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classicman 05-11-2011 12:51 PM

Spex & V,
Excellent posts - I am still somewhat new at this, but I have seen most people step up as Clod said. I have also seen a few just crumble under the weight of their new reality. I waver sometimes when I think too far in advance. Keeping focused in the "here and now" is the only way for me.
I reach out to others who have already traveled this path and find that they can be the best guides. I also think of the Clod's often.

Clodfobble 05-17-2011 11:00 PM

1 Attachment(s)
Warning: graphic medical photos to follow. I realize it's not something everyone wants to see, but I find stuff like this compelling rather than revolting, so proceed at your lunch's own risk.

Scope Day went extremely well. Both kids went into their procedures without protest (they were honestly too lethargic and lacking in calories to have done much about it) and woke up from the anesthesia calmly. Minifobette was knocked on her ass by the whole thing, and slept on the living room floor for the majority of the day after I brought her home. But Minifob recovered within an hour of waking, and had a great time playing minigolf and videogames with Mr. Clod until his sister's box accumulated its 8 hours' worth of photos and shut off, enabling him to come home. Both kids ate a small amount of dinner (and kept it down--they'd both had some problems with vomiting earlier in the day,) and I drove back to the doctor's office to return the receiver boxes after putting them to bed. Neither one has passed their pill cam yet though, which is disappointing because this probably means they'll drop them at school/therapy tomorrow, and maybe this is weird but I kind of want to save them as a souvenir. Cleaned, of course.

Anyway, initial results from the visual scopes were reported to us, though biopsies and pill cam data won't be compiled and reviewed for another couple of weeks. Surprisingly, Minifobette showed no damage to her colon, but the doctor told us that's often the case with the very youngest children who are already being treated with diet; the disease's progression is held at least somewhat in check. The small intestine is where the problem always originates, which is why the pill cam procedure is so important. She's still got some 20 feet of digestive tract to be examined, compared to the roughly 4 feet that can be seen with a traditional scope.

But the boy, he has a good amount of colon damage, in addition to what we're waiting to find in the small intestine. It's not 100% awful from stem to stern, but there's a large section that truly ain't pretty. They gave us printouts of all the captured images before we left the surgery center. See below.

footfootfoot 05-17-2011 11:31 PM

Wow. That's vindication for you. I'm guessing it must be (yet again) a hard thing for you. My thoughts are with you all. What kind of healing/recovery can be expected?

Clodfobble 05-17-2011 11:41 PM

It did stab me in the chest a little to see just how bad it is, though I'm told it could be much worse. But with the right combination of steroids and anti-inflammatories, along with his continued restricted diet and supplements, I'm told that it's expected to go into full remission. The main hurdle was finding a doctor who wouldn't just pretend it didn't exist, so it that regard we're on the far side of the mountain and it only gets better from here.

footfootfoot 05-17-2011 11:46 PM

That is great news, you can focus your energies on healing, not squandering them on battling with docs.

limey 05-18-2011 07:18 AM


Originally Posted by Clodfobble (Post 734626)
... it only gets better from here.


Originally Posted by footfootfoot (Post 734627)
That is great news, you can focus your energies on healing, not squandering them on battling with docs.

Amen to all this. Hugs to you Clod, and your family.

glatt 05-18-2011 08:15 AM

Sorry that you were right about the boy. But glad too, that it's been so clearly identified.

I can't speak for anyone else, but I love pictures like this. If you get any shots from the pill cam, I'd be interested to see those too.

Spexxvet 05-18-2011 10:34 AM


Originally Posted by glatt (Post 734666)
I can't speak for anyone else, but I love pictures like this. If you get any shots from the pill cam, I'd be interested to see those too.

Same here.

Wow, Clod! The bad part looks as if it's blistered. I wonder if the reaction is similar to poison ivy.

Pete Zicato 05-18-2011 11:54 AM

I can't tell you how sad I am to see that picture, Clod. What part of the intestine was that?

Clodfobble 05-18-2011 12:46 PM

The paperwork says terminal ileum.

footfootfoot 05-18-2011 02:19 PM

That's the place, not the diagnosis.

Pete Zicato 05-18-2011 02:25 PM

The terminal ileum is the last part of the small intestine where it meets with the large intestine. I'm sure there are other things this might be (Celiac inflammation?), but that is a common place for Crohn's disease to hang out.

skysidhe 05-18-2011 02:31 PM


NOW at least you can proceed with assurance and with a course of action.

Clodfobble 05-18-2011 02:33 PM

According to the small number of doctors who are intensely studying this stuff, autistic enterocolitis is its own diagnosis. Our doctor said that the most closely-related disease is, in fact, Crohn's disease, but that there are some key differences that make autistic enterocolitis unique (and all autistic patients with bowel disease display some level of these unique traits, though they may also have comorbid diagnoses on top of that, celiac disease being most common.)

Part of the procedure was we donated blood samples and part of our biopsy tissues to the biggest autistic enterocolitis research group at Wake Forest University.

lookout123 05-18-2011 02:59 PM

It feels wrong to say congratulations or be excited you received a diagnosis, but in this case I think it is a positive. Proof. Vindication. Now you can really truly move forward and any doctor who pushes back can just shove off.

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