Long Overdue Update

I kind of suck at writing lately. Which is a shame as I really like to write… but finding the time seems hard these days. Although really, what the heck do I do with my time??

Today is Wednesday. Wednesdays seems busier than most. Nora gets out of school early, Nadia doesn’t have pre-school but does have ballet in the morning, and Nora has gymnastics on Wednesday evenings. And starting next week Nora and Nadia will have gymnastics together! Oh, and it’s gloomy today. Raining, dark, not cold, but also not warm at around 40ºF.

Tomorrow Nora’s school speech therapist will be meeting with her. I have several concerns about her speech, stuttering, possible lisp, baby talk (a sign of PANS & PANDAS), and she still wants to spit out some chewed food, which I know is related to the muscles in the mouth and using them correctly. Or possibly a sensory issue with textures and such. Way back when we did feeding therapy with Nora, hopefully we don’t have to restart that.

Next Tuesday I’m getting back together with Nora’s teacher and their Area Education Agency representative to discuss the actual evaluation they want to do. I tell ya, this process is so long and drawn out! Just do the evaluation and let’s stop talking about doing it! Reminds me of all the meetings I had in my previous career life…

I will say, I think Nora is doing a lot better reading all the sudden. Maybe she doesn’t have an issue and just needed more time for it all to click… I guess we’ll see.

I’m still working with the doctor in Minnesota for Nadia’s PANS issues, and we are now having Nora treated as well. We don’t have an official diagnosis for Nora, but maybe it doesn’t matter. I’d rather treat the real issues than spend time deciding on a name for what’s wrong. In my mind, the real issue with both the girls is a combination of their crappy immune systems, and leaky gut, which are really tired together. Basically everything they eat and ingest, so not just the actual food, but the toxins on our US food, bacteria, viruses, the crap in water, the air, everything basically, leaks through their gut then into their blood and eventually crosses the blood/brain barrier. Their immune systems can’t fight everything like a ‘normal’ person’s could, thus we end up with all these random issues, including, but certainly not limited to behavior/mental health issues, skin rashes, sleep issues, stomach aches, brain fog, night sweats, God, the list is so long I can’t even really begin to list it all. So our treatment is varied as well, cleaning up their diets, which feels impossible with kids, cleaning up our environment to get rid of toxins, like our water filters, air filters, buying healthier of everything, and treating current infections and bacteria, plus making their immune systems stronger so eventually it can fight all this on it’s own. Which is all a lot easier said than done. I’m exhausted from preparing their medications and supplements each morning and night. They are sick of taking them. And even harder is cleaning up our diet. I’m trying to buy as much organic as I can. We are supposed to eliminate gluten and dairy, not because they are celiac, but because gluten and dairy cause inflammation in the gut in everyone. Of course the girls wants to live on white carbs. Probably part of the reason we are in this situation. So the eating is very, very difficult. And honestly, we aren’t completely gluten or dairy free. I fail daily. But it’s a process. Less is better.

Honestly, Nadia is doing really, really well currently. Not only is she wearing pants on a daily basis, she is also wearing underwear on a daily basis. THIS IS HUGE. I know it doesn’t sound huge, but it is, for us.

Otherwise, life feels very uneventful. There are only 35 more school days. Can’t believe that. I already registered Nadia for Kindergarten this fall, and Nora for 2nd grade. Can’t believe that either.

We had our final mental health evaluation for our surrogate process. Gosh, did I even mention all that?? Well, we did, so now we are in the waiting phase… We wait for the agency to find a ‘match’ for us. Our contract says they have ten months to do that, if I remember correctly. So we wait…

Orientation & First Days of School

I don’t even think I wrote about the last days of school, or most of the summer… But… Moving on! So they say, the past is the past!

Orientation was the Friday before school started. Nadia’s preschool session was during the day, so just the girls and I went as Eric was working. Nadia seemed a little hesitant but she showed me around, pointed out where she painted last year, where they wash their hands, have snack, etc. I wouldn’t say she seemed excited, but she didn’t appear terrified either, as I kind of expected. It’s all the same teachers, so that’s good, but mostly new students, as I think most of her previous class went onto kindergarten. I just didn’t think Nadia was ready yet… she needs another year to heal and prepare I think. God, please let her be ready next year…

Nora’s orientation was in the evening, so all four of us attended. We met Nora’s teacher, got a bit familiar with her classroom and walked around the school a little. Her teacher seems super, super nice, and so far Nora really likes her. Nora even went as far as to say her teacher is funnier than daddy! Imagine that!

