Yay!

So glad to hear it was negative.
Throws up as many questions as it answers I guess.
And I'm so sorry to hear about the extremely intrusive op. Damn, there's a man who loves his kids. And you.

Wonderful to hear the good news, Clod. I sincerely hope that all of this bring some type of positive to you and your family ... somehow.

excellent news!!

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

In theory they're only giving these "desensitization" shots to people who already have been diagnosed with celiac disease. But the idea of sensitization is real: among mothers with celiac disease, their babies are more likely to also have celiac disease the earlier they had wheat products introduced into their diet as babies. But even the diagnosis isn't everything. Among patients with chronic GI symptoms who were all definitively negative for celiac disease, the ones who kept ingesting gluten had a death rate 4 times higher than those who decided to eliminate gluten despite being negative for celiac.

Why yes, I did write a final research paper this semester on gluten intolerance, why do you ask? :) Another fun tidbit: in a study of over 1400 patients diagnosed with schizophrenia who had no gastrointestinal symptoms at all, 23% of them blood-tested positive for celiac antibodies, and their "schizophrenic" symptoms improved dramatically when they were taken off gluten.

Ooooh. Intriguing.

At 3:36 in the video:

fajitas.


:urk:

Is Mr Fob back home safe and well? How's his leg?

Oh yes, he's doing well. As it turned out, it was very fortunate that his mother insisted on traveling with him, because the doctor later said to her that Mr. Clod never would have been allowed to be discharged without a responsible adult. I maintain that they couldn't keep him there if he was determined to walk out the door, anyone can discharge themselves against doctor's orders, but better not to have to fight it. Fact was, he couldn't have actually walked out the door regardless. The pain hasn't been bad, but the leg is just weak and unable to support any weight at all. I went and bought him a pair of crutches at Goodwill yesterday morning, and he's doing fine now that he has those. He's off the percocets, and only needing occasional ibuprofen, so he's cleared to drive (the procedure was done on his left leg) and is back at work today.

Clod, I have have immense admiration for you. I don't think I would be able to handle all this stuff at all - let alone as well as you are.

I'm glad he's well, and I'm also glad the results of the test were favorable.

So many people express stuff like this, but I just don't think it's true. For one thing, most people tend to rise to the occasion, especially where their kids are involved. I do know a few parents who have just cashed out and mentally/emotionally walked away from everything, but I know a lot more who are doing no worse than we are. For another, I've also had plenty of my own moments where I'm so depressed that I'm refusing to go to bed because it means morning will come that much sooner--I just don't usually get on here and write about it.

I showed Mr. Clod some of the cheering he received, and he was grateful to know people cared. But to the idea that he was somehow extra-dedicated to the kids, he said, "But that's dumb. Every one of them would have done it for their own kids. Any dad would have." I have to say though, I don't think the kids' doctors really realized the level of the procedure they were insisting on. I told Mr. Clod that he absolutely must wear shorts on Scope Day, so they can get a look at his sutures. I doubt he'll still be on crutches by then, but maybe we'll bring them just for sympathy. :)

Dear CF, and Mr Clod as well.

I'd like to comment on your last post.

You're right when you say any parent would step up for their child. You're absolutely right. And you're also right when you say that some parents just check out. I've seen both kinds, many more of the stepper-uppers than the checker-outers though.

What I feel, similar to Spexx's remark, is this. You and Mr Clod are in the stepper-upper group, of course. But what is unsaid is that the size and number of steps in your journey are exceptionally large. Larger than most parents face. *That* extra effort is worthy of extra acknowledgment. You can bask in it or deflect it as you like. I'm just telling you what it looks like from out here.

I do have some first hand experience here. I've been praised in the way you're being praised, and it did feel a little uncomfortable for just the reasons you express. I have step children (as an aside, they are every bit as much MY children as any other, blood relations or not. Anyone suggesting otherwise will be dismissed and an ignorant idiot until my tolerance runs dry at which time the beatdown will commence) and marrying into children is itself an additional degree of parenting difficulty. Taking on such a challenge deliberately is extra noble by itself. Having children (step or otherwise) that have physical challenges (please, I don't want to argue the pc-ness of the description) is more extra work for parents. I have one son who is deaf. I have another son who has epilepsy.

These complications are different from your kids' complications--I am not comparing them. I'm just pointing out that I know what it's like to have hard work, different work than most other parents have. Your kids may never know what went into rearing them. They undoubtedly know they're loved, and that's what counts. Our mutual friend, Pete Zicato nee dar512 said it best: Welcome to the hardest work you'll ever love. It sure is, and I sure do. We can all see you do too.

Well thanks, both of you. I'm not that great at receiving praise, but I'll work on just saying thank you. :)

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.

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.

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?

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.

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.

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.

Same here.

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

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

The paperwork says terminal ileum.

That's the place, not the diagnosis.

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.

:thepain:

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

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.

