Nadia – PANS Update

Nadia is… okay I guess. She has her moments of tantrums, melt-downs, whatever you want to call them. Times where she wants to claw and kick at her older sister. But she is five, will be six in August. Don’t all five year-olds have their moments? So it’s really hard for me to say what is normal, what is normal for her, and what is lingering PANS issues.

Nadia is still on maybe 40 or so supplements daily, several of which are prescription immune supports. I hate the medicines, and so does she. It takes me maybe 30 minutes each morning and night to prepare it all, measure it all out, as she can’t swallow pills yet. And has no interest in learning. When will I ever be able to forget my daughters’ have health issues?

I’m terrified for Nadia to start Kindergarten next month. Like, seriously gives me anxiety. She says she is excited but also a little scared, which I assure her are both normal feelings. But I guess the stress of her actually going, well, I’m afraid that will set back her health from a physical standpoint. Like, will some of her more serious symptoms come back after school starts and her body is stressed? God help me if her OCD returns. In fact, I have her weened down to just half her usual dose of that medication, and so far, so good. I’m scared to lower it any further though, thinking maybe she will need the support when school starts. At least for a little bit of time.

I do trust this doctor in Minneapolis, but gosh, we’ve been treating PANS for over two years now, I want to see some huge gains, and I don’t want 40 supplements forever. Maybe that’s too much to ask for at this point. I mean, she is wearing underwear, that’s is huge. Hopefully the school uniform won’t be an issue…

Weed Killer and Fertilizer

I might be looking too far into this… but look at the chart below…

Not sure how well you can see it, but the yellow highlight is the day our lawn care company came and sprayed on a treatment of weed killer/lawn fertilizer. All the -1’s that follow in the rows under their respective symptom, show Nadia’s reaction. Yes, it could be a coincidence that her reaction was after the treatment. She could have been exposed to something the day before on kindergarten visit day. But just seems odd to me. And I know these products for your lawn are awful for people… And we keep the girls and dog away from the yard after applications. But I also know our neighbors would FREAK OUT if out lawn had weeds. They freak if our cutting schedule is a day off. Don’t even get me started on them.

I just emailed a company that advertises safe, organic lawn care products. Is that even a thing? Can we kill weeds and not harm ourselves?

14 Days

Fourteen days until Nora is finished with 1st grade and Nadia graduates from preschool. The countdown is on. Just this morning I posted a nanny position. I’ll be the first to admit I am not great stuck at home with the girls for weeks on end. COVID proved that. They are sort of homebodies though, so hopefully we can find a college girl who wants to play with worms and read to them all summer, LOL.

Nadia was doing so so so so good. Until two weeks ago. She attended kindergarten visit day, which she was so excited about, and happily walked into without hardly saying good-bye to me. The next day the angry outbursts started all over again, and haven’t stopped yet. I’ve tried to think of what changed. Maybe she was exposed to a new person with a new virus. Maybe the school has a ton of mold? Maybe one of her supplements is causing too much detox too fast? How the hell am I supposed to know. This PANS shit is such a guessing game. One that feels never-ending and ever so complicated. Half the time I don’t even know what we’re fighting… But we proceed. One day at a time. And hope tomorrow is better.

I still haven’t heard back about how Nora’s school evaluation turned out. I assume they are still working on it… She is almost in second grade now though. Remember, fourteen days. I feel like if reading is an issue we need to get onto solving the problem.

Nora is still really sad at school drop off each morning. Do you think she’ll be different next year when she is the big sister to Nadia there? Will Nora take on a more leading role and show Nadia around? I hope…

I think she is growing up, and so begins to dream dreams, and have hopes and fears and fidgets, without knowing why or being able to explain them.

Louisa May Alcott

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.

Long Overdue Update

I haven’t written in forever. And now, so much has happened, I’m overwhelmed with how to explain everything you’ve missed on our PANS journey. I guess maybe highlight the big points for now…

School is out. I can’t believe Nora will be in 1st grade come August… Wasn’t she just born??? I did remember to take a few pictures the last day of school, and a few at the park where the school went for the afternoon.

I’ve been interviewing college girls to come watch the girls a few hours a day so I can get my long list of crap accomplished, like organize every room of the house, buy furniture, do laundry… you get the idea. So far I haven’t loved any of my choices. We have one more interview tomorrow. Nora is in dance camp each morning this week… so thankfully no constant fighting at least for a few hours.

We went to Adventureland in Des Moines, IA which is not that far from our home a few weeks ago. I’m surprised the girls liked as many rides as they did, I kind of figured they, well, especially Nora, would be terrified. But they both had a lot of fun!

And then the following week we went up to Minnesota for two reasons… One to hang out at the Great Wolf Lodge water park, and two, to see another PANS specialist who I’d heard wonderful things about. I’ll write a separate post on that visit, soon, I promise.

And here are a few more random pictures of summer so far 🙂

Stop the antibiotic?

Nadia has another yeast infection. And of course she doesn’t like cream on her bottom as it just reinforces her ‘wet’ feeling. I’m considering stopping her antibiotic. I hate to, as I trust the PANS MD who is following Nadia, but a huge part of me feels like it’s doing more harm than good, at least right now. I’m going to skip it today, and I guess email her doctor and see what she thinks…

This afternoon is our second physical therapy appointment. I have to admit, we weren’t great about doing the exercises… so this might be a waste of time. And I’m considering stopping the occupational therapy through the summer.

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.