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intravenous immunoglubulin. . . . . I LOVE YOU!

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Hi everybody, I've been waiting for a really good several days to be confident we have seen a change. Wow. I am SO INCREDIBLY HAPPY RIGHT NOW!!!!!!!! . . . .and emotionally exhausted. . . . . .We are exactly one month post IVIG.


First week was terrible, worst ever. Second week was very crappy still. Third week started to see improvement, but my son seemed kinda ADHD or Asperger's and I was afraid that would stick, or that was the real him, and that we might have to consider treating a different disorder. This week (week 4) he has become the most fantastic, happy, carefree, fun, loving boy!


He sings, he dances, he smiles and shows his dimples, his voice is a normal volume level and very natural. His face, esp eyes, have a variety of beautiful expressions, changing all the time. (No longer puppet like or wide-eyed). And his pupils. . . I wondered if his pupils were really dilated much, didn't know how large was truly dilated. Well, his pupils are startlingly tiny to me this week. . . . I didn't know. Haven't seen them like that in a long time.


Now, it's only been 5 amazing days, and I'm worried about how long it will last. . . but to see him like this. . . to see the real, relaxed, wonderful boy. I just can't believe he's really back. Now I know he had not been this good in a long time, even when we thought he was doing fairly well on abx. He's MUCH BETTER now!


I am very happy we did IVIG, and we will consider another one if we need it down the road. We are a case that I thought was mild, not terribly debilitated, and young. . . .5 years old when we figured it out (probably started when he was 4). I really worried about whether we needed to do IVIG or not. But he eventually did start becoming debilitated in school, and that pushed us over the edge to want the most aggressive treatment.


At this moment, I am extremely happy we did, and want to share.


Prayers and best wishes for all of you and your children,


Tammy, Indianapolis area


Just be aware that at about 6-8 weeks out, you probably will see a flare-up that may last up to a day and certainly there will be ups and downs over the next 3-6 months. Anecdotally, this seems to be fairly common. Don't freak out. Healing from IVIg is sometimes slow, but deliberate. It takes up to 6 months to get about 90% of what you're going to get. After the first year, you have what you have.

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This is a Ray of hope for us. We are waiting for news from our ds 12 pk pet scan and a follow up appt with dr. K and then we will be on the path to ivig. It's scary to think you may not have the outcome your hoping for. I'm so happy to hear that it's working out for your son. I totally get the eyes thing... We've been dealing with this for 3 1/2 years now, and even on good days his eyes have that deer in the head light look. And his expressions are so flat, that's what I miss the most. Giggles and excitement, dissapointment and quizical. He has two modes, flat or combative. Good luck i hope you have continued healing.

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That's so awesome, Tammy!!!!!!


I would agree you might see some fluctuation over the next two months, but your son is so young, that might not be the case with him. The key will be to keeping him healthy, limit exposure when possible, you know.


I think those benchmarks mentioned by TexasDad in post #4 assume there has been no further expose....which a whole year, for a 5 y.o.....is a tall order!


Great news!

You made my day!!


Prayers and warm wishes


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