Post-IVIG Report

[SarahJane]

As some of you know, we did HD-IVIG for ds(6) almost 2 weeks ago with Dr. K. Some things are better. Some things are still bad. But as I write this, I have to say that nothing is worse, so that's good, right? We still have some symptoms, but some are gone. What we do have are likely less intense than before or at least less frequent. And like Dr. K said we might, we've seen some behaviors that we'd never seen before, but they've been short-lived. His tolerance of the IVIG was good (no headache that Tylenol couldn't manage...tho' I am a little worried since it's been said that the BIG headache is a good sign...only a PANDAS Mom would wish a major headache in retrospect, right?). He didn't have the nausea. He actually showed positive differences from Day 1 of IVIG to Day 2 of treatment. He's tolerating the daily zithromax/250mg well (a few days of belly pain & now no side effects). He has run a few fevers, but medicine broke them. Right now, the insomnia is one of the biggest issues we have. Rages are becoming more tantrum-like (or what we might call "rantrums" because they're in between)...BUT they occur in the wee hours of the morning, so we don't handle them well when we're sleep-deprived & we usually throw our own tantrums. I think I've finally found options he'll take for all the supplements he's supposed to be taking. I was able to start homeschooling again this week after a long hiatus...very positive. I have started to try to plan things even tho' I usually have to cancel them, but I have learned to write things in pencil or at least not get so upset when I cross stuff out on my list. (As a Type A Procrastinating Perfectionist Chronic Listmaker <whew!>, this is a BIG thing for me to learn! I'm definitely one to sweat the small stuff despite the saying. I believe in having Plan A-Z but resent having to deviate from A.) We're not planning to do most of our holiday traditions this year, but maybe in the coming weeks we will find that we feel like doing some things. (Even decorating a tree is up in the air right now.) We still keep his exposure to the masses at a minimum & won't do much traveling to see relatives (or inviting them down either). We're just almost 2 weeks out from the IVIG, so I really am trying to be objective. I have a big spreadsheet that I'm using to track things, which does show me that symptoms are lessening & positive behaviors are mostly growing. We are a long way from Week 12 where IVIG will be deemed a success or failure (which falls smack on his 7th birthday--thanks Universe!)...and I've learned to leave it at that because as soon as I say something more positive that I regret it in just a few hours. (See, I AM learning! Or am becoming extremely superstitious.) I haven't written my 2-week update report for Dr. K yet but will send it over the weekend & see what he says.

 

The moral of my story: Overall, things still suck, but it feels like maybe they don't suck as much.

[Stephanie2]

The moral of my story: Overall, things still suck, but it feels like maybe they don't suck as much.

 

Well said!! That about sums it up!

 

FYI, not to give you too much hope, but DS6 had a big turn-around at around 3.5 weeks post-IVIG. I know...I know...shouldn't have said that. All kids are different. And by the way we did a smaller dose, maybe that is why the inflammation came down sooner than the standard 12 weeks that ppl talk about. Keep us posted!

 

Oh, by the way, we didn't do Christmas one year when both kids were a train wreck. Very depressing. Give yourself permission to let it go if that's what you need to do to preserve your strength and energy for more important things. But then again, you could always go to walgreens and pick up a tiny tree and decorate it with some tiny ornaments! Better than nothin!

Edited December 2, 2010 by Stephanie2