Weaning off Vigabatrin/Sabril

After our appointment with our neurologist., we are now beginning to wean Kaleb off of his Sabril.

This will occur over one month, with his dosage being reduced each week.

As we’re lowering the dosage slowly, we’ll be able to observe whether Kaleb has any other types of seizures.  If so, we’ll know what dosage of Vigabatrin is required to keep those seizures at bay and we would begin treating them with a less powerful medication.

Our neurologist seems pleased with Kaleb’s progress, though he acknowledged that Kaleb’s speech skills should be stronger.  Kaleb recently has been advancing in this particular area, so I’m sure he’ll catch up soon.

We’re basically back on a tight vigil for the next couple of months as we monitor Kaleb for signs of either recurrent hypsarrythmia or new types of seizures.  Our neurologist thinks it’s very unlikely that hypsarrythmia will return, as he hadn’t seen such a case where an EEG was so clean for so long only to be followed by a relapse.

Good News!

We got the results back and the EEG is normal AND no hyps! Which means the seizure Thursday is most likely a one-time thing from the combo of things that week and less likely an ongoing thing. Huge relief!

Kakb unfortunately still has a 103 fever today, so the doctor ordered some lab work. Hopefully we’ll get some answers soon…but more importantly, hope he gets better soon!

temperature back down and jabbering

Less than an hour after our vacation flight left without us, Kaleb’s temperature came down to normal.  There was still some Tylenol remnants in that, as he’s gone back up to almost 101, but he’s clearly much better than he was.

At dinner, mommy called grandma and Kaleb started talking as though he were part of the discussion.  Mommy held the phone up to him and we could see him really trying to enunciate words.  It’s really heartening to seem him wanting very much to speak.

Bad news

Got off the phone with the on-call neuro, who said it was most likely a different type of seizure. Said that since it didn’t last longer than 5 minutes, it’s ok for now, just monitor him and maybe it’s a one-time thing bc of the vaccination or because he just had roseola. But if it happens again, be it today, tomorrow, or months from now, we need to let them know right away because that would mean he’s possibly transitioned into other seizure types, which we were hoping (and still hoping) wouldn’t happen. Praying hard for our little boy.

update

For clarity.

I noticed Kaleb start moving around while he was sleeping while mommy was putting B to bed.

I thought he might be going back to sleep, but thought he also might be waking up.  It looked a little unusual to me, but not alarming.  In retrospect, if asked, I think I would’ve suggested that he was sleep walking (we always assume seizures, but being that I’m convinced we increased his dosage when he wasn’t having spasms, I think that we’re not very good at diagnosing seizures).

I swapped places with mommy and a short while later she yelled for me and I came back.  In between that time he was jerking his head repetitively to one side.

Kaleb had his HEP-A vaccine just this morning (due to the Costco berries).  He also mostly refused to nap all day, getting only 20 minutes, where he normally gets 3-4 hours.

I wish we could just have a little sleeping hat on him that would constantly provide an EEG monitor.

Catch-Up #1: Update

Things have been so busy! We went to the zoo for B’s birthday, then the epilepsy walk, then B got sick, and now Kaleb is recovering from roseola. And did everyone hear of the organic frozen berries from Costco that got recalled? We went through 3 bags of that. So we got the whole family tested and are in the process of getting vaccinations as well. Plus, we were already catching Kaleb up on his shots, so we will continue that course as he is recovering.

Since our last update, Kaleb got his SMO braces for his feet, an abdominal binder for his low tone and pectus excavatum, a thumb brace for his left hand, and we’re in the process of checking insurance coverage for ordering a $900 soft body orthosis called TheraTogs, at the recommendation of his PT at CCS. He can now stand by himself a bit more with support and can scoot/climb over small inclines and obstacles. Being sick stalled him a bit but he’ll be back in no time, we’re sure!

Petition on nanotech in the brain

I’m a little skeptical of the research (or at least the medium-term possibilities), but reading the story, I feel terrible for the family .  He has a daughter with Infantile Spasms that has been continuing unabated for 13 months now.  That means she’s most likely about five months older than Kaleb.

Kaleb had actual full blown spasms for less than a week.  It was such a bombshell that we were simply in grief and reaction mode the whole time.  That week gives us nightmares now, which means this guy and his family are learning to live with our nightmares.  I’m signing it because it’s useful, if far off, research, and because this guy needs to know a whole lot of people are with his family.

Petition on nanotech in the brain