10 weeks post ivig...earliest exhibited symptoms quite severe

[Jaal]

Ds 7 is now 10 weeks post ivig and some of his earliest symptoms (when he was 4 or 5) are in full force...maybe even worst then ever.

 

He looks almost uncomfortable in his skin....having an urge to touch things and people...touching objects in a certain way, stepping on my foot, pressing part of his body up to a wall,etc.

Im not even sure if this is a tic, OCD, or a sensory condition?

 

Has anyone ever heard of ivig having a permanent negative effect?

 

It's been 10 weeks and I'm starting to get really nervous that the Ivig has made him worst.

[Hrosenkrantz]

I'm interested in the response to your question. My son had an IVIG 3.5 weeks ago. We're seeing an exacerbation in symptoms -- which I believe is normal, but I have the concern that the procedure made things worse...

[LNN]

The half life of an antibodies you rec'd from IVIG is approx. 3 weeks. So by now, the majority of donor antibodies are gone. In terms of an IVIG procedure causing lasting harm, it's unlikely. The one long term risk would be from contracting an infection that hadn't been screened for - you are receiving a human product. But that risk is very, very small. More likely is that there's still a chronic infection and what you're seeing is a return of PANS symptoms now that IVIG has worn off.

 

Don't drive yourself nuts trying to figure out if the movements you're seeing are a tic or OCD. It doesn't matter. My son's OCD compulsions often involve movement compulsions - tic? OCD? either way, they respond when we hit the right treatment.

 

Not sure of your history or your doctor, but infections to consider are: mycoplasma, lyme or bartonella tested using Igenex - not a standard commercial lab's western blot, yeast, sinus or tonsillitis (if he hasn't had a T&A), virus...

 

It does seem you have more to investigate, but I wouldn't worry that IVIG has done permanent harm. My son had a horrible response to IVIG but he recovered and made tremendous progress once we discovered and treated the right things.

[nicklemama]

You should be seeing improvement by now. What abx is he taking?

[Jaal]

He is taking Augmentin

[nicklemama]

Treatment dose or prophylactic? If he's not on treatment dose I'd try and get him on it. If he's already on treatment dose, I'd switch abx.

[Diesel]

I find your question interesting as we are experiencing the same problem. DS, 8 years-old, is 3 weeks post IVIG and things have never been this bad. From everything I've read and heard, I am not concerned that this is a permanent exacerbation caused by the IVIG, but I do wonder if it is or isn't a normal part of the healing process. Have others experienced a lengthy exacerbation followed by success? Or is it likely at this point that perhaps this wasn't the right treatment for him? We are desperate to hear others experiences with IVIG.

[norcalmom]

DS had very weird things pop up- like bed wetting for 3 weeks every night post IVIG- (which he would only do in exacerbation- for only 2/3 nights, and even then it was only like a "leak". Post IVIG he soaked himself every night for weeks.

But he also had things completely disappear. I'd say we saw things even out at the 8? week mark. Definitely by 3 months post IVIG.

His mood however- was greatly improved from the very first day.

It was very weird, and we did see him do something that he had not done in a long time. But we had heard that "turning back the pages @ was to be expected.

In "Brain of Fire" they describe healing from NMDAr encephalitis as the symptoms reversing the order they are presented in. They literally go backwards. I think pans kids are similar, maybe little less linear.

[Dedee]

When my daughter regressed after IVIG we used benadryl and motrin to get through. It really helped.

 

Dedee

[littledebbie]

why Benadryl and what do you give your child to protect his stomache from the motrin?

[LaurenK]

Do you have a second IVIG planned?

[cobbiemommy]

why Benadryl and what do you give your child to protect his stomache from the motrin?

Benadryl is anti-inflammatory. Take the motrin with food, preferably in the middle of a meal.

[LaurenK]

Did you see any improvement within 1-8 weeks at all? I would agree with LLM in that maybe something underlying is causing the symptoms because donor antibodies are gone by 6 weeks.

[LaurenK]

Benedryl can also aggravate tics considerably in my own personal experience. I would be wary about using it.

[airial95]

Is it possible that it's just a new infection? My son has gotten strep multiple times on treatment doses of various antibiotics - so even if it's a treatment dose of Augmentin, he may still have caught something new. After our first IVIG - we were symptom free for about 8 weeks, and then he started to decline - picked up again after IVIG #2 (12 weeks after 1st one.)