Ways to Help…

I’m trying to figure out a way to use this blog for good. Any ideas? I have a lot of knowledge about PANDAS and PANS, raising preemies, etc… I want to help others. But I’m not a doctor. I can not legally give medical advice. I can share what has worked for us… Or any general questions about our experience others might have. I can give recommendations for doctors, although those I know are limited to the Iowa/Minnesota area. So… I added a link on the bottom right of my homepage to book a chat session with me. Or the link is also below. Stay tuned for more ways I’ll be giving back 🙂

Book Chat Session with Stefanie

Appointments, Appointments

The ‘nanny’ I hired over the summer sucks. I’d fire her, but we have only this week and next with her yet before she moves back to college for the school year. I’m home currently, in our office, while they are playing hide and seek. The girls can’t find her so they are in bothering me to help them look for her. I know she is in one of their bedrooms, and thus can hear them bothering me. Wouldn’t you just come out to prevent the mom from being bugged? Clearly she doesn’t understand why she was hired. And honestly, for two weeks, I don’t have the energy to train her.

Nora’s tutoring is going well. They are on lesson 7 of 12 of the Foundation in Sounds program. I was afraid at first Nora wasn’t catching on, but she must be now. I’m excited for her to realize her own progress! Hopefully a boost in her self-esteem.

Last week was Nora’s first play-therapy session, and our next is this Thursday. Hard to say after only one visit, but as we walked out Nora said she loved the woman. So that’s a good sign. The only downfall is that the woman is a 35 minute drive each way, I know, nothing to you who live in bigger cities, but that’s 35 miles to us, and only sees patients during the day, so for most of our coming sessions I’ll be taking Nora out of school, and hopefully not Nadia too based on driving and school pick-up times. I know school is very important, but I think this play-therapy could help Nora a lot, so it’s important too in my mind.

I had an appointment with Nadia’s doctor in Minneapolis last week, over tele-medicine, of course. We are going to focus back on the basics, mainly healthy eating, so gluten-free for sure, and hopefully dairy-free in the future. We did cut out some supplements to maybe add back in when Nadia’s gut is healed. And we switched to some combined supplements so I don’t have to give so many different items each morning and night. We are doing okay gluten-free. I don’t purposely give her anything with gluten, but sometimes I mess up. I have no idea how to eat out, so everything so far I’ve made at home lately. Which is so hard coming from a family who ate out maybe half the nights before COVID shut down the world. Of course I haven’t seen any improvement in Nadia yet, I realize it’s too soon. But her anger issues are just AWFUL! So awful that I emailed the child psychiatrist Nadia sees at the University of Iowa and made an appointment for August 18th to talk. I don’t love her on medicine, so my fear is they will want to add in another… Ugh. They seem to love medication. She is so young for medicine in my mind. I worry how it will affect her growing brain long-term. Honestly, that is my biggest worry right now.

Googling

The more I Google, the worse off I am. Seriously. Ever since Nora’s teacher mentioned seeing signs of ADHD in Nora I’ve been reading. Both online and a few books. And now I’m convinced both my girls have it. Which I can’t handle. No more issues! I can’t take it! I’m gonna lose my mind!

Speaking of losing my mind. Ya know how Nadia is on Prozac, at only five years-old. Well, she’ll be six in a month, but still. I’m certainly not against medication in general, but she seems soooo young. So I was attempting to wean her off it. She was on 8mg daily, and I had weaned her down to 3.6mg, but last week I saw OCD symptoms returning, mainly lining up toys and lots of sensory issues with her socks and shoes feeling weird. So I increased her dose up to 5mg. How soon I’ll know if that will decrease the symptoms though, I’m not sure. It breaks my heart to see her so upset with her socks. I know she doesn’t understand why they feel funny to her, and then she gets upset, and then doesn’t understand why she is so upset. It’s a nasty cycle.

