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Can anyone speak to their experience with having a child who carries both a diagnosis of CVID and PANS? I am wondering (hoping?) that my 12 y/o son's PANS symptoms will improve and stay better now that we have discovered that his hypogam is actually part of CVID, but I can't find any information out there on how monthly IVIg for CVID manages PANS symptoms. I am freaked out that my needle phobic kid will have to receive monthly IVIg for the rest of his life, but if it means that he can actually get better, have some quality of life, and have periods of remission, then we have to do it. I just wish I could read something that clues me in to what to expect and our immunologist (who happens to have published a study that indicates that adult patients with CVID have lower quality of life than patients with diabetes and coronary heart disease) said we won't find any other published articles out there. I am hoping to find anecdotal evidence. My son has struggled with PANS symptoms since he was 8 and we have tried almost everything without significant success (CBT, all classes/types of psychotropic medications, antibiotics, allergin-free diet, supplements, CBD, NSAIDS, corticosteroids, essential oils, and 3 rounds of high dose IVIg when in times of high level flare because we thought we were just dealing with PANS). The only intervention that has helped was IVIg, but he would relapse within weeks of finally coming to his wonderful, normal, smart, funny self. Then it would be months of trying to get insurance approval and waiting for the IVIg to kick in because we were trying to get insurance approval through hypogam. We would see our kid come back and within weeks he would get sick and have a rapid decline. With the CVID diagnosis, I now understand why. Is there anyone out there who has a kid with both CVID and PANS and have been doing regular IVIg for the CVID? Did the PANS symptoms improve and stay better over time?
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Friday, we received two envelopes from insurance company. Envelope number one: they are paying on most recent claim for preapproved HD IVIg (October, 2012) If they pay for one in the series, they will have to pay for all (three total). It was precertified and they should have been paying all along. Envelope number two: Doctor that prescribed HD IVIg is no longer a preferred provider with that insurance company. The reason I feel we lost the war with the insurance company is that: original preapproval for IVIg ended in May of 2013 and DS only received 3 of the possible 6 HD IVIg he could have had because insurance would not pay. His condition deteriorated during that time and now that we know they will pay if forced; the doctor is out of network. As if PANDAs is not bad enough, we have to be abused by the insurance company as well. This whole situation has turned me into a very bitter person.
