In early 2013, I felt inspired to take Charles off his daily seizure meds. They weren't helping anyway, and I don't know what harm they could do if he doesn't necessarily need them if their not helping! So, with the blessing of his neurologist, we weened him off over a month period. He had NO seizures for 2 months, so I thought maybe we turned a corner. Then, he got sick and the seizures returned for about 4-5 days - each day he had 1 tonic seizure, in addition, he also had these leg tremors I've described in the past. We video taped them and sent them to the neurologist and he said those aren't seizures (which we knew), but maybe a side affect to the actual seizures, the medicine he take when he's actively having a seizure (clonazapam), or the illness (cold). We met with his neurologist on April 1st and he agreed to keep staying off the daily medicine and only give him clonazapam when he gets ill and they return. Well, in mid April (about 10 days ago), he got another cold and I was like "okay, we should see some seizures any hour or day now"...but we didn't! I believe this was the first time he's ever gotten sick where he didn't also get a seizure to accompany it, or as a result of it (minor fever also). So, in 3 months, he's had 1 bad week...not bad considering he's not being medicated on a daily basis anymore, and he had been for 2 1/2 years.
His birthday is this weekend. For his first and second birthdays, we kept it REALLY low key since he doesn't tolerate too much commotion. I think we'll do that again this year. Cupcakes at 5pm type of thing - come when you can, not all at once. I do feel like he's handling life a little better since coming off his daily meds - he does NOT spend 5-6 waking hours a day in my bed anymore. Only about 1 hour. He is starting to sleep in his own bed at night better (not a ton, but we'll take what we can get). He's still kind of a "wreck" when he's tired or frustrated (or not getting what he wants), or doesn't have his "po-po" - which his his polka dot pillow (his favorite thing in the world). He still isn't going to Nursery at church very well and doesn't last through all 3 hours, almost ever. But, he's not medicated, and I'm SOOO happy about that.
We will continue to watch over the next 3 months and if he does well, we will keep off meds, and if he doesn't, we will try a 4th kind of daily. I'm hoping for the first, of course. I was so frustrated in March, that I started researching neurologists in the country who could figure out what was wrong with him...there just isn't an answer. There are some good neurologists at Primary Children's Hospital in SLC, but for now, we'll hold off. In the meantime though, I also researched the reasons children can have leg tremors - there were 49 reasons, I narrowed them down to 7 based on all of his symptoms, and went through the list with the Dr. and he addressed them all. The only one I think may still be a small possibility is high thyroid numbers. I insisted he get blood work done for them, and sure enough they did come back a little high - but the range for children is so huge that it appears he's in the "normal" range, but some people just can't tolerate a higher number than others. His TSH is 3.269 (range for adults is .5 to 5 and for kids its .5 to 7.5). I'm going to have this retested in 12 months to see if it changes.
David (Charles' big brother) came with me to his last appointment (It was Spring Break). He was SOOOOO helpful! Charles did SO well waiting for an hour for the Dr, and David played with him tons. But, by the time he finally came in, he had had ENOUGH. He just wanted his "po-po". Unfortnately, I was with the Dr. and the pillow was in the car, which I had valet'd - we always valet at Children's (free, convenient, simple, most patients do). But, I knew if he didn't have the pillow he would be screaming and crying the WHOLE time and the Dr. appt would be a disaster and non-productive. So, I made a crazy decision. I would SEND MY 9 YEAR OLD (David) to retrieve the pillow from the valet service. I gave him the valet slip, no cell phone, told him which floor we were on to come back (Children's Hospital is HUGE), which department we were in, the Drs' name, and what to explain to the Valet. The neurologist looked at me like I was the craziest mom in the world - how could he do that? and why would I possibly send him? and is it safe? and why can't the 2 year old live with out it for 20 minutes? and everything else you're thinking now too. But, David can be SO incredibly responsible and smart, when he sees the need and feels like he's being given an opportunity to do something amazing. So, I sent him off. Charles calmed down immediately when he saw someone in progress headed off to get his "po-po" and save him from the wrath of no pillow!!! aaaahhh!! halelujuah! The discussion with the Dr. continued. And, about 7 minutes later, David was back with the pillow - talk about the HERO OF THE DAY. I was SOO proud of him and Charles was SOO happy!! And the Dr. was SOOOO impressed with David - he gave him permission to come to ALL of Charles' neuro appointments, even if he was in school, that Mom would just have to take him out. I concur. It was wonderful to have his help. Here are some pics of playtime while we waited for an hour. Its our tradition to take pictures at all of Charles' appointments, hospital visits, etc. for records and this blog, and to remind me of his experiences, so I can help remind the drs of his history. One day I hope to look back on this and not remember the hard times, only the fact that I have been given the opportunity to have LOTS of quality one on one time with Charles. Thanks to Grandma Dianne (and Auntie Sheila too) for making that always a possibility - she gets the other 3 kids when we have to care for Charles.
Here's hoping for a seizure-free, fun-filled summer! If you're looking for us, we'll be at the pool, lovin' life!
