One of Brayden's many appointments this week was with his neurologist. I explained to the doctor our concern with the change of Brayden's seizures over the past few months.
Until recently Brayden's typical seizure would be to turn his head to the side, one side of his body would be tense/tight and the other side would twitch. Now most of his seizures are his entire body. Imagine the gymnasts on the rings. They do something called the iron cross. Brayden's seizure look similar. His arms and legs completely extend and sometimes he lifts he head up so much that it looks like he is doing a stomach crunch too. These seizures look terrible. He has them 3-4 times a day. His breathing does change during this seizure, he grunts seeming like his breathing is a bit labored.
Brayden actually did the iron cross seizure (as Jeremy and I call them) in the neurologist office.
Here is the concern...
Since two months old he was diagnosed with partial complex seizures. Meaning the seizure was coming from only one part of the brain. The doctors concluded this by a few EEGs as well as seeing his seizures (I videotaped many of them). This new looking seizure is looking more like a generalized seizure since his entire body is involved, thus the seizure is happening throughout the brain. According to the neurologist this is not uncommon to change from partial complex to generalized.
We are awaiting an EEG on May 20. EEGs are a stressful process. It is not painful. The technician must put a couple dozen electrodes on Brayden's head and the electrodes must stay in place...hard to make that happen with the wiggly child.
If they find that his seizures are looking more like a generalized seizure then it should just be a medication change.
Here is where the neurologist scared me a bit...
The seizure is involving his entire body. This could be a potential for breathing problems. Brayden has yet to have breathing problems with his seizures (although a good temper tantrum of his and he can make his lips purple). There is always a warning with breathing problems and seizures, especially if the seizure last too long. This is first time we got a real warning about Brayden's ability to breath during a seizure.
I am a bit more on edge about his seizures now.
Then last night Brayden had a bad series of seizures, we gave him the Diastat (his rectal dose of medication, similar to Ativan). We use this in case of seizures that seem out of control or too many seizures in a time period; if for some reason his daily seizure medications do not do the trick.
I checked on him several times after putting him to bed. He slept fine...me, not so much.
Today, Brayden was not acting himself. Possibly because of having some bad seizures the day before or a hangover from the Diastat. Brayden had a not so good seizure this morning and then after nap time he had a long seizure...too long for my comfort. After snuggling in his daddy's arms for a bit, he is sleeping peacefully now.
I am hoping that the EEG will provide some answers so the neurologist can adjust his medications. Seizures are not fun.