Mr. Sandman Where Are You?

This week Oliver's seizures have continued and gotten a bit longer. We are still increasing the new medication to get to the optimized dose. We are thankful that so far he is tolerating this drug better than any other we've had him on. We are still waiting on the shipment of the med from Canada. It is scheduled to come today. I sure hope it does because we are almost out the starter supply we got from Boston.

We are trying to get in all our paperwork for MUSC (Medical University of South Carolina) to start the Low Glycemic Index Treatment. Right now, the dietitian has asked us to keep a 3 day food journal for Oliver! I realized he is grazing all day which makes keeping the journal a challenge :) We're praying everything with this process goes quickly. We'd love to get an appointment in the next few weeks.

As for sleep, oh sleep we miss you! About every 2 out of 3 nights Oliver will awaken as many as 6 times usually between 2AM and 6AM. He starts roaming around his room and is disoriented. It wakes us up and we have to wait to see if he'll go back to sleep or if he needs something related to seizures, etc. We are both exhausted. We are in worse-than-newborn-baby-shape. At least when Ollie was a newborn he didn't walk around! Yesterday Andrew took Oliver so I could nap and it made me feel like I could actually function again. Like I was back from the dead! Thank you sweet hubby!

The Boston doctor heard our plea for sleep help. As we've said before, fatigue triggers seizures so part of why we might be seeing more seizures is that Oliver is exhausted. More than us not getting sleep it is bad for him in a medical sense to not get enough rest. So, she prescribed a medication that they use for many of their kids with TSC. She said sleep disruption problems are very common for her patients and this medication is helpful for many families. She said they even use this in the hospital when they put on the EEG "hat". Of course somehow, last night, the med didn't get called in to our pharmacy. I was really bummed about this but, I think we can get it worked out today. Fingers crossed, prayers said.

http://www.myreadysetbloom.com

I heard about this bed tent on the TSC message boards. There are always lots of posts about sleep issues for kids with TSC. Suffice to say there are many sleep deprived parents looking for ideas to get their children a good night of sleep.

This bed tent was designed by the parents of triplets, one of which has autism, to help with sleepless nights. It also works well for kids with epilepsy (that would be Oliver) that might get up at night because of seizures. The tents are back ordered so it will probably be late Jan. before it arrives. I can't wait to get this thing! Thank you Lord for the ingenuity of parents with special kids and special needs!