B has many doctors and other specialists. Currently she has a neurologist, a pediatrician, a GP, a ear nose and throat specialist, a sleep specialist, a pshychiatrist, a therapist, a public health nurse, and in September she will see a special pediatric gynecologist. These are all the people who are currently actively involved in treating her various health concerns.
As you might imagine, it's a bit exhausting for both of us. This is certainly not a comprehensive list of everyone who has been involved with her, nor does it include the therapists I hope she will see soon, nor all the people at school that are involved in her care and education. Education will get its own posts.
Today we saw her pediatrician, the doctor who has been with us the longest. He was the first doctor she had, as he was in the room when she was born, and we both like him very much. It is very important to get doctors and other specialists that we feel very confident in, because so many of the treatments B gets are trial and error. When you are dealing with brain injuries there seem to be no clearcut answers, the brain is very complex. Healthy brains are complex enough, and an injured brain, well, that is an area where you tread lightly with those trained in treating an injured brain as your stick.
Unfortunately, B's seizure meds don't seem to be working very well. When she was born she was on Phenobarbital, but only briefly, and when she came home from the hospital she wasn't on anything for the first couple of years as she seemed seizure free. When she was about two, she started having Tonic Clonic seizures, so she was started on Clobozam and I was trained to administer Diazepem per rectum for long seizures. She seemed seizure free at about five years old so she came off the Clobozam. When she was seven she started to have Absence episodes. It took me quite a long time to figure out these weren't just attention issues. She was was put back on the Cobozam, but this time the results were horrible. She did not sleep for more than a couple of hours at a time for over a month, which left me a crying mess. She was then put on Lamotrigine. This worked for awhile but then, despite ever increasing dosages, slowly stopped working. Last winter it was decided to add Epival to the Lamotrigine. The Lamotrigine dose was brought down, and the Epival added. For the last month and a half she has been on 100mg Lamotrigine twice a day, and 500mg Epival twice a day, and she is still having several seizures a week. The seizures she is having now are Complex Partials. Last Sunday she had two and slept for most of the day.
So, now we will look at changing her meds yet again. It is a daunting process, as each old med must be carefully and methdically lowered and only when she is off can the new meds be slowly and methodically introduced. It takes a long time to even get them to therapeutic levels, let alone to see if they work, and then adjust them and give them time to stabilise.
Every medication change involves having EEGs done. B has an EEG about every six months. She is such an odd duck that she LOVES having EEGS. Not so much for the actual examination, but because I learned when she was just wee that the child will absolutely not sleep for them, which is ideal, if she has had even a couple of hours of sleep the night before. So I have to keep her up the whole night and then, hopefully, she will sleep. Even then, it's not guaranteed she will sleep. I have kept her up all night and had them give her a mild sedative and still she has not slept. But she loves staying up all night. A couple of times a month she will come to me, hope in her eyes, and ask, "Do I have an EEG tomorrow? I forget," and I will say, "No, honey, you have to go to bed tonight," and she is disappointed.
I'm not. I like sleeping.