My Kid is a Damn Nutter

[monster]

Originally Posted by Clodfobble

It turns out it is a pretty big chunk indeed--several stitches and mild scarring are expected.

Get the shark attack stories ready......

[morethanpretty]

Originally Posted by Clodfobble

After a week-long maelstrom of countless phone calls, it's all been settled. Mr. Clod is going to Minnesota on May 9th to get a big chunk taken out of his leg at the University. It turns out it is a pretty big chunk indeed--several stitches and mild scarring are expected--but I honestly think he's kind of happy that he can be the one to do/endure for the kids, for once. Testing is done immediately, so we'll have confirmation that we can go ahead with the kids' procedures before he even gets back on the plane. We got ourselves approved for an "in-network exemption" through insurance, which means it's completely covered, and my mom is giving us air miles she was never going to use for us to fly him up there. It's worked out as well as it possibly could have, considering.

This is probably better than flying the children to New York for the procedure. Your children might need other medical procedures that require general anesthetic and the medical center that perform that procedure could require the same data this ambulatory center is requiring. This way you have the information already, instead of having to delay to find a facility that will do the procedure in the event they have the gene but you don't know, or having to delay to get Mr. Fob tested so the facility you want to use will have the information it needs to go ahead.

In other positive news, my mother-in-law gave my daughter something similar to this for her birthday. This is nice not because of the item itself, but because she got it "from a friend with an autistic child, and I guess he'd grown out of it." This is the first time she's acknowledged Minifobette's autism in any way, even indirectly. Giving a toy that is at least nominally "meant for" an autistic kid is a huge step for her.

I am jealous of your child, I want her toy.
I don't think you have to be autistic to enjoy that...

[squirell nutkin]

very good news, big missing chunk aside.

[xoxoxoBruce]

Good to hear the extraneous bullshit is working out, you've got quite enough on your plate without that. Oh, and go granny.

[glatt]

That's awesome that you figured out the testing, and it's covered and the miles are free. Way to go!

[Clodfobble]

9 more days. Come ooooooon May 17th...!

Part of the deal with this whole colonoscopy/endoscopy/pill cam procedure--wait, did I mention the pill cam? I didn't. It travels all the way through them, taking a photo every 30 seconds that is transmitted to a little box they wear on a belt until it passes. This enables the doctor to see damage in the small intestine, the vast majority of which is inaccessible by even the longest scopes. Irritatingly, despite the advanced technology of a freaking wireless digital camera the size of a pill, it does NOT in fact have any sort of "channel" function on it. The camera broadcasts indiscriminately, and the boxes pick it all up. So any two children who are having the same procedure done must stay at least 50 feet apart from each other for a minimum of 8 hours, lest their boxes pick up the other one's photos. So Minifobette will come home to chill after her scope, while Minifob will have to spend the rest of the day out playing minigolf and arcade games with daddy. So sad for him, I know.

ANYWAY, part of the deal with this whole procedure is that we don't want to miss anything that may be held partially under control by their considerable number of digestive medications. So we were told they absolutely must be off all of them for three weeks. No probiotics, no antimicrobials (sure, why not give Minifobette's infection the chance to become sentient,) and no digestive enzymes (Minifob didn't want to absorb any nutrients from his food anyway.) The girl has at least held steady at her usual "not on antibiotics" nastiness, though we've had to double up her normal dose of laxatives to keep it moving... but the boy is falling apart. On Friday I got an email from his teacher noting his downward spiral and asking what had changed for him. We have an agreement that I don't tell her when we're making changes to his medication, so she can act as an objective observer on his behaviors and skills. She said that he is spending most of the lunch period trying to lay across the bench, a movement he does to put pressure on his abdomen when it hurts. He's also verbally stimming almost nonstop (chanting the time on the clock every second as it ticks forward, fixating on chains of syllables in falsetto like "digga digga digga," clicking and ticking and making every noise you can imagine with his mouth...) I admit, for me this is worse than meltdowns, I have a really hard time with the constant aural onslaught. But as I told his teacher, all I can do is keep scaling back his food to more digestible stuff (I'll be down to nothing but applesauce and elemental formula boxes soon, after which I can't go any further,) and just keep him home from school if he becomes unmanageable. On the other hand, it's kind of good for his future Kindergarten teacher to get to see him like this, so she understands what I mean when I say he can't eat certain things.

