Just when I thought everything was going well and we were making some progress….BAM got slapped in the face with my son having seizures. I was going to write about what our homeschool week was like last week but instead I have decided to write about what is going on.
Yesterday we are sitting doing homework. My son says that he felt off. He proceeded to tell me that he passed out twice in his chair on Saturday. He told me to ask our family friend who was here hanging out. Well I had to wait until 2 because I had to pick him up from work yesterday. Dakota also mentioned that the tremors in his hands were getting worse. You have to understand he doesn’t let a lot of things bother him and he doesn’t always tell me things until later. So I know that they are becoming an issue.
Last week I started to take his blood pressure because he was becoming symptomatic. He was starting to display some of the sign I have for nuero cardio syncope which is something that can be hereditary. On top of that I haven’t done that since he was finished with the clanazpam that he was taking. It started out that Thursday and Friday his bottom number was on the normal low end of the ranges and yesterday it was really low. I was baffled because when we last saw the cardiologist she said that she didn’t want his bottom number over 80 and as of yesterday we hit 5 readings. So I am still confused.
I wasn’t sure where to start so I called the neurologist. I let them know what was happening and I told him about the last seizure I seen. They told me to call the cardiologist so we can rule out cardio before we move on. I was fine with that because at that point I was thinking it was a possibility he had what I had. He said if the seizures and tremors got worse we would do another EEG. I wasn’t really happy with the idea because to me those tests are worthless as they give the here and now results. I did get clarification today that the large spike they did see in the last EEG was seizure activity, however the EEG was normal.
I decided to set up an appointment with the family doctor. Our normal doctor is still out for maternity leave. So I had to see the next best one and she is amazing because she totally understands my feelings about things. I don’t know how abnormal his neurological testing was because she doesn’t know him like our doctor. Let me pause here so I can fill you on how this is about to change everything.
So I picked up our family friend and he proceeded to tell me that the whole episode was very strange and in a way scary to him. Dakota kept saying during the episode that he was zoning out. He was also talking in gibberish and could not be understood. I looked at him and said Dakota was having partial seizures. That made a whole lot more sense. There was also confusion in there as well because at first Dakota came upstairs asking where the breadsticks were even though he didn’t see my husband bring it down. He also talked about the pizza and didn’t realize he ate most of it. He asked our family friend how long he was out of it and he answered about an hour. This by far is the longest he has ever been in a seizure. I immediately called the neurologist back so they would know that this was more serious then we thought it. I forgot my phone and had to call this morning.
The family doctor said that Dakota has an ear infection. This totally explains the seizure. Now for the next 10 days he is going to be in what I call seizure danger mode…. I don’t mean danger but we have to be vigilant. It’s a catch 22, one side because he is sick will lower the threshold for him to have seizure and the other side the antibiotics lower the effectiveness of the meds. So I am not really crazy about this since I am suppose to be going out of town. I am nervous as my husband has never seen any of the smaller seizures except the blinking ones and a grand mal that he did have. The doctor said that it is possible he could have had both seizures and a nuerocardio syncope episode. She was leaning more towards the seizure. So she told me to keep the cardiologist appointment.
I talked with our nurse from neurology this morning and she already knew about my phone calls yesterday. I explained to her what happened Saturday and she said yes those were definitely partial seizures. The concern was that this is the first time it was an hour long. With his current weight it is considered he is on a baby dose. They are probably going to up his seizure meds. I also have a feeling we will be back in Milwaukee sooner then I want to be after next week for a EEG. I told her I wasn’t as worried about the tremors but I do think they are worse in the morning. I said I can wait until we go next week. So I am now waiting to see what they are going to do.
I am honestly worried that a grand mal is coming. I am worried about leaving for the retreat this week. I am just finding it hard to be strong. This poor kid has been through enough. He gets frustrated because he doesn’t know these episodes happen. He gets frustrated when I am on the phone with the doctors. He says he is fine. Ugh I just wish he knew just how serious some of this was.
I guess this is the part where I dislike Autism and the seizures go hand in hand with them. I seriously thought we were making some progress.