So aside from Nora now being sick with RSV and missing most of this second week of school, I’d say things are going well for her so far. She does whine a bit each morning that she doesn’t want to go to school. Same as last year. She must be fine once she’s there though, as always smiling in pictures and when I pick her up! I did feel horrible the very first day though. The kids all lined up outside with their classmates, and Nora had tears in her eyes, waving to Eric, Nadia, and me. It was heartbreaking. But nice to see her teacher comfort her, I knew she would be fine.

Nadia has been attending just her afternoon preschool sessions so far, so not the morning daycare portions. Which is fine. I wanted to ease her back into school, and plus, I’m home all the time, she doesn’t have to attend the daycare part.

We’ve had a few tears with Nadia so far. She whines most nights, and days too, that she doesn’t want to go to school. The first few days she happily walked in, and according to her teachers, did very, very well. She is always smiling when I pick her up and all excited to show me her work from the day, paintings and such, so I take that as a very good sign. Still no underwear or pants. Her teachers said it would be fine for her to attend school in long dresses, and so far that has been okay. She is learning to sit properly in a dress. Scares me for next year though, when she has a uniform. Or heck, even this winter when it’s cold and they go outside to play for recess! Ah! What if she is still claiming the ‘wet’ feeling then??

Yesterday when I dropped Nadia off she was crying, and I felt horrible leaving her there so upset. The thing is though, she wasn’t just upset about school, she was upset about her socks, saying they felt strange. This sock issue isn’t completely new. We’ve been dealing with sensory issues for years with Nadia, although lately, especially since school started, they seem worse. Anxiety about school I assume is the cause. I also question how much is strictly a sensory issue, and how much comes from the PANS/PANDAS/Lyme. Anyway, yesterday we must have changed socks three times, and even then she was still uncomfortable. I have purchased every single kind of sock I can find, including multiple brands made for sensory issues. Nothing seems to help her. I’m at a loss on how to help Nadia. So I do the best I can, change socks multiple times a day, keep fixing them and re-fixing them, changing shoes, whatever calms her. Although sometimes nothing calms her 🙁 I wish I knew how to help her. OT for years and still I have no real fixes for Nadia. In fact, I don’t know if we’re going to continue OT, as I’m not seeing improvements, so what’s the point, you know… I

’ll post again soon about Nadia’s Lyme/PANS/PANDAS progress. Oh, and about her 5th birthday too! For now, I guess I should find the girls and myself some lunch.

Nanny

I hate to say this, but I think our summer ‘nanny’ is really lazy. I picked her as she impressed me at the interview. She’s a 27 year-old married 2nd grade teacher. Very easy to talk to… which I always look for. I don’t want it to be awkward with someone in your house so many hours a week. And she’s not all bad, the girls do seem to have fun with her, they are happy, but… I don’t know… She is almost always on her phone. And yes, sometimes around my girls I am too, but it’s her job. She is pretty much always late in the morning, even if only 8-10 minutes, but still, it annoys me. She does ‘teach’ them as I asked, but really only from the workbooks I provided, which I easily could have worked with them myself. For the most part they really just watch TV all day. And since the girls come to me for everything, I feel like I have to leave the house, even though I have so many projects at home I want to complete.


I’m still waiting for a few blood test results for Nadia, one being Lyme. I’m so anxious to get more details about everything this new provider wants to treat and how. For the most part Nadia is having good days. Very few epic meltdowns, she is sleeping well, in a generally good mood… but still usually refusing underwear, which is my biggest concern related to her going back to school. And the end of August will be here before we know it. Plus, she is currently home most days, if even just with the nanny. I fear for how she will be when I drop her off at preschool. Although she hasn’t seemed to care when I leave her home lately, so perhaps a plus.

I’ve done a bit more decorating, well, very little, don’t get too excited. And I’m not sure I love any of it, but for now it looks better than the random toys everywhere!

Oh, and apparently Nadia is completely over her sensory issues with her hands feeling icky, as she now loves worms! She is not my child! I don’t want those things anywhere around me. And Eric wants to take the girls fishing this weekend. I hope Nadia isn’t too attached to her worm.

And I dug out my Maker to make one item… I didn’t have permanent vinyl though, so not sure how long it will stick…

Nadia’s Progress

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.

