Evan Super Moss

We are in the hospital and Evan is hooked up the the Video EEG and enjoying the opportunity to watch all the shows we never let him watch at home. In the hospital, pretty much all rules are out the window!

We left early this morning and Evan had more tunnel vision, threw up twice on the ride up to NY and then slept most of the way to the city. We are really thinking the tunnel vision / vomiting is a toxic reaction to the medication increase, but there is still the issue of the seizures that caused us to increase his meds in the first place.

I snapped this photo with the camera on my phone as we were walking to the hospital and thought it was fitting...

Today (which has technically past) was pretty rough. Evan started having seizures this morning and they just kept coming and coming. They were Simple Partial seizures and we couldn't see any movement or twitching except for in one of them. He never lost consciousness and was able to tell us when they started and stopped and we tallied 19 seizures in break-neck speed. After the seizures stopped he moved onto several bouts of tunnel vision (possibly seizures or maybe a toxic reaction to medication) and vomiting.

So we are heading up to NYU Hospital tomorrow morning and Evan will be checked in for a Video EEG for a few days of monitoring. We are bringing Aria with us on this trip and it'll be nice to have her there with us -- we gave her the choice to come with us and she wanted to go. It might be hard for her to be at the hospital for that long but I think it's even harder to be at home waiting for information with an overactive imagination.

I'll try to post every day while we're in NY to keep everyone up-to-date. We leave the house in six hours so I guess I should head to bed!

Two days ago I posted on Facebook "Today we are celebrating -- Evan is 8 months seizure-free! Every day without a seizure I feel luckier than the day before."

Yesterday Evan complained of having tunnel vision that lasted about an hour.

Today Evan had a seizure.

Tomorrow I will feel luckier than today.

Vote for Seizure Tracker to win $100,000

We are thrilled to have been nominated for the American Express, iVillage & NBC Universal's "Shine A Light" spotlight award. This award is to recognize small businesses who are making a difference through innovation, customer service and community service. The winner will receive $100,000 in grant and marketing support.

We need votes to make it to the next round where judges will narrow the companies down to three finalists, followed by another round of public voting to determine the winner. This could mean a huge leap forward for our little company and will allow us to make several vital upgrades to the site as well as reach a broader audience that would find SeizureTracker.com helpful.

I am going to be promoting this and asking for votes repeatedly until September 13th and I can't apologize for spamming anyone because it really is for a good cause. So instead of apologizing I am appealing to everyone I can...

If you have ever asked us how we can afford to make SeizureTracker.com free...vote...the truth is we can't afford to fund this tool on our own indefinitely.

If you have ever told Rob or I that you admire us, find us inspiring or simply asked us how we manage everything...vote...we have big plans for the future of SeizureTracker.com and the support from this contest would be invaluable.

If you know anyone who has ever had a seizure (and I know you do) VOTE, VOTE, VOTE! SeizureTracker.com was created by a family dealing with epilepsy for the sole purpose of helping anyone living with epilepsy.

Please follow the directions on this link and vote today and forward this to your friends!

Vote Here for SeizureTracker.com

Thank you so much!

Wait and See

We are familiar with the process of wait and see and that's where we are again. After following up with two nephrologists to talk about the growing tumor in Evan's kidney they both had similar things to say.

Basically, the tumor is still small, even though it has tripled in size. With the longest dimension at 2.5 cm, they won't be concerned unless it reaches 4cm. At 4 cm the wall of the tumor becomes thinner and the chance of it rupturing increases. One of the doctors suggested avoiding putting Evan in Kung Fu, Kick Boxing or Gymnastics because an abdominal blow or pressure on a gymnastics bar could increase the chance of it rupturing. Obviously, an active 5-year-old will find himself in plenty of situations where an abdominal blow is possible and we aren't going to make him feel different or incapable of doing what his friends are doing but we'll have to be selective on what activities we sign him up for. Like many other things, it's a balancing act.

The next steps are more tests to see if there are any changes so we'll just wait and hope there is nothing to see.

Renal Ultrasound

Yesterday was not filled with good news. As anyone who deals with Tuberous Sclerosis (TSC) knows, you have to celebrate the times when things are going well and progress is being made because you just never know what's around the next corner or when when you'll walk into a brick wall.

We have known for three years that Evan had a small tumor on his left kidney. It was diagnosed as an angiomyolipoma (AML) which is usually benign and not uncommon for TSC patients to develop. It was the kidney involvement that confirmed a TSC diagnosis years ago. The AML was small and these tumors don't usually grow in young children so our plan was to monitor it and not worry too much, especially since Evan had three brain tumors that were causing much more concern at the time.

So yesterday we took Evan for a follow-up renal ultrasound and we approached the appointment with the the expectation that this would be a routine check-up and no real news or changes. Enter the brick wall...


Apparently the tumor has basically tripled in size, at least in length and is 2.3 cm at the longest measurement. This is clearly not good news but a growing benign tumor is a totally different issue that a growing malignant tumor and at this size it is still considered small. According to what I've read, in TSC patients, AMLs become a concern when they reach 4 cm because the wall of the tumor becomes thinner and weaker and the chance of rupture increases. When the tumors get to this size the consideration is embolization (basically tying off the tumor where it connects to an artery so it will stop growing) or for more advanced cases removing the tumor surgically. So the bottom line is that Evan is not in an emergency situation, but will need to have his kidneys monitored closely. We have an appointment with a pediactric nephrologist in a few weeks so we are eager to hear his suggestion for a game plan and possible outcomes.

At the moment we have more questions than answers but feel confident that the increase in size has been identified early and we're optimistic since the tumor is still small.

Evan was a champ through the appointment and delighted in showing the technician the temporary tattoo on his stomach!

Epilepsy Action in Australia contacted us about writing a story about our family and here is the link to it...

http://www.epilepsy.org.au/pdfs/360_June09_P6_7.pdf

They were interested in our family story and how it led to the creation of SeizureTracker.com. We already had people using the site in Australia but we're definitely seeing an increase now. I'm so glad we are slowly getting the site to people who will find it helpful!