age to explain seizure disorder to your child?

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my son is newly diagnosed with a seizure disorder still awaiting to have more tests done and DR appointments but his EEG was defiantly positive and he has been started on medication right away. Apparently he has them approx alot and we didn't notice a thing until one day in a DRs office for his asthma he stopped breathing, turned blue and coded on the DR.. If it wasn't for this happening last week, we wouldn't of known until he started to have grand mals I guess. He;'s currently having them in his sleep the DR said and complex absent ones where we may think or a teacher may think he's ignoring us? What age is appropriate to explain this condition to them? Only 5 y/o right now and just found out last night and given a medicine called trilepal alot of info at once and confused at the moment but worried about how to react and explain to him thank feeling helpless at the moment

Comments

Re: Re: So he's having GMs and he's

Submitted by wargrass on Fri, 2007-10-26 - 21:04

I have read a couple of your posts tonight and your son is having autonomic seizures. Maybe another type as well, but definitely autonomic. The breathing, the temperature, all autonomic. My daughter has autonomic seizures and was diagnosed with Panayiotopoulos Syndrome. She has the breathing, temp, vomiting and gagging, eye flitter, her pupils get huge, etc. She progresses from "not there" to full fledge tonic/clonic. We too have the Diastat and she turns a blue/grey color. Even a great neuro may not understand seizures with autonomic symptomology. PS is part of the family of Benign Occipital Childhood Epilepsy, as is Benign Rolandic Epilepsy. THere is a 3rd one that I can never remember. Google Benign Occipital Childhood Epilepsy and you will get good info. Email me at wargrass(at)yahoo.com and I will email you what I have on PS. I know how scared and frustrating it can be. Kelly

Re: age to explain seizure disorder to your child?

Submitted by GodivaGirl on Sun, 2007-10-28 - 11:09

Word of advice from me, a 33 year old who has been epileptic since I was 5. My parents kept my life pretty normal growing up. If I wanted to play sports, I did (my dad was just usually an assistant coach, or attended all the games). If I wanted to be in dance (unfortunately for my mom, that didn't last long), I did it. When it came to epilepsy they did tell me right away, but they didn't dwell on it. I still remember how they told me. Remember those commercials with eggs - This is your brain, this is your brain on crack... Well, my dad followed that, but he drew pictures for me. He drew a bunch of straight lines (for the most part, I was 5 - they looked good enough to me) & he drew them all in the same colours. For that picture he said "this is how everyone's brain works & how your's does most of the time". Then we drew a picture together with all kinds of wavy lines in all kinds of colours. He looked at that one & said...well... "When you keep getting headaches, that's what happens to your brain. Those straight line brainwaves, go all colorful & all over the place & you can't handle it. So until they stop going wavy, we can't talk to you for a bit, then as they straighten out, you get a headache. That's what doctors call seizures & that's why you gotta take this medicine that tastes so horrible." Then we drew a third picture with green lines & that looked crazy & he said "yup...if you don't take the medicine every day, you'll probably keep getting these wacky lines & you'll be too sick to be at school" so, suck it up & take this medicine kiddo! Keep it simple. Adults have to know all the technical stuff. I've know that since age 15, but at age 5 really all I needed to know was my brain went from being straight to wavy lines and when it was wavy that was a seizure. Heck, even at age 33 my explaination now to some people of what seizures are is "brain waves go out of whack, I drift off this planet for a minute or two, I bounce back as brain waves do, then I just get a killer headache, but it's all good." (that's absence seizures by the way!). Hope this helps you with a simple explanation for a 5 year old. Keep the technical stuff between you & the medical team. Keep a little kids life as normal as possible, they'll thank you later. Good Luck ~Erin/GG

Re: Re: age to explain seizure disorder to your child?

Submitted by helplessinMA on Sun, 2007-10-28 - 15:53

Hi Erin thats about what I understand right now myself lol also I've been telling my son that his brain mis fires sometimes but he don't' remember....and that is what his headaches are from.... He seems to understand that some... thank michelle