Multiple HD IVIG

[hawks]

Who has done multiple ivig's - is your child considered immune deficient? Should one ivig work if your child is not immune deficient?

 

We were recommended to do multiple ivigs (3 or 4 HD ivig's)- but have never been told that our child is considered immune deficient. I assume that the doc's that we are working with would have pointed that out if that were the case. Is having an immune deficiency criteria for repeated doses?

 

Any imput here is greatly appreciated. Thanks.

[thenmama]

Hi Hawks,

 

One of my kids is definitely immune deficient. DS, PANS and Immune Deficiency is about to have his first HD IVIG and in his case the docs are anticipating ongoing treatments. In his case that is based on his illnesses and immune deficiencies, so the IVIG will be addressing his recurrent need for "passive immunity," and would be there even if one shot significantly knocked out his PANS symptoms.

 

Our dd doesn't have an immune deficiency dx. So, her HD IVIG was for PANS (this was the one we appealed the insurance decision for coverage for PANS). She responded extraordinarily well to the first treatment and subsequent treatment dose Augmentin and has not needed another IVIG up to this point. In her case, the plan is, and has always been, we'll know what she needs when we know...In other words, her treatment needs are based on her evolving needs, how she responds to individual treatments/meds, how far she gets with them, if she backslides, or if another illnesses warrants another or different treatment.

 

I know there are also PANS docs who believe all PANS kids need multiple HD IVIGs and hopefully a parent who works with one of them will be able to contribute some good info about that for you.

 

I think regardless of which doc you see and which school of thought they fall into, every child's treatment is individualized based on their unique circumstances and needs.

 

HTH

[eljomom]

Thenmamma---I don't think I realized your daughter had IVIG. Was it with Dr. L? Can you remind me her symptoms? Was she "debilitated?" so glad to hear she is doing well...would you consider 100%?

Thanks,

[peglem]

My daughter has been doing 1.5g/kg every 3 to 4 weeks for nearly 2 years now. She does have immune deficiencies, although I don't really know if that is her dx. We continue to do them because they seem to be helping and because when we have delayed there is an increase in her symptoms.

[thenmama]

Hi elijomom,

 

Yes, my dd had IVIG back in June, ordered by Dr L and coordinated with our ped rheumatologist and pediatrician so she actually had it here. And yes, she was severely "debilitated" going into the treatment and hadn't been able to function for months; the exacerbation she was in at the time of treatment had begun in October. She had undiagnosed PANS for years before she finally got diagnosed last spring. Hard to say what 100% is or should be, after 9 or so years of undx'd PANS. But from her baseline prior to the exacerbation I'd say she's at least 95% and while it's slower now, the progress continues. She's also made it through some strep exposures (didn't get it herself) and a (mild) viral URI with pretty minor spikes and she immediately calmed right down. She can participate in her academics and social life and pursue her passions and hobbies again-- she has her life back now. So while we're still working on the minor issues that remain, since the IVIG she's back to herself and happy.

 

Ds is about to have a T&A b/c of his very large tonsils and recurrent infections, and he'll be having his first IVIG, too. He's also significantly debilitated and cannot function in regular daily life right now. But, his case is also more complicated b/c he's got strep he can't clear and that sometimes even breaks through on Clindamycin and he has some marked immune deficiencies, etc. He has a whole team of docs now-- peds, ped rheumy, our PANS doc, Immunologist, an ENT, etc.

[eljomom]

Wow--that is amazing!!! It just still gets to my core....my dd is functioning (we do homeschool, so not sure what would be the situation if she were having to be in school all day every day, focusing, sitting still, stressed, etc...), and we've been told by Dr. L that she is not debilitated enough for IVIG. So while she tics and tics and taps and evens up, she seems fairly happy. I guess it frustrates me that kids who are debilitated can get back to "normal" lives, and kids who are not get to stay afflicted with tics, like it's no big deal to have tics and ocd and hyper for your childhood and possibly entire life. Sorry...don't want to be a debbie downer....

 

 

Hi elijomom,

 

Yes, my dd had IVIG back in June, ordered by Dr L and coordinated with our ped rheumatologist and pediatrician so she actually had it here. And yes, she was severely "debilitated" going into the treatment and hadn't been able to function for months; the exacerbation she was in at the time of treatment had begun in October. She had undiagnosed PANS for years before she finally got diagnosed last spring. Hard to say what 100% is or should be, after 9 or so years of undx'd PANS. But from her baseline prior to the exacerbation I'd say she's at least 95% and while it's slower now, the progress continues. She's also made it through some strep exposures (didn't get it herself) and a (mild) viral URI with pretty minor spikes and she immediately calmed right down. She can participate in her academics and social life and pursue her passions and hobbies again-- she has her life back now. So while we're still working on the minor issues that remain, since the IVIG she's back to herself and happy.

 

Ds is about to have a T&A b/c of his very large tonsils and recurrent infections, and he'll be having his first IVIG, too. He's also significantly debilitated and cannot function in regular daily life right now. But, his case is also more complicated b/c he's got strep he can't clear and that sometimes even breaks through on Clindamycin and he has some marked immune deficiencies, etc. He has a whole team of docs now-- peds, ped rheumy, our PANS doc, Immunologist, an ENT, etc.