Medications are a necessary evil. Trying to figure out the right ones and the right dosages… Sometimes I wonder if Michael would be better off without some of his meds.
On Christmas Eve last year, (about 1 month after his emergency brain surgery for hydrocephalus) Michael had his first ever seizure. At least, that’s what we thought it was. They were few and far between for a while but then they got more frequent. We started him on a new med earlier this year to treat his seizures (called Keppra) but it didn’t seem to make much difference. The seizures (or “episodes” as we now call them) would come in clusters and sometimes he’d go a week or 10 days without one. Then, these episodes began to have some other symptoms along with them that made us think that they were not seizures, but PAID episodes.
Just a quick recap – Michael was diagnosed with PAID syndrome in the fall of 2012. PAID stands for Paroxysmal Autonomic Instability with Dystonia. Basically, all of his autonomic functions (things that the body controls automatically like respiration rate, heart rate, blood pressure, body temp, pupil dilation, hiccups, muscle spasms, etc) go haywire all at once. It is a painful to go through and thus, very hard to watch Michael experience.
So, we started the process of weaning him off of his seizure meds (since we are thinking he’s not having seizures) and he did great with that. He did not have an increase in the number of episodes with the lower dose of Keppra. So, we then began increasing his Clonidine (the medication used to treat PAIDs). But now that we have increased his Clonidine, his episodes are MORE FREQUENT! WHAT THE H***? He has had about 5 episodes in the last 2 days. He hasn’t been very comfortable and isn’t sleeping as well. This makes no sense.
You may be wondering if we did an EEG to see if these episodes are seizures…Well, yes we did. However, the brains of MLD children will always show an abnormal EEG but that does not necessarily mean that the are having seizures. When we saw Dr. E in Pittsburgh in July and we described what these episodes were like, she said she thought they sounded like PAIDs and Mike and I agree. So we are back to the drawing board – I guess maybe a 48 hour video EEG is what we need to do. My only concern is that these episodes come in clusters so what if we schedule the EEG and he doesn’t have one at all? Then we have wasted 48 hours of testing just to find nothing and get no answers. I’m at a loss right now and my heart just breaks seeing Michael go through this.
On a side note, I had a thought yesterday… I was at the hair salon and I saw several old ladies accompanied by their adult children taking them to get their hair done. Just as I will take care of my parents when they need me, these children were taking care of their parents. I got sad thinking, who will take care of me and Mike when we are really old? We won’t have children or grandchildren to care for us – to spend time with us. I just can’t believe that I will live my life without children to watch grow up…
I’m okay – it’s just certain situations at random times that make me sad for a minute. Then I get home to Michael and all is good – he always makes me feel better. I just love him so much. More than anything ever.