Remember back on March 1st when Nadia woke up and cried she felt wet, refused underwear after having been doing so well? She never went back to preschool this year after that… Anyway, looking back, something occurred to me. We’d had a playdate with a girl in Nora’s kindergarten class the Saturday before. Fast forward to last week. I’ll get to all Nadia’s improvements in a bit, but… Nadia had been doing really, really well. Not perfect, but really well. Last week that same little girl in Nora’s class stopped over with her mom, and brother this time too. And a few days ago Nadia woke up and cried she felt wet and now won’t wear underwear again… I feel so defeated. We worked so hard! I can’t believe this would just be a coincidence. I have to think that this family, someone in it, is a carrier of strep or some other virus or bacteria, or possibly they have a lot of mold in their home and on their clothing… Something made Nadia flare.
So since March we’d been working with both our PANS specialist who is an MD in Creston, IA, and also a naturopath in Australia, who we meet with over ZOOM. I felt like we were making a lot of great progress, but yet maybe still missing something. If you remember correctly we never really found much on Nadia’s blood tests that showed what virus or bacteria is really causing her PANS. I know she has MOLD and mycotoxins, we used a lot of MiraLAX when she was younger, and she has some immune issues with borderline low IgM and IgA but nothing really substantial to treat, other than the mold. There were a few tests that our Creston MD didn’t think were worth running, as they are expensive and not covered by insurance. Although most PANS treatment isn’t… Anyway, I started to look for yet another, yes a third, opinion, convinced there must be a way to cure Nadia, something we haven’t tried.
I’m in a bunch of Facebook support groups, and one mentioned a specialty PANS/PANDAS clinic in Minnesota. It’s run by MDs, which is nice, as they can prescribe medications, but most also practice functional medicine for a more natural approach. I like the blend of both…
So we went to this Newbridge Clinic in MN and met with a woman there, told our entire story… She also believes Nadia has PANS, and she believes it’s triggered by mold and possibly her allergies, but unlike the other practitioners we’ve met, she thinks it’s more likely Nadia has strep hiding somewhere in her body, and also possibly Lyme. Lyme was one of the tests our MD in Creston didn’t order due to the expense. Well, I take that back, sort of. There are tests for Lyme Nadia’s had, the regular ones… which all show negative. But if you ask anyone who knows anything about Lyme, they will say those regular tests are pointless. So we went ahead and ordered the official Lyme tests from IGeneX. In addition to that blood test, she also ordered 35 other blood tests. Yes, 35. We had those run and are waiting on results. I still need to gather some of Nadia’s urine and drop it off at the lab for two tests. And I have two more lab kits at home that I need to collect Nadia’s blood from her finger and send it in. How in the heck am I gonna do that?? I mean, Nadia is actually really good at the lab, but me sticking her finger? I’m not sure how that will go, so I’ve been avoiding it.
So how is Nadia now? Well, not awful, not perfect. She is currently still refusing underwear or pants, which is big to me as it means not going to preschool in the fall again if we can’t get her back into clothing before the start of the school year. Strangely though, she will wear a swim suit. She is still on a ton of supplements and several Rx medications. And this third opinion provider added a few new supplements and increased the doses of a few things she is already taking. It’s getting more and more difficult to get everything into her each day as some need to be given hours away from food or other medications. It’s like there aren’t enough hours in the day!
Nadia’s lab results are slowly trickling in, as I can see them in her MyChart account. Some are normal, some are not. I’m anxious for our follow-up to discuss lab results and next steps.