i am new here..and have a few questions

[momofevan]

i am a mother of a 2 year old who has been diagnosed with idio-pathic epilepsy...he is having partial seizures..both complex and simple....since he is only 2 there is no way of me asking him questions on how he is feeling ....

one of the questions i would like to know is...how common is it for someone to have partial seizures and then start having generalized seizures??? what are his chances of having gran mals.....i have asked the doctors these questions and she has told me that he is at risk for them...and we now carry the emergency medicine on us now just in case it were to happen.

this is all so new to me and i have been worrying so much...i have read through some of the posts on this forum and have noticed there have been people who have died from this...and even more scarey thought..

[Jen]

It is very possible for them to generalize into Tonic Clonic (also known as grand mal) seizures. Seizures can take any turn at any minute. Its really good that you have emergency medicine. Some people never have a tonic clonic in their life, some however, start with one type and completely go to another. My brother would have complex partials, or even simple, and they would usually generalize into tonic clonic.

[momofevan]

jen i seen your post last night..and i am so deeply sorry for your loss......

may i ask how old your brother was when he was diagnosed??? did they start off as partial then eventually become gran mals?? or did they always start off into partial and immediatly into gran mals??

[Cint]

Momofeven,

My seizures started as simple partial and complex partial seizures and they gradually turned tonic clonic (gran mal seizures), but I was in my early 20's when they started. Not all people that have simple partial and complex partial have the tonic clonic also. And not all meds work for everyone, either. I tried over 10 medications, had a temporal lobectomy and the VNS, before I had any type of control of my seizures. For many of us it is a trial and error method before we find relief, but others find relief much sooner.
Make sure your child is seeing a pediatric epileptolgist, someone who knows what they're doing. I hope you find the answers.

[Billyboyboo]

Hi there,

I have Partial Complex, I've had 2 Tonic Clonics (That I'm aware of).

Billy.

[momofevan]

yes my son is seeing a pediatric nuerologist....one who i really like...we live in pittsburgh so children's hospital is literally right around the corner from us... he has just recently been diagnosed..at the beginning of december...so this is all very new to us...and frustrating and scarey...we are trying zonegran..so far none of the doses have worked..so we are tapering him up again...we are goingt o see if 75 mg in the morning and 100 mg at night will do the trick....if not we may try to add another med..i think she had said topamax(spelling?) but i could be mistaken.....or change to keppra altogether....i am hoping to avoid keppra as i know that that is one that really causes disturbances in the behavior....and as i said my son is only 2. we could be having breakthrough seizures at the moment because of his teething of his 2 year molars.....its just so hard to tell at this young of an age....i am not gonna lie..coming here and reading some of these posts has really scared me even more than i was..but alot of it is helpful...

[Nakamova]

Sometimes it can take awhile to figure out the right meds or combination of meds. I was on Zonegran two years ago, but it didn't work for me because it made it hard for me to eat, and actually triggered seizures from low blood sugar. (I assume you'd notice if Evan's appetite had been affected by the Zonegran, so that's probably not happening with him). I'm now on Lamictal which seems to work okay. So you may need to be patient (not easy from a caregiver standpoint, I know) and proactive at the same time.

[Jen]

jen i seen your post last night..and i am so deeply sorry for your loss......

may i ask how old your brother was when he was diagnosed??? did they start off as partial then eventually become gran mals?? or did they always start off into partial and immediatly into gran mals??

He was 15. He was diagnosed in feb of this year. When first diagnosed he would only have grand mals. After he started topamax he began having simple partials as well. Sometimes he only had simples with nothing else. But it was more common for them to generalize.

[RobinN]

Momofevan - Welcome to CWE

It is thought that Rebecca's seizures might begin as complex partial and then generalize into tonic clonic seizures.

Are you at all interested in considering nutritional changes for Evan? There are great indications that for many it is helpful. Certainly better than getting on the drug merry-go-round. It has helped my daughter quite a bit, and I wish it had been recommended to me at the get-go. We tried meds with terrible results, and wasted a lot of time.

Glad you joined us

[flinnigan]

I've had seizures since birth. My mom would describe how I would wake up shaking until she fed me and how "proud" she was that I slept so much "such an easy baby". I remember having absence seizures as young as 5, they felt very warm and relaxing not scary at all. Then around age 9 I shad reflex seizures they lasted until I put my self on the pill at age 18. Most likely hormones were the biggest trigger from age 9 til then. Then I was either on the pill, pregnant or nursing until the birth of my last child 10 years ago. I started then with simple partials then moved onto complex 2 years ago. I've nevr had a tonic clonic. I only know all this now because I can piece it all together with the things I have learned in the last year and a half. While I went the pharmaceutical route then to surgery I don't know if I could put my child through that without trying all the nutritional options first. I'm now concerned about my youngest daughter and have started changes in her diet. Robin is a wealth of information for you. Enjoy your time here and don't be afraid. I'll place Evan in my prayers.

[Bernard]

Hi momofevan, welcome to the forum.

... how common is it for someone to have partial seizures and then start having generalized seizures??? what are his chances of having gran mals...

I'm not sure that there has even been a study to quantify the possibility, but I would have to assume (and you know that that means ...) that the risk is greater if the seizures are not brought under control.

... this is all so new to me and i have been worrying so much...i have read through some of the posts on this forum and have noticed there have been people who have died from this...and even more scarey thought..

If it makes you feel any better, there are plenty of members here who were diagnosed as infants, had literally hundreds of seizures throughout their lifetime, and are living normal lives.

[alivenwell]

Like your son, I was diagnosed with epilepsy at a very young age. In my case, I was unable to breath and the lack of oxygen caused epilepsy. I started out with simple partials, progressed to complex partials and maybe one or two grand mals max. Ironically, in spite of the horrendous background, I now have complete control of epilepsy. I'd suggest that you treat your son as normal as possible at home. And, in spite of the epilepsy, I acquired several college degrees, multiple certifications and a successful career.