Last Thursday we had a playdate with a girl in Nora’s class. I’m friends with the mom, so Nadia and Nora both went and I chatted with the mom. Their house was built in maybe the 1970s, needed a few updates and fixes, and this mom has mentioned several times to me that they’ve had water damage in the past. Well, I shit you not, about 45 minutes after we got there, Nadia had an epic meltdown, like how she was two years ago at her very worst. She was kicking, screaming, out of control, I could hardly pick her up to even remove her from the situation. We immediately went home, I gave her Motrin and she seemed to calm down. But her pupils have been large since, a sign of brain inflammation. Looking back, her reaction has to be from the house, I assume they have hidden mold somewhere. And I feel awful I took her there, that the environment set back her progress. So at one today I have a tele-health appointment with her Minneapolis provider to discuss next steps. I’m really just discouraged. We’ve been fights PANS now for two full years. I want to see progress, sustained progress. Below are the supplements she takes daily, if you have any interest in knowing. If you are treating your own PANS child, please don’t assume these supplements will work for your child. Each is unique and this is not to be considered medical advice. It’s all too much. Plus trying to cut out gluten, and dairy, and sugar. Ugh. I know this is very much a long process. Maybe the immunotherapy we do monthly will start to kick in. Something has to work soon!

Nadia – Medications as of July 24, 2022 Download

When life gets you down, you know what you gotta do? Just keep swimming.
Dory

Haircuts, Tutoring & Gluten-Free

Finally got the girls’ hair cut. Tangles were seriously getting the best of us on a daily basis. One night after baths I considered just cutting off the tangles myself… They cut around five inches each. So much easier to handle!!

Nora and her tutor are slowly progressing. The original plan was to start on the Barton Reading program, but Nora didn’t pass the third section of their screening. So instead we need to complete the Foundation in Sounds program first. I swear they were on lesson one, which teaches the sounds for m and n, forever. But today she finally got to move onto lesson two, which I believe is the sounds for v and f. Slowly but surely I guess. The more review the better, but of course I’m anxious to see progress. I actually own both of these programs, but getting Nora to sit down with me and learn feels darn near impossible. But with this tutor she is excited to meet. So that’s a blessing.

This particular tutor has been a teacher for over thirty years, so quite a bit of experience. And while she has no medical background, and thus can not diagnosis any conditions, she mentioned some things to me last week… She sees a lot of ADHD symptoms in Nora. This was actually a little shocking to me, as school has never mentioned such. So of course I started researching… I highlighted the ones that apply to Nora from my perspective. I have no idea if these are enough symptoms to qualify for such a diagnosis, or who even handles this sort of thing. We have that learning disabilities evaluation in November, but that seems so long from now. And even if she does have ADHD, then what? Medication with tons of side effects? That doesn’t sound very fun. My further research pointed me right back to square one… remove gluten from the child’s diet. And dairy, and soy, and sugar. So everything. Okay, sorry, I’m being snippy. But Nora is so picky already. I was doing kind of good with cutting gluten, but lately I’ve gotten more lax, ya know, because it’s really hard, and takes time to cook everything at home, from scratch. But I guess I need to be better at this.

This morning I was feeling a little ambitious and made these gluten-free blueberry muffins. I honestly thought they were quite tasty. Nadia tried them, said they were gross. And Nora refused to try them. And this is why gluten-free feels so hard. So much time and food is wasted. And then I panic and need to feed them and go back to something that is horrible for them. Dinner tonight is supposed to be this chicken and rice casserole I found online. Although I’ll be using dairy, so butter and regular cheese. Which I probably shouldn’t be, but… Anyway, I have a strange feeling they won’t eat it, won’t want it all mixed together. I’ll try to think positive. Am I making meals too complicated? I mean, there are so many meals to make. They can’t have plain chicken, or salmon for every single meal. And they don’t do veggies all that well. Ugh, motherhood.

School Supply Shopping

Is school supply shopping supposed to be an awesome tradition kids remember when they’re older? I picture the girls and I going to Target, getting Starbucks, and having a grand ol’ time. Except that the year I actually took them with me, it was a disaster, them begging for toys which were so nicely arranged right across from the school supply section. So last year I think I just went and bought everything they needed on my own. I mean, it’s not like you get much of a choice… And I was planning to do the same today. Bad mom? Or organized and efficient mom?

The nanny, if you can really call her that, is here today, so I have a few hours to myself. I should be doing laundry, or dishes, or organizing the house, or cleaning it for God’s sake, but I really just want to get away with this rare opportunity for alone time. Or sit and read my current book selection, The Woman in the Library. Which so far I can’t tell is really good, or horrible. My Kindle says I’m 39% complete. But sitting around reading makes me feel lazy. So instead I will probably go wander Target and get school supplies and at least feel like I’ve accomplished something today.

