I honestly don’t even know where to start with explaining yesterday’s appointment. It was long, involved, and a lot of what was discussed I didn’t really understand fully.
Backing up though, we left Sunday morning so we wouldn’t have to drive back and forth, a total of about seven hours, in one day. Sunday afternoon we stopped at the mall in Des Moines, had lunch, where Nadia had a huge meltdown, of course, spoiled the girls with a few toys from Barnes and Noble, and then I was able to find two dresses to possibly wear to an out-of-state wedding we have the first week of December. We checked into our hotel late afternoon and reserved the pool for our private use for a few hours, which the girls loved. Nadia didn’t want to put her swimsuit on at first, but she warmed up to the idea and finally got in, and ending up loving it.
After the pool we ordered in food, ate lots of junk we shouldn’t have, and went to bed early. We were all exhausted.
Monday morning we left the hotel early as we still had about 90 miles to drive to Nadia’s appointment. We stopped along the way at a McDonald’s, another healthy breakfast… Ugh.
Apparently there are only three physicians in Iowa who treat PANS and PANDAS. I did some research in a Facebook group and was told by pretty much everyone that Dr. Standing in Creston, IA is the best, which is who we saw yesterday. She makes sure to get patients in quickly as the sooner you start treatment, the better.
Before I get much further, if you don’t know much about PANS or the subset PANDAS, this link is a great explanation.
So the appointment… Took hours. Dr. Standing is very, very nice, an older woman. She asked us everything about Nadia you could think to ask, starting from birth. We talked about every illness Nadia had, all the ear infections, her premature birth, brain bleed, lack of oxygen at birth, all her symptoms, when each started… Thankfully I had made a timeline of everything. Nadia has basically every symptom of PANS… And Dr. Standing agreed PANS is the correct diagnosis, as Nadia has many of the very classic PANS symptoms, such as the feeling wet after she pees and dilated pupils often.
Dr. Standing ordered a TON of tests… Here is a portion of those, many of which are rare and therefore didn’t show up in their lab system…
No idea how soon any of these will come back. Nadia was a champ though, didn’t even cry, even though I swear they took 20 vials of blood from her!
So to make a long story short, as I don’t possibly know how to explain everything that was discussed yesterday, nor do I really know how to explain it all anyway… My understanding is that Nadia probably doesn’t have PANDAS, which is the subset of PANS caused by strep. Her pediatrician ran a few tests last week which came back negative for strep. But… PANS can be caused by any number of viruses, bacterial, even mold and other funguses. Some of the blood tests Dr. Standing ordered are looking for the cause of this. Why some kids get this and others don’t though… I’m not sure. We talked a lot about how Nadia was on A LOT of antibiotics her first year of life, which can ruin your gut and weaken your immune system, thereby allowing bacteria and viruses to attack you and thus eventually get into your brain. But there are other ways to get this too… apparently. Remember how Nora was born with immune issues, specifically low iGg? That could also be a part of this for Nadia, basically being born with a low immune system, even lower than expected for a preemie. I don’t know, maybe we will know more of the why once some of the tests are back.
For now we start treatment… which could evolve and change over time depending on how Nadia responds. Nadia was already taking Xyzal, an allergy medication which I thought made her symptoms less severe. Dr. Standing agreed that blocking histamine helps PANS, so that explains that… We’ll continue on the Xyzal. Dr. Standing added in 400mg of Motrin twice a day, Prednisolone, a steriod, every morning for 10 days, and Azithromycin, an antibiotic, daily for 30 days. I’m not sure the plan after 30 days, or if none of these medications seem to help. Nadia will also continue on the Ditropan for now, which is the medication Eric’s team decided to trial on her which seems to make her want to use the bathroom less, thus fewer meltdowns over feeling wet.
I was feeling okay about everything until we got home last night and it all kind of hit me. In the process of all my research I joined several Facebook support groups related to PANS and PANDAS. And you guys, there are some real horror stories out there. So thinking about all that, I kind of broke down last night and was really scared and worried for Nadia. I don’t know that there is really any cure for this, although Dr. Standing did say a lot of kids are a lot better after puberty. That said though, what if she isn’t? What if we can’t figure out what caused this, or what the right treatment for Nadia is, as it seems it can be different for each kid. And then, even if we do get the inflammation in her brain down, the next time she gets sick, even a cold, she will probably have a ‘flair’ and thus get all these awful symptoms and behavior back. That’s the real issue with this, all the flairs the kids have every time their immune system is activated. It’s like you have to start all over with the treatment then, antibiotics again… which aren’t great for your body long-term. Like a vicious cycle of what caused this is supposed to fix it…
Dr. Standing also suggested we try eliminating gluten from Nadia’s diet. Ugh, that will be hard, as she is an extremely picky eater as it is…
On the very long drive back last night, as Nadia was very much over being in the car, Eric was pretty quiet. He hasn’t said he doesn’t believe in PANS, as many in the medical field don’t believe in it, but he does seem really cautious. He likes data, research, facts. I guess thats how they were taught in medical school. And this wasn’t taught in medical school, as the first cases weren’t documented until 1989. This is so new, probably why not a lot is known about it yet. He’s onboard with the treatment, but part of me wonders if he’s really waiting for the tests to come back, to have some kind of proof of what is going on inside Nadia’s body… I guess time will tell…
I’m so anxious, for something, for even a small improvement in Nadia’s behavior, as she has been awful lately, between the epic meltdowns over everything, OCD wanting to wash hands all the time, only wanting to wear one certain dress… ugh. So much. Parenting her is so difficult. I love her so much, but sometimes caring for her is almost too much for my anxiety. I’ll certainly be praying for improvement…
