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.

4 thoughts on “Nadia’s Flare = Me Losing Mind

  1. It all sounds absolutely overwhelmingly awful and quite grim. Sending you good wishes and knowing that isn’t real help

  2. Keep helping your precious children in all the ways that you know best. It all sounds so hard and so frustrating. Praying you get some help and some snaswers soon.

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