Seizure Update

A few days ago V and I took another trip to the St. Louis Children's Hospital/Washington University to meet with her neurologists/epitologist. It had been around six months since our last seizure scare and visit to the doc's but this trip wasn't due to any scare, luckily, this visit was just a check up. In fact,  I had no concerns what so ever. It was nice!

There's not much to say really, which is a great thing to finally be able to say! Vada's last known and proven seizure was around the time she started the ACTH injections, which was around a year and a half ago. Since that time there have been many questionable moments, movements, and behaviors but thus far we(I) have been wrong and her seizures have been controlled. Again, another great thing to be able to say!

What this all means is that this coming August/September of 2012, will be her Vada's two year anniversary of being seizure free! A monumental moment to celebrate! It also means tapering time, something else to celebrate but also something that has a dropped another heavy anchor into the very pit of my stomach-- even my heart is bogged down with overwhelming concerns. I keep telling myself that this too is progress and progress, no matter how difficult to endure, is good.

Currently, Vada is on three medications to help keep her seizures under control. She is on Levetiracetam (Keppra), Valporic Acid and L-Carnitine (to offset ill side effects caused by the Valporic Acid. The first step is to taper or wean her off of the Keppa and both of her doctors agree that it is time. However, they both said that if i'm not ready then we can wait. I used the inallagy of a child not wanting to have a bandage removed because they know that it may hurt, therefore, usually, its done quickly.  I then told Vada's doctors that I will never be fully ready to take this chance (I am just fine being in this comfort zone--thank you very much!), so like the bandage situation we just have to do it. Quickly, however, is not how her weaning will be done. I have been given a schedule that will slowly, over ten weeks, take her off of the Keppra.

After those ten weeks Vada will remain on the other two medications until we return for another check up in or around July 2012. If everything goes well, we will then begin to wean the remaining anti-seizure medications and by Aug./Sept. (her two year anniversary of being seizure free), she could be completely off of all seizure associated medications!

I have to keep telling myself, "one day at a time" and "slow and steady" but things are going beyond well. I pray that they continue to be so. Our lives have settled down considerably and things feel "normal". Its been nice. I don't want to go back to where we've been, I want us to keep moving forward but I guess even if we do have setbacks, that's exactly what we will do anyway..., move forward.

It's Good to be Wrong

Over the past several days Vada has had questionable movements again. It sounds weird to say that, let alone put into words, but when you have dealt with seizures maybe it gives you a whole new perspective on the way your child moves, acts and behaves. The movements have been comparable to what we were seeing when she was having seizures.

I have been corresponding through emails and over the phone with Vada's neurologist throughout this time and over all he was on the same page. I had sent him several emailed videos and with each one he commented on how it looked as if she were having a different kind of seizure(other than the Infantile Spasms).

The last time I sent him video's he called with in a few hours offering me two options. The first choice was to start her on the Sabril right away, (a medication that I have a months worth of on hand). The second option was to do an VEEG also known as a Video EEG Monitoring Test. I jumped at that idea. The last VEEG was one that lasted for four straight days. It was done at the beginning of Vada's seizures, nearly four months ago.

While I still believe firmly in not treating the EEG but treating the child/symptoms, I needed to see what was going on. My mind wasn't made up and I was confused at what I was seeing. By having this VEEG I was hoping for some direction. If the video showed her to be having seizures, then we would treat her for them, but I didn't want to start yet another semi-risky medication for no reason if she was not having seizures.

During the initial preparations I was given a button to push and a log sheet (just like last time). Everything that we had been seeing and everything that we had been questioning would be seen on the video as well as on the scan. The doctors would be able to target the "episodes" by the moments on video and from when I pushed the button.

The test went well. Vada had every "episode" that we had previously questioned and not one single movement showed up to be a seizure! This was great news. Overwhelmingly great news. However, I am not one to leave "well enough" alone, (or is it "good enough"...? Ugh..., I need to go back to school!). On Monday I am taking Vada to her GI specialist and requesting that further testing be done.

(This picture was from September 2010 when Vada first started to have seizures. You can see that there are "rest" periods between the "peeks". The rest period's show Vada's normal brain activity. The peeks are what happens when you have what is called hypsarrhythmia. Hypsarrhythmia is something commonly seen with her type of Epilepsy.)

(This picture was from the January 2011 VEEG. No peeks. No hypasarrhythmia!!! The Neurologist said that her brain activity is slower than a typical child, but that slower activity is commonly seen in people who have Down syndrome.)


One new piece of information that we discovered during this last OSF stay was that Vada's has leukopenia. Which means that her White blood count (WBC) is low. Her levels should be over 1000 and right now it is in the low 600's. I'm sure most of you know, but for those who don't, your white blood cells are what helps your body fight off infections. The cause of her low WBC is probably being cause by the Valporic Acid that she is taking to help control the seizures. Since the Valporic Acid is working at maintaining a seizure free Vada we all agree that we would like to attempt to keep her on it. So we have started to give her Levocarnatine, which is known to help raise and maintain the WBC.

Vada will have to have her blood continuously checked to make sure that her levels are where they need to be. If the Levocarnitine does not help then we will have to look at putting Vada on a different Anticonvulsant. For now, were going to keep a positive mind set and pray that the Levocarnitine does the trick!