In a message dated 2/8/2004 3:56:32 PM Eastern Standard Time,
kruchko@... writes:
Sent: Sunday, February 08, 2004 12:48 PM
Subject: Seizures - Luky's story




02/04/04
My son, Michael, 5 yrs old (Dec8,98) which has CP due to PVL, g-tube
(hopefully on the way out) had a seizure for the 1st time on Sunday night while
he was
sleeping. I was not going in that night to give him his usual 400 cal
supplement bc he had eaten so well by mouth that day but I did anyway around
10pm (I
last saw him at 8:45pm). I saw him lying on his side, jerking mildly and he
had blood around his mouth and alot of saliva around his face. He was also
extremely pale. I screamed for my husband and he picked him up and tried to
jerk him out of this stupor also trying to take out what he thought was
something
he might of been choking on. At this point Michael is turning blue and
purple. (Unfortunately, my husband and I had no clue what to do with someone
having a seizure, boy did we get a lesson.) Luckily the 911 person I was
talking
to finally told us what to do (very simply put him on his side and make sure he
did not get hurt)and he slowly came out of his seizure as the paramedics got
to our house. The blood in his mouth was because he bit his tongue and his
lip. The seizure lasted with us about 5 min. but we do not have any idea how
long he was seizing before I walked in the room. After the seizure and while
still in the hospital Michael was very irritable didn't want anyone messing with
him and when he tried to sleep, I lifted his eyelid and saw his eyes jerking
back and forth. I finally saw my son come back to life when he was in the
x-ray room and asked me "Where am I, mommy?" I breathed at last (this was about
1.1/2 hrs after). Of course I started questioning him on everything that
happened that night prior to the seizure and he was right on target on
everything.
I cannot relate to all of you the fear inside of me and my husband. Of the
5 years of things we've gone through this is going to top all of them.

My question to all you are the following: That night before we left the
hospital they wanted to put him on trileptal and we said no. We want to wait to
see the neurologist for EEG and MRI (our appt is tomorrow at 2:45pm). We do
have the Diastat just in case another seizure should start. I've heard some of
you talk about seizure meds before and I know you all have said there are some
side effects to them. Which is the best to start with? Does he have to
start with any? From what I described was this a Grand Mal seizure? Now that
he
had this one, how long before I see the next one (I'm praying I won't)? Is
there any equipment besides a baby monitor or me sleeping with my son would
alert me of him having a seizure? This is by far our biggest fear. Could HBOT
help to prevent future seizures? We've done about 150 in the past (about 1.5yrs
ago) and he did amazing. His cranial sacral doc said to request a calcium
count as sometimes when calcium is too low this could cause a seizure. Also
we've always heard if he doesn't get a seizure by 5 he probably will never get
one--guess not.

I have to tell you also that Nicholas is his twin brother and he saw us walk
in at 4:30am (God only knows why he got up at that time) and asked us where we
were and we told him that Michael got a little sick so we took him to the
hospital. Nothing more, nothing less and he went to sleep. The next day when
he
got home from school he came running to Michael and the first thing out of
his mouth was, "Michael why was your head shaking last night?" (Nobody made this
description to him and they sleep in separate bedrooms) and Michael's
response to him was,"I had an avalanche going on in my head" and then said to
Nicholas "It was not a little one it was a big avalanche." This is my son's
description of what went on. I've tried to ask him more but I cannot get
anything
else from him. I know he knows about earthquakes, volcanoes, avalanche because
my boys both live for Rescue Heroes these days (they have many videos). Could
Nicholas have felt something? Anything you guys can give me will be more than
appreciated.
Thanks a mil
Luky, Mom to Michael & Nicholas 5 yrs old



02/05/04 Response to Luky:
Luky
I am new to the list but can give you the following advice since my 8y old
used to suffer from Partial seizures but we did find quite an unconventional
cure for it. First of all it sounds like a grand mal that Michael had. You can
go and read up on : www.epilepsy.com, a good site that tells you about the
different seizures and what to look for.
On other lists that I am on people say a lot of good things about Lamictal
especially because it does not have the bad side effects on the liver that a lot
of the other medications have. You do have to watch him for a rash and if
that appears you have to stop the medication immediately. A lot of the other
medications for epilepsy do have an effect of supressing brain function whereas
I believe Lamictal have the opposite effect.
We use a product called DMG (Dimethylglycine) made by a company called Solal.
It is a natural product and it worked for Roald, it actually stopped his
seizures completely and he has been 9 months seizure free since we started
giving
him 200mg once per day. You can check it out on their web-page at :
www.solaltech.com
You might have to look for a local supplier and maybe you can search under
DMG or the full name as above for one.
I do hope that you get it sorted out soon.
Regards
Elna (mother of Roald, ND Oct 97, 8y old)



02/05/04 Response to Luky:
Dear Luky, This is an e-mail from another list that I had saved. When it
comes to Calcium there must be a balance and administering Calcium only may make
a magnesium deficiency worse. You can sign-up for the site I got this from at
the bottom. Also there was another email from someone on this list that has
figured out how exactly to handle each seizure with rubbing something on the
back of her son's neck. I didn't save that one.
As for the twins communication when they were in different rooms - there is
nothing strange about that. The strangest thing is that this is not common
place.


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