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View Full Version : Anyone familiar with seizures, epilepsy, Tegretal?


Snoopymom
04-18-2007, 09:32 AM
6 yr old ds was diagnosed yesterday with frontal lobe seizures and we're starting him on a low dose of Tegretal tonight.

His sudden behaviors/symptoms were pointing to Reactive Attachment Disorder (he's adopted) or Bipolar with violent rages and mania but without the lower depression end, so now we're reeling after going to psychologists, psychiatrists and neurologists for the last few weeks.

Any experiences, web sites, info, anything at all?

Thanks a bunch!

lisajl
04-18-2007, 11:45 AM
My son, 9 has had one seizure, possibly 2. We are going to neurologist May1.
I am sorry I have no advice for you, but here is a bump, maybe someone else will be able to help you.

Here's a :grouphug: for you and your DS. Hope all goes well.

Lisa

Snoopymom
04-18-2007, 12:15 PM
Thanks! Yeesh, waiting for May 1st feels like forever doesn't it? One neurologist I called didn't have any appointments until 6 months out. Hopefully we'll be able to get the CAT scan done in a few days. If you'd like, I'll let you know how the medication works and if there are any side effects, etc.

Hugs,
Cindy

My son, 9 has had one seizure, possibly 2. We are going to neurologist May1.
I am sorry I have no advice for you, but here is a bump, maybe someone else will be able to help you.

Here's a :grouphug: for you and your DS. Hope all goes well.

Lisa

daughtersrus
04-18-2007, 12:27 PM
6 yr old ds was diagnosed yesterday with frontal lobe seizures and we're starting him on a low dose of Tegretal tonight.

His sudden behaviors/symptoms were pointing to Reactive Attachment Disorder (he's adopted) or Bipolar with violent rages and mania but without the lower depression end, so now we're reeling after going to psychologists, psychiatrists and neurologists for the last few weeks.

Any experiences, web sites, info, anything at all?

Thanks a bunch!


My DD was diagnosed with absence seizures about 8 years ago. She was only about 3 at the time. The Ped Neuro weaned her onto Tegretol but the day after she had reached her full dose, she had a horrible allergic reaction. We had been to a street fest the day before and every part of her body (with the exception of her face) was bright red. You could see the outline of the tank top and shorts that she had worn the previous day. We thought that we had kept her out of the sun since she was loaded with sunscreen and in her shaded stroller.

The Ped Neuro did say that it was the worst rash that he had ever seen so I'm sure that her reaction was not common at all. She quit the Tegretol cold turkey and we weaned her on to Neurontin. Long story short she then weaned off that and onto Topamax. She stayed on Topamax for a few years but started showing side effects. We weaned her off that and onto Keppra and she's been on that for a few years now with no side effects at all.

Her diagnosis has now changed to Complex-Partial seizures. She still has staring spells but if she is holding her toy or chewing on it, she will continue but just at a MUCH slower pace.

Here is a link to a web site that may help. There are a bunch of organizations listed at the bottom that would be a wealth of information.

http://www.webmd.com/epilepsy/guide/national-institute-neurological-disorders-stroke

I wish you and your son the best! :grouphug:

forr2grls
04-18-2007, 01:31 PM
We know the seizure monster all to well.DD started having seizures when she was 17 months old,She is now 8.She has been on quite a few meds.The worst 3 were keppra(rage)depakote(weight gain)and dilantin(toxic).She is on carbatrol(carbamazapine)which is similar to Tegretol.The big thing to watch for with this drug is liver toxicity.I could go on and on.But not enough time right now.Here are a few sites to help you:

www.epilepsy.com
http://brain.hastypastry.net/forums
www.epilepsyfoundation.org
http://kidsepilepsy.com

Paula

Snoopymom
04-18-2007, 02:36 PM
Thanks so much for all the info. Looks like I've got a lot to learn. I've been checking out the web sites and I wish just one of them would mention the rages that ds has. I did find a little about it on a Mayo clinic site, but that's it. Thanks for the warnings about the side effects, but honestly right now, I just want the seizures to stop, and I'm glad to know there is medication that works...one thing at a time I guess.

Hugs to you all,
Cindy

lisajl
04-18-2007, 03:46 PM
Hey Cindy,
Yes, May 1 is a long way away, but my son has not had any more seizures. I am hoping it was a one or two time thing. We are not sure if he had a second one or just blacked out.
At any rate, we had a CT scan done and it was normal, then an EEG and it was normal too.
A coworker of mine, her son, had a brain tumor. They have been through what we are going through now. Her son has been off seizure meds for 2 years now and he is doing great.
I am hoping they will not put our son on seizure meds since it has only happened once, for sure.
We will see how it goes.
I wish you and your son the best...

Lisa

jwsqrdplus2
04-18-2007, 10:49 PM
I posted this on the CB too, but I thought I would hit you at both locations!