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.

Can't you lie and say you have to keep them so please have them poop in potties and save it?


ok, maybe not.... :lol:

That is definitely something I would do... if I hadn't already mentioned several weeks ago that the pill cams were disposable.

I did, however, get Minifobette's back, and learned in the process that they float, so I know I haven't missed Minifob's yet. He says he didn't poop at school, and he's generally accurate about that sort of thing because he likes to tell me which bathroom he used each time at school. But I'm actually getting a little concerned because he has pooped three times now, and by definition the food all went in after the pill cam. So now I'm imagining it stuck at some swollen stricture, his generally liquid poop just flowing right around it, never pushing it out. They said not to be concerned if it takes 2-3 days to come out, so I guess it's not hugely dangerous if it gets stuck for awhile, but still.

that is so crazy small and incomprehensive...

(You keep using that word. I do not think it means what you think it means)

Wow just wow!

That's infuriating.:mad:

A sample of what a 3-year-old autistic child's mind is like:

For the last two days, my daughter was refusing to eat. She would drink her pureed veggie smoothie-esque things I make for her, but no solid food at all unless I spent half an hour forcing each bite in amidst screams.

We ran through all the possibilities: sore throat, her cavity has suddenly reached the point of being painful, some sort of new indigestion with something making her afraid to eat anything... of course she wouldn't fucking tell us a thing, just lay silently on the couch in a low-caloric daze and freaked out anytime food was suggested or offered.

So just now, I figured it out. Two days ago--the last time she willingly ate food--she had eaten out of her lunchbox at the kitchen table, because my mom was watching her for a few hours and wasn't up for preparing her food, so I packed it before I left. Apparently, Minifobette wishes to eat all of her meals out of her school lunchbox from now on. As soon as I showed her the food inside it, she bolted into the kitchen and scarfed it down. But attempting to communicate that to me was impossible, as was allowing herself to eat the exact same foods on a plate once she'd decided the lunchbox was the way she wanted it. Letting herself starve was the only option she could come up with.

Oh God, CF! How do you cope?!

Holy Carp!

Sounds like a Turbo 3 yr old. Ours recently went on a hunger strike and wouldn't say anything, finally mrs foot figured out that the pancakes weren't cut properly or something crazy like that.

It is maddening.

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.

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

It sucks that y'all have to go through all of this, but it is a relief to know I bet. And hey! Full remission has that good of a possibility?! Fucking awesome!

Hi Clod--

Our parenting experiences are different, they overlap but not everywhere. For example, I don't think I would have made the connection you did. I'm smart, you're smart, I love my kids, you love your kids, I pay attention, you pay attention.... My kid would have starved though. I try to think about what I would have done in that situation and I think I would have continued the smoothies, and then tried to force/compel/cajole/trick her to eat the regular stuff that she'd been eating only recently. And then, given up. "She must not be that hungry." True or otherwise, I don't know what I'd have done, short of force feeding her. I (I emphasize *I*) don't believe she (my imaginary daughter) could/would starve themselves. Probably wrong, certainly they can make things much worse for themselves by not eating properly or regularly. I would have concluded that whatever thought process led to such a conclusion could happen again and then food would be "OK" again. And by the same process, who knows, tomorrow something else might be just as inexplicably impossible.

But the insight you describe, I have had some lucky looking guesses in my day, informed by my accumulated parenting instincts, I read what you wrote, and I just don't see myself making the same leap. I'm so glad she's eating again, really I am.

This is where we were starting to go (before I remembered the lunchbox,) minus the cajoling and tricking. Standard therapy techniques say you just have to calmly, kindly, give them no option but to [insert whatever behavior you are requiring.] I don't believe that in the end she'd allow herself to truly starve, but I'd have had to take away the veggie smoothies before she could hit rock bottom.

My son's friend is autistic, and when he was about 6 yrs old, he injured the inside of his mouth (I forget how). He hardly opened his mouth for 3 weeks. Didn't talk, and I never saw him eat.

I tip my cap to you Clodfobble, I really do.

There's precious little in my whole life that is more important to me than my kids and my role as their father. I take it as seriously as I can. Naturally, this doesn't mean being a hard case all the time. I goof with them, and play and set adamantine limits which they cannot break (but manage to outgrow and bypass). I'm just dazzled that you pulled that rabbit out of your hat.

When they were little they were *so* cute. And I loved them and was infatuated by their cuteness. I remember being a little wistful, nostalgic as they grew out of little and cute. *sigh* But then I noticed other new aspects that I loved, principally, as they grew older, I traded saccharine cuteness for sage wisdom. I could *REASON* with them. Who of thunk it? And that has become the new awesome. This fades, by the way, as you/I become dumber and dumber as they progress through their teenage years. Have courage, it is temporary.

