IVIG protocol differences

[ibcdbwc]

As per usual, I realize no there are wide differences in response to IVIG for a variety of reasons. Have read up on the various IVIG options. One, two, monthly. Have also heard various stories regarding various agents used. When we say IVIG, we can mean a host of different approaches.

 

Does anyone have any knowledge in this area? as to what seems to be the latest greatest safest?

 

We are considering this route since now DS IgG has very steeply declined.

 

[kimballot]

I think your first line really sum it up - there are wide differences in response to IVIG for a variety of reasons. Therefore, what is "latest and greatest" will depend on your child's needs and on his/ her reaction.

 

From my observations, it seems that some kids do very well with one IVIG to stop the autoimmune process with PANS. This seems to be best when the infection has already been eradicated.

 

​Some kids have underlying infections that were not eradicated before starting IVIG - and those kids seem to need repeat IVIGs while treating the infections with antibiotics.

 

Then there are kids, like yours (and mine), who have some immune deficiencies. If IgG is declining, it could be a primary immune deficiency that is just now showing up and if that is the case your child may need repeat IVIGs to keep the antibody levels up. If this is the case, then you have to work with doctors to find the correct dosage as there are some conflicting thoughts on whether to do high dose IVIG (e.g.: 1.5-2g/kilo)repeatedly for kids with PANS and immune deficiency, whether to switch to low-dose (e.g.: .4-.6 g. / kilo), or whether to give a dose that is somewhere in between (e.g.: .75-1.0 g/kilo).

 

So - my advice would be to find out why the IgG is dropping if you can. Test carefully for infection and treat before beginning iVIG, and make sure you have insurance coverage for repeat IVIG if there is immune deficiency.

[lulu4]

Do you already have a PANS doctor? Ask what he/she knows about the different protocols. My dd goes to Dr. L., who uses the same protocol as in the study done at NIH last year. It is high dose but usually a only a one time procedure. The improvement rate is high. I didn't know until well after her IVig procedure that there are different protocols. It can be quite confusing. We have seen a lot of improvement over the course of 11 months. We are very grateful. Good luck!

[Tattoomom]

Do you already have a PANS doctor? Ask what he/she knows about the different protocols. My dd goes to Dr. L., who uses the same protocol as in the study done at NIH last year. It is high dose but usually a only a one time procedure. The improvement rate is high. I didn't know until well after her IVig procedure that there are different protocols. It can be quite confusing. We have seen a lot of improvement over the course of 11 months. We are very grateful. Good luck!

Do you have a link to that study?

[lulu4]

tattoomom, I can not find anything published on it yet. Perhaps my comment should have said, "I hear the improvement rate is high." My comment was based on a statement a doctor made to me during a conversation months ago. The doc said they heard the study results were so statistically significantly positive that the study didn't need to accept any more patients. The study was still ongoing. I too am looking forward to the published results. I do not know when the study wraps up conclusively and will be published.

[tj21]

We just finished IVIG for ds15. In joint consult w/PANS NP/RN and ID MD, we did higher end of dosing, but not 2.00/g/k per NIH Study:

 

Day1: 1.00g/k

Day2: 0.75g/k

 

We've done boatloads of labs (8-10 vials at a time!) but not a complete immunological workup yet. Due to PANS symptoms (severe w/several psych. hsopitalizations) we decided to do IVIG to treat PANS "only."

 

Ds15 does not have CID or CVID but has low IgG and we don't yet know why it is dropping, so will pursue all that in about a year; team thinks he will retain IgG for about 11 months but we'll be tracking it.

 

~Tracy