My Kid is a Damn Nutter

[Clodfobble]

Minifobette's labwork came in, which means we can begin the real work of getting her healthy again.

Some numbers are better than Minifob's, but most are worse. The good news is she does not have a vicious bacterial infection like he did (and still does, based on current symptoms,) but she also shows zero good bacteria colonization, despite being on strong probiotics for months. Mild fungal infection, which if we're lucky will be knocked out by a single course of antifungals (not the case with Minifob, but here's hoping.)

But her other metabolic numbers are farther off. They show a significant need for carnitine, which is typical in kids with low muscle tone and delayed physical milestones (definitely her, and definitely not her brother.) Her lactic acid level is also too high, so they're going to do the same bloodwork he had to rule out a mitochondrial disorder. But most distressing is that 5 of the 8 detoxification markers are extremely high (all these levels they're testing for are various substances in the Krebs Cycle.) This is typical of kids who had a single large regression (Minifobette,) rather than weirdness slowly creeping in over time (Minifob.) It doesn't tell us anything about what levels or kinds of heavy metal poisoning she may have stored up, just that we know the cycle's broken, so whatever goes in definitely isn't going to be coming out. But she's far too young to see if chelation drugs can pull anything significant. The only option right now is to try to raise her glutathione level so her body can maybe do some of the work itself after all, but realistically it will be a stopgap measure at best until she's older. IV glutathione is the most effective option, but it's not really a viable one. So we're going to try a transdermal (skin cream) compound first, and test her again in a few months.

Meanwhile, we decided a few weeks ago to just rip the bandaid off, and put her on an elemental diet. This is a liquid formula that is 100% pre-broken-down amino acids and nutrients, so the digestive system gets to take a complete and total break. No more allergens, nothing barreling through and agitating open wounds or adding to the inflammation, just time to heal. It's a very safe and effective treatment, but parents usually exhaust other options first because taking away all food is, of course, not pleasant. But we figured better now than later. For one thing, she's so young there's no social aspect to food for her yet. For another, as long as she's under the age of two, the law says our insurance has to cover it, no questions asked. The formula runs a little under $600 a month, so that's important. The hope is that within 2-3 months max she should be healed and digesting normally, and then we can start reintroducing foods. With any luck this will allow most if not all of her food sensitivities to go away as well--no more pooping completely undigested fruit! We're still hoping it won't be necessary for Minifob, but if he doesn't respond to this latest (third) round of very strong antibiotics, we're going to start running out of options soon.

It was hard to get her started--she refused it for 30 hours straight, and then I broke down and fed her real food for dinner that night because she was literally staggering. But the next morning I went right back to offering only the formula, and from then on she drank it without complaint. And within a day or two she was drinking it eagerly and being much more energetic and happy all around than she has been in a long time. I feel pretty sure that whatever else is going on, she is in less pain now than she was. Unfortunately her poop hasn't improved yet--it's different, which is something, but it's still mostly liquid, very green, and there are still the occasional mystery white globs. No idea what the white globs are--they say they don't think it's the same as the white poop you get with liver failure. It might be dead yeast colonies, but they're infrequent so we've never been able to run a test. The nutritionist told me that even though the input is liquid, she should be having completely normal, solid brown turds (not the word she used) on this diet, so we'll know when we get there.

[glatt]

Originally Posted by Clodfobble

It doesn't tell us anything about what levels or kinds of heavy metal poisoning she may have stored up

If there are heavy metals in her system, where do you think they might have been coming from? If I remember correctly from pictures of your house, it's pretty modern. Do you think it's environmental, or food, or something else?

Are you even saying here that you think there may be heavy metal poisoning?

The amino acid liquid diet is amazing. I hope it works well!