New to Forum-5 yr old son just diagnosed

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

B

bigdhornfan

New
Messages
3
Reaction score
0
Points
0
Hello Everyone,
My 5 yr old son was just diagnosed 2 days ago with Epilepsy after suffering a seizure at school on Wednesday. It's a welcome relief to see such a large support community. I look forward to chatting with everyone and learning about this new adventure my son and wife and I are now on.
 
Hi bighornfan,

Welcome to CWE! I'm so sorry to hear that your son was diagnosed with epilepsy. I was 10 when I first started to have seizures (55 now). I will tell you that one of the best things to do is to keep track of your sons seizures get a calendar and write down what time your sons seizure happens and the type of seizure he has by doing this his Dr. may be able to see a pattern as to what time of day or night or what days of the month he will have seizures.

One thing that is very helpful for kids is the ketogenic diet which is a diet high in fat and protein but low in carbs and starch foods. The diet builds up ketones in a persons body which in turn reduces and in some cases stops seizures.

I have found seeing an Epileptologist which is a Dr. that specializes in epilepsy was the best thing I ever did because these Drs. know much more about epilepsy, can find the cause of the epilepsy and have a person on the least amount of meds.

If I may ask do you know what type of seizure your son has? I have absence also called petit mal seizures along with complex partial seizures. When I have an absence seizure I will just stare for a few seconds but I will continue talking to a person I just don't remember anything the seizure last about 30 seconds at the most. When I have a complex partial seizure I will start to see colors flashing back and forth in my eyes and I'm still conscious then I blank out and start smacking my lips and sometimes I will wander around and when I come out of the seizure I will be in a different room. This seizure last at the most 2 min. I used to get bad headache and want to sleep for about 2-3 hrs. after a seizure but I had surgery to reduce my seizures and now I have fewer seizures and I don't get headaches or feel tired after the seizure.

One thing that can also trigger seizures for some people is nutra sweet (aspartame) because it causes electrical activity in the brain which can trigger seizures for some people. I also found out I was photosensitive which means that certain color lights or flashing strobe lights would trigger seizures for me. Flourscent green is the color that bothered me the most. Keep your eyes open for thing like this especially if your son likes to play video games.

Everyone here has been a great help to me and they are wonderful friends who have taught me a lot. I wish you and your son the best of luck and May God Bless You & Your Family.

Sue
 
It started with febrile seizures when he was 2 and 3 years of age. And now that we know what they are, we are pretty sure he's had absence seizures for about 6-8 months. Until he had his full general seizure on Wednesday, we didn't know anything about the absence seizures but looking back on him, it explains a lot. He would appear to "zone out" for a few seconds, come to and tell us that he "fell by himself."

When he had the seizure at school, I went and picked him up and he seemed to be ok, but later that evening he had another at the dinner table so we ended up going to the ER. While waiting in the ER for a Cat Scan, he had 2 more. So he was admitted and given some anti seizure medicine. The next morning, that had worn off and he had one more seizure. After that, he had an EEG and an MRI. MRI was normal but the EEG showed signs of epilepsy. Neurologist has started him on Depakote and so far so good. No seizures since that last one Thursday morning. We go back for another EEG in 6-8 weeks.
 
Hi bighornfan,

I took Depakote for my absence seizures and it worked great the only thing you have to watch out for it weight gain or loss this drug can do that to some people. I lost 70 lbs. in 4 months while on the drug I would eat all my meals but the drug would burn off the calories very fast for me. Also I had to watch the liver and the blood platelet level. If you notice your son has a lot of bruises on him for no reason this is a sign that his blood platelet level is low and just like with many seizure meds you have to watch the liver.

You may see a pattern in your sons absence seizures stress and lack of sleep are the 2 main things that can trigger a seizure and I would often have absence seizures when I got sick with a virus or cold and was taking over the counter meds.

Absence seizures happen more frequently but the seizure doesn't last that long and it isn't that bad like you mentioned you just zone out for a few seconds. Ask your son if he starts to get a nervous feeling in his stomach or sees any colors in his eyes before the absence seizure starts if he does tell him to tighten up the muscles in his body and make his hands into tight fists for a few seconds and if he does this fast enough it will stop the seizure. When a person sees colors in there eyes or smells an odd smell this is known as a simple partial seizure also called an aura seizure which often leads into a absence or complex partial seizure.

Don't be surprised if your son feels very tired, has a headache or acts confused after a seizure this is all part of it because when a person comes out of an absence seizure it takes them a few seconds to remember what was going on before the seizure happened. I hope the Depakote will control your sons seizures like it did for me until my body got so used to it I had to go off the med but I was on it for over 20 yrs. if not longer.

Wishing You and Your Family only the Best and May God Bless All of You!

Sue
 
Hi BDH, welcome to CWE. :hello:

Sorry to hear about BDH Jr., but glad the Depakote seems to be working for him. Has it stopped the absence seizures as well?
 
Bernard said:
Hi BDH, welcome to CWE. :hello:



Sorry to hear about BDH Jr., but glad the Depakote seems to be working for him. Has it stopped the absence seizures as well?
Click to expand...



So far it has. And we are keeping a close eye on the signs for jaundice and bruising.

One effect of the depakote we hope subsides is the roller coaster of hyperactivity followed by tiredness. Hope he smooths out and adjusts well.
 
Well, everyone reacts to meds differently, and there is usually an adjustment period when starting new meds, so it might take a couple of weeks before he finds some stability in how the med is affecting him.

I don't know if your doctor explained it to you, but AEDs (including Depakote) don't work like aspirins or other drugs where you take a dose and it starts working 10-15 minutes later and lasts for a few hours. It's important to maintain a regular schedule with AEDs as they generally metabolize in the liver (Keppra and derivatives metabolize in the kidneys) and enter the bloodstream. To maintain a therapeutic dose, you have to maintain a blood syrum level of the drug within the therapeutic range. So missing (or doubling) a dose will cause dips (or spikes) in the blood syrum levels and that can put you at risk for seizures (or strong side effect reactions).
 
Hi BigDHF, welcome to CWE! Make yourself at home. :)
 
You must log in or register to reply here.
Back
Top Bottom