mama2alex

We are moving in the direction of getting IVIG. One hurdle (of several) is to get our insurance to cover it. Has anyone had success? The insurance company's initial response to the diagnosis codes I was given is, of course, DENIED. I'd love any insight on how to push this through - getting the right codes, appealing, anything. I have no idea how it all works, but am determined to get coverage if possible.

Wendy, Sorry to hear your little ones have the flu! It hit our house last week and our son was the first to get it. He'd been about 90% better for about 10 days and then I started seeing the PANDAS symptoms coming back. I wasn't sure what was happening until it dawned on me - he has a runny nose, he's probably coming down with something. We switched to 500mg twice a day of Augmentin because our ped found an ear infection. They are quick to give antibiotics because of his history with pneumonia. It hit his lungs to some degree (2 days of wheezing), but thankfully no pneumonia. He's back to school as of today, but still experiencing strong PANDAS flare-up. They also tested him for H1N1 - rapid test was neg, but we're waiting for the lab results. Our ped said they are seeing a few cases of H1N1 per week - I had no idea it was so widespread in the Bay Area. I'll keep my fingers crossed that your older son doesn't get sick! Jennifer

ShaesMom, Thanks for this information! Just to clarify, did you have her titers tested before and after giving her the Pneumovax? When did you give have this done? After being diagnosed for PANDAS? Did she have any negative reaction to the vaccine? My son is fully vaxed with Prevnar, and they've checked certain pneumococcal titers, but they felt the before and after test with Pneumovax might give more info (and I know if he doesn't show enough of a response, IVIG would probably be recommended and covered by insurance). Depending on how our discussion with Dr. K goes, I may be interested in calling or seeing your immunologist. Apparently, there aren't any immunologists in the SF Bay Area who are familiar (and/or willing to work) with PANDAS (someone please correct me if I'm wrong on this). As it turns out, he's based in my home town, Omaha, Nebraska, so it wouldn't be too hard for us to go out there and schedule an appointment during the visit. This would probably be easier for him that meeting in L.A., and we are long overdue for a visit. Thanks! Jennifer

Thanks to all of you for your replies! Specific responses to some of your comments: We’ve had some immunological blood work done, but I’m not sure whether we’ve done everything we need to. We’ve had IgG, IgE, IgM and I think IgA tested – all within normal ranges. But there’s no way his immune system can be “normal” with everything we’ve seen. I’m very interested to get the link to the info on IgG subclasses, because this doesn’t sound familiar. Our pulmonologist wanted to test his titers to Pneumovax before and after giving the vaccine, to see what the response is, but I have been too scared to give him any more vaccines since doing my homework on these when he was 3. This is something I plan to discuss with Dr. K on Tuesday. It sounds like the steroid burst has different effects on different kids. The psychiatrist indicated that she’s seen these somewhat negative reactions in other PANDAS kids, but it does seem like these are just side effects and the prednisone is actually having an anti-inflammatory effect, because we definitely continued to see more improvement after we took him off the steroids. I love the idea about jotting notes down during the day. I am keeping a log on my computer, but it’s not always easy to get to it, and I sometimes let it go for days. The written notes would also allow me to write down thoughts or observations while we’re out of the house. As for being scared off by moms with “PTSD,” not to worry. This has been very traumatic for our family and so I’m right there with you! Thanks for all the kind words, support and suggestions.

I’ve been reading this forum for several weeks now, but have not been able to gather the energy (or organize my thoughts) enough to post until now. Our 9 year old son became ill with a sore throat, fever, vomiting and pneumonia on June 6th of this year. His throat wasn't that red, so he wasn't checked for strep. He was prescribed Amoxicillan and two asthma medications. (This was his 6th pneumonia.) He also has asthma and allergies and has struggled with yeast overgrowth (that affects his behavior) for years, so we’ve known for a while that his immune system is stressed and not performing well. He had what looked like a panic attack at bedtime 5 days into his illness and from then on was convinced there was a robber in our house. He continually asked us to check and would get very agitated at the slightest noise. He had headaches, stomach aches, slightly shaky hands, frequent nightmares, a lot of separation anxiety (something he had before but nowhere near this severe) and constantly asked us to check the house for a robber. He also had a terrible time getting to sleep every night and would wake up in the middle of the night terrified and ask us to “check.” After consulting with our pediatrician, a developmental pediatrician, a neurologist and psychiatrist at Stanford Hospital’s ER, a psychologist, another psychiatrist and two pharmacists (to see if it could be a reaction to the medications) and receiving a diagnosis of OCD and Separation Anxiety Disorder, I joined the OCD and Parenting Yahoo Group and quickly learned about PANDAS. It seemed to fit. We too have been helped tremendously by Diana P. (through PANDAS Network) as well as a few other wonderful moms in our area who have taken the time to talk on the phone and email. Their help and support have been incredible and we wouldn’t be this far along without it. We’re now working with a pediatric psychiatrist in Palo Alto, CA (I think several other parents here are working with her) and started on Azithromycin 3 weeks ago. We saw his symptoms decreasing within 4 days of starting. We also tried a 5 day prednisone burst, but stopped after 3 days because he seemed to be getting more anxious, oppositional and angry, and started to hear “people whispering” in the other room. The psychiatrist also checked ASO and Anti-DNase B titers – ASO was normal range and Anti-Dnase B was slightly elevated (340). Throat culture was negative, but this was two months after he was ill. We just sent a blood sample to Dr. Cunningham and we’re having a phone consultation with Dr. K in Chicago this Tuesday. I have a million questions tumbling around my head, but thought I would introduce myself first and share our story. We don’t yet have a definitive PANDAS diagnosis, but at this point it’s hard for me to believe it’s not PANDAS. In any case, I am so thankful to have found this group. Any thoughts or suggestions would be more than welcome. This seems like a fantastic group of parents. Jennifer