The Long Story to Jake's Diagnosis

Rewind to July of last year (2010). We were living in Utah at the time. One afternoon, the boys and I were outside in the backyard/greenbelt behind our townhouse. I was sitting on a blanket in the grass and Jake was playing with his dump truck to my right. Out of the corner of my eye, I saw his little body jerk for just one quick second. I turned my head to look at him and wondered what I had just seen. Did he just have a shiver? Or was it what I immediately feared.......a seizure. I worked in pediatric home care as a nurse for several years, and most of the children that I took care of had some type of seizure disorder. I had seen so many different types of seizures from grand mals, to staring episodes. They are not fun to watch and can often be difficult to control. When seeing my own child show possible signs of a seizure, I became pretty nervous (big understatement!). I watched Jake pretty closely the rest of the day, but I didn't notice anything else strange. As time went on and nothing else strange happened, I would forget that the whole thing happened. I think it was about a month later when I thought I saw Jake jerk again. I still questioned what I was seeing, but, as a nurse and as a mom, I knew it wasn't normal. In the meantime, Curt accepted a job offer that moved us back to Arizona (Yay!). His new job would start out with no insurance so we had to carry COBRA. After realizing that we couldn't afford to pay $1200 a month to keep the whole family covered, we knew that with my medical history, and by the advice of my doctors, that I should never go without coverage. So we opted to just keep coverage for me. During the fall of 2010 up until about the beginning of December, I noticed Jake's episodes more often. Curt was working in Florida most of the time and there were a few times that I called him at night crying....feeling like a horrible mom to sit and watch my little boy have these episodes and not do anything about it. The simple fact was, we had no insurance for him and we had no money to pay for doctor's visits and tests that I knew they would need to run. We applied for state ACCHS three times!! Each time took about 30 days to get a response from them....only for them to tell us that we didn't qualify or some other dumb reason. So, Curt would re-apply and the whole process would start over. Such a frustrating and emotionally draining time for me. In January, Curt and I felt strongly that he needed to find another job. Long story short, he was able to get hired on with Layton again at the end of February, but with their healthcare division (building hospitals, medical facilities,etc.)!! We felt (and still feel) so blessed for this opportunity and know that the Lord's hand was in this. It was also about this time that Curt was FINALLY able to witness one of Jake's episodes! I felt so vindicated to have someone else see what he was doing and to know that it didn't look normal. Our whole family was able to receive coverage again and that was probably one of the HAPPIEST days of my life!! Benefits were to take affect on March 1st and I could HARDLY WAIT to get Jake into the doctor. I took him to our family doctor who did some bloodwork first before referring us on to a pediatric neurologist. Turns out, there are not enough neurologists around because it was SO difficult to get an appointment made that wouldn't make me wait for 3+ months to get him seen! I called a few different offices and finally found one who could see Jake in May. We saw the neurologist on May 4th and after more bloodwork (which came back normal), an EEG, and an MRI of his brain...we finally got the results from the neurologist yesterday. The MRI was normal (huge relief!), but the EEG showed seizure activity in the posterior and mid-line parts of Jake's brain. They recorded staring episodes, too, which I hadn't noticed before, as well as myoclonic jerks. Seizure activity increased during his sleep, too, but without the jerks. In a nutshell, she diagnosed him with Epilepsy and started him on a med (Depakote) immediately. Curt and I felt SUCH relief, although what the future holds is unknown right now. We DO know that Jake will be fine and are so grateful for this diagnosis. It could have been much worse. I think of those sweet little kids that I cared for and can't help but feel that I was being prepared for this road that we are now on with Jake.  Hopefully Jake will respond well to the meds without any major side effects. It is possible that he could out grow this, but we won't know until he's probably in his teen's. The doctor also expressed concern with Jake's speech because the area of the brain where he is having seizures, that is the same area that controls his speech. She mentioned getting him into speech therapy as soon as possible so there are no more delays because it would be difficult to get that back. I love this neurologist! She is very thorough and explains everything. She is very concerned about Jake and I feel very comfortable putting his life in her hands. I did express my concern to her about having a hard time getting messages to her. It's a long story. Anyway, she gave me her personal email address so I can contact her immediately if Jake has any type of reaction to the med or if something else urgent happens. We started Jake's new med last night and will gradually increase the dose over the next 4 weeks. We will see the neurologist again in 6 weeks and she will determine if there needs to be any changes. He will need bloodwork done twice a year or so to check his liver enzymes and will have another EEG next year, I think. We're hoping the Depakote doesn't make him too drowsy and that he will still be able to function well in preschool and next year in Kindergarten. The doctor stressed the importance of feeding Jake only healthy foods because this med will increase his appetite and he could possibly eat us out of house and home! So we've made a commitment as a family to only allow healthy food into our home from now on. We're doing this for Jake, mainly, because we don't want him to become overweight. But we ALL need to be eating better anyway. Curt and I are SOOOO proud of our little Jakey! He has been such a champ during all of this testing and poking/prodding. He has never cried or thrown any fits. He quietly does whatever the dr's/nurses tell him to do and is so sweet. We just love this kid so much!!! I can't even describe the feeling I have....to finally have an answer. I'm so grateful to my Father in Heaven.

 EEG 6/2/11