Happy Thanksgiving!

As we reflect on the many things we are thankful for, I can't help but be reminded of what November represents for our family. November is the month Evan was born, National Epilepsy Awareness Month, the month Evan had brain surgery, the launch of www.SeizureTracker.com and of course Thanksgiving.

We've certainly packed a lot into this month and one of the things we are always most thankful for is the success of Evan's surgery. I don’t know if we’ll ever stop watching for seizures, but we’ve stopped expecting them. Two years ago we spent Thanksgiving in the hospital. On that Thanksgiving day Evan took his first wobbly steps after three weeks of being confined to a bed and having undergone three surgeries. He rode in a wagon to the hospital play room where we celebrated the holiday (and Evan's surgery) with the other families on the floor. There was turkey with all the trimmings and although it was unlike any Thanksgiving we'd ever celebrated, it seemed fitting to be there with this cobbled together group of people from all backgrounds, brought together by different circumstances, to spend Thanksgiving together.

A lot has changed in two years and I am thankful not to be spending Thanksgiving in a hospital, but in the warmth of our friend's home, in good health and surrounded by love and laughter. I am thankful not to watch Evan have multiple seizures every day and thankful for the way his future looks today. I am thankful that the seizures are not a daily occurrence and hope they remain only as memories.

I am thankful to our family and friends who have offered support in many ways throughout the years and who have been with us in good times as well as more challenging times. I am thankful to Aria who is wise beyond her years and reminds us to be compassionate to all living things and respect the earth. I am thankful to Evan who is blessed with comedic timing and can always make me laugh. I am thankful to Rob who balances me and enriches my life.

Happy Thanksgiving!
Lisa

Our family was featured in Epilepsy USA magazine this month. This is a real honor, especially during Epilepsy Awareness Month. The article is a reprint from Epilepsy 360 in Australia...

Epilepsy USA Magazine Article: Evan's Story

It's great to be featured but these stories bring back raw emotions we thought were buried and gone. This photo appears in the article and this is the expression Evan wore for almost three weeks with occasional smiles that often looked more like grimaces. How far we have all come!

My Son the Chemistry Experiment

We've been home from NY for almost two weeks and Evan has had two experiences with tunnel vision since we got home.

The first one was the day after we got home and we blamed it on the multivitamin he was taking. He started taking the multivitamin and started having some little breakthrough seizures and tunnel vision in the same time period prior to going to NY. Then he didn't have the multivitamin in the hospital and everything was great. We came home, gave him the vitamin and he had tunnel vision. We stopped the multivitamin and he had no tunnel vision or side effects, so naturally we took turns patting each other on the back for our brilliant medical detective work.

Everything was smooth sailing until today. We received a call from the school that Evan was having tunnel vision and nausea so we went and picked him up to wait it out at home. We're pretty much convinced that the issue is related to his medication dosing because it always happens after he would have metabolized his morning dose. After talking to his doctor we are going to try adjusting the amount he gets in each of the three dosages but keep the total daily intake the same. Hopefully that will spread out the medication better and Evan will stop having side effects.

No more wires!

We are finally free!
Yesterday was a whirlwind...Evan finally got disconnected from the Video EEG, we left the hospital, packed up our stuff from the Ronald McDonald House, Grabbed a quick dinner and rode the bus home. We got home at about 10:30 last night and it is so good to be home!

The EEG was completely clean -- after 4 days of monitoring they saw no seizure activity (neither did we) and no abnormal spikes in the EEG patterns. So that's good news! As for the crazy seizure activity, tunnel vision and nausea, we don't have clear answers. Maybe it's just his body adjusting to the increase in meds last week. None of it was repeated in the hospital so we're going to watch and see how he does at home. If the symptoms persist, they will be blamed on the medication not working or Evan reacting to it and we'll switch to a different med.

So for now we wait and watch...

Pokemon Evan

Evan thinks having his hair stick up from the EEG leads makes him look like Cascoon from Pokemon. I just think it makes him look studly, especially with the GQ pose!

We haven't seen any seizure activity since we got to NY and I "slept" with Evan last night at the hospital. This morning they took blood with a finger prick and Evan scored some Yu-Gi-Oh! cards. His favorite is one called Silent Abyss -- no irony there!

