Switching to Keppra

Greg spoke with Dr. Fayad yesterday via phone where it was decided that the best course of action is to switch Meredith's medication to Keppra. Keppra is a similar medicine that also has few side effects, though the one most often noted is an increase in irritability. Hopefully Meredith will not experience this, but if she does, supposedly a dose of vitamin B6 helps combat the issue. So we spend this week tapering off Trileptal and onto Keppra. So far it has gone smoothly and she's taking to it well. Trileptal is really good for some kinds of seizures (the kind that showed up on her EEG), but can actually make other kinds worse. We wonder if the trileptal was making things worse for her since she never had clusters of that many seizures pre-trileptal. Cross your fingers for better results with Keppra!

35

We had another long weekend, but all is good now. On Thursday, Meredith's seizures didn't stop so when I got home from work, we decided to go to the hospital. Greg and I are getting good at this routine and knew to go straight to Children's and bypass Milford Hospital. We checked into the ER and Meredith was hooked up for monitoring. They tried several medications with no success to get the seizures to stop. They continued until 7am the next day resulting in a total count of 35 seizures. She would seize every time she woke up and then pretty much pass right out again. It was taking such a toll on her little body, you could see how depleted she was. Finally, something they gave her worked and she did stop. The last one she had was 7am Friday morning and she has been seizure-free since. Once they stopped, she was happy and smiling almost immediately, almost manic and hyper. She was awake all day and took no naps. Greg stayed with her that night at the hospital since I had done the night before (they only let one parent stay) and he said she was awake ALL night. Doing her little yelps and laughs all through the night. What is she laughing at!? He slept snug as a bug on a windowsill hospital bed (joke) and also logged in zero hours of sleep. The next day, she continued to not nap and also continued to not seize - we were thrilled. They told us we could take her home and we were out of the hospital around 3pm. She is on her regular Trileptal and they are supplementing with another anti-seizure med called Keppra. So right now she is on two. We go see the Neurologist soon to discuss the best treatment going forward, but for the time being, she will remain on the two.
Today, Meredith is back at daycare and I think she was happy to see her buddies again. They are playing "Minute To Win It" this week. They give each child a magazine and whoever can rip out the most pages in one minute wins! I think Meredith got smoked by Maisie, but I'm sure she put up a good fight : ) So cute, I love KinderCare. I talked with them about our weekend and they were supportive as usual. I couldn't dream up a better daycare scenario, I absolutely love this organization. So our count begins again and we are on day 4 with no seizures.

ABM

I knew I shouldn't have put that into writing. The seizures are back - she's had 3 so far today and its only 9:30am. I'm home with Meredith for the morning and Greg will be home with her in the afternoon while I go to work for a few hours. She's doing ok, but pretty groggy and sleepy. The only thing that was different this time is about 30 seconds prior to the seizure, she screamed out of the blue. It was literally like she had seen a ghost. Very strange. I have read about people having what they call an "aura" before they have a seizure. Its like the bodies way of telling you you are going to have a seizure. Some people hear a certain sound (like ringing in the ears), or have muscle contractions, or smell a certain smell, heart racing - all kinds of strange things. I wondered if that's what she experienced? Meanwhile, we have been researching some new things. I stumbled across the work of a woman named Anat Baniel that I'm blown away by. She developed a rogue method of physical therapy called, not surprisingly, The Anat Baniel Method (ABM). It's her own take on an approach called Feldenkrais. For most children, the brain signals the body to move and lots of this developmental progress happens spontaneously. For many special needs children, this is not the case. ABM explores how special needs children need to be taught differently. The jist of ABM is you use the body to teach the brain instead of the other way around. The therapy involves lots of movement, quick movements, that help the brain form new "connections." There are lots of videos online and I'm intrigued. There are not many practicioners in MA that teach it, but I found a few and have placed a few calls just to get info. Now how to convince Greg that we need more therapy in our lives, haha : )

19 days

It's been a couple weeks since I've posted here, which for us is actually a good thing as there is not too much to report! Meredith has not had any seizures in 19 days, which is awesome, awesome, awesome. She seems to be doing well on her new dose - so far, so good. I took a much needed week off work in early May and just stayed home. It actually felt like a nice long break. We enjoyed all the sunny weather, spent lots of time outside and planted our vegetable garden. Hopefully in a month or two, we'll have some yummy snap peas, cucumber, cantaloupe, lettuce, basil and tomatoes right from our own garden. And blueberries too. We are still working on getting Meredith's stander but are trying to iron out a little insurance wrinkle before we can move forward. We also applied for MassHealth, CommonHealth for Meredith which is supplemental insurance for children with disabilities. It takes about a month to hear if she got approved for coverage or not, so cross your fingers for us - they would cover things like the stander : ) Yesterday, Meredith had picture day at school and they said she did great. And today is class photo day. I'll post one here when I get them so you can see!