Do you mind if I ask what town your neuro is in? I am looking for a new one for my son who has Lennox-Gastaut Syndrome. We are in San Antonio.
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From: Dawn <dgroeschen@straitsc
To: epilepsy@yahoogroup
Sent: Monday, May 4, 2009 9:10:59 AM
Subject: [epilepsy] Re: "serious" side effets
--- In epilepsy@yahoogroup s.com, "gaelic_darkwater" <gaelic_darkwater@ ...> wrote:
>
> I've been trying to find an answer to this for several days and can't seem to get a real answer anywhere, so I'm hoping someone here has experience with this or knows someone who does and can give me an answer...
>
> I'm having a LOT of problems with the side effects from the phenytoin. I looked the medicine up online and the side effects are mostly listed as "serious", such as loss of balance, and dizziness, although I also have blurred vision and EXTREME fatigue. (I have slept for DAYS at a time.) I also can't type anywhere NEAR as easily as I once did and frequently misspell words or even forget words entirely. Not too long ago I stood in my kitchen for nearly an hour struggling to remember what the big silver box was and how in the world it was used. It was the microwave, which I use every day.
>
> So what I need to know is, when they say "serious" how serious is it? Am I risking serious long-lasting health problems (which I really can't afford added to these seizures) or do they just mean that these are seriously irritating? What should I do? I can't get to my doctor for weeks still.
>
My 10-year-old son Jonathon had a rare severe adverse reaction to a medicine (zonisamide) that almost killed him. Jonathon is a type 1 (insulin-dependent) diabetic, and the medication caused hypoglycemia (low blood sugar). His neurologist at the time, the pharmacist and two different ER docs all told us the medication was safe. We took Jonathon off the medicine on our own (he'd only been on it 3 days) and his blood sugars started to recover. We had to check his blood at least hourly for 48 hours before he started to recover. His blood sugar was dropping so quickly that we found him passed out twice in one night. I later found out that the rare severe adverse reaction was documented, but that no one found it necessary to tell us about this "rare" reaction, even though we questioned if it would affect his insulin absorption or his diabetes. Even after he started recovering and we talked to his neurologist, the neuro did not know that the medication could
cause that problem. We have a new neuro because of this, and our new one does not discredit what we tell him.
I would think that if you're experiencing serious side effects that either your dosage is too high or the medicine is not right for you.
Just my opinion.
Dawn, mom to
Joshua (9/15/1997, microphthalmia/ phpv/blind left eye with prosthetic) and
Jonathon (10/28/1998, type 1 diabetes, epilepsy, migraine)
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