Parker's Promise

Tuesday
I drove up to UCLA for a 6 month routine EEG for a study I signed up for last year when we were in the PICU.  The study is following traumatic brain injury (TBI) and seizures.

I left just before 6 am and only hit LA traffic the last 11 miles. (Those last 11 miles took 45 minutes). I didn't know how bad traffic was going to be so I actually arrived almost an hour early. They got me right in anyway so I didn't have to wait.  I explained what was going on with Parker and just how much has changed in the last 6 months.  Last time I went up was right before Parker's surgery to put the bone flap back in.  Back in February I went up to UCLA Friday, Monday he had the bone flap surgery, we came home Tuesday and Parker was doing GREAT, Thursday he had his first seizure and by the next week he was having 5 a day.  Now he is having anywhere from 9-15 clusters of seizures a day. Each cluster is anywhere from 8-20 "kicks" or seizures.  

I was explaining what they looked like to the neurologist and answering all kinds of questions about his development, medications and tons of other things while they were putting on the EEGs.  The neurologist was concerned and said they sound like they could be "Infantile Spasms," a devastating form of epilepsy because they are really hard to treat and control, and they can really affect neurological development.  My neurologist in San Diego had ruled those out, but UCLA was still concerned.  She said thankfully the neurologist that would be reading the EEG specializes in infantile spasms and should be able to rule them out or confirm them.  Hopefully he doesn't have them, but I have also been reading so much about the ketogenic diet and how effective the diet is for infantile spasms.  Whatever we are doing right now is not working.  Some mornings he seizes every half hour.  Each seizure cluster lasts almost 5 minutes and they are just getting worse, not better.  Either way, his current seizures are hard to treat and either way they are already affecting his development.  

Several weeks ago I went to the hospital for my neurologist appt and I went to visit our old inpatient therapists.  I was so excited to show off his new skills.  They were happy to see us, but I could see it in their eyes that he is not where they expected him to be.  That really affected me and I started to ask questions.  Both to my neurologist and therapist.  Can seizures affect development?  Yes.  They can.  My therapist said they don't often bring it up with parents, but since I asked, she was honest and said yes they can. We are lucky that he has not digressed, but when he is seizing so much, his development takes a back seat to the seizures. Some weeks he does GREAT and makes huge strides, but other times he barely progresses at all.  This is all during the window of time where his brain is still healing from the injury and the most development and improvement is possible.  He is drugged from the medications, his drive is declined....  The more I read and learn about the ketogenic diet, (we are slated to start it in just over 2 weeks) the more hopeful I am to be able to potentially control his seizures and be able to take him off these medications that sedate him, drug him, make him dizzy and just feel yucky. And they don't even work!  Three of the 5 medications we have tried actually make his seizures worse and they improve when we wean him off.  Something is not working and we need a change.  Anyway, back to this week.

I could not have asked for a better EEG scenario.  He had a seizure while they were hooking the electrodes up, which was not recorded, but all of the doctors were in the room and were able to watch how it developed.  Unfortunately the computer was booting up and started recording just as he finished. But, he had another seizure 20 minutes later and then promptly fell asleep and we were able to catch both sleep and a seizure.  Yay!  And we were able to visit the PICU, eat a yummy lunch from the cafeteria (Beef Curry) and not hit any traffic on the way home.  A huge success in my book.  They said I would probably be contacted next week.

Parker only smiles with his right side like this when he his having a seizure.  I am so sad the flash malfunctioned for this picture.  What a sweet little boy we have.

Also- we were approved by our insurance to start home care nursing.  With 3 of my kids in school now, I HAVE to be on my A game when all three get home from school.  I need to be there for them, but Parker needs constant attention and more than I can give him. I am so grateful that we are able to have a nurse come in each afternoon and all day a couple of days so that I can focus on my other kids and some of the things that have been neglected this year.