My 8yo DD (the one on the left in my signature pic) was diagnosed with epilepsy 4 years ago. She currently takes depakote and Zarontin although I am about to start weaning the Zarontin. We have never had to deal with Tegretal, but weight gain is a very common side effect with that one.

:grouphug: to you and your family. I know this can be tough! If you haven't been there already, check out this website: http://www.epilepsyfoundation.org/. Under eCommunities is a forum called Parents Helping Parents. It is an awesome place to go for advice from other parents who will know and understand exactly what you are going through. I do not post there often, but my screenname there is Ashlynn'sMom.

Best of luck, and do not hesitate to PM me if you have any other questions.

MandM-Mom
04-19-2007, 04:39 PM
My DD 9 months has had seizures since she was 3 months old, we think she has been having them longer maybe since birth but was not officially diagnosed until a little after 6 1/2 months old...........we went to many pediatric neurologists, a pediatric GI specialist until finally our Pediatrician and our pulmonary dr admitted her...........every Dr had another reason for what we called her episodes, reflux, lack of oxygen, you name it......but finally after 3 major seizures in one night at the hospital an eeg finally showed seizure activity........she now takes trileptal 2xday.......it didn't work in the early doses but now we have increased her dose and all seems well....for now. Hang in there it does get better, it took us 9 months to be able to say that!!!

Snoopymom
04-20-2007, 12:47 PM
Lisajl
Sending positive thoughts and prayers that it was a one time thing and he doesn't have to be put on medication. Please let us know.

Mandm-mom and forr2grls
Hugs, I can't imagine going through this with little ones. I'm so glad to hear that you finally got the medications right.

jwsqrdplus2
That parents site is awesome...I did a search and some have had similar experiences with aggression. I was beginning to think I was crazy. I can't thank you enough!

daughtersrus
Thanks for the info about the side effects. My brother had a sunburn type of reaction to some medication and ended up in the hospital, it was the wierdest thing, but I guess common.

Do you all know how quickly the medication works? Also, he is on trileptal not tegetrol, and what a nightmare. He gaged on the liquid, couldn't get it down the first night, had to go back and get pills and thankfully no problem with them.

Also, he said when he feels ok, everything is black with sparkles and when he feels really bad, he feels like a cartoon character...probably a good description of a seizure?

He also said his Daddy gave him a sucker the other day and he couldn't remember eating it but it was gone.

I'm trying not to beat myself up over the fact that there might have been earlier signs. Just last week, the teacher sent a note home saying he was being defiant when she asked him three times why he did something and he said he didn't remember and then he finally yelled, "I don't know" and ran to the back of the playground...ugh, the whole year has been like that for him at school, I'm so sad.

Thanks for listening. I'm so glad to be getting answers.
Hope you all have a great weekend,
Cindy

forr2grls
04-20-2007, 01:52 PM
"Also, he said when he feels ok, everything is black with sparkles and when he feels really bad, he feels like a cartoon character...probably a good description of a seizure?

He also said his Daddy gave him a sucker the other day and he couldn't remember eating it but it was gone.

I'm trying not to beat myself up over the fact that there might have been earlier signs. Just last week, the teacher sent a note home saying he was being defiant when she asked him three times why he did something and he said he didn't remember and then he finally yelled, "I don't know" and ran to the back of the playground.."



Sounds like seizure activity to me!Could be complex partial or simple partial.
DD has been on trileptal before,wasn't on it long,didn't help.Meds can take up to 2 weeks to start working,but usually with AED's the time is shorter.Hugs to you and your family.I hope trileptal is the one and only med you will have to try!


If you have any more questions please ask!You can pm me if you'd like.I'd more be than happy to help.


Paula

leanan
04-21-2007, 01:50 PM
I took this drug as a teenager for an off label use. I was misdiagnosed with ADD at the time. Now my diagnosis is Bipolar. That all is besides the point really

This drug will make your child very sleepy possibly. Kind of zombie like. I could not stay awake to save my life when I was on it. I was 12 or 13 at the time. I finally told my parents I refused to take it any longer and poured my bottle down the toliet. Boy was my mom ticked.

spotdog
05-04-2007, 11:04 PM
Hang in there!!

Tegretol gave me a rash which almost sent me to the burn unit. But it works very well for a few people I know. (Seizures and Bi-polar disorder).

Depakote (Valproic Acid) worked well but I doubled my weight in one year and couldn't lose it, no matter what I did!!!!:confused:

So I took Dilantin and Phenobarbital for a few years and lived a life of disability until a constant (4 days) of observed EEG discovered I never had complex partial seizures, but severe panic attacks with dissociative episodes. I now take a combination of "psych meds and seizure meds". As an adult, I can also use thinking techniques to "redirect my thinking and behavior".

It is helpful to remember that brain structures, chemicals and electrical signals can make wrong turns and that is NOT the fault of patients or their parents. :grouphug: Medical technology is improving every day. Feel free to PM me.