Our Trip to Minnesota Epilepsy Group

OK we are back!!! We got back late Friday night. Oh it is so great to be home, and we are glad we didn't have to stay a whole week.
Basically for everyone that doesn't know what has been going on the past three weeks here is a quick summery:

January 30th Dallas had a lot of seizures at school in the morning, they call Jeff and I and we rushed to the school. On the way there to the school, the nurse call and said they call the EMT's and that they were on their way. So I got to the school and the ambulance was there, I rode with Dallas to the hospital and we were at the hospital until about 2pm they did some blood test and everything came back normal so they sent us home. We were really frustrated, but we couldn't do much so I road back with Jeff and Kayla to get my car back at the school.

On the way back Dallas had a seizure in the back of the car with me, but it was short. We got to the school said hi really quick to everyone and as we were going to leave Dallas had two short seizures. Dallas really wanted to come home with me so Jeff said I could take him even though it was his week and they would get him later that night.

Well on the way to the house Dallas was acting different because he had to open everything he could in the car and then close them all and do it all over again, he couldn't stop and then started having more seizures so I got him to the house and gave him the emergency med. (Valium) and it zonked him out so he couldn't move until he would have a seizure.

SO the Emergency med didn't stop them so we took him back to the hospital. Well long story short we stayed till Sunday, the Neurologist on call put him on some meds called Ativan. that made Dallas go crazy while he was on them screaming the whole night and having nightmares and hallucinations so after a night of getting zero sleep we told them to never give it too him. Then they started on Depakote, made Dallas a completely different person. Basically the exact opposite of our little boy, He would scream and throw stuff at us, try to bit and hit us and then after a couple hours of that then he would pass out. We gave the Depekote to him on Sunday night (the night we got home from the hospital) and then decided we would never give that to him either.

But the Crazy thing is, is the Neurologist argued with us and the nurse about what the side effects are. She tried to tell us that Ativan doesn't do that and that it is impossible for that to be the cause. She is an idiot, She was also the Neurologist that I took Dallas to when he was a little baby, and she told me then that he would be blind, never walk and would never be able to do anything on his own. Wow she was wrong again. So if you need to take you kid to a neurologist don't go see her!

So then we got to talk to Dallas's Neurologist on Monday and he gave us another drug to try called Topamax and Dallas was doing better but still have some seizures, maybe one seizure a day but the next day he could have from 3-8 seizures, so its better but not good enough so on Mon. Feb 16th we drove up to St Paul, Minnesota to take him to the Minnesota Epilepsy Group, P.A. We were there until Friday, Feb. 20th.

They had him hooked to an EEG the whole time and finally on Wednesday he had a seizure. So they got to see it. Dallas had two other seizures that didn't show up on the EEG but because he has Frontal Lobe Epilepsy it is hard for them to show up. Some Doctors might say that some of his seizures are a nonepileptic events but after looking at the video and talking to Dallas not to mention when he was having some of the the harder seizures to distinguish you can pinch him and there is no response. And Dallas is really good at telling us when he is having one and when he isn't.

So anyways after talking to the Doctor (which we really like, he is great) He thought Dallas might do better on a different drug called Lamictal. So we are trying that right now. The Topamax that he was on has some side effects like Confusion, Dizziness, Difficulty thinking or talking. So we felt it was making it harder for Dallas to communicate, and as you all know Dallas has a hard enough time with that as it is so we are going to try this new drug. He is still on his Trileptal too and if his communication doesn't get better they will take him off Trileptal too because that has similar side effects too.

But with talking to the Doctor, after he looked at Dallas MRI he was very impressed with how well he is doing and functioning and how smart he is. He told us that even though Dallas has a section of his brain that didn't develop completely, the rest of his brain developed very well and looks very healthy. The reason why Dallas all the sudden started to have seizures is because as he grows and learns more he starts accessing more parts of his brain. Well he has moved into that section that didn't develop completely, (that section is also the section that you use in communicating but the area that he uses to understand and comprehend developed perfectly. That is why Dallas understand everything but has a harder time speaking.) and that is why he is having seizure now and not when he was younger.

So the Doctor also told us that it can get worst as he moves farther into that section. So that is why it is so important that we get the seizures under control now so that they don't get out of hand.

We are just going to be testing out this new drug and so far is working great. We will keep you all updated. Thank you everyone for your support and help.