I'm rambling. You don't need any lecturing from me. I'm just happy and amazed at your story. I love a happy ending. :)

Yours,

From your recent post in the discussion about viewfinders.. wait.. I forget the connection. Well, it has to do with the fact that I was thinking about you and your cooking (and you too PeteZ). Today there was a very interesting program on gluten free cooking.

Here's the link.

Here's the blurb.

I'm a regular visitor to Shauna's site. She's a good egg.

EGG??!! I thought eggs were verboten!

Did you know that most people with an egg allergy are actually only allergic to chicken eggs, and can eat duck eggs or goose eggs with wild abandon?

Duck eggs have just a whiff of game-iness if you're eating them completely unaccompanied, but they are larger and firmer than chicken eggs and a delight to bake with. There was a very brief time (like, maybe 10 minutes) where I investigated the possibility of actually having ducks in our backyard... but it's far easier to just buy the eggs from a local duck egg guy.

I wonder if the chicken egg allergy is related to their feed or just decades of over exposure/consumption.

I'd guess that both are contributing factors. Most allergies are at least partially related to whatever happens to be in your system when your immune system decides to go briefly apeshit. It's why people who move, from anywhere to anywhere, usually find that their seasonal allergies are vastly improved. They're allergic to northern (or whatever) species of trees/pollen, but the people who have lived in Destination City since childhood are allergic to their own trees/pollen. But if the things that happen to be in your system also happen to have crazy-ass non-biological chemical components, like food that's been processed/pesticided/overfed with antibiotics, those food molecules are also more likely to be chosen by an immune system looking for something to attack.

A number of vaccines are cultured in chicken eggs as well - so over exposure just isn't by eating it.

Oh, and hi :)

Heya, Dagney!

The vaccines cultured in chicken egg aren't even as freaky as the ones that are grown in aborted fetal tissue. There's a rapidly growing movement of Catholics who are refusing vaccines once they find out that fun factoid.

Hi Dagney!

Long time no see. Welcome back.

I love me a bit of duck egg. And I agree about the game-iness. But I like it :)
Having visited houses where they keep ducks, I certainly agree about the mess. Ick.

Tiger's penultimate Speech Therapy assessment today.
She did not even want to see him.
This I get, because she has told me all along exactly what she is doing. Her previous assessment was all that she needed to grade him on the aspects of communication that had previously been identified. Passed on all. Of course I knew he would. 10 months maturity plus classroom assistance plus one to one.

Now we just have to focus on his autism/ asbergers, but the official diagnosis only came through two weeks ago. I'm hoping for a fairly seamless transition, but at the very least he has me.

The ST approved my most recent Social Story. She added some sentences in to expand it, but left everything else in tact, including the lower third (it was split into three sections). What she added really made sense to me, and made the story so much better. But she's a trained therapist and this is new to me, so for once I am not beating myself up.

I have another Social Story to write for next week. Then I'm done until next year. Arrgh! Clod - I might bug you between now & 21st July...

I know I can contact the Speech Therapy dept next Sept if it's a difficult transition. SD said I can. But technically, Tiger will come under a different dept - Special Teaching Needs. Meh - I know how slowly wheels turn. I'll keep my Speech Therapy contacts as long as I possibly can.

Hijack over.

Sure, whatever you need. I'm glad the first few have worked out so well!

'Duck egg' is a common phrase used here when someone's been a bit daft:

You duck egg.

A very effective summer! The Crohn's disease meds are awesome (a combination of Prednisone, Entocort, and Pentasa,) and the GI doctor is a saint. There was the potential for some negative behavioral side effects from the Prednisone ('roid rage, essentially,) but we didn't see any. Both kids did get a little bit hairier, but neither became wolfman, and it falls out once they're off it. Minifobette's stools became completely perfect and solid, and stayed that way after stopping the Prednisone, so she's done with that part, and is now just maintaining with the other two. The doctor is encouraging me to try to add some foods back into her diet, but I have to admit I'm terrified to do so. So far we have one new food, and then she got sick with some bug from school, so we went back on hold for awhile. Minifob's stools got almost perfect, but his behavior started regressing just a few days off the Prednisone, so he's back on it for another month.

Not-so-funny story: at the pharmacy one month, they accidentally rang up the real price of the Entocort prescription, then undid it and put in the insurance copay. One month's supply of Entocort for one child? $805.95. No shit. Thank fucking God we have insurance.

But check this out! Minifob drew this in Kindergarten yesterday. Before the summer, he could barely form a legible letter, and couldn't use representational shapes at all. He's not just improving, he's catching up. I've been trying really hard not to jump the gun on any declarations, but he really is about 95% of the way to "maintained recovery" (i.e. symptom-free, but only if he stays on his diet/meds.)

One down (almost,) one to go.

Wow. That's a leap and no mistake. Glad things are starting to come together for your babies.

So, so glad to see the Clod. You're the one who's a saint, you know. I'll keep my fingers crossed that this all keeps heading the same way!