Saturday, October 3, 2009

Living With Seizures conference

We just got home from a 4 hour drive to our conference that the Epilepsy Foundation of Minnesota put on. It was very informative and while I can't say I really learned anything new necessarily it was still great to go and meet other families affected by epilepsy.

First we sat down before the morning session and the couple sitting at our table asked who was affected by epilepsy in our family. We told them our son and talked for a bit and then I asked them the same question and it was the woman who was affected. She talked about losing her driver's license because of having seizures while driving and not being able to work. She started crying and I knew it was going to be an emotional day.

The first session talked about all of the different medications and they rated them according to how they affect learning, green light, yellow light, red light. Of course Topamax is a red light drug meaning it affects cognition, speech, processing speed, etc... This is exactly why we're getting him off this drug!

The second session talked about success in school and then there was question an answer with a panel of both doctors and people whose children had epilepsy.

During lunch the speakers were a couple whose daughter died a year ago in August very unexpectedly from Epilepsy. There story was very inspiring but hard not being able to imagine how they must still be feeling.

The afternoon sessions talked some more about school and preparing your child for the future. I talked to one mom who asked if we'd tried the Ketogenic diet, one mom who talked about behavior issues, and a woman from the MN Dep't of Education about laws regarding special ed. We received a ton of handouts, videos, etc...

All in all it was a really good day and nice to meet other people who have children affected by epilepsy or who are affected themselves. At the same time it was hard to hear about so many children experiencing side effects to medication and having no other option but to be on medication. You always outweigh the benefit vs. the risk and for some children those side effects are better than multiple, daily seizures.

I'm very interested in the future of medication options and other treatment for Epilepsy. We know the likelyhood of Emeric outgrowing his seizures is very slim so the key would be minimizing medications and then minimizing the side effects of those medications.

I think I've said before but once you've failed 2-3 seizure drugs your chances of ever having full seizure control are less than 5%! Those are obviously not great odds and Emeric too has failed 3 so while it's hard to remain optimistic I can at least hope for minimal side effects with the meds he does need to be on.

I have a ton of links to find different information on Epilepsy and I'd encourage you to take a look if you haven't because while you may not be affected directly or indirectly by someone with Epilepsy it helps us all to learn because as we learned today... Knowledge is Power! :)

4 comments:

Jess(ica) said...

Wow... sounds like a great (yet emotional) day... it will be neat to see how medical advancements can help people and kids like Emeric control their seizures and yet not have to experience such great side effects. Thanks for posting how your day was!

ben and erin said...

i admire your vast knowledge of epilepsy and seizures since you didn't learn anything new! you probably could've been a guest speaker! :-)

since you're taking emeric off of topamax what are you going to try now? yeah, i read stats somewhere on the seizure control after failing meds. i hope you can find one that helps without a lot of side effects.

you are such a good mom to equip yourself with all this knowledge to help your son. i'm gonna have to check out some of your links tomorrow. cuz if i start tonight i probably won't stop!

LS said...

I'm so sorry for all you have suffered with watching your son in pain and not getting much relief or progress with the medicines. You are truly a warrior and know much more about hardship than I do. I pray that God would comfort you in a huge way this week and would wrap you up in His arms. I would love to see Him heal Emeric completely if that is His will. But if not, I pray that He would be glorified greatly through this condition and through your growth through it.

You are such a good mom and hard worker!

Nicole said...

Erin,
He is still on the Lamictal which he's been on for nearly 2 years(it's just never given him full control) and then we started him on Felbatol a few weeks ago. So right now he's on Lamictal, Topamax, and Felbatol. Once the Felbatol gets up high enough in his blood than we'll decrease the Topamax.

What stinks is that the Topamax has been very good in controlling the seizures but the side effects at this point outweigh the benefits for us.

BTW, I hope I didn't sound prideful in saying I didn't learn anything new. The conference was mostly in educating people how to live with Epilepsy so in that regard yes, I learned something new just in listening to others talk. Just nothing new in terms of actually having Epilepsy,seizure types, etc.

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