My Kid is a Damn Nutter

[Clodfobble]

It's become obvious that I seriously screwed up.

2 and a half weeks ago, we were invited to a birthday party of one of Minifob's classmates. The invitation proclaimed GFCF cupcakes would be available, so we were excited to say we could actually attend. I was pretty sure they would be made out of rice flour (as most pre-made GF items are,) which is one of the things he has a digestive sensitivity to, but I figured we could handle a day of extra bad diarrhea for the opportunity to actually practice social skills and pretend he has friends in the real meaning of the word.

Well. As you can tell from the tone of this post, that was a poor decision. It occurred to me too late that they were almost certainly made with real eggs, which he has a true allergy to, and a pretty strong one at that. I'm so used to making everything myself, I actually forget to think of all the things he can't eat--I forget that normal people don't make their bread products with potato starch by default like I do.

So. Full-on screaming and flailing tantrum within 30 minutes of eating. Needless to say, he couldn't participate in the rest of the birthday party. So much for social interaction. But it continued for 5 straight days. And since then he's been borderline--he'll mostly behave in the house, but I can't take him out in public. Confirmed that the hard way when I tried to let him walk with me to the mailbox like we'd been successfully doing for a couple months now, and had to do the neighborhood walk of shame carrying him all the way back to the house shrieking at the top of his lungs.

Cognitively he's still pretty much where he was, it's just his behavior that's regressed 6 freaking months. His teacher says he's suddenly having some trouble with changes in their routines, things he has been fine with since day one of school. Yeah, tell me about it. Obviously the egg is long out of his system, but the doctor's theory is we reinflamed his intestines by pouring allergens through it just as it was trying to heal, and he'll need extra time to recover from that. Great. No more fucking birthday parties, kid. Sorry.

Meanwhile, the rotation diet seems to have had no effect; we are still losing foods at a regular rate. Pears and fish are the latest casualties. We're down to about 9 foods total that he can eat.

We're beginning the process of getting certain things documented (blood tests and whatnot) so the insurance company will cover the elemental formula for him. The blood tests will also hopefully give us a clue as to which particular steroids or anti-inflammatories he might respond best to. He'll probably be on the liquid diet with his sister by Thanksgiving.

[xoxoxoBruce]

Originally Posted by Clodfobble

It's become obvious that I seriously screwed up.

And you probably will again, that's life. After the crap you've been going through, the things you've had to learn, much of it on your own breaking new ground, it's a fucking miracle you haven't made more mistakes.

I think you've done a miraculous job, and I worry people don't realise how much you've sacrificed, how much of yourself you've put into the battle... especially the people closest to you. From what you've written about what friends/family have said and done, or at least proposed to do, they don't get it... and don't appreciate your efforts.

I know your personal life is none of my business, but you've laid out so much in this thread, I'm concerned what toll this lifestyle is taking on you. Yeah, I know you don't have a choice, some might, but you don't. But please don't be too tough on yourself, you don't need or deserve that... mkay?

[limey]

What xoB said.