A little me - Well I feel like I have some success on my new healthy living. I have lost 17 pounds and am finally back in my wardrobe. But I feel like I need to get to a healthy weight for me and for my diabetes so I am aiming for another 20 pounds. I am walking everyday that I am in Austin on the trails for about 3 miles a walk. Really feeling great and holding off the high blood pressure for now. Its all good. Just need to stay focused on healthy eating and regular exercise.
A bunch you (Brandon) - As you may have read in the last two years, Brandon has had a rough time with seizure control. There are many factors on why his seizures have been worse in the last 2 years. Loss of significant weight after being hospitalized for H1N1 and having his medication levels off, insult to Brandon's system from the stress of H1N1, puberty kicking in, being on the same medication for 15 years and wisdom teeth coming in. But no one really knows why Brandon's seizures have been uncontrolled.
I have many friends of kids who have seizures experiencing the same thing at this age. As I was reminded this week, it has been a miracle that Brandon had his seizures under control for 17 years. But it finally came to a head this weekend when Brandon really could not wake up after 48 hours. He was just being controlled by the seizures.
Brandon has been on tegretol medication for 15 years. When Brandon started on the medication at age 2, Brandon really had his seizures under control. The only time they were not under control, was if he became sick or if he had a growth spurt. When he did have seizures they were very hard to detect. But it all changed after Brandon had H1N1. He began having fairly significant seizures shortly after discharge. We began raising the tegretol level month after month until finally we reached the top of the recommended therapeutic level. The neurologist then started him on Keppra on top of the high tegretol dose. Within a few days of starting Keppra, Brandon was like a new kid. We was interactive, talkative, happy, joking and engaged. I didn't realize what a toll tegretol was taking on him. It really has some serious side effects. I have wanted to remove tegretol since we added Keppra. There is currently a clinical trial studying the effects of Keppra on kids. Many parents have reported that their kids have "awakened" on Keppra and it is being studied. So needless to say, I love Keppra. But it has never completely stopped Brandon's seizures. Plus, Brandon is still on a very high does of tegretol while trying to get Brandon seizure free on Keppra. The only way to fast track change of his medications is to be in he hospital while being monitored.
Other things that have changed since H1N1 - Brandon now has triggers for seizures. He never had them before. For him, lack of sleep, bright lights, strong laughing and stress can set off a seizure. Brandon has been very careful to try and avoid the list. Brandon's seizures have become much more controlled since on Keppra, but he still has them. When he has them, they can be very strong and result in Brandon sleeping for hours afterwards. This weekend Brandon said he had a bad seizure Saturday night. I had a hard time waking him up Sunday morning. He finally got up for a few minutes but went right back to bed. He had another seizure Sunday morning. He finally woke up around 2 pm Sunday. We went to a store and Brandon had a bad seizure in the store. We left and came home. Brandon went to sleep. He woke up screaming in the middle of the night Sunday night (after a seizure) and then slept with me. Brandon had little seizures through the night and then had another one in the morning (Monday). He was still asleep when I left for a meeting. While I was gone Ross said he screamed again (another seizure). When I got back around 1:30 he was still asleep, could not walk without help and hard to wake up. I had been talking to the neurologist through the weekend and Monday morning and we all agreed he needed to go to the hospital to get checked. Brandon did not wake up until he had a dose of Depokene in the ER. At 6:00 PM he opened his eyes and was awake and talking. Dell ER ran a ton if tests and all tests led to Brandon just have seizures without any illness. Although Brandon was awake, the neurologists wanted him admitted to monitor his activity on the new medication and discuss the plan to keep him healthy.
The Plan - Begin weaning Brandon off tegretol with the goal of him totally off in 4 weeks. Begin Depokene, but increasing as we decrease tegretol (apparently they don't work well together). The end result is a therapeutic level in 4 weeks. Keep Brandon on a slightly higher level of Keppra. After Brandon's blood levels are checked in 4 weeks, set Brandon up for a 3 day stay in the Comprehensive Epilepsy Program at Dell.
http://www.dellchildrens.net/about_us/news/2011/08/02/setons_epilepsy_programs_for_children_and_adults_are_tops_in_the_region
Brandon will stay for three days in the Comprehensive Epilepsy Program while they take him off all medications. They will have him on an EEG for three days to determine the source of the seizures and decide what the best treatment is for his condition. I am hoping that after all this, Brandon will be back to rarely having a seizure and having his seizure activity under control.
For Brandon's future, having more control of his seizures will help him with employment. In addition, we are looking at having someone live with Brandon next year. So the more stable his condition the better. It is essential.
Last night Brandon was seizure free, happy, strong and looking better than I have seen him in a while. So so far so good.
Thanks to all you mom's the last two days pointing me to the Comprehensive Epilepsy Program. Once again, Parent to Parent connections work. And thanks Ross and Kate for taking care of the house, running errands and going to get Ringo (who I forgot about when we left). Thanks to Tom and Tony for company and some great food while we were waiting.
On to being healthy.
Leah
