--- In epilepsy@yahoogroup
wrote:
>
> Hi everyone,
>
> My name is Carol; I am a mom in the Atlanta area. I joined this
group due
> to my daughter's situation and I thought I could educate myself a
little
> before her neurologist appointment next Monday. I would respectfully
> appreciate any info this community might be able to share with me
based on
> my story.
Hi Carol,
My name is Dawn, and I live in Michigan. My 10-year-old son Jonathon
has had epilepsy for about 1 year. He is also a type-1 (insulin-
dependent) diabetic for about 2-1/2 years, and he uses an insulin pump
(versus 4+ shots per day).
Jonathon had his first seizure when he woke up with hypoglycemia (low
blood sugar). He had a grand mal seizure where his head and body were
jerking, and he lost control of his bladder and bowel, which is not
unusual during a seizure. Since then, we've lost count on the number
of seizures, but guess it must be around 10-12. All but one seizure
were first thing in the morning, just before or just as he was waking
up. We aren't sure what caused the other seizure, but we found him
passed out on the bathroom floor after a shower. He remembers that he
didn't feel right and he sat down on the floor.
All of Jonathon's seizure have been grand mals, and each one was
progressively worse for him. The last one, he was unconscious but
breathing for about an hour, and then was in and out of consciuosness
for at least another hour. Two hours later, he was still talking
gibberish, and we ended up at the ER. That's when we were finally put
into contact with our current neurologist.
We are on our 3rd neurologist. The first one did not want to treat
Jonathon for epilepsy, as he thought that all his seizures were
diabetes related, which we were sure they were not. The second
neurogist was a pediatric neurologist, and he did not impress us at
all. He was about 6 hours behind schedule (which the other patients
said was completely normal for him), and then came in and proceeded to
tell us how great he was. He prescribed medication for Jonathon that
caused hypoglycemia and almost killed him, but the neurologist was not
aware of that side effect. We are now seeing another pediatric
neurologist who has been very helpful.
Jonathon is taking Keppra (1000 mg twice a day). The pharmacy sent us
generic meds in November, and they caused hypoglycemia in Jonathon,
and we are back on the name brand. Jonathon was 1 day away from being
6 months seizure-free when he had his last seizure (in October). He
has now been 19 weeks without a seizure. The doctor's office told me
that we still have quite a bit of room to increase his dosage if he
starts having problems. We have already gone through 3 dosage
increases, and added vitamin b-6 tablets to his Keppra to help control
anger issues caused by the Keppra.
My brother also has epilepsy. He had one seizure when he was about 2
years old, and then had a second seizure when he was about 7. He's
never had any other seizures, but has noticed auras when he's under
stress. He has been taking phenobarbital since 1976, and has had no
other problems.
Jonathon has had several eeg's (4 or 5), a ct-scan, and an mri. All
the tests came back normal, which is not unusual. But, he is still
being treated for epilepsy. We aren't sure what causes his seizures,
but the medicine has been helping. Jonathon did not want to take
pills every day, but now remembers to take them on his own most of the
time, even though I still check to make sure. He knows that he feels
better taking the pills than he did without them, and he doesn't like
the after-effects of the seizures.
If you have any questions, please ask. I hope you feel prepared and
learn a lot at the neurology appointment.
Dawn, mom to
Joshua (9/15/1997, microphthalmia/
and
Jonathon (10/28/1998, type 1 diabetes, epilepsy)
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