Thursday, March 18, 2010

We Have a Plan

We've switched Yusef's meds now. We're weaning off the Zonegram and have switched to valproic acid. The plan is to do another round of ACTH if the valproic acid doesn't reduce his seizures.

I have no problem with doing another round of ACTH. Yes there are side effects which include one cranky baby for six weeks. The ACTH helped Yusef so much the first time but now the seizure have slowly creeped into daily life again. The hope is the second time they will stop them completely. Obliterate them. Buh Bye.

So far the valproic acid has reduced them, but they're still around. Unless there's some miraculous turn of events in the next week and a half (I'm supposed to check in with the PA after this time), we'll see just a reduction of the seizures. They'll still be there. Lurking around in my little guy's brain. I want them gone and plan on being extremely firm about doing the ACTH again when we check back in.

If we do go with the ACTH and that doesn't work the second time, then we'll start the ketogenic diet. I've like the idea of this diet for quite some time, but it does require a 5 day hospital stay in it's start, and is not nutritionally complete which means drawing labs regularly to check electrolytes. It also is usually tried for 2-3 months before it is deemed either a success or a failure. So in other words, if it doesn't work then we'll be looking at that time wasted when we could have been doing the ACTH which has helped in the past.

So I'll stick with what I know will work at this point.

We also have an appointment next week with another neurologist to get a second opinion. If I really like this guy, I might take our care there since I haven't been that happy with the way our care has progressed thus far. I know Dr.'s aren't generally keen on stepping on each other's feet and "stealing" away patients from one another, so we'll see what he says.

I have to do what's best for Yusef.

In other health care news, Zainah had a follow up chest xray for the "spots" on her lung. It looked clear, but to be safe we're doing another CT tomorrow. So throw up a prayer to Allah, God, Jesus, Krishna, or the diety of your choice, or just send some positive thoughts our way that tomorrow goes well.

4 comments:

Wafa' said...

My prayers that she will be fine and the results will be great tomorrow inshallah :)

Lisa said...

I'm glad you have a plan, Stephanie. Sometimes just having a plan makes things feel more hopeful. Were you ever able to talk to Liz?

Many positive thoughts coming your way from me!

Candice said...

I'll make dua for Yusef and and Zainah and send some positive thoughts.

MiMi & JuJu said...

inshallah he does better!!