Purple Day!

>> Tuesday, March 26, 2013

We love purple day, even when the boy is sick (two years running) and seizing (7 years).

Purple Day reminds us that we are not alone in battling this condition, that we have MILLIONS of people around the world, of every race, every religion, every gender and age, that are affected by it. It reminds us that there are people that will not look at our beautiful boy and see a non verbal, seizing child but will see Bug: a happy, accepting, non verbal, seizing child that is like so many other children.

My son was not supposed to wake up every morning and have a seizure, he was not supposed to take multiple trips to the ER in a few weeks because he is cut and bleeding from hitting something. He was supposed to play soccer, and mix appropriate chemicals together with his Dad in someone's else's kitchen and he was supposed to ride a bike.

But, he does none of those things.

What he does is make people smile. He makes them feel loved by simply making eye contact and smiling. He makes them appreciate living.

And that is better than riding a bike.

Happy Purple Day everyone!

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Surprising is not the word

>> Wednesday, March 6, 2013

There was a bit of concern leading up to this latest appointment for the Bugster, it appears it may have been all for naught.

Why the concern? Because I hadn't heard from the good Doctors in weeks about treating Bug's FRa. We were left with: Dairy free and Leucovorin. Thanks, been doing that for a while now...let's move on.

So, we went in there thinking: we are going to head out of state. Waiting...is NOT an option anymore.

What we left with was everything we wanted and a little more.

Before each appointment, Glenn asks me: What is your goal?
And we work out the details. This time we decided that we wanted the following things:

An EEG - so we can begin the taper of Lamictal and have a baseline by which we can compare once the Lamictal is removed. His last EEG was somewhat interesting. The tech let it slip that it had never looked so good, since she had been taping him. Glenn and I were thrilled. Thank you Leucovorin? Or was it Dilantin? Now that he is off the Dilantin, we need the EEG to compare so we can openly say: Thank you Leuvocorin. Dr. F looked at the EEG notes and raised an eyebrow. He said: It does show a good improvement. Hooray! (The Hooray is me not the Dr.)

An LP - Once the EEG is established, the LP needs to be done to see where he is with his 5-MTHF production. You will recall, that is what was lacking in the Bug Man...he was low on that Neurotransmitter. It will be a year in May so we need to see if the Leucovorin has raised the level enough or if we need to up it.

FRa Plan - This one was not dependent on Dr. F...he is not a specialist in this area but we wanted him to light a fire under the specialist. She should have learned enough about it in the last 2 months....so lets get on this already.

Those are the big ones. Here's what we were given:

An EEG
An LP
An FRa Plan
Lamictal level (how did we miss this?)

We asked and he said: Valid ideas all. And how about we see what his Lamictal level is like now that the Dilantin is gone? Dilantin reduces the efficacy of the Lamictal so...he may be higher than he needs to be on the Lamictal now.

We were thrilled. Glenn and I got the kids out in the car and the FIRST thing I said: Holy crap that was cool.

He will be getting the EEG next Monday because we couldn't do it that day and the LP will be scheduled soon. We had the Lamictal level pulled (yesterday) and Dr. F is going to call the Neuro Rheumatologist and tell her to move forward with the treatment. Bug is doing so well, we need to take this one step further. He was very pleased with Bug's progress. Which is great because so are we.

Still saying it: Holy crap that was cool.

- Posted using BlogPress from my iPad

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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