After the finger prick the lab said there were issues with the blood test and they wanted a blood draw from a vein. Evan was so NOT cool with this idea. As the resident tried to convince him that it would be fast I heard blood curdling screams come from my son just at the very thought of a needle. This is not typical behaviour and in the end he won...for today at least, they'll try again tomorrow.

Things got better after that and it was great having Aria here with us...even with everything going on there is still a lot to smile about! I love how close they are.

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!

National Epilepsy Walk, March 28, 2009

Amazingly, it's been a year since the last National Epilepsy Walk. We are putting together a team again this year and I find it interesting that this is an emotional experience for me. As we set up our pages this year I couldn't help reflect on our experience with epilepsy. We have seen more seizures than anyone should have to witness and after Evan's surgery we brought home a seizure-free 4-year old with a lot to celebrate! The surgery brought challenges too though and when Evan left the hospital he was only able to take a few steps before he was exhausted. He had to learn how to walk again and he's such a tough little kid that he quickly pushed forward and is now running, jumping and playing harder than ever. We've seen only a few seizures since his surgery but they are pretty much controlled by medication. Our biggest hope is that this continues to be the case!

Organizations like the Epilepsy Foundation are dedicated to epilepsy research and finding better treatments and a cure for epilepsy and we are thankful for that. We are proud to be walking the walk again this year and are looking for people to join our team or sponsor us. Check out our team page...

http://giving.epilepsyfoundation.org/goto/SeizureTracker

This is the face that motivates us...he's this cute in person too so it works against us a lot!

Congressional Lobbying Effort

We are joining the lobbying effort for TSC research funds again this year and are hoping for another successful outcome! Last Fall Rob was lucky enough to sit on the panel that reviews the research grants submitted and got to see all the incredible programs being funded to search for better treatments and a cure for TSC.

There are some really brilliant minds working toward these goals and I am thankful for their dedication and commitment.

There are only a few days to go before we hit Capitol Hill and start making the rounds with the Virginia representatives. We are double-booked with appointments but we'll make it all work out!
We'll be bringing with us a collection of personal stories from Virginia families and the TS Alliance will be bringing a petition. If you want to help, please consider signing the petition...

http://www.ipetitions.com/petition/tuberous_sclerosis/index.html

There are almost 5000 signatures already!

Hooked up

Here is a slightly fuzzy shot from my phone that illustrates the last couple days...hooked up to the video EEG, watching Spongebob and eating lollypops! We also spent a lot of time in the playroom and had a blast in art therapy -- not sure who it was better for, me or them!

The news is all good and I'm hoping it stays that way. Nothing to worry about on the EEG and no news is good news! We checked out of the hospital today and will head home tonight.

We're in NY for a Video EEG -- a few snaps

We are staying at the Ronald McDonald House of Long Island which is pretty amazing. Everyone here is so wonderful and it really is like a hom awa from home!

Before Evan met with his doctor and checked into the hospital for monitoring on Monday we played at one of the nearby playgrounds to kill some time and burn off some energy.

Then we checked out the greenhouse and fish pond in the hospital. We timed it well and even got to feed the fish.

Evan wins the battle but his brace loses

Often before my first cup of coffee Evan says to loudly and very serious, "Mom, are you ready to battle?" He hands me a Pokemon and I'm expected to know who's in the closed Pokemon Ball and what powers it possesses to be a worthy opponent to Evan's yet undefeated Pokemon. A few days ago it seems Evan "battled" with his brace and it was thoroughly defeated...

He didn't do anything out of the ordinary but was just being his normal crazy self and caused the brace to crack at the ankle. Guess these aren't much use anymore. Luckily he just got fitted for new ones and they'll be ready in 3 weeks. This will send us back to see if they can do a temporary fix on this one but I'll be impressed if they can salvage it!

His fitting last week was pretty amazing -- it was the first time he had the casting done that wasn't traumatic and emotional for all of us. It was so overwhelming for him when he was younger. Here's a snap of the casting process...

I hope the ease of this appointment is a sign of Evan being able to tolerate testing better. Tomorrow he will be checked into NYU Hospital for a Video EEG and it would be great if he doesn't freak out when they glue all the EEG sensors on his head. We'll all be keeping our fingers crossed!

