update: post-ivig waiting/hoping

[thenmama]

xx

Edited March 26, 2013 by thenmama

[nicklemama]

DS is 5wks post IVIG. Nothing major in improvement. Lost one tic, gained another. Social skills are better. That's about all.

[kimballot]

Dd had her first IVIG about two and a half weeks ago and we're waiting for a sign... Please tell me at two and a half weeks if nothing dramatic has happened there's still some hope? She's still at an exacerbation/elevated baseline level-- but has had a couple of better days since the IVIG-- where she's said her hands felt better and she could draw. But she's also had some days that she's worse off, so she's not going to normal, or all the way to full blown flare up, but she's sort of yo-yoing above and below baseline. But no sign of any real change or things starting to improve. Also, since the IVIG her allergies seem a lot worse-- anyone ever seen this or just a coincidence? Also, since her PANDAS doc never prescribed her an abx for after the IVIG, our peds put her on 250 mg amox, so that's the only other thing she's on right now.

 

TH

 

Hang in there! I know it is like watching grass grow, but at two week she will just be starting to clear the bad antibodies. Hopefully you will not see it get "worse" before it gets better, but that can happen once the antibodies clear.

 

 

I don't know if worsening of allergies has to do with the IVIG. Was she on antibiotics before IVIG? If she was on an antibiotic before IVIG and you took her off or changed them, it could be that she is developing a sinus infection, and the symptoms look like allergies - so you might want to just keep that in mind.... or it could also be coincidental due to allergens that are out now .

 

Please keep posting and let us know how she does.

[Wickedmaineah]

Can you explain the issue with your child's hands and not being able to draw? My son draws incredibly, but recently he has not been able to. Took the doctor 3 recent pictures he drew in the last couple of weeks. Two were incredible, detailed, and very professional looking and the third one looked like a 2 year scribbled it (he is 10). Doctor was amazed, but couldn't explain it. Thanks.

[thenmama]

xx

Edited March 26, 2013 by thenmama

[Minnesota Mom]

My son is 1-1/2 weeks post IVIG. I noticed an increase in his allergies too. How is your daughter doing now?

[thenmama]

xx

Edited March 26, 2013 by thenmama