's EEG

[Guest guest]

Wenoka,

I'm glad you have some answers. I will keep praying for . Did the

Doc mention what type of seizures he thought was having? What med

are they going to give him?

Thanks for sharing the news with us.

Sandi, 's Mom

[Guest guest]

Hey Wenoka, Just a word of caution with s meds. We tried Depakote

first. Lucas was very allergic. His Eos count went up dramatically (per

immuno) and he also bottomed out as far as his wbcs, platelets etc. It can

cause immune problems. We then went to trileptal ( oxycarbaxepine) which is

a tegratol derivative supposedly without the side effects. The rare side

effect is that the sodium level drops . And guess what so did Lucas's. We

dropped 12 points in 4 days. Many kids tolerate these meds very well. This

all happened since May. I would encourage to have CBCs and or electrolytes

depending on the med done regularly. It was a pain (literally) but in the

end we are very glad we watched so closely. There are many other

possiblilities with seizures but we were attempting to stabilize a mood

disorder.

This was not to scare you but to just help you to be cautious. BARBIE( Lucas

6, CVID, Bipolar etc.)

[Guest guest]

Tegretal (I'm not sure of the spelling, we haven't been able to pick up the

prescription yet, and I sure hope they can read the doc's writing better

than I could) is what has been prescribed at this point. Three times a

day, but once it is very well established, he said that there is a 2 a day

dosage for one of the tegretal products. Possible side effects are blurred

and/or double vision, and sometimes the white blood cell count drops. But

he said that this drug has fewer side effects than most, so he wanted to

give it a try. Also, it bad interaction with eurythro abx, which we don't

typically use anyway. We've never experienced an adverse reaction from

to any medication so far. I hope that he remains true to form on

this one as well. The doc will be doing regular blood testing to check the

cbc and level of medication. They'll do it when Sam gets his treatment so

that he won't have to deal with any extra sticks. Because of his PID they

did a cbc to get a base line blood count. I was so thankful that they just

had to do a finger prick for the cbc.

The doctor was not very forthcoming with information about the kind of

seizures. He answered some of my questions, but if I hadn't taken a crash

course on the internet, I wouldn't have even known what to ask. He said

that it is a focused in the back right hemisphere, there's no other area

showing abnormal readings, so - based on what he said and what I've read -

it's a simple, partial seizure. Also, it would be called remote

symptomatic seizures. The doc gave no indication about what part of the

body that controls, other than the observation that would probably

be impacted more on his left side during the seizures because they were on

the right side of his brain. He was surprised that it was the back

hemisphere, because the scarring that is apparent from the encephalitus is

on the front temporal lobe. He did say that sometimes the infection

penetrates deeper into the brain than what can be seen, so he still

believes that this is all originating as a result of the encephalitus.

Well, got to go take care of Christi.

Wenoka

[Guest guest]

In a message dated 10/02/2002 4:49:23 AM Eastern Daylight Time,

writes:

> Tegretal (I'm not sure of the spelling, we haven't been able to pick up the

> prescription yet, and I sure hope they can read the doc's writing better

> than I could) is what has been prescribed at this point. Three times a

> day, but once it is very well established, he said that there is a 2 a day

> dosage for one of the tegretal products.

Hi Wenoka,

has seizures that sound very much like is having. They are

very discreet and difficult to identify at times. Acutally, many times the

only way we knew that had a seizure was because he was limping or

slurring, which we were informed was the " post-itcal " phase, (the actual

seizure was over and the brain was " tired " thus the symptoms). We actually

had a full cardiac workup thinking he was having mini-strokes!

Anyways, LOL, he started on the Tegretol and had NO problems from it, except

that he was more fatigued in the beginning. The nice thing about the

tegretol is that it comes in both a tasty chewable tablet or a nice orange

flavored syrup (thick as hell though!!!) which makes adjusting doses with

either very easy. Sometimes it takes a while to build up to the right dose

to do the job and keeping a journal of his seizures will help to identify if

they are getting less frequent, shorter in duration, less intense, etc.

Unfortuately needed an additional drug to manage his seizures and he

also started on Diamox (which is actually a diuretic and no one really knows

why it works as an anti-seizure med, but it does). That was the magic bullet

for a while, but as he aged he needed a third, neurontin, which also helps

tremendously with his sensory dysfunction! We had some bloods done in the

beginning to follow his counts, but he had no problems in this area. The

doctor feels that the Neurontin will only be needed until he passes puberty

and he is no longer in a massive state of growth. Likewise for the Diamox,

but for now we just use all three, three times a day and no seizures since

October of 2001.

Hope this helps.

Take Care and God Bless,

Mommy to Annette 12 (Selective Antibody Deficiency-IGG 2 and 4, CP,

Developmental Delay, g-tube, HIV+), 6 (CVID, brain tumor survivor,

severe hearing loss, chronic sinus and ear infections, asthma, seizure

disorder, GERD) and Trayvon 3 (Ivemark Syndrome, severe congenital heart

defects, asplenia, situs inversus) All wonderful!!!!!

<A HREF= " http://www.caringbridge.com/ny/my2angels/ " >Click here: CaringBridge -

my2angels</A>

[Guest guest]

I have been so frazzled the past few weeks I cant remember if I even sent in a

bio so please excuse me if I am repeating myself..lol..(14) has autism and

up until the past few weeks has been med free all his life but he had a seizure

last month and so an EEG was ordered for today. He was to be sleep deprived and

had another seizure this morning ...triggered from lack of sleep???.. He did

great during the EEg and was very cooperative and the tech felt he had at least

one " good hit " ??? He sees his ped thursday aft and the drs are all talking as if

meds is a guaranteed next step? Has that been your experience? Will the EEG tell

the area of the brain affected? and does that determine the type of seizure he

experiences? I have been reading alot here and can relate to the hormone

thread...about 25% of our kids with autism develop seizures during puberty and

most outgrow them when the hormones are back to normal.'s seizures are

petit mal ones and not very noticable at all..can they change to something

bigger and scarier?

Anyway, thanks for listening to my long winded epilogue and now I do remember

writting to you all before..I appreciate your patience with a newbie..LOL

May you have warm words on a cold evening,

a full moon on a dark night,

and a smooth road all the way to your door.