The Newest Plan

Kate, her mom, and Haddie went to Akron to see our neurologist on Monday. It has been a rougher couple of months. Haddie has been having seizures every day. And it seems like every other day we have had to give her the rescue dose because she ends up having too many. We would call Akron and they would tell us to just stay the course. The course was to slowly increase Haddie’s Kepra dose and see what would happen. Unfortunately, that really wasn’t working. Kate and I both knew it but we had to make sure it wouldn’t work before trying something else.

Monday we got a new plan of action and we are very hopeful it will work. The doctor said that we are at the max dose for Haddie’s med called Sabril. That’s the med that works on the seizures that are happening “under the hood” or behind the scenes. Those seizures don’t show themselves physically. He says the med does not seem to be fixing those seizures. In fact, that med is probably making Haddie sleepier. We have noticed that as we have increased both of those meds, Haddie has been sleeping a lot more.  He says that sometimes sleepiness can actually bring on more seizures. The body relaxes and that opens the door for the brain to go wild with seizures.

So we are brought down the Sabril and kept the Kepra the same. We are totally okay with this plan. The longer Hadassah is on Sabril the greater her chances of losing part of her eye sight.

I wrote this blog on Monday but didnt't get a chance to post it until now. So here's the best news...it seems to be working! Two days ago Haddie had about 12 or so seizures which is way better than the weeks before. Then yesterday she only had around 6. So we may be headed in the right direction! Time shall tell. 

It's going to be a great week for her and my mom and dad...she's staying with them while Kate and I are at church camp. 

Thanks for your prayers on this. We are so blessed. It’s awesome to have Haddie at home and to see her improving on her feeding. She is doing awesome on the spoon and cup drinking. She weighs somewhere over 20 lbs. Hoping that down the road we can get that feeding tube out again. And we are also hopeful that by getting the seizures under control, Haddie will hit some more milestones a bit quicker.

God is good.