Julianne Moore: Spokesperson for the TS Alliance

Julianne Moore has been the official spokesperson for the TS Alliance for several years and appeared on Access Hollywood a couple weeks ago. Here is the URL to the video...

http://www.accesshollywood.com/julianne-moore-lends-support-to-tuberous-sclerosis-foundation_video_924963

She has been an amazing supporter of the TS Alliance.

Vigabatrin Recommended for FDA Approval!

This is really great news and a long time coming!!!

This week an expert committee unanimously recommended the FDA approve Vigabatrin for the treatment of Infantile Spasms and Complex Partial Seizures. This is a huge step forward, especially for children experiencing Infantile Spasms which can be a devastating seizure type that can significantly impede neurological development.

Children who have TSC have a higher chance of having Infantile Spasms, a rare and catastrophic form of epilepsy that almost always starts before one year of age. The spasms typically last for one to five seconds and occur in clusters of up to 100 at a time and can cause severe developmental delay. Currently, there are no FDA-approved therapies and Vigabatrin has been proven effective in controlling infantile spasms in many cases, especially when the underlying cause is TSC. Early diagnosis and treatment is essential and can improve neurologic function.

Vigabatrin will now move toward full FDA approval, which may take four to eight months, but well worth the wait. Right now anyone prescribed Vigabatrin in the U.S. is getting the medication through Canada or Mexico and insurance doesn't cover it. I am so happy to think about the families who need this drug actually being able to get it without jumping through hoops and waiting days for it to arrive through customs.

A new year...a new seizure

It pretty much sucks to be writing this and yesterday was a rough day for our family to say the least. Evan had a seizure and we ended up spending 13 hours at Children's Hospital in DC yesterday. Fortunately my parents were still in town and we didn't have to make plans at 5:30 am about how to get Aria to and from school!

Evan crawled into our bed at about 3:00 am and then had a seizure at 5:30 am. At first we thought he was going to throw up because he kept crunching his body in while lying on his side and making a funny noise in the back of his throat. Then we realized he was doing this consistently every 3 seconds and he was having a seizure. After a couple minutes we began fumbling through the closet for Diastat (rescue drug to stop a seizure) and it was expired. SHIT! We've never seen him have a seizure like this or one that lasted so long and we were starting to get worried that it wasn't stopping. Evan's eyes were open but he wasn't able to talk to us. We were starting to set up the expired Diastat, hoping it would have some effect and were thinking about calling 911. Maybe just the threat of a rectally administered drug worked because Evan’s seizure began to subside. Whew! It lasted almost 3 minutes and Evan sat up and fell instantly asleep in my arms. We called the phone service at NYU Hospital and left a message for the on-call neurologist to call us back. Evan slept until the phone rang a half hour later and I asked him to squeeze both my hands. He did fine with the left but his right hand barely moved. I asked him to squeeze really hard and he said he couldn’t. Prior to surgery he used to have weakness on his left side after a seizure but never on his right side and never this long afterward.

The on-call neurologist suggested we go to the ER to get his head scanned. Under different circumstances we may not have gone to the hospital since the seizure had stopped on its own, but last week Evan fell off a slide platform on the playground and hit his head pretty hard. The doctor recommended we get him checked out thoroughly since he hadn’t had a seizure in so long and it manifested so differently and the weakness in his hand lasted so long.

At the hospital they did a bunch of blood tests and put us in an observation room in the ER until they had an available MRI slot. There was a lot of waiting around and Evan was in good spirits. He charmed all the nurses and when we finally left the hospital we had an armload of toys and stuffed animals they had given him. The MRI results came back with no changes since the one he had last March and we were relieved. One of the blood tests was to check his medication level and that won’t be back for a couple days but we increased his meds a bit and hopefully we won’t see any more seizures. What an ordeal! Everyone at Children’s Hospital was wonderful to Evan and they worked with his neurologist at NYU each step of the way. As we were leaving one of the nurses even gave him a popsicle for the road – his fifth popsicle at the hospital, but who’s counting?

Yesterday was a bad day but today we are happy to say Evan is one day seizure-free. I hope the trend continues for a long long time.