Nadia’s Flare = Me Losing Mind

For the past month Nadia has slowly been going downhill. This weekend though was awful. She was angry, aggressive, at times I’d say violent even, toward her sister, defiant, just not my sweet Nadia. And I know she’s not purposely being this way, as she tells me she doesn’t want to be mean. My heart is breaking for her. But at the same time I am losing my own mind. From the outside world she is a badly behaved kid and I am handling it well. Inside though, she is very sick and I am falling apart. I wouldn’t wish this hell on anyone. Thankfully we have in person visits with our specialist in MN next week for both girls. But those can’t come soon enough. I actually emailed that doctor this morning for some advice. If you have any interest in knowing all of Nadia issues, or are concerned about a child you know, read this book. It’s very interesting. Although scary that Nadia has almost every issue mentioned, and Nora has more than half the issues. I really don’t know what else to say, aside from I feel like life is falling apart. We’ve been treating this for almost two years with Nadia now… and currently she isn’t much better than when we started. I’m exhausted. I assume Nadia is too. And while Nora has fewer issues, I feel like her’s are more centered around learning and separation anxiety.

I know a big part of healing is cleaning up our diet. But I feel like I fail most days in that department. This weekend I went through the house and got rid of everything with gluten. The girls are so so picky though. There are some gluten-free treats I can get them to eat, but most of those aren’t healthy. I mean, gluten-free yes, but no real nutrients. This just feels so overwhelming to deal with picky kids that now aren’t supposed to have gluten, dairy, sugar, or yeast. I guess I’m focusing on ridding the gluten first. But even that feels hard.

This morning I asked Nadia’s doctor to consider a longer course of doxycycline. It’s the best antibiotic to treat Lyme and some of her co-infections, although it can be staining to adult teeth which haven’t come in yet. Am I a bad mom to think to hell with her teeth? I’d rather save her brain. Seriously though. We’ve been using a combination of herbs known to kill Lyme and co-infections, but I have a feeling they aren’t enough. I’ll see what her doctor thinks I guess. Antibiotics aren’t great either, more harm to the microbiome, but we can try to help that with probiotics, which both the girls already take. Right now Nadia is on 41 medications/supplements, and Nora is on 34. Some overlap. But it takes me a good 30 minutes twice a day to get all these ready for them to take. And then convince them to take them, as most are capsules I open and mix into some type of food. Which obviously tastes disgusting. I don’t know how much more of this I can do. I know IVIG might help both of them, but it’s extremely expensive, does come with risks, and is invasive, as it’s a 48 hour IV drip every time they need a treatment, which is monthly for some kids. Someone please tell me this is all going to work out…

Onto laundry I guess, and focusing on the last five days of school… Please pray for us, if you’re the praying type.

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

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.