5 weeks post ivig please advise

[Hmrz]

Hello everyone. We are 5 weeks post ivig and i am wondering if what we are seeing is typical. I have seen improvement and very abrupt backslide. We changed his antibiotic from augmentin to omnicef and for 4 days it was like the dark clouds parted. Then suddenly after an amazing day yesterday, the late afternoon brought sensory noise issues that he could not handle, agressive angry behavior and what seems like ODD. Is it common post ivig to go from one extreme to the other? I want to believe that things are moving in the right direction but I guess after the last few years i am scared to hope. Once again thank you for advice and patience.

[nicklemama]

Two steps forward, one step back. That was our experience.

[qannie47]

what your sharing is very typical. Remember, IVIG is great for bit picture, but not an instant cure...your child will still flare, have great days/bad days. Don't panic....I know in all of our hearts. when we try a new form of treatment, we hope it is the end all....unfortunately it does not seem to work that way...

[Hrosenkrantz]

Hmrz -- what you describe sounds like my son after his first Ivig, w the bad backslide abt 5 weeks out, then a beautiful week wcthe change in abx.

 

Agree w the other responders that each kid's journey is very individualized, and it's only truly significant if things remain really bad for a long stretch.

[Brese]

My child's experience was not much in the first 4 weeks, the over the next month recovery from different symptoms. Each month she improved by 6 months all symptoms were gone except for still got upset quickly. By one year out everything including tics were gone. The only time we had any backtrack and it was not too bad was when she got strep about 3 months after the IVIG but subsided after additional antibiotic added for 10 days. No symptoms for over a year. Stay positive this treatment really worked for us.