Delayed healing from IVIG?

[Charlotte Mom]

Does anyone have a child who was treated with IVIG and saw improvement after a month? after six weeks? Or did everyone see the improvement within a month? We are five weeks post IVIG and still waiting. I am just trying to get a sesne (and possibly) encouragement from others who saw improvement after this amount of time. Or is it likely we are on the "need another IVIG" path.

 

If there is someone who saw delayed improvement, did the doctor make an antibiotic change or just keep things status quo for the entire time?

 

Thanks to everyone for sharing your information and the wonderful support this forum provides!

[Worried_Dad]

After IVIG round 1, we saw obvious improvement in the first 2 weeks and significant improvement for about 2-3 months. Our son got back to about 70%, then another infection sent everything south again and he had another major exacerbation.

 

We did 2 more rounds of IVIG last summer. This time, the improvements were slow, subtle, and disappointing. After 3 months, we had seen maybe 20-25% progress. Then we went on the "Saving Sammy" dose of augmentin XR and our son started shedding OCD behaviors rapidly!

 

Dr. K still attributes much of the recent progress to a "delayed response" to the 2 rounds of IVIG last summer. That may well have been a factor... but, personally, my wife and I think the augmentin XR at higher doses was the key. The rapid improvement started almost right away after we started the Saving Sammy dose.

 

So - to us, anyway - it seems like our son still had strep hiding out somewhere, and the IVIG was less effective as a result until the underlying infection was addressed. Just an opinion....

 

Hang in there, and best of luck!

[sf_mom]

We also noted huge improvements when we upped the dose of antibiotics. Might consider switching or upping to see if there is marked improvement.

[EAMom]

My dd had IVIG in August...IMO we are still seeing healing/progress.

[Iowadawn]

We had IVIG Oct 09. Weird BUMPY the first three weeks, but some glimmers. We started Augmentin 875mg BID about week two. Leaving week three the improvements became more apparent. The bumps were not as intense or as long lasting. Then Dec saw the beginning of a downward spiral that eventually landed our son in the hospital this last week. What we learned in Dec. is that we are/have been a strep factory. The IVIG held him for about 2-2 1/2mo. and the constant exposure caught up with him again--perhaps the reason we have not gotten the behavior breaks because we have been ping-ponging. Check family members if you haven't. Negative throat cultures weren't enough, either. I finally insisted on the ASO/Anti-DNase B tests 'cause I was convinced we had strep in the house. BINGO. We bring Evan home tomorrow. This will be a good test, now that all 5 of us are on Augmentin 875mg BID. Hope this is helpful. Dr. K has said not to panic until 3 months. I think any parent would be panicking before that!! Dawn