The MD & Me | ~ my not so glamorous but oh so blessed life ~ | Page 2

- Confused
  
  Posted at 10:56 am by Stefanie, on December 4, 2020
  
  Nadia finished her 30 days of Zithromax on Monday and we are still tapering down her steroids. If you asked me on Monday how she was doing, I would have said not much different. Maybe washing hands less, a few less epic meltdowns… But other things are worse. She is still refusing underwear or pants and thus still not attending preschool. She is extremely defiant, her answer to everything is, I don’t want to! Today and yesterday though she seems a little more pleasant. Willingly took her medicines, slept better last night, goes to the bathroom alone without screaming, I’m wet. Although still holds herself like kids do when they need to use the restroom.
  
  Yesterday we had a follow-up with the PANS specialist we saw in Creston, IA. Her recommendation was to switch to a new antibiotic, Augmentin, and add in a very dose of a medication usually used for drug overdoses, Naltrexone. She said it is sometimes used for auto-immune issues.
  
  Then, last night I was chatting online with a Naturopath, Herbalist, and Nutritional Therapist in Australia… I know, crazy. Right? Her son had PANS which she successfully treated naturally, and now she has started her own practice treating other such PANS children. Check her out here. She gave me a treatment plan and some tests she wanted to do… but asked I not share the details, why I’m not sure. If that weird? This morning I ordered the supplements and the tests, but now I’m at a crossroads so to speak. I can’t very well continue with the PANS specialist who is an MD, and also follow the Naturopath route of treatment. Thus, I’m confused.
  
  Posted in PANS | 5 Comments | Tagged Augmentin, Naltrexone, Naturopath, PANS, zithromax
- Zoloft
  
  Posted at 9:01 am by Stefanie, on November 18, 2020
  
  Nadia’s doctor emailed me back yesterday and agreed that something for anxiety might help Nadia while we try to figure out her PANS treatment. The pharmacy had to order in the liquid version of Zoloft, so hopefully they will have that today for us to start. I know that won’t be a quick fix either. My fear though, is it will mask a lot of these PANS symptoms and we’ll never actually get to the root cause…
  
  When Eric got home from work yesterday he started talking to Nadia about how if she wears underwear and goes to school we will all go to Target and get a toy. Yes, we are not above bribery at this point. But sadly, as much as Nadia loves Target and toys, even that didn’t work. She got all dressed today, but perhaps 30 seconds later, took off her underwear… I question her a lot, she says she doesn’t want to wear underwear because she thinks wearing them will make her pee. Although this has never happened. And she says she doesn’t want to go to school because mom isn’t there. I’m running out of ideas on this, and trying to focus on the positive… I am able to stay home with her. She is in preschool which isn’t required. And maybe staying home will prevent her from getting COVID? As rates here are really, really high.
  
  So yes, she is home with me again. And again I feel like I will get nothing done around the house, as she is constantly asking for my help, for me to go to the basement to get a certain toy with her, to play with her, to braid her dolls hair, etc.
  
  I better start some laundry quick before she notices I left her playing in the basement!
  
  Posted in PANS | 2 Comments | Tagged PANS, preschool, separation anxiety, Zoloft
- Home
  
  Posted at 9:52 am by Stefanie, on November 17, 2020
  
  Nadia is home with me, again, as she has been since Thursday. I still can’t get her into underwear and thus to preschool. It’s almost like she has a panic attack every time going to school is mentioned. So I didn’t push it yesterday or today. But I guess my fear is, the more she stays home, the harder it will be to ever get her back to school… Her doctor did say to try to limit some of her stress until we see some improvement…
  
  Speaking of improvement. I haven’t seen any yet. Okay, maybe some, but so little I could just be imagining it. Yesterday the supplements arrived that the doctor recommended. Mostly vitamins and probiotics, which are capsules. I looked online and it said I could open them… but what to sneak the powder into… We are tapering down her steroid over a month. I feel like a lot of PANS parents said a steroid helped right away, but I can’t say the same. The doctor said sometimes, once they are off it, you notice the improvement when the side effects of the steroid wear off. We’ll see I guess. I’m not entirely sure we are even on the right antibiotic yet, as I don’t think we know the real trigger of this yet. And sleep is still not going great. Maybe due to the steroid… She wakes often during the night wanting something to drink.
  
  And then there is Eric. He is still on board with trying PANS treatment, but he admits he is skeptical. We haven’t been told any of the tests done came back actually showing anything abnormal. Although, the books I’ve read on PANS say there are soooooo many things that can cause it, and usually several things in combination are the trigger. How could one possibly test for everything? But if you don’t know what you’re treating, how do you treat it? And Eric says, in medicine, if you look hard enough, you will find something. I think that was his way of saying, if we find something, it still doesn’t mean it’s necessarily the trigger.
  
  Last night Eric said he thought we should consider an anxiety medication for Nadia. He meant, keep with the PANS treatment, but in the meantime, see if a SSRI, like Prozac or something, would make her feel better, allow her to go to school and function more normally, until we figure out the PANS treatment. I guess I’m not sure opposed to such. My fear is, it will work, and cover the root cause of all this…
  
  I wish God would give me a sign
  Something to show me I’m on the right track
  That I’m making good choices for Nadia
  I pray for our doctor, that she may have knowledge and wisdom
  Ultimately though, I pray for Nadia
  That we may find healing
  
  Posted in PANS | 2 Comments | Tagged anxious children, PANS, steroids
- Failing
  
  Posted at 8:48 am by Stefanie, on November 13, 2020
  
  This is so hard. Parenting Nadia feels so impossible most days lately. Yesterday and this morning I couldn’t get her to preschool. And yes, I know that sounds crazy, she is four, how can me as an adult not get her to preschool. But I can’t. I dressed her three times. And three times she had meltdowns over feeling wet and hating school while she ripped her clothing off. Sometimes the stress is just too much for me, and yes, then I give in to her and give up as I shift my focus to Nora who does have to be at school on-time, and so often doesn’t get enough of my attention. So Nadia is home again with me today.
  
  Last night Eric admitted that he thinks Nadia needs anxiety medication probably more than antibiotics. He keeps saying it’s not that he doesn’t believe in PANS, but that’s sure how it feels to me, which is making all this so much harder. I feel like he is disappointed in me every time I can’t get Nadia to preschool. He believes I do too much for Nadia, and maybe I do. A part of me has always wanted to protect and comfort our girls since the moment they were born. I don’t know how to stop that, nor do I really want to… but am I enabling my girls? How do I know if Nadia is playing me, or if her behavior, which seems like a panic attack over attending school, is real?
  
  The antibiotic Nadia is currently on is Zithromax, which is known to kill the bacteria, Mycoplasma pneumoniae, or walking pneumonia. Her antibody results for Mycoplasma pneumoniae originally came back as indeterminable, which the doctor assumed to mean that was probably her trigger for PANS. Well, they re-ran the test and it came back negative. So… I need to call the doctor and see if switching the antibiotic is now appropriate. Maybe that’s why I haven’t noticed really any improvement in Nadia.
  
  Posted in PANS | 19 Comments | Tagged Mycoplasma pneumoniae, walking pneumonia, zithromax
- 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
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  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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