>> Tuesday, October 11, 2016
All of us, we make mistakes. Some of us make REALLY big mistakes. I made a big one. I know better but still...with the hundreds of seizures Bug has been enduring...mistakes become more likey and diligence is key. WRITE everything down and put dates on calendars. Of which: 'refill prescriptions' should be at the top.
It wasn't and I failed him. I failed with glorious outcomes.
I had been sick and others have been giving Bug his meds. They ask, I reaffirm, they show me and he gets them. What I DID not ask: How much is left?
So we were dangerously close to being out of Lamictal with a trip looming. I went to the pharmacy and they offered Lamotrigine. Lamotrigine is like sugar pills to Bug, for whatever reason, it is nearly NON effective for seizure control but I took a few of them while we waited for the refill to come in and sure enough, the bad seizures got worse. So many of them. The worst seizure day of his life in fact: 50 small tonics.
So Glenn and I looked into our cabinet to see what other sodium-channel drugs we had that MAY help and we settled on Phenytoin. Bug has been on Phenytoin before so I looked it up and found that he did well on it and it made is EEG pretty (as pretty as it has ever been in his life) but we chose to discontinue it when we found out about his Folate issue. The specialist told us it wasn't used in FRa treatment and could make it worse so....we got rid of it.
Turns out that was a HUGE mistake.
We gave him a small dose, to be careful, and the seizures spaced out a little more. So we looked up the dose for his CURRENT weight and we gave it to him. That night he only had 6 seizures and they were ALL in the morning. So we split the dose yesterday and it was VERY interesting. No seizures last night and only two while falling asleep today. While that is cool...it's other developments that are fascinating.
When Bug was a toddler, he would sit on Uncle Jason's lap and listen to music and scroll through songs until he found the one he liked. He would play them with his sister and I have proof (don't judge, he would NOT leave his clothes on):
When he lost that interest (or ability) we mourned. And then yesterday...
He didn't stop there. Later, I gave him a bath. He loves baths and all things water so he was content. Usually he wiggles, splashes and drinks the water but this time he floated and rolled from one side to another, very little splashing. When I wash his hair he has ALWAYS and I mean ALWAYS, even as an infant, pulls away. He will bat ot my hands, duck his head down, or move it around to get me to stop. Last night, he fussed for a few seconds and then...sat there. I washed his hair, scrubbed it in fact, and he just...sat there.
This has never happened before. Ever. Not even when sick. So either we have a good combo of drugs in him now or something else has happened. Whatever it is, we will be waiting not-so-patiently as the clock ticks to see if that other shoe drops. Until then, we will enjoy what we can and hope it continues.