first I like to say I am very glad to have found this site .

we found out back in 2006 that my son was having seizures ,he has been on depakote since then.and then for a year now he has also been taken zonisamide and then in october of 2008 zarontin was added to the list of med's to try and get them under control.

he has had two mri have they have found nothing there and a lot of blood work with no answers.we are still wait on one of them to come back that was done last month.

the seizures last from 6 seconds to 40 seconds at a time ,and you cant always tell when he is going to have one and he doesn't no when they care coming or cant rember what happen or why you are asking him if he is ok.

his seizures are he will stare and sometimes eyes roll back ,other times his head will dropp.he has walked into things.or looks like he is going to fall over.he will keep doing what every he was doing at the time and has no idea of what is going on.

they seem to be getting worse and not better.

I feel like we are missing something.and have told the doctor that he is still seizering with his med's and she said they should work.

I do feel that they happen more when we go out places and when he leaves his class to go to another and then back to his class.he is so fare being in school.and one doctor said he is also bipolar he is not on med's for that.

anyone have anything they can tell me to help my sweet little boy oh and we have always thou he was adhd and was on med's for that before all this but not since we found out about the seizures.

thank you.

Hi nstevens,

Welcome to the forum! I'm sorry to hear that your son has begun to have seizures (sz.) I've had them for 37 yrs. now. The type of sz. you are describing sounds like a possible absence sz. also knowns as a petit mal sz. or it could be a complex partial sz. I've had both of these sz. for many yrs. My first advice to you is to have your son see an Epileptologist (Dr. specializing in Epilepsy) and go to an Epilepsy Center which are usually at University Hospitals. I've found seeing many different neurologist not a big help compared to an Epileptologist. If I may ask how old is your son? If he's going through his early teens the seizures could get worse do to hormones changing in his body. Keep your son away from grapefruit and grapefruit juice while he's taking zonisamide because the enzymes in the fruit can mess up the drug. Also keep him away from anything with nutra sweet (aspartame) in it. I found out the hard way that nutra sweet causes more electrical activity in the brain and can lead to seizures. There have been a few cases reported stating that people who are ADHD can have seizures. Your sons Dr. needs to do an e.e.g. on him. I find it interesting how when you go out to eat or when your son changes classrooms that it bother him more. If the lights are brighter when he leaves the class it could be that he's photosensitive which means certain colors or bright lights will trigger seizures. I found out that amber, flourescent green, and bright white (like the sun shining on the snow) would trigger sz. for me. Keep your son away from video games with bright flashing lights and cell phones can also cause problems for many people because the frequency of the cell phone can lead to seizures. I use ham radio instead. What you need to do is to get a calendar and write down what time your son has any sz. along with a description of the sz. Take note if theres a low pressure with the weather or if your son is sick because these are things that can also trigger sz. You should also look into cutting him back on carbs and starch foods because these foods turn into sugar and can trigger sz. The ketogenic diet is what may help your son stop if not reduce his sz. Also try putting your son on virtamin B12 it has done wonders for me and many others to reduce and in some cases stop sz. Sue

thank you.we have had eeg done on him and it shows both sides of his brain.and the med's are not working.witch makes it so hard.and since this hole thing has started they seem to get worse and not better and have movied a few times to try and get the best medical help we can .we think and no there has to be a reason for this and want to know what it is that we are missing,the few things that have not been checked are his heart and a catscan.

we found out about the seizures back in 2006 and now he is 10 .one doctor told me he has more than one kind of seizure so it will be hard to find the right med's.the school keeps track of how may he has when he is there.

and I was also told that they thing that when he is having them that is unconscience.he doesn't know when he is going to have them and cant tell me how he feel's.
and just found out on friday that the insurance will not cover for him to get a helmet for his head.

Hi nstevens,
I'm sorry your insurance won't cover for a helmet. I began to have sz. at the age of 10 and I started having absence (petit mal) sz. where I would just stare and have a daydream look on my face. I had so many that it caused me to begin to have complex partial sz. also by the age of 12. When this happens I will get a nervous feeling in my stomach and see colors flashing back and forth in my eyes then I blank out. When I come out of each sz. I'm confused for a few seconds trying to remember what I was doing and I used to feel very tired but I had brain surgery twice to help reduce the sz. and now I don't get tired after a sz. and my sz. aren't as bad. To find the right meds (AED's) for you son you might want to have the Dr. do a DNA blood test on your son by doing this his Dr. will be able to find the best AED's with the least side effects for him. I had this test done to find I was drug resistant. I've been on at least 12 or more different AED's but not a single one has stopped my sz. only reduced them. I then started taking vitamin B12 and found it was the best thing I could have done. If you live in the U.S. you can call the Epilepsy Foundation to get info. for free at 1-800-332-1000 They have been a big help to me and sent me info. about sz. and AED's (seizure meds) . Also ask your son if he ever feels dizzy every now and then this can sometimes happen before a sz. Stress and lack of sleep are the 2 main things that can trigger sz. for many people. Since you are keeping a journal of your sons sz. you may see a pattern as to what time of day/night he will have more sz. or what days of the month. A lot of that can be hormone related. The main things that can cause epilepsy are the following: family genes
a bad scare
drug or alcohol abuse
a bad blow to the head
difficulty at birth or before birth
trauma
bright flashing lights
scar on the brain

Here's wishing you and your family the best of luck. May God Bless All of You!

Sue

nstevens,
I think i'd be asking the doc's if maybe you can try another med.There are so many new drugs they could be trying. My husband seems to have a seizure everytime he goes into a Lowe's Hardware store..we don't know if it's the lighting or what is causing it.
Karen