While talking to Deacon's pediatrician, he requested that we (along with daycare) keep a tally sheet of the number of times Deacon appears to have a seizure throughout the day and if that number exceeds 6 times within an hour to let him know and that he will probably suggest sending him the the ER.
The daycare took the data yesterday for the first time. Of course, they aren't medical specialist, but they said they would do their best to document the times when it appeared that he had one. By the time we picked him up yesterday they had counted 39 (and that was not counting the 2 hours at naptime). Needless to say, he had exceeded the 6/hr. quota, and we called the doctor.
We headed to Texas Children's ER after work, went through triage and were told that the longest wait looked about 5.5 hours, but that she would give us some priority. So, we made ourselves comfortable in the lobby and waited. Every few hours we checked in with the desk and they had gotten even busier with some children who had arrived by ambulance and had priority.
Some time around 1:00am they finally called us back. After taking more stats and hooking him up to monitors and waiting a little more, the doctor came in. The on-call neurologist was going to look at his previous EEG and MRI and get back with the ER doctor. Once that happened she came back in and said that he had initially suggesting admitting Deacon for observation and then would be seen in the morning by a neurologist.
Well, due to the busyness of the hospital, there were NO available rooms, so the ER doctor had suggested an alternative: to send home with a one-time use medicine to stop a severe seizure that lasted longer than 5 minutes. She even made some comment about not wanting to admit him in the "dirty hospital with all of the germs" because he was healthy. I basically didn't like her first suggestion of just giving him something to stop a type of seizure he had never even experienced, seeing as that wasn't even the reason for our visit and that I was pretty sure he had been exposed to all of "those germs" in the 7 hours that we sat in the waiting room, and sent her out to look for an alternative solution. Brian said I came across a little "strong" (he may have used another word in place of this), but I didn't embarrass him. I thought that was pretty good since this is our BABY and by that point I was feeling a little sleep deprived.
Dr. Bubbles* came back with a compromise I could live with: an iv with a "super dose" of Keppra (an anti-seizure medicine), along with a prescription of Keppra to take twice a day, and that worse-case-scenario prescription. She said it will take a couple of weeks for the full effects to kick in, and in the first week he may feel extra drowsy until his body adjusts, but by the time we have his scheduled neurologist appointment on Feb. 17th we should have some feedback on how well it works.
Deacon slept through most of our time in the room, including when they gave and took out the iv. We made it home sometime this morning and have spent a lot of the day catching up on sleep. So far we have only counted 5 seizures today, which appears to be a huge decline. I feel better that we are taking some sort of action while we play the waiting game for his next appointment and am praying that we will get many more answers about what is causing the seizures, the effects they are having on him, and if there is a connection between them and his sight and developemental delays.
* Name may or may not have been changed to protect the annoying...
1 month ago