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  • Tag: PANDAS

    • Four Doses…

      Posted at 10:45 am by Stefanie, on November 6, 2020

      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.

      Posted in PANS | 4 Comments | Tagged Dr. Standing, gluten-free diet, low histamine diet, mast cell activation, PANDAS, PANS
    • Yesterday’s Appointment

      Posted at 9:57 am by Stefanie, on November 3, 2020

      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…

      Posted in PANS | 4 Comments | Tagged Dr. Standing, PANDAS, PANS
    • Referral

      Posted at 4:00 pm by Stefanie, on October 27, 2020

      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…

      Posted in Nadia | 1 Comment | Tagged PANDAS, PANS
    • Updates on Nadia

      Posted at 11:37 am by Stefanie, on October 27, 2020

      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.

      Posted in Nadia | 2 Comments | Tagged anti dNase B, ASO titers, PANDAS, PANS, strep
    • Finding Help

      Posted at 9:45 am by Stefanie, on October 20, 2020

      I’m guessing there are a million mothers out there, who, at one time or another felt like something was wrong with their child, and no one seemed to be willing to step up and help. I’m feeling this way with Nadia right now. I just want her to be well, to be ‘normal’ if there is such a thing. Basically for parenting her to not feel like one nightmare after another.

      I’m still really stuck on thinking PANS/PANDAS is at least worth looking into. But many in the medical community don’t think it’s a real thing… so getting someone to help us might prove difficult. I’ve connected with a few moms through Facebook in PANS groups, and they seem to think it’s worth researching as well. In fact, one mother told me to call her later, as her daughter as confirmed PANS and one of her main symptoms was feeling wet even when her underwear were dry. Coincidence?

      This is the email I sent one of Nadia’s occupational therapists a few days ago..

      Good morning,

      I apologize for not getting back to you sooner. I’ve felt quite overwhelmed with moving to a new home, my girls starting school, and overall with Nadia’s behavior lately. Thank you for reaching out, I do very much appreciate your input. 

      Nadia and her behavior is really always on my mind. I’m so worried about her and desperate to get some answers. We were referred to The University of Iowa Center for Disabilities and Development, so I hope that appointment can be scheduled soon. In the process of scheduling that appointment they required Nadia’s preschool teacher fill out a form, which I have attached for your, and Taylor’s review, as I don’t have her email. The report was really upsetting to me, as I wasn’t aware of just how behind Nadia seems to be compared to her peers. She’s obviously been struggling with a variety of sensory and OCD symptoms, but in addition her teacher pointed out a few other struggles… 

      ·  social-emotional

      ·  fine motor

      ·  numbers/shapes/letters

      ·  clumsy/awkward/poorly coordinated

      ·  fearful/anxious/worried

      ·  lacks energy/slow-moving

      ·  in a world of her own/withdrawn

      ·  poor handwriting and cutting skills

      Ugh, I feel like the list goes on and on. We originally started with Taylor working on messy hands, but honestly, Nadia has been a lot better in that area lately. In fact, all the sudden she is a messy eater, puts her entire hand into her mouth and smears food all over her mouth sometimes. Speaking of eating, she is extremely picky, but then again, so is her older sister Nora. 

      Biggest issues at home right now are her still always ‘feeling wet’ after going to the bathroom and not wanting to wear underwear or pants or really anything on her legs. And winter is coming! We have lots of other issues too, like all the sudden hates baths and being in her bed, but I’m not sure how many fit into the OT category, like her dramatic mood changes, epic meltdowns, etc.

      I sent a mychart message to her pediatrician a few nights ago… probably sounding like a crazy mom, as I’ve obviously been researching how to help Nadia. Every time I look up Nadia’s symptoms I come across PANS or PANDAS disease. It’s like she has almost every symptom. I know many in the medical community don’t believe it’s real though… and Nadia could very well just have all the other issues separately, like OCD, sensory, etc. That said, have you ever treated children with PANS? Just curious…

      Another thought. Since Nadia was born at 30 weeks, she technically wouldn’t turn four until Halloween, her due date. And I know they say preemies catch up by the time they are two usually… but just makes me wonder. Nadia is in a four-day preschool program meant for four and five year-olds, when she would be still three if born full-term. Do you think it’s possible preschool is just expecting too much from her? That perhaps she should drop down to the two-day program for three and fours, or the three-day program for four year-olds?

      If you have any insight for me or thoughts, I’m all ears. Or if you can help Taylor design OT sessions to help Nadia, that would be amazing too.

      Thank you so much!

      And here is her response back to me…

      Hi Stephanie, 

      The first thing that came to my mind when reading your email was re-current strep and PANS or PANDAS. I have worked with one other family towards that diagnosis. I can reach out to your pediatrician and discuss the med provider here in Iowa that works with children with that diagnosis. 

      That being said, please don’t worry. So easy for me to say, as I am not her mother. I have 3 of my own and understand well the never ending mom worry. Thanks for trusting me enough to seek my input. I have been reviewing Taylor’s notes and she is doing a wonderful job with Nadia. I think there are some things we can add and we will work together at coming up with next steps.

      Know that we are on your team and will help get things figured out so Nadia can thrive.

      Maybe someone does care! Reading this email made me feel a lot better! Now, if only the University calls to schedule that referral appointment…

      Posted in Nadia | 4 Comments | Tagged occupational therapy, PANDAS, PANS
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    • About the Author

      Stefanie

      Stefanie

      Subscribe to follow my infertility, pregnancy, NICU, and PANS motherhood journey. Outside blogging I enjoy reading, coffee, and long chats with good friends. I live in Iowa with my husband and daughters, Nora (5) and Nadia (4).

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