Meanwhile, Mr. Clod just left for Minnesota. Turns out I was still underestimating the size of the operation: they'll be taking a 4-inch long piece of muscle out of his leg tomorrow morning. There's a sample video of it here for those of you who like watching medical procedures. It's fairly creepy.

[Griff]

Originally Posted by Clodfobble

they'll be taking a 4-inch long piece of muscle out of his leg tomorrow morning.

Yikes!

[DanaC]

Originally Posted by Clodfobble

We have an agreement that I don't tell her when we're making changes to his medication, so she can act as an objective observer on his behaviors and skills.

Clever.

Hope all pans out fine and fast on this Clod. And get well soon Mr Clod.

[Clodfobble]

Yeah. My mother-in-law actually decided to travel with him. He insisted it was a waste of her money but she would not be deterred, and I'm glad. She's afraid he's going to be completely disoriented/nauseous from the anesthesia and not be able to get back to the airport on his own. Me, I think he'll be completely cognizant... of how much pain he's in. They told him he'll be able to walk, but I expect it will be somewhat like he's had a c-section on his thigh, and the bottle of ibuprofen he packed ain't gonna cut it. (They'll give him a local anesthetic on the leg before discharging him, but I don't think they're giving him any sort of prescription for later, or if they do he won't be able to fill it until he gets back Monday night.)

[monster]

oh ug. thoughts are with Mr Fob

[skysidhe]

I hope they give him an RX and glad the mom went with. Best wishes!

[ZenGum]

I think Clod is going to be deeply conflicted about this.

Trials hold promise of coeliac vaccine
Coeliac sufferers may not have to eliminate gluten from their diets after a successful trial of a potential vaccine.

Scientists at Melbourne's Walter and Eliza Hall Institute say they have tested the vaccine on 34 people.

If future trials are successful, the vaccine could be available by 2017.

Doctor Jason Tye-Din says it could treat around 90 per cent of coeliac patients.

"The gluten-free diet is very difficult, it's costly, it's complex and unfortunately even people who follow it very well, there's a large proportion who still don't get full healing of their bowel," he said.

"Alternatives to the gluten-free diet are really needed."

Dr Tye-Din says the aim of the vaccine is to desensitise people to the harmful effects of gluten, in the same way that allergy desensitisation therapies work.

Well, so long as the vaccine doesn't involve mercury...

[Clodfobble]

Originally Posted by ZenGum

I think Clod is going to be deeply conflicted about this.

...

Because if your vaccines are problematic, just redefine what a vaccine is, right? This is not a vaccine by any common understanding of the word. It is a frequent series of injections of tiny, almost imperceptible amounts of gluten, in an attempt to desensitize the immune system. It does not cause an immune response, does not generate antibodies, and does not confer any sort of "immunity" to a pathogen. It has more in common with homeopathy* than the traditional vaccination mechanism.

*Not something I subscribe to, mind you, but they are the ones who would tell you that a homeopathic tincture of imperceptible amounts of gluten taken over a long period of time is what you would need in order to get over your gluten-related disease.


In other news, Mr. Clod's test was negative as expected, he is awake and recovering fine, and he'll be on the plane home in another hour or so.

[glatt]

Originally Posted by Clodfobble

:he is awake and recovering fine, and he'll be on the plane home in another hour or so.

Good job, Mr. Clod.

[DanaC]

Originally Posted by Clodfobble

Because if your vaccines are problematic, just redefine what a vaccine is, right? This is not a vaccine by any common understanding of the word. It is a frequent series of injections of tiny, almost imperceptible amounts of gluten, in an attempt to desensitize the immune system. It does not cause an immune response, does not generate antibodies, and does not confer any sort of "immunity" to a pathogen. It has more in common with homeopathy* than the traditional vaccination mechanism.

*Not something I subscribe to, mind you, but they are the ones who would tell you that a homeopathic tincture of imperceptible amounts of gluten taken over a long period of time is what you would need in order to get over your gluten-related disease.

.

Trouble with that is, as far as I can see, that you could just as easily sensitize as desensitize someone to gluten.