update on evan (haven't been on in a while)

[momofevan]

not sure who is all familiar with evan's story..but to make it short he was diagnosed with epilepsy in december 2009(he is 2 years old)..we are now on 5 meds. zonegran, klonopin, keppra, lamictal, and the most recent dilantin..the dilantin is only suppose to be used temprarily until we get his lamictal tapered up. He has still been having seizures on a daily basis..although when they loaded him through i.v. with dilantin he had no seizures since friday until this evening.

We have also been urged to seriously consider the VNS..(vagus nerve stimulation)..anyone here have this done?? or thier child have this done??

they do want us to take him back in to get a spinal tap done.they want to test something called a glucose transporter to see if his brain is getting enough sugar..

[epileric]

Personally I'd be reluctant to put a VNS in someone so young but that's just my opinion.

I'd recommend checking out Birdbombs website specifically about VNS. You might get more experiences & better informed opinions than mine.

http://www.vnsmessageboard.com/

[Nakamova]

Wow, 5 meds is an awful lot for a two-year old. It sounds like the docs are throwing everything at Evan to see what sticks. I agree with Eric, VNS seems a pretty drastic step for a little kid, but perhaps there are other success stories out there.

I hope the glucose test is helpful, and indicates a positive direction for treatment. When they do the spinal tap, Evan will likely have a headache for a few days afterwards as a side effect, so be prepared.

[dennis100]

Your 2 year old child was diagnosed with E 6 months ago. He is already on 5 meds and his doctor wants you to consider the VNS ?

Time to find another doctor ASAP

[momofevan]

actually the doctor that my son sees is top in the nation for VNS..she is a pediatric epileptologist and has had sucess with VNS in children as young as 18 months. My son has had multiple seizures per day. She has tested for every other possible reason>> she has done a very thourough gentetic blood test..that tested over 3,000 nuclei in his DNA for conditions..he has had an MRI he has had a CT scan. and she is now going to do a spinal tap (he will be sedated for this)

WHat exactly would you suggest dennis??? I do believe she is trying everything she can here. I just wanted to hear people's stopries if they have had this done or if their child has had this done...It is frustrating enough for me to see my son go through everything he has been going through..i really don't want to hear people's "judgments". What i wanted to hear is people's stories or experience with VNS!!!!

EDIT: i want to add that my son started having seizures in NOV of 2009.so we are going on almost 8 months of seizures here!!!

ALSO want to add that they also checked to see if he was having B6 dependent seizures. They loaded him through his IV with B6 and checked to see if they seen any changes..and there were none..so he is not B6 dependent either!

[epileric]

When I was young the doctors had trouble controlling my seizures. Even now they're really still not controlled. The problem is that they just put me on one anti-epileptic drug, then added another & another. That still didn't control my seizures but as a result I remember very little of my life in elementary or high school. I spent the time feeling like a zombie. everyone else noticed too, people thought I was high when I wasn't. I also became very depressed since I was a straight F student & didn't think I could ever be productive in life.

It wasn't until I was in my mid-20s that a neurologist just looked at how many drugs I was taking & took me off of the 2 others. Since they never really controlled my seizures my seizures didn't get any worse. Today I may have numerous seizures but I find I function in society more with seizures than I do being doped up.

I Honestly wish that as a child more options like diet or NFB, had been explored rather than just pouring on the meds. I really do wish the best for Evan and I do hope you do (or have) explore other options first.

[epileric]

actually the doctor that my son sees is top in the nation for VNS..she is a pediatric epileptologist and has had sucess with VNS in children as young as 18 months. VNS!!!!

Something I've seen is that a lot of people say they've had success with the VNS when the success was only for 6 months or so. However I know there are many people whose seizures have returned after that time. Some do work permanently but as for statistics.

Just a suggestion but you might want to ask how long after the operation were the clients monitored that she defined it as a success. Also to say they've had success can mean 1 out of 100 treatments. Again statistics will be more specific.

Also, according to the sage journals the minimum age for a VNS 12 yrs old.

http://pvs.sagepub.com/cgi/content/abstract/18/4/323

[Cint]

Something I've seen is that a lot of people say they've had success with the VNS when the success was only for 6 months or so. However I know there are many people whose seizures have returned after that time. Some do work permanently but as for statistics.

Just a suggestion but you might want to ask how long after the operation were the clients monitored that she defined it as a success. Also to say they've had success can mean 1 out of 100 treatments. Again statistics will be more specific.

