(((((Jan))))).
I feel for you! I have always had epi and have an autistic teenage son.
Before trying anything else, if you haven't yet, I would look into dietary
interventions. Celiac/Gluten Intolerance is extremely high in autistic kids (and
families). I was dx'ed with Celiac almost 3 years ago and have actually had szs
from accidental "cross contamination." It's certainly worth looking into, and I
wouldn't bank on the szs stopping at puberty. Although they can, or at least
they may get better, they can also get worse. Dietary interventions can help in
some cases better than meds and don't have the frustrating side effects.
Good luck!
LIZ in will-the-snow-ever-melt RI :)
________________________________
From: Janet Formichella <im22tired@yahoo.com>
To: epilepsy@yahoogroups.com
Sent: Mon, February 7, 2011 11:02:09 AM
Subject: [epilepsy] Need help - sorry so long
I am asking for help from this community of people who have lived with epilepsy
personally or as a caregiver.
My son was diagnosed with Epilepsy when he was 12 years old. My son also
carries a diagnosis of Autism. A sizeable number or children on the autism
spectrum also have seizures. He also had 2 or 3 migraines a year
For the first 2 and ½ years Colin had about 4 or 5 seizures a year. They were
Complex Partial seizures that usually moved to tonic-clonic seizures. He would
begin he being non-responsive, slumping over and druelling. Often his lips and
hands turned blue. Then when placed on the floor the left side of his body
would jerk and he would lose bladder control. Sometimes his eyes would run back
and forth quickly or roll up. After he came around, during the post-ictal
period, he would not be able to speak. He was frightened and combative. This
w9ulod loast about 1- 1 ½ hours and then he would sleep the rest of the days
away. These seizures occurred at all different hours and random days. At this
time he was taking Trileptal and Topimax.
After the 2 ½ years, his seizure pattern changed. He began to have more
frequent seizures with additional seizures being drop seizures or walking around
unresponsive while picking at close and chewing his lips. During this time
period we also saw his behavior change for the worse. He was becoming more
aggressive and temperamental. It was decided to add Depakote to control the
seizures and improve his mood. When he reached the therapeutic level we weaned
him off of the Topimax.
He was weaned off the topimax by the end of July 2010. In September 2011 all
of this changed.
Suddenly he was experiencing some new type of neurological event. Most times ,
these event began with vertigo. He would walk like a drunken sailor, careening
off walls, falling flat on his face or falling down stairs. We would try to lay
him dowm and he would immediately fall to sleep. After an hour to 1 ½ hours, he
would bolt upright and vomit. The sleep vomiting cycle would last for 6 to 8
hours.
I took him to the Emergency room and they told me he did not have a stroke
(Thanks for putting that Idea in my head, Doc) After admitting him it took 4 or
5 hours to stop the vomiting even with IV medication. The consensus was that
he was having headacheless migraines. He was prescribed migraine medicati9onas
and Zolfron for nausea.
Nothing improved. Once a week he has a one of the "neurological events", They
almost always occur around 7:35 after he arrives to school and is in homeroom.
Exceptions are 2 events that occurred on weekend afternoons at home. The
usually happened at the beginning of the week.
We reached out to the nearest Children's Hospital and they agreed that he was
having unusual migraines. He was given Maxalt Melt for migraines and Zolfron
for nausea. He is now drinking 4 bottles of water a day to keep hydrated. He
had not had a typical migraine since June of 2010. But these vertigo/sleep/
vomiting episodes are occurring at least once a week and he is missing a lot of
school.
The Doctors decided to reintroduce the topimax, thinking that he did not have
these episodes prior to the medication switch of adding depakote and weaning off
topimax. The doctor reintroduced the topimax believing that it might have been
holding the "migraines" at bay in the prior years.
I really did not want him on Tiopimax. I had been on Topimax for a couple of
years for migraines and during that time period I found that I had muddled
thinking and difficulty with word finding. I did not want my son to experience
this side effect since he already had word finding problems and I noticed his
frustration level rise over the last couple of years.
We went back to Children's Hospital last week. They said that they now believe
that what we are seeing are seizures, with the sleep and vomiting being the post
ictal period. They are suggesting the VHS.
I am asking for this communities help in sorting this all out. I don't want to
use the VNS and implant something in his body if he might outgrow the
seizures after puberty.
My Questions:
1.. The Doctor said that he will probably not outgrow the seizures. (How does
she know?) Doc says he has failed 3 medications and If you fail three you are
likely to fail the rest. (Is this true?)
2. Does anyone have any neurological episodes like my son is currently having?
3. Are they migraines or seizures? The doctor is now sure they are seizures
but she was sure before that they were migraines.
4. Has anyone had seizures that changed in the manner of their presentation
over the years?
5. Although right now I have no intention of cutting a hole in my son, What are
the statistics for success with the VNS?
6. Do you think these things are migraines or seizures?
7. Has the presentation and symptoms of your seizures changed over the years?
8. What is the success rate of the VNS. The loiterature says that it "May"
help. I would like to see some statistics that will make this an option due to
high success rates.
9. Has anyone failed 3 or more drugs and been successful with future attempts
to find the right medication
10. Should I be going to another big city to find another doctor to
consult?Thanks you - Jan
If you can find a path with no obstacles, it probably doesn't lead anywhere.
- Frank A. Clark
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