Quick thoughts on our first week of this new chelator

He’s constipated. We’re now feeding him 3-4 prunes every morning with breakfast to get him to go in the evenings without tons of straining / pain / crying. Its important to keep his gut moving because that’s how we rid our body of toxins. With the chelator pulling extra toxic stuff out, we don’t want it in him any longer than necessary.

Behavior wise, we have NOT seen brain fog. First dose of chelator was Monday morning. Tuesday he had a new behavior at Alpine – wrapping his fingers around his neck, squeezing, and holding his breath until he turned red. FUN times. They redirected with “hands down”. He did it several times Wednesday at D11 and at Alpine. The second therapist of the day Wednesday at Alpine told me that instead of the redirect she ignored him entirely the only time he did it for her, and he stopped and said “OW”. She said “that’s what happens when you squeeze your neck”. He hasn’t done it since. We’ll see what today brings. We’re seeing some spinning in place, but he’s easily redirected.

Sleep wise – he’s going to sleep just fine, but has been waking up much earlier than usual. Wednesday he was up at 5:30 and today he was up before our alarm went off at 5. This is a distressing pattern.

Sweating – still doesn’t seem to be doing much. The heavy night sweats stopped about a month ago. We’ll continue to monitor.

Talking – his FOP’s at Alpine were overall down this week, but both low days the therapists told me they were having too much fun making him laugh (tickles as reinforcers) and that’s why FOP’s dropped. At home, we’re seeing a few more multi word things. This morning at breakfast he dropped his car…. He said “OH NO”. I said “What Happened”. He said “Happened….. Ah Dropped IT”. I said, “GOOD JOB, you want me to pick it up”. He said “Yes”. We’ve been practicing answering with “I Dropped It” but this was the first time he did it without any prompting. So that’s exciting.

Eating – no changes to his appetite. He’s still voracious.

Anxiety – he’s been extremely clingy this week. Granted, that could very well have been because we had a major crime up our street on Monday and the whole neighborhood has been a flutter, and busy, and noisy. Sobbing when I am out of sight at home is not generally normal for him so we’ll continue to watch that.