For those of you who are not insane about musicals (and total Star Trek geeks to boot), that’s from a song in the Music Man. It’s been running through my head for a week now…
Things here are worse than rough. Brutal, I’d say. The big question is WHY.
Alex: he’s decided sleep is for amateurs. I feel like I’m back in the bad old decade of his infancy and childhood (through age 10). He’s just not doing it. And if Alex doesn’t sleep, Judy doesn’t sleep. It’s been getting worse since July, but now it’s staggeringly bad. The last 3 nights, we’ve averaged 4 to 5 broken up hours. I don’t know how he’s functioning but I’m falling apart.
It’s easy to blame it on the worms and certainly, the initial inflammation they cause could be a factor. But I made trouble too by adding into Alex’s regimen OSR back in July. OSR: oxidative stress reducer, made by Dr. Boyd Haley. Supposedly quadruples glutathione levels, which sounds great. Certainly, Alex’s cysteine levels are perpetually low. The bad news is, it’s based in sulfur and there’s nothing bad gut bugs like better than sulfur (except for sugar, of course).
Apart from the initial bout of fury (well, he did have an unpleasant surprise when he got home from school last Monday to find all his beloved rice crackers were gone and in their stead were all the nut cookies his guilty mother had been baking that afternoon), he’s doing well with his diet. He’s eating a lot less, but still eating. And to tell you the truth, this isn’t a bad thing. He’d definitely been over eating pretty severely.
His mood is good in spite of his major lack of sleep. Cognitively, he’s still doing well (for him) although certainly not quite as good. Then again, I am so tired that it’s getting hard to think clearly myself.
Liam: a train wreck. 3 weeks ago he complained of a sore throat. I didn’t think much of it, assuming it would turn into a cold. It never did though, but instead just passed in 5 days or so. However, since then his “amorphous inflammatory syndrome” as I call it (AIS for short) is back in full force. He is covered in eczema – worse than I’ve ever seen, actually. The fatigue is debilitating. He is beyond pale, has black circles around his eyes and worst of all, the emotional lability is back. I got back a PANDAS test on him 2 weeks ago. Levels are well elevated.
So, to sum up:
a. Is this rapid accumulation of worms the problem? That is, since there is a period of increased inflammation after an inoculation that can last about 2 months, is the cumulative effect of inoculations only 1 month apart too much?
b. How much of a factor is the “fall regression”? It’s always been a major factor for my boys so undoubtedly, it’s playing a role. How much though I don’t know.
c. Is Liam’s behavior at all mediated by a flare-up of PANDAS? I have to believe so.
d. Is Alex’s sleep issue the result of the worms, the fall, or the flare-up of bad gut flora?
How am I feeling? I’m just as much of a muddle at the moment as the boys. Firstly, I’m horrifically sleep deprived so I can’t say I’m feeling good. On the bright side, I’m no Flagyl too (as clostridia is so easily passed around) and my IBS is about 90% better. Flagyl is just wonderful for me. 3rd time I’ve ever been on it and it’s the one medication in the world that makes me feel great. In fact, if I weren’t so tired I would feel better now than I have in years. My fibro is bad right now, but it’s always worse when I’m tired. So, to sum up, I can’t directly attribute any of the good or the bad to the worms…except that I am having no fall allergy symptoms. I continue to breathe through my nose beautifully, which rocks.
My Dad: unchanged I believe.
So that’s it from here, 27 weeks after the first inoculation, 22 weeks after the 2nd, 14 weeks after the 3rd, 10 weeks after the 4th and just about 5 weeks after the 5th.
Here’s to hoping my next entry will bring better news.