No Better

I know it’s only been one day off the Singular, but Nadia doesn’t seem any better… She is still saying she feels wet, pupils are large, not really wanting to eat a lot, has really weird stringy thin poop…

There is a clinic in Minneapolis, MN that specializes in complicated medication issues, Newbridge Wellness. Months ago I must have submitted some information about Nadia and asked to be contacted. Well, they called this morning. Based on what little information I shared so far with them, they think a particular provider, Stephanie Belseth, would be a good fit for us. She’s a pediatric nurse practitioner, but specializes in functional medicine… meaning she can prescribe medications, but also likes to focus on whole body healing. She sounds like a combination of the two people we are currently seeing, the MD in Creston, IA, and the naturopath in Australia. Would I be crazy to go see this person? At least get an idea of how she would treat Nadia differently than what we are already doing? I’m not sure how much insurance would pay, if anything, and they already told me she is over $400 an hour. And she’s a little over a three hour drive from our home, but I guess that is the least of my concerns. I’m so confused. But I feel like I need to do anything and everything I can to help Nadia.

Autism Screening

Yesterday felt completely pointless. Long story short, Nadia does not have autism.

Nadia and I stayed in a hotel Sunday night as we had to be in Iowa City super early Monday morning, and honestly, I just didn’t feel like dragging Nadia outta bed at 4am. So Sunday afternoon we drove there, checked into our hotel, stopped at the Coral Ridge Mall, then ate at Olive Garden before grabbing some snacks and heading back to the HIlton for the evening. Shockingly Nadia slept the entire night, even insisting she have her own bed! I, on the other hand, could not get to sleep, too much on my mind.

The day started with a long chat with a nurse, who had never heard of PANS or PANDAS. This should have been my first clue that the day would be pointless. I mean, maybe she is supposed to pretend she’s never heard of it, or she is really that clueless. Next they sent in the 4th year medical student. I can’t complain, that was Eric so many years ago. He was actually quite pleasant and spoke with a slightly more open mind than the nurse regarding Nadia’s symptoms and history. He’d at least heard of PANS although wasn’t all that familiar as to treatment or the University’s stand on it not existing.

Finally we met with the first actual provider, a developmental pediatrician. He was very kind, played a bit with Nadia, tried to calm her down, as she was already finished with being stuck in the same, very hot room, for over an hour. He listened quietly as I told our story, trying to remember every detail. When I told of our previous PANS diagnosis he was quiet, so I asked his opinion. He didn’t exactly look at me like I was crazy, as I had expected, but he certainly spoke to me in a way that made me feel somehow small. I don’t remember his exact words, but he explained how often we go down a rabbit hole and get sent off on a tangent that takes us nowhere. In other words, PANS isn’t recognized by him.

I also asked his specific feelings on mold, as more and more I feel like this is one of the main causes of Nadia’s PANS. I was actually quite shocked by his response. He flat out told me there is no research showing that mold is dangerous or that it causes the symptoms Nadia is experiencing. I wanted to argue, but why. I wanted to point out the countless peer-reviewed articles on PubMed, one of the most trusted sources of information for MDs. But again, why. He had his mind made up.

Next we moved onto a speech pathologist who again played with Nadia while making a lot of notes. She was very young, very nice. I didn’t even both sharing any more of our history with her than she specifically asked for…

Our last appointment was suppose to be with an audiologist for a hearing test, but Nadia had her hearing checked in August at her four-year well-child exam, so we decided to skip that and instead we were send to a conference room. The developmental pediatrician and medical student joined us with the results. Nadia doesn’t have autism. I wasn’t concerned she did, but I guess good to rule it out and have it clearly stated in her chart. Their suggestion… referral to child psychology. This annoyed me. Not because I’m against medications for anxiety and depression for those who need them, but more so because I see this as a band aid for Nadia’s symptoms. It might work, may make her act ‘normal’, but it will not solve the real issue or find the root cause.

I guess overall I’m really, really sad and frustrated. The University is the place I look to, a place that I view as the most advanced, most up to date on information and treatments, basically where you go when all else fails and you want answers. Clearly I was wrong. The University is not up to date on the latest research on PANS and PANDAS, nor do they even seem willing to explore, join in on the conferences, view the research currently being conducted. The University failed me, and so many other struggling parents and children. And that sucks.