Also, according to the sage journals the minimum age for a VNS 12 yrs old.

http://pvs.sagepub.com/cgi/content/abstract/18/4/323

Epileric, IMO, they aren't saying the VNS will totally eliminate seizures, just reduce them. I had the VNS surgery after an unsuccessful LTL that made the seizures worse and was only seizures free for 14 months. For me, it has reduced the seizures and I can stop them usually. I've had it since 1997 and am still monitored.

[epileric]

Epileric, IMO, they aren't saying the VNS will totally eliminate seizures, just reduce them. I had the VNS surgery after an unsuccessful LTL that made the seizures worse and was only seizures free for 14 months. For me, it has reduced the seizures and I can stop them usually. I've had it since 1997 and am still monitored.

That's my point, define "success" .

[Cint]

My point, too. What's successful for some, isn't for all. Brain surgery works for some, didn't work for me, nor did 11 drugs, so what is left? Success for me is less medication, less seizures, NO tonic clonic seizures, and better quality of life.

And don't numbers (statistics) just get in the way when looking for the best treatment for your child? It all depends on which institution, website, or who you speak with when determining what is the best treatment.

[epileric]

My point, too. What's successful for some, isn't for all. Brain surgery works for some, didn't work for me, nor did 11 drugs, so what is left? Success for me is less medication, less seizures, NO tonic clonic seizures, and better quality of life.

And don't numbers (statistics) just get in the way when looking for the best treatment for your child? It all depends on which institution, website, or who you speak with when determining what is the best treatment.

I think that even though people can manipulate numbers, especially when percentages are used, I do feel that they can clarify probability of success. It's like the time I asked a neurologist about surgery after finding out where in the brain my seizures originated. He didn't tell me not to but knowing that very few people had this operation before to confirm how likely to be successful it might be made a big difference in my decision.

[Nakamova]

Not saying that this the case with the particular pediatric neurologist mentioned above, but it's worth noting that studies have shown that specialists often recommend... what they specialize in.

[epileric]

Not saying that this the case with the particular pediatric neurologist mentioned above, but it's worth noting that studies have shown that specialists often recommend... what they specialize in.

[momofevan]

epileric, you said you have had the surgery. has it improved your quality of life?? i do understand that the VNS does not stop seizures all together, but can improve them. They don't last as long or does the recovery period afterwards. Trust me.. I am sceptical of this. Even though it is a non-invasive surgery there is still risks. If you could go back in time, would you opt NOT to get the VNS??

[epileric]

epileric, you said you have had the surgery. has it improved your quality of life??

I had asked about the surgery but decided not to go for it because so few people had had it previous to me. I haven't had a VNS either. Sorry, I didn't mean to imply I had them.

[Cint]

Not saying that this the case with the particular pediatric neurologist mentioned above, but it's worth noting that studies have shown that specialists often recommend... what they specialize in.

Why else would they be called a "specialist"?
And they know their "stuff" that they recommend much better than anyone.

That is why I see an "epileptologist" instead of a regular "neurologist". Some neurologists don't keep up with the latest treatments when it comes to epilepsy, especially pediatric neurology.

[lindinig]

Have you considered the different diets that are mentioned on this board? It's possible he's allergic to something like milk, corn, or gluten that is manifesting itself in seizures. Have you looked at neurofeedback training? These are just suggestions as I've seen what medicine can do to my son and he's only on 1. I can't imagine loading him up on 5.

[momofevan]

i can honestly say that my son doe not seem to be "doped" up..he has tons of energy and from what i can see has had no side effects from the drugs..only thing is..he is still having seizures..his levels always come back normal as well..just wanted to add that.

no i have not tried any special diets with him yet..as he is only 2..trying to get him to eat on a "normal" diet is sometimes difficult..the diet would be his "medicine" tell me exactly how i can safely do that when he is a toddler. what if he decides he just doesn't want to eat anything that day?? trust me my doctor and i have gone over the special diets and we all feel at his age that right now is not the best option!

[Cint]

. Have you looked at neurofeedback training? These are just suggestions as I've seen what medicine can do to my son and he's only on 1. I can't imagine loading him up on 5.

Here is a site on Neurofeedback for epilepsy. Just like medications, VNS, and surgery, it isn't a cure all and doesn't work for all:

http://chronicillness.suite101.com/a...her_conditions