November 26, 2006

Bye-Bye Dilantin

Well, we weren't crazy about the possible side effects with Dilantin, but it looks like that won't be an issue for Evan--the Dilantin is really not working. We have seen no decrease in seizures--he's actually had more seizures than usual but he's also got a sinus infection so that's not a big surprise (Evan tends to have more seizures when he's sick). Last month he had about 55 seizures and in the 3 1/2 weeks he's been on Dilantin he's had about 75 seizures. Our thought is to pull the Dilantin. I sent an email to Dr. Pearl to make sure he agrees with that, but I expect that he will.

Although we weren't happy with the idea of Dilantin, we're even less happy with the next drug, Vigabatrin. I haven't written too much about this drug because I was really hoping we wouldn't be seriously considering it. But here we are with a kid that won't stop seizing and we're running out of good options so now we're onto the not so good ones.

Vigabatrin has been around for several years and has some good results for TSC patients with infantile spasms. Evan doesn't have infantile spasms, he has complex partial seizures, but there is some thought that this might be a good drug choice for him. Even though Vigabatrin has been around for a while, it is not FDA approved, probably because it has the horrible side effect of possible permanent loss of peripheral vision. We cannot get this medication in the U.S. and will have to mail order it from Canada or go to Tijuana to get it in person. If Vigabatrin works for Evan, Dr. Pearl has recommended not having him on it for more than a year to protect his vision--the soonest anyone has had vision impairment after going on Vigabatrin is 11 months. So if it works he may go on and off Vigabatrin and they will monitor his vision closely.

November 18, 2006

Back to Johns Hopkins

We met with Dr. Vining at Johns Hopkins again--we figured it made sense to talk to her after our Detroit trip. Whenever you make an appointment for a second (or third, or fourth, etc.) opinion with a doctor they always look at you and ask why you're there and this time Rob and I didn't sit there looking blankly at each other...

We wanted to get an opinion on Evan's case from a different hospital and hear what Dr. Vining's next course of action would be if he were her patient and we wanted to hear her position on the next drug option, the Vagus Nerve Stimulator (VNS), the Ketogenic Diet and Brain Surgery.

That's pretty much every medical option on the table for Evan right now. Dr. Vining doesn't think the VNS is a good option for Evan and doesn't particularly like any of the drug options available after having gone through four without much success. I joked that at this point Rob and I are equally qualified as any neurologist to choose the next drug and she agreed--it's pretty much a crap shoot.

Johns Hopkins has a lot invested in the Ketogenic Diet and although we've been resistant to trying such a radical treatment, it's better than surgery. We already knew Dr. Vining would recommend this and she didn't disappoint our expectations. It looks like we're going to be on their schedule to begin the diet in February but don't have a set date yet. Basically, Evan will be admitted to the hospital for 4 days where they will begin the diet and put him into ketosis. We will be trained on how to administer the diet too. This is basically the Atkins on steroids--no sugar, no starch, heavy protein and all food items must be measured to make sure Evan eats exactly the correct amount per day. The portions are small so he won't like it and chocolate will no longer be a part of his daily routine--I don't know how we'll reward him for using the potty!!

So that brings me to surgery--none of the doctors are thrilled about surgery but all admit we may likely end up there. Everyone is hoping something will work that will keep us out of the offices of Neurosurgeons. That's pretty much the gist of the appointment--in cliff notes.

November 10, 2006


GoodSearch logo

So I don't know how many people have heard of this, but I just came across it this week and I thought I'd share what I found out. Yahoo has powered an Internet search site called that donates money to designated charities or schools every time you do an online search through them...


  • The search results are the same as if you use Yahoo and approximately one cent is donated to the designated charity for each search. I hope you'll give it a try and support the cause that you care most about, and if you don't have a charity in mind, please consider the Tuberous Sclerosis Alliance. They've raised almost $300 this year already, which may not sound like much, but every little bit helps!

    The more people who use this site, the more money will go to those in need. So please spread the word to your friends and family.

    Epilepsy Symposium

    Yesterday I went to an Epilepsy Symposium hosted by Children's Hospital in D.C. Unfortunately Rob had a shoot this week so he wasn't able to attend. It was pretty incredible---an entire day full of lectures and events. The day was informative, emotional and overwhelming to say the least.

    The morning was filled with lectures from doctors on topics covering the basics of epilepsy and seizures, medications and side effects, alternative drugs and therapies, learning disorders, behavioral disorders and psychological disorders. So it was a pretty intense morning with a lot of not so uplifting information. I found myself fighting back tears at many times.

    When we broke for lunch there was a panel of teenagers with epilepsy who talked about their experiences. They were so well-composed and thoughtful answers and I felt very emotional as they spoke. Many of them have learning disabilities and some have had seizures in school. Some have told their friends they have epilepsy and others felt it was to private to share with classmates. What really struck me was how positive all the kids were. They all just want to be treated like everyone else and want to be encouraged to follow their dreams. I really admire all of them.

    Most of the sessions after lunch were topics surrounding advocacy: how to deal with the school system, utilizing the Epilepsy Foundation, helping teens with epilepsy transition into adulthood and parent discussion panels.

    It was quite an event. I met a lot of doctors and parents and even bumped into a few people I already knew, but afterward I was exhausted!

    November 08, 2006

    Guarded Optimism

    I know it's been a while since I posted anything and it's only because I'm tired. We haven't had any down time since before we went to Detroit and life has just been crazy!

    We started Evan on Dilantin and it seems to have reduced the seizures. Evan is now having on average 1-2 seizures a day instead of 4-5. So that's improvement at least. There have been a couple days with no seizures and he had 8 one day. So, the road continues to be rocky but we are trying to remain optimistic.