What is this?

[Mom2tripp]

Tripp started the increase of depakote 250mg added to his already 1000,mg twice daily....so NOW HE IS TAKING...1250mg of depakote twice daily.
He has started to tighten up his body when he turns his head...his whole body will tighten...his fist tighten this last for just a few seconds but his had MANY of these. We were eating out last night and he did it several times....I gave him an ativan and after about 30 mins they stopped.

He took his night dose of 1250mg of Depokate and 200mg of tegretol at about 9pm.
I was up late just watching him sleep...he had 10 at least of these I would say even more than 10. Sometimes he would rise up in bed...look around and go "whew" Whew"...then lie back.

I am used to his head turning but this tightening up his body is new to me....at least he has not fallen! BUT then again he was not standing when he had any.

How long before this depakote helps...he has tried all else....neuro is wanting to take him off Tegretol. He is down to 200mg twice daily.

 

[speber]

Hang in there Mom2Tripp!....

...a rough road for sure. Keep good accurate records so doctors don't make the wrong calls prolonging this bs.

...and most importantly, take DEEP BREATHS when you can!...you guys will get through this.

I don't know how old Tripp is...but I was 7 when I began having multiple T/C's a day. It lasted a couple of years and was affected differently by different drugs...but they didn't really subside until I started puberty. Then they became nocturnal ONLY and very infrequent to the point ALL drugs were stopped and I actually was seizure-free for years. Once the stress of being an adult kicked in (or maybe the beneficial effects of puberty wore off?) the infrequent nocturnal seizures came back to stay.

My point is...HANG IN THERE!...ask lots of questions!...we're here to help too!

Good Luck
Spencer
:rock:

 

[Mom2tripp]

Thanks you Spencer. This sounds like such a nice place to be. AND I love that I get so many answers to my post. I hope I can be of help to others here as they are to me.
Tripp is mentally delayed. He is almost 28 but about age 8 mentally. He is the most loving little guy and looks like he is about 12...the size of one to. He has the most amazing love for people and after meeting him the love him too.
He is the one that keeps my faith strong and my prayer life going.He loves going to church and Sunday school.
He began having seizures at age 3 when he nearly died...his oxygen was cut off for quite a while.He chocked on his on vomit.(sorry so gross sounding) He stayed on pheno for several years...has a bad time on dilantian as it caused his white count to drop way to low. After being on pheno for 7 years and NO more seizure he was taken off. At age 13 or 14 he started back with them....started pheno again....then added tergetol......then after years one this and still having some grandmals we had to up the tergetol. Then about age 22 the head turned ones started....and now there is NO control!

 

[RobinN]

Do you think that the increase in meds has brought on this "body language". I do believe that certain meds increased Rebecca's seizure activity. It is my belief that tegretol was one and trileptal was another (they are related).

I find it so helpful to keep a journal (calendar) of Rebecca's occurances. I could never possibly keep all of this in my head. We are actually talking on another thread about ways to do this via computer. You might take a look at what has been suggested so far:

http://www.coping-with-epilepsy.com...programs-noting-rate-intensity-seizures-2160/