Nora’s 2nd Tutoring

This morning Nora and her tutor worked on the sounds /m/ and /n/. By the end of the session Nora seemed to have an okay understanding. Although honestly I was surprised she was still confusing these. But 50 minutes of just two sounds feels incredibly slow. I know, patience. And so far Nora needs a computer, headphones with a noise cancelling mic, a mirror so she can see how her mouth moves with certain sounds/words, a smaller mouse for her tiny hand, and a stress ball, as she has a hard time sitting for the entire session. Which means I move my computer and hook all her devices to it daily. Pain in the butt. She needs her own computer. She probably even needs a larger table, as this is the tiny table the girls used when they were three… Is she too young, she’s seven, for a desk and computer in her bedroom instead of her in my office? God, I can’t believe she had a toddler beds a few years ago and now I’m wondering about her own desk and computer. Using one of our iPads would be easier, but it won’t work since she takes control over the tutor’s mouse for some of the skills. Do you think in a year I’ll be saying, wow, Nora has made so much progress??

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…

Nora – Tutoring

I hired a personal tutor for Nora. It’s over Zoom, which isn’t perfect, but gosh, everything seems to be over Zoom since COVID. I’ve been doing a ton of my own research. And I’m convinced Nora is dyslexic. I’ve read tons of books about it. I’m pretty much convinced. Of course, our appointment at the University to test for learning disabilities isn’t until November. Which is almost another half a grade away. We noticed Nora had an issue with sight words in Kindergarten, and here we are, two years later.

Our tutor specializes in learning disabilities, specifically dyslexia. She uses the Barton Reading system, which I’m told is one of the best. Nora’s first session was this morning, and so far, so good. Nora actually seemed to enjoy the time online. They will meet one-on-one three times a week for 50 minutes in the summer, and then drop down to just two days a week during the school year.

Nora will still meet with the special education teacher at her school for 20 minutes everyday. Although the tutor said, if Nora is dyslexic, the way the school teaches reading/spelling may very well just confuse her. In fact, she said homeschooling would be really great. Um… nothing against homeschooling, but I just don’t think I’m cut out for it. But I do know the school does do some things that seem to be killing Nora’s self-esteem, like taking turns reading aloud in class, presenting in front of the class, writing on the board, etc. Would an actual diagnosis of dyslexia change any of that? We have an IEP for her special education needs, but the accommodations don’t mention anything about not calling on her in class…

My heart hurts for Nora. She is so shy, hates school, hates reading, and I assume it’s because she finds reading and spelling so difficult. Fun fact, apparently as many as 1 in 5 people are dyslexic. Um… that’s a lot of people! I really want to talk to Nora about dyslexia, but without an official diagnosis, I feel like I may be putting ideas into her head that aren’t true. But how else can I convince her she is a bright child who just might need to learn differently? I hate to see her struggle… I want her to love learning and reading as much as I do.

Florida Pictures

I couldn’t get my original link to work… so look to you right, I added a new category heading, Pictures, and under it you should see a link to the Florida ones 🙂

Per Usual – Catching Up

I suppose I should just stop saying I’m catching up… You can all just assume I kind of suck at making time to write right now. Maybe when school starts? Who knows. I try. I want to write. We’ll see.

Dear God, we are halfway through summer, I think. The girls go back on August 24th, which happens to be Nadia’s 6th birthday. Which reminds me, I need to add plan her party to my ‘to do’ list. July so far has been extremely uneventful. In fact, we didn’t even head downtown to our usual fireworks display. Although mainly because we missed it. It’s always on the 4th. This year, for reasons I’m unaware of, it was on the 2nd. So… yeah. But, there were so many we could see from our house every night around the 4th that the girls didn’t even seem to notice the missing larger event.

In June we went to Florida, Clearwater Beach to be exact, and had a beautiful week to relax. It was so so so so hot there, but still, it was nice to get away. Our hotel suite was gorgeous, the pool was fabulous, and the girls loved collecting seashells on the beach. Eric’s favorite part of vacations is always eating at fancy restaurants with food we wouldn’t otherwise get to enjoy. But… with a five and seven year-old, I think we failed in the fancy food department on this vacation. It was so much easier to just find kid food to satisfy them. This was the girls’ first time flying, and they did fantastic. Nadia was actually so worn out she slept the entire flight home.