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Hi experts,

 

I searched this forum re. getting insurance approval for IVIG and asked on an older post that was for AE; our MDs say that's out b/c it's not anti-NMDA AE, so I thought I'd try to be more specific in my question here. I'm preparing my insurance appeal in case UHC denies coverage for out-patient 2-days of IVIG, although they've expedited the review process.

 

Questions:

 

1. How did those of you who had to appeal your insurance's first denial of IVIG (for hypogammaglobulinemia) approach it, eg. did you list PANS/PANDAS as a dx ?we were told by both our PANS NP/RN and ID MD that we can't b/c it's not in the DSM or clinically "accepted" yet, but now I think I can include the JCAP Studies!

 

2. What other evidence besides clinical history of frequent infections and long-term antibiotic use did you cite? We were also told we can't cite the Cunningham/Moleculera results b/c it's still considered an experimental, non-FDA approved, test.

 

Thanks!

 

Tracy

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We tracked IgG Subclasses inclusive of IgA and IgM over time which got worse (not better), long term antibiotic use and known chronic infections of TBI 'Tick Borne Infections' and viruses. We had no problem qualifying for monthly in-home nursing services and IVIG as a result.

 

It is important to run subclasses via same lab pre-IVIG (every six months), during IVIG (just prior to each infusion) and post IVIG (about every three months). These records are invaluable to prove SID 'Selective Immune Deficiencies' and to qualify for continued treatments.

 

We did not have to revaccinate either as a result of our ongoing records which was important to us since our older son's sudden on-set was 3 weeks post MMR and strep related illness.

Edited by sf_mom

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Great, thanks for the help.

 

We have all the IgG Subclass results documented. We are going to do the pneumovax23 response challenge while we wait for word from insurance. If they approve, we'll skip the titer re-test unless there's time before IVIG.

 

My son also didn't have antibody protection against Rubella or HepB (but did for Rubeola, fortunately). So there are other immune irregularities.

 

To be continued...

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Tracy,

 

I know that you are trying to get approval so this may be something that you don't really want to question, but I would want to know this if it were my child. It looks to me like the negative Hep B might not be a good indicator of immune function unless your Dr. did a challenge vax? Did your son get the series during infancy?

 

http://www.cdc.gov/hepatitis/HBV/HBVfaq.htm#D11

 

How long does protection from Hepatitis B vaccine last?

Studies indicate that immunologic memory remains intact for at least 20 years among healthy vaccinated individuals who initiated Hepatitis B vaccination >6 months of age. The vaccine confers long-term protection against clinical illness and chronic Hepatitis B virus infection. Cellular immunity appears to persist even though antibody levels might become low or decline below detectable levels.

 

and

Are booster doses of Hepatitis B vaccine recommended?

Booster doses of Hepatitis B vaccine are recommended only in certain circumstances:

  • For hemodialysis patients, the need for booster doses should be assessed by annual testing for antibody to Hepatitis B surface antigen (anti-HBs). A booster dose should be administered when anti-HBs levels decline to <10 mIU/mL.
  • For other immunocompromised persons (e.g., HIV-infected persons, hematopoietic stem-cell transplant recipients, and persons receiving chemotherapy), the need for booster doses has not been determined. When anti-HBs levels decline to <10 mIU/mL, annual anti-HBs testing and booster doses should be considered for those with an ongoing risk for exposure.

 

So <10 mlU/mL? Then this study. Only 24% prior to challenge

 

http://www.ncbi.nlm.nih.gov/pubmed/24843060

RESULTS:

At baseline, 24% had protective anti-HBs levels of ≥10 IU/mL; 92% achieved protective levels after challenge dose. Although group 1 had a lower proportion of seroprotection at baseline, group and challenge dosage were not associated with postchallenge proportion of seroprotection. Being in group 2, higher test dosage, higher baseline geometric mean titer, and nonwhite race were associated with significantly higher geometric mean titer after challenge dose.

CONCLUSIONS:

More than 90% of study participants immunized against HB as infants exhibited a seroprotective response to a challenge dose of vaccine. Duration of protection from the primary infant HB vaccine series extended through the adolescent years in the setting of low HB endemicity.

 

Here is something that gives a little more info on that study

http://npin.cdc.gov/news/hepatitis-b-infant-immunization-protects-through-adolescent-years

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Tracy,

 

I know that you are trying to get approval so this may be something that you don't really want to question, but I would want to know this if it were my child. It looks to me like the negative Hep B might not be a good indicator of immune function unless your Dr. did a challenge vax? Did your son get the series during infancy?

Hi Kim,

Did you mean it's not a good indicator for insurance? Yes, he had standard course as infant and is 15 now. We didn't do a challenge vax as there are some concerns from our PANS practitioner about revaccinating and making his PANS worse. Our ID MD was mainly concerned w/HepB if HIV was implicated (negative), I think. Have to look at my notes.

 

Since our urgency is really to treat the PANS w/a higher dose of IVIG (1.5-1.75g/k over 2-days) than immunology would use (lower, more regular frequent sessions), the consensus was to forgo a full work-up, but revisit that in a year after the initial IVIG.

 

Thks, Tracy

Edited by tj21

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Tracy,

 

What I was really thinking was that your Dr. may have ordered it suspecting that it would be low and would strengthen your position for insurance. It sounds like there was another reason tho. I know Dr.s have a way of ordering tests with specific ideas in mind sometimes on how to get insuance coverage and I didn't want you to think that it was another indicator of an immune system problem if that wasn't really the case.

 

eidt to add....since you mentioned HIV, I wondered if your son was tested for CD4 and it was found to be low? I only ask because I had ran across this article at some point and saved it beacuse I thought it was some easy reading on immune stuff.

 

http://www.virusmyth.com/aids/hiv/milowcd4.htm

 

excerpt

 

While most people know about the lowered CD4 counts which are common in people diagnosed HIV-positive, but very few people or clinicians seem to know how common low CD4 counts are in people considered HIV-negative. Studies show that CD4 counts commonly fall extremely low, especially if a person suffers from certain conditions. These conditions include a variety of viral illnesses, bacterial infections, parasitic infections, sepsis, septic shock, multiple organ system failure, tuberculosis, coccidioidomycosis, burns, trauma, transfusions, malnutrition, over-exercising, pregnancy, normal daily variation, psychological stress, and social isolation

 

Edited by kim

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Thanks, Kim. We did discuss all the tests prior to running them, plus included the prior boatloads of test results from our PANS NP/RN (including CD8/CD57, no CD4). I think our ID MD just ran HIV to rule it out for insurance.

 

Consensus between four of our practitioners, and us, is to move ahead w/IVIG as soon as possible. Also we are doing a high-dose 2-day course, not the "standard" non-PANS lower repeated doses. For a first pass at any rate.

 

@sf_mom - glad you mentioned tracking IVIG levels, I realized we have 3 sets, each level lower than previous (March 2014, Nov. 2014, and Jan. 2015).

 

~Tracy

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ID MD just called - we got insurance approval, and for the high dosing!!!!

I can't quite believe it, since I've become so cynical about the system.

 

Scheduled for Tues.-Weds. 3/3/ and 3/4. WOW.

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