add much info unless there is a question of localization or type of seizure as needed to choose a medication. I would rec asking MD benefit of second EEG given the difficulty of doing it.
    Previously, I treated a successful gentleman who had had absence seizures for quite sometime before they were diagnosed. They were that mild. But he did have some deficits as a result. Generally, seizure activity is located in the temporal lobes (and may spread from there), main skill effected would be short term memory-vs language which is left parietal. Trying meds may add clarity to Leelo and his skills and difficulties. ....hang in there

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  7. A pal of mine has both her children on seizure meds [one autistic and non autistic sib] Both have seizures. Both are doing well but it's been a long hard road for them, all of them. [incidentally, they are both adopted with different birth parents]

    I think the night monitors and round the clock watching was wearing them all out. Wishing you an even better outcome.
    Best wishes

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  8. I thought of you immediately when I saw that article (and then of course I forgot to track down your email address in the meltdown of our current IEP disaster and special ed lawyer's emergency hospitalization) -- I'm so glad you're pursuing this for Leelo, and yourself -- as a migraineur (migraineuse?) myself, I cringe every time I imagine Leelo suffering with untreated seizures and/or migraines...

    Bah! to managed care.

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  9. As one of the so-called self-pay patients, I really wish we could have Boy tested. Even before this article, I've wondered if some of his quiet spells were just woolgathering or if he was having a seizure.

    I would love some answers. We all would.

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  10. Given our very positive experience with Trileptal, I say try the medicine. We can always tell when we havne't given our son his meds and his seizures were small discharges on his EEG. Absence seizures/staring episodes. He is more cranky and he doesn't sleep well without Trileptal.

    ReplyDelete

Respectful disagreement encouraged.

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