This morning we had a follow-up with Nadia’s PANS specialist. We’re going to switch to a different antibiotic and make an appointment with an allergist to see if that is possibly the cause of the current flare. The doctor also mentioned an IVIG medical trial that we might be able to join. Which scares me, but also encourages me. There is still hope, we are not out of ideas to cure Nadia.

Four Doses…

Nadia has taken four doses so far of her antibiotic. And no change. And I know, it’s so early… and PANS can be complicated to fix. But I’m obviously frustrated as her behavior continues to drive me freaking crazy! I guess a small part of me wants to know we are on the right track. And really, who doesn’t want a quick fix. Although I’ve been told time and time again that getting a PANS kid feeling better is not quick.

Nadia has so many symptoms, but lately she is complaining more and more about being itchy all over, and sometimes she will have a meltdown while screaming, I’m so hot! I’ve asked around in the Facebook support groups I’ve joined and everyone tells me mast cell activation, which is something to do with allergies and histamine, I’ll have to research further. We are supposed to be cutting gluten from her diet, and I guess also cut high-histamine foods. I will do these… but it’s overwhelming all at once. This weekend I need to look up some gluten-free recipes and figure out some snacks she likes. Also, for allergy, we’ve been doing Xyzal, but last night and this morning we gave her Allegra to see if that makes any difference in her itchy complaints. I’m not sure how long we’d need to stay on Allegra to know if it’s better for Nadia. To me, since the medications wear off so fast, like how she needs to take them every 12 hours, we should know quickly… but maybe that’s not how this all works in the body…

Our telephone follow-up with Dr. Standing is Tuesday morning. I know we will go over test results and I assume discuss if the medications are working at all. I’ve seen a few tests results so far, and everything has been normal, I think. One of her titers, I think tetanus, looked high, but I’m not sure if it’s high enough to matter. And her total compliment was low, but again, not sure if it’s low enough to matter…

I’m just so overwhelmed with all the information being thrown at me. Every time I ask a question in the Facebook support groups, I’m told 15+ more things I should probably check into. Some people say look for mold exposure, another person told me there is only one lab in the country that accurately diagnoses Lyme. I think Nadia’s Lyme came back negative, but I also think it’s the test people say isn’t reliable.

Please God, I pray Nadia starts to feel better, and that we get some answers from her test results and thus a path to healing.

Yesterday’s Appointment

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…

Referral

Good news! I just got a message from my pediatrician that she is willing to put in a referral to Dr Elliott in Des Moines. Now, hopefully they don’t wait as long as the university to call to make the appointment…

In other news, Nadia has been baby-talking more and more, a symptom of PANS. When I picked Nadia up from preschool today her teacher said we really need to work on that, as if she was scolding Nadia. Ugh. Such a huge part of me really believes the baby-talk, like so much else, is a symptom of something larger. And that Nadia doesn’t necessarily know how to stop it on her own…

Updates on Nadia

First I want to say, I really, really like our pediatrician. And while she isn’t being unhelpful when it comes to my concerns about Nadia, she doesn’t seem particularly helpful either.

Last week I specifically asked Nadia’s pediatrician to run a few blood tests…

  • ASO Titers – Antistreptolysin O is a blood test to measure antibodies against streptolysin O, a substance produced by group A streptococcus bacteria. Antibodies are proteins our bodies produce when they detect harmful substances, such as bacteria
  • anti dNase B – (antideoxyribonuclease-B antibody) is one of the most common of several antibodies that are produced by the body’s immune system in response to an infection with group A Streptococcus (strep infection). The anti-DNase B test measures the amount of this antibody in the blood.

Basically we were trying to see if strep, the cause of PANDAS, is overloaded in Nadia’s body. The nurse emailed me that both tests came back in the normal range, although I find it weird she wouldn’t actually tell me the exact level. But… this doesn’t mean Nadia doesn’t have PANS, as that can be caused by a variety of infections, including Lyme disease, mononucleosis, mycoplasma (walking pneumonia) and the flu (such as H1N1) and even mold and yeast.

Nadia’s pediatrician seems as if all is well now, not investigating symptoms any further, just wanting to continue occupational therapy. I still haven’t heard a word from the University of Iowa about our referral appointment there which was submitted months ago now. So… I’m taking matters into my own hands, even though everyone thinks I’m crazy, and maybe I am, but I need more answers. There is a physician in Des Moines, IA, not that far from us, that is a PANS/PANDAS specialist. But we need a referral. So… I sent a mychart message and I’m hoping our pediatrician thinks it’s at least worth talking to this specialist about Nadia.