May 31, 2006

Rob's Parents

I know it's been a while since I posted anything--it's been really crazy in our house lately. Rob has a photo shoot for three weeks and his mom and Bill came up to watch the kids for two weeks before they go to Ethiopia with Becky and her family to finalize their adoption of three kids. I guess the entire family is pretty hectic right now!

It has been so helpful having Betty and Bill here and has made things so much easier on us. Poor Betty has been watching sick kids almost the whole time, and we've run the gamut---fevers, vomiting, stitches and a sinus infection! I don't know how we would have managed all the illnesses if they hadn't been here.

I know the kids are wearing them out (they wear us out too) and we are just so grateful for all the help. Having them here reminds how fortunate we are.

May 21, 2006

Seizures or no are kids!

We had a busy day yesterday, with the TS Clinic all morning, and since we're not the sort of family to slow down and take it easy, we spent the evening in the ER with Evan and a split chin that required three stitches. He slipped and smacked his chin on the side of the bathtub, so we rushed off to an ER full of parents with small children (by this I mean boys) with minor head wounds. Ironically, all the parents looked exhausted and had blood-stained shoulders while the kids ran around with lots of energy and checked out the vending machine offerings. The next day Evan proudly displayed his stitches to anyone who asked to see them while declaring "I'm tough!"

Tuberous Sclerosis Clinic

We took Evan to a Tuberous Sclerosis Clinic on Saturday where we met with several doctors for about 2 1/2 hours. They take a multi-disciplinary approach to managing TS and it was interesting to talk to experts in different medical specialities.

Evan still doesn't have a concrete diagnosis of Tuberous Sclerosis, and it will require more testing to come to a firm diagnosis. The tests will either confirm that he has it or leave us all wondering if it's TS (which is the most likely diagnosis) or if (although rare) he had multiple brain malformations in utero.

We have begun the process of switching Evan off Keppra and onto Lamictal. The seizures didn't stop as he maxed out on the drug, so it is clearly failing to control his seizures. This will be the third drug we are trying and statistically speaking, there is only about a 5% chance it will work, so I wouldn't take those odds to Vegas, but it's the best we've got for the time being. At least there is a chance it'll work, and that's better than where we are with Keppra.

May 16, 2006

Seizures, Seizures, Seizures

We have upped the Keppra for the last time and are waiting to see how Evan does. He was starting to have up to a dozen seizures a day and he has gone one day without one so we'll see what happens. It's not the best commentary to be hopeful after one day of no seizures, but that's where we are!

Dr. Conry

We waited three months to see Dr. Conry so we kept our appointment with her even though we have had a lot of neurologists weigh in on Evan's case already. She does a lot of work with the Vagas Nerve Stimulator (like a pacemaker) so we wanted to talk to her to see if she thought this was an option for Evan. She said he is not a candidate for the VNS but agrees that he may be a candidate for brain surgery--more tests will reveal that. She also said this is not something we need to rush into but we could likely be making that decision when he's 4 years old.

May 03, 2006

Keppra Might Not Be the Answer

Just less than a month ago I posted that Keppra might be working to control Evan's seizures after he went almost a week without a seizure. Now we're think the medication is failing to control the seizures. He's having seizures almost every day and also having more clusters of seizures. The clusters are usually 3-7 seizures about 15 min. apart, and he's having a cluster every 2-3 days or so.

We have been increasing the Keppra every week and can only increase it two more times before we max out on the amount Evan can have for his weight. I'm not typically a pessimistic person, but I'm not very hopeful that we're going to see a remarkable improvement on the medication in the next two weeks. Dr. Pearl talked about switching Evan to Lamictal if the Keppra doesn't work, so we may be trying that later this month.


Last week we took Evan to pick up his orthotic braces--another miserable experience! He really doesn't like being messed with, as I have mentioned, and that's all these people want to do! The poor thing cried and screamed as we put the braces on while attempting to bribe him with chocolate covered raisins--the therapy for that will start years from now, so we're not worrying about it for the time being!

In the end, we got them on him and he has to wear them every day for gradually increasing intervals until he is able to wear them for 8-10 hours a day. The hope is that they will improve the way he's walking and he's been much more willing to put them on since the initial introduction to them. I think having us do it at home made a huge difference for him.

As for how they look, I hate them. They are a reminder to me that something is wrong with Evan and I really don't like that fact. He has one for each foot--the right one comes up to about his ankle and the left one to mid-calf. They try to make them as cute as they can--Evan chose dinosaurs to embellish the velcro straps--but they are what they are.