Molly,

He was Toxic this weekend? That explains his 'severe' mood swings that you described in your last post & the ones he is having now. :( And It may take awhile for the high dose to get out of his system. :( This is Not related to his seizures. And Exhaustion IS a side effect of Tegrestol & several other of our meds. :( Especially when on Too High a Dose for a Persons system. I think I would ask the DR for Another med to Try!

Love Candi

Molly,

Hi, I just found your post and agree with Candi whole heartily. It sounds like Tegretol may not be a good fit for him. I had difficulties on Tegretol too. It made me a complete zombie. There are lots of different seizure meds. out there and finding the right one that works for your son is the key. Sorry to hear that his behavior is off the charts, but try not to focus on that for the time being. I am not saying to not discipline him, because it is important to treat him like a normal kid. But, many of his odd behaviors can be caused by the seizures themselves or the medication he is on.

Try and find activities he can do that will keep him busy and focused. And try to limit the amount of stimulation around him. Like keep the volume of the TV down, and don't always have the radio on. keep lighting subdued, that sort of thing. When he is outside have him wear sunglasses. Bright lights can bring on seizures. Even in some big buildings like Costco or Walmart the artificial lighting can set off seizures. So sun glasses are helpful. I had a neurologist tell me that we are less likely to have a seizure when we are actively focused on doing something. So having actively coloring, building Legos, or whatever is a good idea.

I hope this was helpful. And I hope that things improve for your family. Keep us informed.

Hugs, Cathy

Molly,

Why is your son on Tegretol? If I were you, I'd talk to a different neuro and get another analysis and opinion. As the others have said in response to this post, it is likely that tegretol isn't the right medication for him. Many doctors forget that medication for kids is basically untested. Often, the body weight, solely, is used to determine the dosage, but there is MUCH MORE involved than just pounds. A child's metabolism may be totally different than that of an adult, as is the ability to assimilate and utilize individual components of a medication.

And, by the way, any seizure medication will make him sleep more, just by the very nature of depressing the nervous system. I'd look for another one with minimal effects. I've taken about 8 different drugs in my search for minimizing my seizures, and I've gone through many differing "side-effects" AND I'M AN ADULT...

I wish you GOOD LUCK!
Dimmie

Molly,

Your son is Old enough for the Ketogenic Diet. Have I mentioned this B4? :) Please read these articles. :)

http://www.webmd.com/epilepsy/guide/ketogenic-diet

http://www.medicalnewstoday.com/articles/179311.php

Visit epilepsytalk.com for recommendations by other EP PPL for Good Neuros Or pediatric neuros. It's Hard finding a DR who will agree to this Diet, but, they are out there. :)

Another Good Site for alternatives/diets/ info coping-with-epilepsy.com. :) Clik on green letters. :0

Love Candi

thank you all so much for your replies... I can't tell you how much I appreciate the support.

So - they told me they wanted to try Tegretol first since it's been around so long and know more about it than some of the others. It's also possible to get blood levels which can help. And, lastly, they said that other meds are worse for kids as far as side effects, particularly behavior ones - for example, keppra. I spoke with his Dr. last night about possibly switching meds - I just don't want my little boy to be miserable all of the time. He's starting kindergarten in a few weeks, too, and I'm worried he'll be so sleepy/cranky/etc. that he won't be able to enjoy it or get out of it was he's supposed to (already have a meeting with the school to discuss what accommodations might be possible for him). Anyway - his doctor says he is still hopeful that Tegretol might work for him, but thought the moodiness was more likely due to exhaustion, rather than a direct side effect of the drug, so he lowered the dose a little more and got him off of the extended release formulation so that it might be cleared a little faster from his system. He also thought things might even out in a few weeks. I sure hope so... I hate to see him like this.

Cathy - thanks for all of the suggestions - I need them! And you hit on another point that I've been struggling with, too - discipline. It's so hard to discipline when I know much of what he is doing is because he feels terrible, but, at the same time I can't let him hit and scream either.

Thanks, too, for mentioning the alternative therapies - I'm interested to learn more. I think the ketogenic diet would be so hard for a kid, but if the research is solid it might be worth a shot.

Thanks again everyone -
Molly

Hi Molly,

The Research is Sound! In fact, Diets were recommended/used, successfully, B4 medicine, back in the early 1900's. The pharma companies Buried the Info. I swear! :(

It is a difficult Diet to follow. But, a site I read said the transition can be made easier. :) Guess How? By fixing the same 'Diet' for the Whole Family! :) Kids 'normally' do eat what we as adults prepare for them & ourselves. It's once they get to school & see other kids eating stuff they ain't allowed, that's the tricky part. But, a positive attitude & Education, will help w/ the transition. :)

Love Candi

I have been on Tegretol for years and for me personally it was a literal life saver. Iwas put on Tegretol as a replacement for mysoline as a result of Mysoline being a very bad medication for me. I am much better now. But having too much Tegretol in the system is very real. A blood test will show how much Tegretol is in a patient's system and if the dosage has to be adjusted. It is recommended by my family Doctor that such a blood test be done once every six months as it can also show other issues if they are there and prevent needless sufferring in the distant future. In closing I shall add that the ORIGINAL Tegretol and the newer Tegretol that is cheaper are not equally helpful in controlling Epileptic Symptoms. If therefore the original is what he needs exact from your Doctor that he/she mark "do not substitute" for the Tegretol. The pharmacist will be obliged to give you the Original at the price of the newer version of Tegretol....at least that is how it works for me on welfare because the two are not coverred by welfare. Good luck

Hi Molly, how many seizures does your son have in a day, wk, month?
The very first medication I was on, Phenobarbital, I was told it was used most for children (you could ask your neurologist about it). I was on tegretol and topamax for a long time, sleepiness is a big problem. Falling a sleep for hrs at a time during the day is not unusual. I hope it gets straightened out. Good luck and God bless
Maxine

Maxine - I don't really know how many seizures he was/is having since apparently his are during the night and absence seizures in the day. He had a 'big one' a few weeks ago in the night that resulted in Todd's Paralysis which is what alerted us to the condition. I'm having major guilt right now because in hindsight I think he may have been having seizures for quite some time, but since they were in the night, I didn't recognize them as such.

The doctor has now adjusted his Tegretol, and the moodiness at least has gotten better - what there is I think is due to being tired. He's still napping a lot in the day, and I'm worried about how he is going to do when he starts kindergarten in a week and they will only have 30 minute nap at 2:30 in the afternoon. Anyone have any experience with how to help kids manage at school?

Hi Molly,
I hate to say it but you probably will have to take it one day at a time, also there is alot of excitement in kindergarten (children, teacher, activities). Hopefully it will counter act his sleepiness.
Maxine