Today was the day I was supposed to go in there and get my kid off of Phenobarb.
I was somewhat successful.
If I'd gotten everything I wanted, I would have started to wean Charlie off of Phenobarb. IF we had seen seizures or concerning activity, then I wanted to start of something else--my first choice being Keppra.
Well, the Neurologist wasn't really having that. She said we could lower his current Phenobarb dose, or we could try a new drug all together. She wasn't really comfortable weaning him off and then playing wait and see with the seizures. Charlie's EEG is pretty ugly so I could see her point. One day I would like to pursue controlling things strictly with diet, but most anti-seizure diets involve cutting carbs and Charlie is currently in the throws of a serious crush on peanut butter and jelly sandwiches. I think this is a normal toddler thing--being obsessed with one particular food--and I'm hoping it doesn't last forever.
I didn't want to keep up the Phenobarb at all--the stuff is a barbiturate and I just don't think he needs to be taking it forever. Her next choice would be Lamactil, but I haven't heard anything about that drug so I countered with Keppra. She said Keppra was fine and wrote out a schedule for taking us off of Phenobarb and putting us on Keppra. I also asked her if she thought we should have some Diastat in case Charlie does have a big, bad seizure. She thought yes, but they don't make Diastat in doses small enough for him, so she gave us a prescription for Va1ium instead. Despite my family's jokes, the Va1ium is for Charlie--not me.
She also asked other Neurologist questions although at this point I do think she trusts me to take care of Charlie and doesn't probe for hours. She was pleased to hear that his vision is improving and also that he could get himself up twelve inch step. She warned me that we would have to stay vigilant about his eyes--his at an increased risk of lazy eye since his eyes don't always function as a single unit. She also reminded me that he needed to be standing every day.
I kept Charlie calm through the thirty-minute conversation with medical students and the twenty-minute conversation with the neurologist by letting him listen to the iPod. Everyone loves watching Charlie listen to his music--he smiles, coos, and sometimes even giggles if a particularly fabulous song comes on (this week Pitbull and New Kids on the Block are popular). At the end of the appointment, the neuro said I should tape him listening to his rap music and put it on Youtube. Little does she know this kid's entire life is on the interwebs.
Tomorrow we'll hopefully start the great Phenobarb wean of '09. I'll keep you posted.
18 comments:
It's good to have a plan...hopefully you can get Charlie off of the phenobarbital soon.
Max has been on Diastat since he was 6 months old. We started on a dose of 2.5mg, when he was 6 months. (I say "been on" but he only has to take it for emergencies.) As he's grown we've done the 5mg, and now at 7.5mg.
Did they give you a prescription for a liquid form of valium?
I've heard of other medicines parents are given to administer in emergencies, like ativan, but the diastat works best for us at home.
Here's hoping you never need to use any emergency meds at home...and you can get Charlie off of Phenobarb soon!
Like Deana, we also have Diastat at home - I think Cici's dose is 5mg, she's 2yo and 23 pounds. We weaned off phenobarb back in June, slowly over a course of 11 weeks! It takes forever! In our case the phenobarb was causing high liver levels. Really high. We're on Keppra now, and I'm not entirely happy with it either. For instance, since we've been on it, we're seeing more seizure-like activity. We increased the dose and it got WORSE. So, now w'ere figuring out via EEG what's going on, and I think we may try something else. Isn't anti-seizure med shopping fun?
Katy,
It took us about 6 months to wean Eli off Phenobarb because we had to go so slow. Of course, we didn't really know him that well back then and we were just doing what we thought was right at the time!
So, it goes in our world!
BTW, they sent us home with a prescription of Diastat when Eli was 3 weeks old and leaving the Hospital! It's a suppository. We never had to use it, but they made a dose for a baby! :)
Good luck!!!
Amy
Good luck with the weaning!
I'd LOVE to see some video of him grooving to the iPod.
You are such a wonderful advocate for Charlie -- such a great mom! Looks like you had a good neuro, too. Glad she's working with you on a plan.
LOVE the pics of Charlie!!! So handsome!!!
Good luck with the switching of drugs! Avery takes valium everyday ...I hate that, but we're trying to stick to it until her next physiatrist appointment so that they can do all the measurements and everything and see whether it really is making any difference at all to her muscle tone. I had heard that it could help with seizures too.
Good luck with the Keppra. Kasia has taken it for over a year with absolutely no side effects whatsoever. The only downside is that her dose is so small that she cannot take it in pill form. Instead we get it as a compounded liquid mixture that lasts only 14 days and must be refrigerated.
Stay strong....switching seizure meds to find the right one AND the correct dose can be difficult. Sometimes an increase in dosage (as ferfischer pointed out) can actually cause seizures to worsen -temporarily of course, until that magical perfect theraputic dose can be discovered!
Much thanks for the correct dose of Charlie photos for this ol' heart (which he has stolen).
I know you know that the appt was not about 'getting what you want' but exactly what you got - a respectful and complete exchange of information and ideas about what is best for Charlie.
Looks like the only thing she and you disagreed on was allowing a no-med trial. Perhaps in time, eh? Like the diet option. I know you know, seizures steal too much from a child. Not.worth.the.risk.
Video would be very, very nice!
Barbara
You always seem to have such a good handle on these hard decisions. Do you feel like you weight risk versus benefits well? Because I don't know someone who does this as well as you. And I mean that seriously. I'm not good at level-headed, balanced thinking when it comes to big decisions. Do you think you've always been this way, or has motherhood demanded this of you so you've had to become good at it?
Gosh Katy he is such a cutie! He looks so good in these pictures! I am so excited for you that are you going to start weaning him off. That's fantastic. Good luck with it!
Ok--I've done a little research and apparently Valium and Diastat are in the same family. The thing I wasn't able to get was a Diastat Accudial, which comes predrawn and ready to inject--good for keeping in your purse or car.
First, the pictures are adorable! What a handsome boy! Love the profile pic!
Great job with getting him off Phenobarb. It made a huge difference in Emily's personality when she came off that drug. We felt like we were finally able to see the real her for the first time in her life.
I know that you were hoping Charlie could be drug free, but I think you did a great job making your case and doing your reasearch beforehand. I have no doubt that you will revisit the drug-free topic again with the doc - at some point she has to wear down and give in, right? I hope the switch from Phenobarb to Keppra goes well.
I love the pics of your beautiful, beautiful boy!! His smile is infectious!
Sounds like you and your neuro communicate very well and that is important. Hope the med changes go smoothly.
And PS, nothing wrong with a little valium for your own self!! Just sayin!
Never, ever easy to play the Med Game. Which one, what works, what doesn't? Makes you want to bite somebody in frustration. Especially a person in the medical profession. Just bite down and chew for 2 or 3 minutes.
Of course that's just me, and I am frazzled from being prescribed the wrong meds right now.
BAD doctor, BAD doctor!!! Sit! Stay!
That self-prescription for Valium might be a good call, though. :)
sounds like good progress, and I'm particularly pleased to see your doctor seems to listen to you. What kind of music does Charlie like? My daughter is crazy about Laurie Berkner and listens to her every dr appointment, and especially in the hospital.
All of this is so familiar, from the phenobarb to the Keppra to the Diastat to the keto diet. It's a bummer that our kiddos have to go through all of this, isn't it?
I hope that the Keppra works well for Charlie.
How old is Charlie by the way?
Whooo Hoo about the meds, as well as can be expected. I hope Charlie kicks it quickly! LOL!
Good luck as you make this transfer of meds.
There are many a day when I wish someone would write me a script for Va1ium.
sigh.
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