Thursday, April 11, 2013

Spin For Kids

I know I have mentioned Camp Twitch and Shout several times in other posts, but if you aren't sure what Camp Twitch and Shout is, it's a wonderful camp experience for children with Tourette Syndrome. It's a place where my Monster Man (and now my Little Man, as well) can connect with other kids that have TS, getting a chance to feel 'normal' for a week. While I don't think that everyone should always be the same, I recognize the value of having a place where they don't feel so out of place, so alone with their daily struggles. For Monster Man, Camp Twitch and Shout has been a little slice of heaven on earth.
Camp Twitch and Shout is a camp partner of Camp Twin Lakes, a wonderful organization that offers camping experiences for children and families going through so many struggles - medically, emotionally, and more! Camp Twin Lakes depends on donations to make these great camps possible.

This October, I am heading up the Camp Twitch and Shout team for a Camp Twin Lakes fundraiser, Spin For Kids. Our team goal is to reach $5000 in donations, and I am hoping to have somewhere around 20 riders on our team. Please join us in reaching our goal. If you live in Georgia, please consider joining the Camp Twitch and Shout team. If you are unable to join the team, please consider making a donation to sponsor a rider and help our team reach (or possibly surpass!) it's goal.  You don't have to make a decision right away, as the ride isn't until October 20, but our team would appreciate you taking a moment to consider riding or sponsoring.  Thank you in advance!
Click Here to Donate

Friday, April 5, 2013

EEGs for both the boys

I had to take both Monster Man and Little Man to the neurologist last month. It was time for Monster Man to be seen again, and it was at that same time that I took Little Man in to get his diagnosis, as well as to be seen for migraines. In addition to the TS and migraines, I had another concern that I had needed to discuss with the neurologist. For some time now, Monster Man has had a problem where he would quit talking mid-sentence, spacing out and completely forgetting that he was even talking. I was told by several people in a TS group I am part of that it could be TS related, but that it sounded more like absence seizures (petit mal seizures). In recent months, it had been brought to my attention that Little Man was also having spells where he would 'space out' and seem like he wasn't quite there. Given the fact that there is a close family history of epilepsy, it was a bit concerning to us. I mentioned this to the neurologist while we were at their appointment, and he scheduled both boys for EEGs the following week. After a long night of keeping them up until midnight and then waking them up at 5am (they were only allowed 5 hours of sleep prior to the testing so that they would be sleep deprived), Georgia Boy and I took them to have the EEGs performed. In our paperwork, we were told that the results would be ready through our physician in 7 to 10 business days, so we expected a long wait before finding out the results. Instead, the neurologist called us that afternoon with the results. Sure enough, both of the boys have been having absence seizures. The boys are now both adjusting to taking seizure medications, a transition that has been a little easier for Monster Man (who is used to taking medication for the TS; Little Man does not require medication for his TS at this time) than for Little Man. I think Little Man is finally adjusting, though, and we're already seeing a huge improvement in the amount of seizures we were previously seeing.