When it all started..... to current situation

When Teydon was about 2 and a half he had his 1st grand mal seizure ( Grand mal defined ), doctors said that it was just a coincidence and probably will be his only one. A couple days later he had another, they did a MRI (it was clear), and an EEG it showed seizure activity. We didn't want to put our little guy on medication so we went a natural route. He would go months in between seizures so we were hopeful, until about a year after we started the natural drops he had 2 grand mals only a day apart and during a time he usually didn't have any seizures, so we decided to put him on a medication and do the natural drops.
Keppra seemed to work for a few months then on vacation in Cali he had a bunch of grand mals, we started upping Keppra until he eventually maxed out. Around the same time he maxed out he started to have drop seizures ( Atonic ) and ( Tonic seizures), these happen all throughout the day.  They decided to start him on Lamictal and see if that would get them under control. We ended up maxing him out on lamictal too and it wasn't helping control the atonic or tonic seizures, the grand mals were under control.
With lamictal there is a side effect of a serious blistering skin rash and one day he got a rash on his stomach, that wasn't induced by anything else, and I was worried it was the rash. It ended up not being the rash but it still made me nervous so we decided to take him off lamictal. It was an 8 week process to get him off. He was completely off the weekend of Thanksgiving (2015), while on vacation that weekend he started to have multiple grand mals, only during the middle of the night, early morning. We waited a few days to see if he needed to level off lamictal and we had a family fast to see if we could get guidance on what to do. We decided to put him a very low dose of lamictal just to the point that the grand mals were controlled again. It worked for a week-2 weeks but then the grand mals came back.
I called his dr at Primary Children's (well we leave a message with a nurse, who then talks to the doctor, then we wait to hear from her) about upping lamictal. Teydon's primary Dr. had told me about a pediatric neurologist, Dr. Morita, who had left Primary Children's and started her own practice. After waiting for 4 days and not hearing anything from PC, we decided to give Dr. Morita a call. I was able to get an appointment the very next day, and she had multiple times available. With PC you had to wait 3 months for an appointment!
Tuesday, January 12, 2016 Dr. Morita suggested taking him off lamictal immediately, and putting him on a new med zonisamide or I call it Z. It will take up to 4 weeks to get up to full dose, with room to increase it. She also wanted him to get a couple blood draws 1 to check his levels from being on meds the other is for genetic testing. She is also wondering if he has Doose Syndrome. We won't know until we have the results from the genetic testing. We had his blood drawn on January 18, he handled it pretty well, mainly cried. Dan held him and I had to help hold his arm straight. He might not do so well the next time we need to have them drawn, hopefully that's not for awhile. We got the 1st results back and everything looks good, his vitamin D is low so just need to get him on a multi-vitamin. We won't have the genetic testing results for a few weeks.
Currently nights are pretty rough, he has 7-13 grand mal seizures, while he is sleeping, they start sometimes after he's only been a sleep for 30 minutes. They go from being 2 minutes to 3 hours apart and each one lasts 1-2 minutes. He's finally able to fall into a deep sleep around 9:30 am and sleeps for 3-4 hours. During the day we have noticed the atonic, and tonic seizures have slowed down little, enough to notice anyways. The grand mals are effecting him, its hard for him to walk up right, its like he doesn't have any muscle tone or coordination. When he first wakes up it is hard for him to talk or get the right words sometimes. It's also effecting his hand coordination. We are hoping once we get these grand mals under control that everything will come back to him.
We are very grateful for everyone's thoughts, prayers, love, and service towards Teydon and all of us. There may not be a lot of changes but when there are I will update his blog.