Question for those with TLE or absent seizures - Epilepsy Message Board

gavman · 08-27-2003, 04:11 PM

I've noticed more and more lately that my son (diagnosed with TLE, suspected absent seizures) seems to physically change when he is doing any kind of task that requires a lot of mental concentration (such as homework, learning a new game, etc...). He begins to swipe away things on his face that are not there. Complains of "itching" on his upper body, mostly face. He will flinch quite noticeably, his body in constant motion just as he sits there. Even if we bring it to his attention, he says he can't help it. Also when he is trying to say or explain something, he will begin to fidgit. He often has trouble getting words out, and the more difficultly he is having the worse it becomes. I really don't see this type of behavior from him at other times. Just when he has to put a lot "brain work" (for lack of a better word) into it.
Anyone else experience this? I'd really like to understand what is happening to him when this is occuring. He is 7yrs. old, taking Depakote. The doctor seems to think this is of no significance, but it affects my son greatly.
Thanks.

LisaGuthrie · 08-28-2003, 12:31 PM

Hi Gav,

Don't know that this will add value but, I have noticed something along the same lines with my son Jake. Jake's 20 mths with TLE - left side focas. He is behind in speech and a few other areas as well... But, when he is really focused on something new his eyes will get much bigger and he lifts his eyebrows. It almost looks like his face is growing. I have noticed too that he will drag his open hand from his brow to his chin over and over when he's done. Most the time this is a smooth movement, however there are times that he will stop and rub the same area really fast for several seconds like he's scratching an itch.

Wish I could tell you what he's thinking... or if it's really an "itch" or just relief that the task is complete or we've left him alone for a bit!

Take care. Let me know if your dr ever says for sure what he thinks it is!!

Hugs to you and your family!

Lisa and Kids

gavman · 08-28-2003, 03:07 PM

Hi Lisa,
Thank you for your post. I've read many of yours over the past several months and have gained a lot of knowledge from them. I also purchased the book "Seizures and Epilepsy in Childhood" that you recommended. I read it just days before our last neurology appt. It helped me to be more direct and confident in the areas of concern I wanted to discuss with him. We went knowing the doctor intended to increase my sons medication. He had wanted him to gain a few more pounds before increasing it. I really would like to see how he would do without the medication, especially since he has had no seizures that we know of for two years. This is somewhat up in the air, I think he could possibly be having some "break through" seizures or very short absent seizures. We requested that a video EEG be done before we increase the meds. The video EEG was recommended by another neurologist that we took our son to for a second opinion. Although our current neurologist has no idea we obtained a second opinion, he did agree to the video EEG. Our current neurologist does not think my son's behaviors (described in the above post) are related to TLE, the neurologist that gave us the second opinion disagrees. My position is, why increase the meds before we even know what is actually going on? Anyway,
thanks again for your reply and I wish you the best for your little guy. As difficult as it is trying to figure out what is happening with my 7yr old, I can't imagine how it must be with a 20mo. old. Take care.
Gavman

LisaGuthrie · 08-29-2003, 02:56 PM

Hi Gavman,

I'm so glad the book helped you some. It's been a great help for me. Validation of gut instincts on several things. We pushed to get his med schedule spread out over the day because he had so much trouble within 2 or 3 hours of taking it and often had breakthrough seizures before the next dose, so they let us try 5 doses over the course of the day. So much better on him that way.

You are so right to see a second neuro. Jake was just getting worse and worse, slower and slower and we kept asking for more aggressive treatment. I wanted to try some of the newer drugs and most have not been approved for kids Jake's age. When his EEG showed SO much more adnormal activity in March Dr Winesett contacted a second Dr for us.

Dr Jose is great, he teaches ped neurology at USF and he's a ped epilictoligst (sp). He also has rights at All Children's in Miami if we would every need surgary (we live in Tampa).

Dr Jose was able to get Jake in a FDA study for Trileptal for children between 2 mths and 4. We called several Dr's and specialists that we've met along the way and each one said to go for it. One Dr. in CA is sending little kids to Dr in Canada to get this drug. So, we did it. The drug company has picked up the cost of everything since April (including my wages while he's in the hospital).

This treatment has given us relief from the daily activity. We get them in clusters now about every 14 days. SSSHHH - today is #18 however and so far so good! We're keeping our fingers crossed and not telling very many people. Each time we've said something about getting a bit of control things seem to spin out on him again. So Grandmas and Grandpas don't even know - this is the longest break since Jan.

I need to hop off and finish the day. I'll try and get back and catch up some this weekend. It's been a really busy week at the office.

Your family will remain in my prayers!

Love and Light

Lisa and kids

P.S. Question: I've wondered if the face thing with Jake could be partcial seizures, have you asked about that. I have it on my questions list for our next apt. but that's not until the first of Oct. Just a thought!

KittyMom · 08-29-2003, 04:43 PM

God Bless all of you who take care of little ones with this nasty "E" thing. You should be rewarded!!

Let me not forget...God Bless your little ones also. The poor dears who endure those horrid seizures and so quietly endure the postictal period.

You and your families are all in my prayers!!

God Bless,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!