August 29, 2007

Epilepsy Team at NYU

Yesterday Evan's case was presented to the Epilepsy Team at NYU and, not surprisingly, they recommended surgery. So we have two things on our task list:

1) MEG scan, Sept. 17
2) Meet with neurosurgeon, Dr. Weiner, Oct. 22

After that, if we want to have the surgery at NYU, I guess we could pick a date. Crazy! So it looks like the soonest Evan would have surgery is November. Again, crazy! I guess this is where things start to heat up.

August 28, 2007

I Want a New Drug

Now that we weaned Evan off the drug that was making him aggressive we are starting a new one. I always hate this process because you just never know what side effects he'll have with the next drug, and they all have a laundry list of horrible possible side effects. Today we introduced Topamax and, on paper, it doesn't look better than any of the others:

In children, the more common side effects are abnormal gait, aggressiveness, behavior problems, confusion, constipation, difficulty concentrating, difficulty with memory, difficulty sleeping, dizziness, drowsiness, fatigue, increased muscle movement, increased saliva, injury, loss of appetite, loss of coordination, nausea, nervousness, nosebleed, pneumonia, rash, speech problems, urinary incontinence, viral infection, and weight loss.

He had his first dose and was pretty out-of-it and sleep today -- par for the course with the beginning of any anti-epileptic drug, so we should know what we're really dealing with in a couple weeks as he gets up to a heftier dose.

August 26, 2007

(Pre) Low Glycemic Index Diet

We are waiting to hear back from the dietician in Boston with Evan's personalized diet plan before we start him on the low glycemic index diet. This is basically a modification of the Atkins diet: no sugar, no carbs, high fat, high protein.

In the mean time, we have been introducing some of the foods to try to get him used to the dietary changes. Some things will be easy, like giving him a lot of cheese and bacon because he already likes those things. Pre-packaged items are pretty much out and he can't have artificial sweeteners. We have two approved natural sweeteners to use: Stevia and Blue Agave Syrup. Everything will have to be homemade and we are eagerly awaiting a delivery of homemade ketchup, coming soon in the mail from Grandma Mabel! She has made her neighbors do a blind taste test and everyone says her's tastes better than Heinz -- these are high marks, now we'll put it to the test with the true ketchup connoisseurs.

We have tried a few new recipes with mixed success: almond flour pancakes were a no go, but can hopefully be improved upon, fish sticks with an almond batter were delicious and everyone liked them except Evan and tonight we got rave reviews from both kids on a cinnamon bread made with almond flour. Rob and I were impressed with the cinnamon bread too. We are such food people that it is really hard to try convince Evan something tastes good when it really doesn't, and let's face it, you can't make legitimate flour out of nuts! We are continuing to experiment though and are slowly finding things that Evan can eat and actually taste good. It is definitely a challenge.

August 25, 2007

Don't Bite Strangers!

So I've noticed, in addition to reminding our kids about using good manners and treating people respectfully, there are several things we find ourselves saying now that we are parents: "hold my hand in the parking lot", "don't put that in your mouth" and even the dreaded "because I said so". But there are also a number of sentences I'd never have expected to utter:

"don't clean your feet with your toothbrush"
"don't forget to put your underwear on"
"don't put food in your underwear"
"don't bite your toenails"
"don't wipe your buggers on the wall and then cover them with scotch tape"
"don't sit on your sister's head"

and most recently:
"don't bite strangers"

Don't bite strangers? As if it's ok to bite people you know! Although realistically, I'd rather have my kids bite me than a stranger -- if they insist on biting. This winner of a phrase came out on our way home from Boston. We were at the airport and Evan ran up to a man we had joked with earlier and bit him. He actually BIT the man! So I said what any mother would say, "Evan, don't bite strangers!" Even as the words came out of my mouth it didn't sound quite right. Luckily, Evan only nibbled and the man just laughed about it, calling Evan a little puppy.

This biting incident was the wake up call we needed that Evan was experiencing increased aggression as a side effect to one of the meds he was on. The crazy thing is the way the aggression played out -- this is pure aggression and not anger based. He ran up to the man with a smile on his face and looked like he was going to hug him. We had also seen him hit and throw things but there are so many possible reasons for him to act out, it was hard to make the call. It could have been the disruption to his schedule with traveling, increased seizures, the lack of a nap, etc. When we got home we called his doctor and began weaning him off of one of the drugs and saw a huge improvement in just a week. These drugs are scary things.

August 18, 2007


We are back from a great trip to Boston and feeling a little overwhelmed with life at the moment. We are fortunate to have family and friends in Boston and had a very nice stay with my Aunt Heidi and Uncle Lorne and got to catch up with my cousin, Robert, as well. We tried to keep the kids sane as best we could, and they loved going up and down all the stairs in the house, playing in the pool and petting the neighbor's dog. We also had lunch with our friend, Kristin after the appointment with Dr. Eskandar on Monday. Another friend, Helene, was visiting her family on Cape Cod and volunteered to entertain Aria on Tuesday while we met with Dr. Thiele -- I can't thank Helene enough for this because we ended up being in Dr. Thiele's office for 4 hours and it would have been really rough with both kids.

As for what we learned, we are still sorting everything out. Both doctors were very impressive which doesn't help to make a decision easier, but it's a nice "problem" to be choosing between two such impressive teams. The neurosurgeon, Dr. Eskandar, was very down-to-earth and talked about the surgery process at Boston which is a little less aggressive than NYU's. Dr. Thiele sat with us for a long time and really impressed us. She is so passionate and knowledgeable about epilepsy and TSC and shares information freely. While we were in the office Evan had about 5 seizures so she got to see first-hand how his seizures develop. She also had us meet with her dietician to start Evan on a Low Glycemic Index Diet (think Atkins or South Beach) which is a little less restrictive than the Ketogenic Diet.

We have to send the dietician a few days of logged food intake and have some baseline blood work done and then we'll start Evan on it. It won't be fun, but with the number of seizures Evan has every day, it shouldn't take long to know if the diet is having any positive effects. Now we just need to figure out how to make sugar-free ketchup, chicken nuggets with almond flour batter and french fries out of cauliflower!

August 10, 2007

Look out Boston!

Look out Boston, here we come! We fly to Boston tomorrow and will stay with my Aunt & Uncle for a few days while we meet with Dr. Thiele (neurologist) and Dr. Eskandar (neurosurgeon) for additional opinions. This may be the last information gathering appointment for us before we choose a doctor and hospital for surgery. My hope is that after meeting with this team of doctors we will have all the information we need to make our decision. We are leaning strongly toward NYU, but it would not be impossible to sway our way of thinking. We are going to Boston with open minds and are looking forward to meeting with the doctors there.

August 07, 2007

$5 million in funding for TSC Research?

Early last Sunday morning, the U.S. House of Representatives approved its version of the Department of Defense (DoD) Appropriations Act, which includes $5 million for the Tuberous Sclerosis Complex Research Program (TSCRP) in the Congressionally Directed Medical Research Program.

The Senate has taken no action on its version of the DoD bill, but it is expected to be reviewed in September. Hopefully they will vote to support an appropriation of $5 million for TSC Research in the Senate version of the DoD Appropriations bill, matching the level approved by the House of Representatives.

There are a few hurdles along the way to Presidential approval, but last year the request for funding didn't make it this far so I'll take that as a good sign.