*To all my Facebook friends sorry if this is a repeat of what I have been posting about all week but I am using this blog as a journal and a resource for other people who are interested in reading about the special needs life. And also family and friends to keep up on our lives. Thanks for reading.*So about 4-5 months ago we started noticing a new behavior in Evan. His head would go back and he would lose his balance and sometimes fall. It would only happen about 3-4 times a month, and at that time I thought maybe these could be seizures. I ended up calling the Neurologist's office after Evan had a prolonged seizure about 4 weeks ago. When I talked to them about the seizure I asked about doing an EEG to see if these new behaviors were seizures and to also see if his EEg had changed at all. The next day I got a call back that the Dr. would order a Video EEG and someone would be calling me to set it up.
Last week on Tuesday I got an email from Evan's teacher that he had been falling a lot at school and did I think that maybe he was having small seizures. I told her that I had suspected it and I was working on getting an EEG. The next day she called at 11am (only 3 hours after school started) and said that he was constantly falling and it was becoming a problem. I decided that I should pick him up. Already after Tuesday I had decided to call and see what the progress on the EEG was. I talked to the nurse about what was happening and she said she would inquire as to what the hold up on the EEG was. I got a call back from her and she gave me the number to Digitrace which is the company that does the EEG. This is so we can do an ambulatory EEG vs having to be stuck in the hospital. I called the company and was told the person who schedules those is out of the office at lunch. I left a message but she did not call back that day.
The next day Thursday I got a call from our Neurologist's office again and they wanted to know if I had heard from Digitrace. I told them not yet but I would be calling again. At that time I was at the lab with Evan getting his med level checked. The nurse gave me the number for the EEG Tech Dawn, and I called her. She was very understanding and scheduled Evan's EEG for Monday morning at 10 am. (monday 9-13). Dawn is so awesome and she also has a child with special needs who has seizures so she gets what I am going through.
Over the weekend on Saturday Evan had about 3o seizures, at that time I was not for sure that they were seizures but my gut was telling me they were. On Saturday afternoon after seeing too many of these seizures I decided to call the Dr., I was not sure how many were too many. The Dr. said he was not sure they were seizures and thought maybe it was a Tic. I was pretty certain he was wrong and decided that he should get the benefit of the doubt since he had not seen them yet. And since we were doing the EEG on Monday I could wait it out. It was so hard to wait and see my son suffer these spells over and over again. Thankfully, they were short and did not affect him except for him falling. I was so happy when Monday morning came. I was worried that he would not have any spells while the EEG was on. Murphy's Law and all that. Well, turns out I did not have to worry at all. I logged 23 episodes in a 22 hour period. Since this was a Video EEG we had video of it also which was great. Evan's Neurologist sure got an entertaining look into our family life. LOL.
I have to reiterate what a great Dr. we have. And this includes the office staff and the other Drs. in the office as well. Once Evan was disconnected from the EEG, the disc was given to the Dr. later that day. Evan was disconnected at 10am and the Dr. called and left me a message at 1:41pm, 2:37pm and called again around 4:30pm to tell me what the results were. I was so impressed that he called 3 times to make sure he got a hold of me.
So the Dr. reported that Evan was having seizures and he wanted to see him in the office the next day to talk about medication options. He told me that the seizures were starting on the right side and then progressing to both sides of the brain. He asked that we give Evan 1 dose of Diastat (rectal vallium) at 5pm, and then another dose at 8 or 9pm to see if that would help slow down the seizures. Already on Tuesday at almost 5pm he was at 12 seizures. So we gave the first dose of Diastat and then about 10 minutes later Evan had a BM so we don't think too much got absorbed. The 2nd dose was given at 8:30pm and it sure made Evan lethargic and floppy. It also made him really cranky and he had a harder time going to sleep. He woke up fine and so far today has not had any seizures.
At our appointment with the Dr. today. He told me that Evan's EEG was the worst he has seen on Evan. He said that he is having almost constant activity while sleeping. He showed me a few sheets of the EEG during seizures. I love this about him, how he explains things and shows visual images not just words. So we talked about medications. He wanted to put Evan on a medication that is approved in other countries but not yet in the US, it is perfectly safe and has been used in Europe and Canada for the last 10 years. But it would cost us $50 a month and that is just not in the budget right now. So we decided to try another drug called Topamax and see how that works.
So the plan is for Evan to take his current med which is Depakote, instead of taking it 2x a day he will now be taking it 3x a day. Adding to that will be the new med also 3x a day. Along with these he takes his medication for drooling. So now I have to arrange for him to have medication at school. I am going to start this process tomorrow and then have the school start giving him the med on Monday. I figure it will take a few days to get it going.
Finally, we talked about the plan of action for cluster seizures and when to use his Diastat. So the protocol will be to use the oral Diastat when he has had 3-5 seizures in a day and then if that does not stop them I can give the rectal Diastat or give it for more that 5 seizures. This is such a weight off my shoulders because I felt so helpless watching him have 20 seizures a day or 7 seizures in an hour and not being able to do anything. Now I have a plan and it seems that this would work to stop the clusters.
I really hate seizures but this is just a part of our life so I can hate them but I still have to deal with them. Having Evan have multiple seizures in a row and have them during the day while he is awake is new territory for us. But I feel that I am doing all I can for Evan to help keep the seizures under control. Hopefully, these new meds and stuff will work.
