Help--post IVIG is this normal or okay?!

[thenmama]

My ds had IVIG almost 2 weeks ago. We began to see signs of improvement earlier than I'd anticipated-- this past week he's shown signs of readiness to start addressing his OCD. He wanted to learn more about it, get better at identifying it, and he did some ERP in some of the smaller scale stuff and was very proud of his accomplishments (one of his biggest fears has been talking about it or even acknowledging his OCD at all, so this has been pretty huge progress, actually). We've also noticed more expressive language and expression of emotion, as well as broadening of his range of interests, more imaginative play, and more overall happiness. We had a few days of seeing that, then the past two days he seems to have backslid some again.

 

What worries me most is that dh seems to have a cold. He went out and got a rapid strep yesterday to be safe, and he wasn't going to come home if it was positive. It was neg, so he came back home, but he's stayed away from the kids-- holed up in his home office. Ds seems to be experiencing either allergies or a hint of a cold, though-- itchy eyes, maybe a bit stuffy. The eyes seem to worsen when he's been outdoors, so I thought allergies at first, but I don't know now. He would have been exposed to dh before dh realized he was coming down with this-- they played and read together Wednesday night. My dd's allergies seemed to worsen for a short while after her IVIG, then they got a lot better (and wound up even better than before IVIG). Since she had heightened allergic response at this stage, I'm not sure if that's what we're seeing. But, I also think ds has had the eye irritation/eye boogers during flares before. Ugh.

 

Dd's post-IVIG improvements also didn't seem to kick in til a bit farther out from treatment-- it was more in the 3-5 week range that we started to see the really noticeable gains. Both kids also spiked some in their PANDAS right after the treatment, so I can't say if ds has just been starting to experience some gains in fits and starts after the flaring stage, but hasn't hit the full upswing yet, or if he's experiencing a bit of OCD pushback b/c he's been terrified of even acknowledging it, let alone fighting it (so maybe in feeling better he started out too aggressively and it was too much too soon) or, the prospect that concerns me the most-- if he was gaining steadily and has backslid, maybe b/c of a cold. This is so frustrating b/c we've kept him home and have been so careful about exposure.

 

Your thoughts on what we're seeing? Can this still fall within the range of "normal" or okay? Has anyone's child gotten a virus or cold shortly after IVIG and still benefited from the treatment? Since that's my biggest fear right now it'd be great to know if there's still some hope in the worst case scenario.

 

It has taken us so long to get him this treatment and it really was working already-- I'd refused to even acknowledge what we were seeing til there was just too much improvement to deny it. Now I'm so worried.

[kos_mom]

Thenmama,

 

I have the same questions--both DD and DS finished IVIG four weeks and some days ago. DD got aseptic meningitis and fungal blood infection three days after IVIG. In her fourth week she got a virus, pityriasis rosea (big rash on back). I did see some progress (not as impressive as yours), but have seen some back sliding in last two days. DD showed mild separation anxiety on Wednesday and had two anxiety attacks on Thanksgiving and DS reported definite uptick in OCD starting Wednesday. I took both in today for blood tests for strep and myco p. Have no idea if the IVIG will have done anything, especially for DD.

 

Perhaps we moved too quickly in getting IVIG, but we were facing the United insurance deadline.

 

Ko's Mom