As I write this we are on the plane flying from Orlando to Denver. Jackson desperately wants to sleep but can't get comfortable. He is also very interested in what I am doing as he keeps looking up at the Ipad. I think he thinks I am watching cartoons or playing games without him. But he's happy and that is good when you are trapped in a small container of flying metal with 90+ irritable travelers. We are on our way to Colorado after spending 15 days with Kevin's wonderful parents in Florida. Despite the cold weather and the attack on our immune systems, we had a great visit. Now we will spend 2 days in Denver visiting friends and family before heading home to Spokane.
As many of you know Jackson is plagued by seizures. At the beginning of November we went and saw his neurologist at Sacred Heart about getting more aggressive with his seizures. The doctor upped his current seizure medication by one pill and suggested that if there was no change in his seizure activity then we should look at the option of adding another seizure medication called Depakote. We went home, began giving him an additional pill every day and a week later nothing had really changed. After doing some research on the new medication – Depakote – there was no way I was putting him on that medication. I read scary stories and medical literature that involved intense behavior issues and liver failure with Depakote. It’s just not something I’m willing to risk with Jackson. But I do want him to get better, so I decided to try something.
Throughout my research on epilepsy and Jackson’s neurological condition, I have read that B6 is good for the brain. It is like food for the neurotransmitters. I’ve heard about other parents giving it to their seizure prone children and seeing some good results. I even asked our neurologist about it, who responded that it couldn’t hurt but probably wouldn’t do anything. Now here we were talking about adding, what I believe to be, a dangerous medication and all the while my Mommy gut told me it was time to try the B6. First I called the pediatrician to make sure it was safe for children (it is because it is water soluable), then I bought a bottle of B6 and began giving it to him about a week after we upped his seizure med. I should also mention that after our neurologist appointment I decided to start journaling Jackson’s seizures. Jackson was having an average of 4-5 strong seizures a day that lasted 10-20 seconds each. Then we upped the medication and gave him the B6. Shortly after that his seizures started decreasing in strength and occurrence. By the second week in December we were only seeing one mild seizure a day. However, he was probably having more that we just didn’t catch because they were so mild. Then Jackson got sick while we were in Florida and had quite a few seizures for a couple of days while he was feverish. Although, he quickly went back to his one mild seizure a day after feeling better. Then something weird happened. We didn’t see any seizures for a day. Then 2 days. Then 3 days. Then 4 days. Well here we are on the 12th day and we haven’t seen any. 12 DAYS!!!!! Jackson has never been without seizures for a day since he was 14 months old. Again, I think he might be having little ones that we just don’t notice, but still I think his little brain is getting a rest. I can’t begin to express how excited I am about this, nor how scared I am. Scared? Really? Because my son isn’t having seizures? I know it sounds weird. But it is a little freaky to me. I worry what is going on in his brain. Is it like the calm before the storm? Is he going to have a huge grand mal seizure any day now? Or is his brain just working a little better? Did his brain make some kind of growth that is causing better communication between the two sides resulting in no seizures? Or is something really scary going on in there that we just don’t know about? I think I must be some kind of freak to worry so much about this but I do. One thing I do know is that seizures are sometimes caused by factors like stress, being tired, stimulation, etc. I think Jackson has gotten rid of a lot of stress and pain over the last couple of weeks since those last two teeth came in. He has definitely been a happy, happy boy lately and seems more content. Put the kid in front of the TV with cartoons, give him a dinosaur to bite on and he is happy. It does really seem like he has changed in the last couple of weeks and I don’t know why. Just like I don’t know why the seizures have stopped. I don’t miss them, that is for sure. I just hope that his little brain is ok and has just decided it is tired of seizing. I think the really scary thing is that I don’t know my son without his seizures. They have become a part of who he is to me. Just like all his other special quirks, the seizures tell me he is Jackson. Now here is a new little boy who isn’t having seizures, seems happier, is sitting up for long periods of time, is content to just sit around and bite on a dinosaur head, and is seriously watching cartoons. Who is this kid? With or without the seizures I am loving watching my boy change. He is so cute and funny and every time I look at him my heart tries to bust out of my chest in a huge leap of love. I know the seizures haven’t left, they are still there. But for the time being - stay away seizures, give my baby a brain rest.