My son has epilepsy

[momofevan]

we recently have found out that my son has idio-pathic epilepsy..they have done a CT scan and an MRI..both came back completely normal...but his eeg came back abnormal. He is having partial seizures..both complex and simple...he is only 2 years old....we have him on zonegran and have been continuously been tapering him up since the original dose prescribed has not been effective...anyone have support or experience they can share with me..more educated questions i can ask his nuero???

 

[Dutch mom]

Welcome here on CWE from another mom.

My son (age 10 now) started to have seizures at age 1,5.
He was diagnosed with braindamage so his epilepsy turned out to be symptomatic and he developped a bad epilepsy syndrome. He's resistant to AEDs and he's on the ketogenic diet to reduce his seizures for over 5 years now.

Idiopatic epilepsy has a far better chance for treatment with AEDs. He's only diagnosed recently and on a first med, I understand? Except for zonegran there are several other AEDs to try for partial seizures.

How is your son's development untill now?

 

[Dutch mom]

You might want to check out this site http://www.kidsepilepsy.com/

You'll find many stories and experiences there.

Search by diagnosis: simple (33), complex (280) and just partials (47)

Search by treatment: zonegran/zonisamide (133)

 

[momofevan]

my son has been developmentally on target....he is a very rambunctious little boy...the doctor felt that zonegran would be the best start for him..as it is the least likely to cause behavioral changes....he started off on a very low dose. his capsules are 25 mg each...so the set goal for him was to stay at 1 1/2 capsules in the morning and at night...well he has been still having events so we have tapered him up more..he is now at 2 capsules in the morning and 3 capsules at night (50 mg/75 mg) we are hoping within the next six days to stay at 75 mg in the morning and 100 mg at night...at this point we are trying to make sure that it is in deed the zonegran failing...we are probably going to have to switch meds...like i said this is all new to us and i am not exactly sure what changing his meds all entail...will it be another hospital stay??

 

[Dutch mom]

No, meds aren't always introduced/weaned off in the hospital.
My son only once was hospitalized for a new med, for all the other ones we got a receipe and a scedule to do it at home.
Usually it took us several months to try a new med.
Perhaps they will try another med for your little boy. But another possibility is polytherapy, combining zongeran with another med. Kids I know who use Zonisamide usually got it prescibed as an add on med with one or more other meds.

 

[dfwtexas]

Welcome to our group...I have a son named Evan too! I also have idio-pathic epilepsy. In my case, my EEG did show seizure activity. My neuro said only 40% of EEGs on people with seizures will show seizures.
A journal is a good way to identify triggers, although I am sure with Evan being so young, that is challenging. There are many parents on here that have children with E that can probably help you out with that.
I got diagnosed almost 2 years ago at age 47. E can stike people at any age and for reasons we don't understand. This forum is great place for information, support or just to come vent your frustation.
jenn

 

[momofevan]

thanks jenn.....and yes with his eeg it came back with abnormal activity....although the CT scan and MRI have both came back completely normal....hoping to find the right dose of zonegran for him soon....we keep tapering him up....

 

[Lady Edge]

Good luck. My son was diagnosed with epilepsy in March and so far, nothing has kept them at bay (except for a couple of months over the summer!) He is on Trileptal and Keppra with a b6 supplement to supposedly counteract the "Keppra Rage" associated with the med. We are in the same situation. Everything comes up normal except for some seizure activity on his EEGS. I feel like it's getting worse! While you decide on the best methods for your little guy, pray. It helps! I'll send out a prayer for you tonight.

 

[Andrew]

If you have not already done so, ask your doctor about vitamin B6 and seizures.

My story:

I had my first seizure at two weeks old. I spent the first six months of my life in and out of hospital. Doctors were mystified by my illness. None of the ‘normal’ antiepileptic drugs that were administered had any positive effects. At this time I was having many ‘different types’ of seizures a day some of which went status. Countless tests were being done including, EEGs, lumber punctures… etc. A top pediatrician from the main city hospital told my mother that he was going to a meeting. He said he would talk about me in the hope that someone there would be able to help us. At this meeting there was a professor who was doing research into childhood epilepsy. He suggested a trial of Pyridoxine Hydrochloride (vitamin B6). Pyridoxine Hydrochloride was administered (I was five months old). Within two to three days my mother noticed a big difference in me. I’d stopped having severe seizures. Because of the positive effects that Pyridoxine had on my seizures doctors slowly weaned me off all the antiepileptic drugs (this was back in 1970-71). I’ve been taking Pyridoxine Hydrochloride on a daily bases ever since.

Also ask about Pyridoxal 5'-Phosphate (P5P or PLP - the active form of vitamin B6).

Some interesting links can be found at the following URL: http://brain.hastypastry.net/forums/showthread.php?t=36549&page=4

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**