Thankful for Good Drugs

We’ve begun the great Pheno-wean of 09. This is thrilling stuff, I know.

As I’ve mentioned before, we began weaning Charlie off of Phenobarb a few weeks ago and switching him over to Keppra. We weren’t having a problem with seizures, but I was concerned that he was a little mellower/sleepier than I thought your average two-year-old should be. Also, when not actively engaged, his eyes often had a glassy/half-mast appearance. I didn’t know what effect the medicine was having (if any), but many parents reported problems with lethargy and Phenobarb, so I thought it was worth investigating an alternative.

I am SO glad that we did.

Don’t get me wrong–things aren’t perfect, but it is soooo much better than where we were before.

The first three nights after we started the wean, we saw a few jerks–like when you’re dreaming and then you think you’re falling. I did a lot of googling and couldn’t get a real clear answer on whether or not this is considered seizure activity. Those have gone away now.

Charlie is now sleeping less and he’s more restless when he does sleep. He goes to bed on time and wakes up at the same time, but his nap has almost disappeared. It’s a cat nap. For the record, the neurologist assured me that Phenobarb was no way affecting his sleep habits.

Those are the negatives. Ever the conscientious journalist, I want to give you both sides of the story.

The positives are really good. The first thing I noticed was that he didn’t seem to wear out as quickly. After a rigorous PT or OT session, he could still keep his eyes open. Then, he started to become more visually attentive. The vision thing is cool. He looks around more often and with more purpose–you don’t need flashing lights and music to get his attention. His eyes look brighter. I’m seeing less cross-eye when he tries to focus. The PT noticed his vision when she saw him earlier this week. He’s also more interactive. He giggles more readily, but he’s also quick to let you know if he’s unhappy. I guess some people would view that as a negative, but not me. . . I want him expressing himself.

We’re currently at 25% of his original dose of Phenobarb and pretty close to full-strength on the Keppra. I can only hope that the rest of the wean is as smooth. Do me a favor and knock on some wood, kay?

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  1. Mamá Terapeuta says:

    Excellent news! I think you can relax now, 25% of the dosis I believe it's nos therapeutic anyy more, so… You are done!! And I'm really happy for this change :)

  2. What awesome news! I am so thrilled that it is going well. Hopefully it continues to go smoothly and you see more positives as you go.

  3. therextras says:

    I'm thankful for your continuing reports on Charlie's progress. knock, knock, knockin'. Barbara

  4. Good news, Katy! When Faith was on Phen. the neuros DID say that it caused sleepiness. Who knows what all these meds do! Knockin' on some wood for ya! BTW, I am going to post about our handicap features in the house…Thnks for the good idea!

  5. Wood has been officially knocked. Good luck!

  6. I just kicked the crap out of some wood. Damn splinters…

  7. Amazing news!!! Looks like things are progressing in the right direction!! Woohoo Charlie!!!

  8. Wherever HE Leads We'll Go says:

    I am so glad to hear this! We definitely noticed a HUGE difference in Emily when she stopped taking Phenobarb. Glad that things are going well so far. You are in the home stretch now!

  9. I don't know. Could just be a toddler thing–Merrick sleeps the same way these days–restlessly and almost zilch for a nap. But as for the postives–great news!