2 Months No Seizures, 1 Week of Seizures, OFF MEDS

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!

What?! Poor Charles only had 2-3 weeks with no seizures! They're back!

After Christmas, we assumed he would have a few months off again until his next episode. That was not the case. It's Friday, January 18th today. Last Saturday night (the 12th), we had the missionaries over for dinner. An hour later, Charles has 8 seizures. Sunday he had like 150 tremors in his legs. We took him Skyridge to get an IV dose of Keppra (per his on-call neurologist). We thought that would eliminate all seizures as it has in the past (he's had the IV dose of Keppra once before). Alas, it did not. The experience at Skyridge was awful too. They had to poke him 3 times till they get the IV going, he was SO upset about it. In addition, we forgot to bring the Cars DVD with us and/or pre-download it to the Kindle, so he was devastated until it finally downloaded. I know, that sounds trivial, but when the poor kid only wants 1 thing while he's going through such an awful experience, we like to try to accommodate :-) Anyway, the next day, Monday morning, it all started again - including a tonic seizure, several small seizures and many many leg tremors that make him lose balance. So, we decided this time, to take him back to Children's Hospital since they have better and more experience with kids. After 2 hours there, we got no-where, other than the recommendation to add a morning dosage of his daily medicine. Before, he was on 5 MG of Clobazam, and now they changed it to 5MG at night and 2.5 in the morning. Tuesday was not much different...he had 35-40 leg tremors while we were at Sam's Club shopping. Poor kid. It scares him no matter how many times he's experienced it. It wiped him out and he had a LONG nap. Wednesday was a little better, and Thursday was even better (yesterday). We had a scheduled neurology check-up with Dr. Levisohn (his primary neurologist) at 3:15. We discussed MANY things...

1. Is it possible he doesn't have epilepsy, but something else (since his symptoms are so un-like any other patient)?

2. It is possible if we took him off all meds completely, we he be any worse off than he already is?

The Dr. agreed that maybe it's not epilepsy but rather a movement disorder. He recommend I go home and log all seizures on a calendar, including dates/times and TYPEs (tonic, myclonic, and just leg tremors) AND to try to capture them on video - that will be very difficult obviously I don't have a video camera ALWAYS on me and when they are happening, I just want to comfort the poor kid. The Dr. also said we could try weaning him from his meds.

So that night, since he had been doing well, we all went to the Gym as a family. Right after we checked them into the kids club, he went down to the ground. The care taker there said oh he's just playing...I said maybe but I better check. Sure enough, the seizures were back AGAIN. We promptly left.

NOW TODAY...So this morning his leg tremors were back again. Then, as I was taking the kids to school, he had a big 15-20 second seizure in the car in his car seat. He was shaking, bent over to the side, couldn't speak, etc. I pulled over and tried to video it but just caught the very end where he's just weak and limp and exhausted. He's napping now and has been for 2 hours...between the seizures and the meds, he's exhausted during the day, then stays up late at night. Its a vicious cycle that's also probably not good for him, but HOW DO I FIX IT??!! I was able to capture the leg tremor in the kitchen this morning and will try to upload that.

I LOVE THIS LITTLE BOY SO MUCH, he's just so cute and sweet I can't understand why this is happening and how and why the doctors don't know what to do for him. My job in life is to keep him safe and make him a priority. I want so desperately for him to at least get relief from medicine, but it's not happening, it's getting worse! Tomorrow would be a full week of seizures. The Dr. recommended a 3-day stay at the hospital which sounds atrocious, but I would do it except it would probably be the 3 days he's seizure free and they would get NO helpful information out of it. The Dr. put the orders in for it, but it can take quite of a bit of time to actually get it scheduled, etc.

He fell asleep on the way to this appointment as well.