PEDIATRIC COLLAGENOUS COLITIS

JLH · Post by **JLH** » Sat Oct 24, 2009 7:39 am

I can't stop thinking about this woman and her child.........

mbeezie · Post by **mbeezie** » Sat Oct 24, 2009 8:02 am

Yes, I've thought about her too. She's in such a difficult position. She wants to trust her doctors because they are "educated". I can see where she would have lots of fear going against doctor's advice with a 2 year old. I just worry that this kid will continue to slip.

Getting my 9 year old off of gluten and dairy was the best move we ever made. As far as I know he doesn't have MC but he may have CD (he has DQ2 and had some symptoms, but we went straight to diet without tests) I KNEW there was something wrong with him as an infant, but the doctor's blamed me for being a nervous mother and causing colic. Doctors and dietitians are clearly outdated on how diet affects our bodies.

Mary Beth

Post by **tex** » Sat Oct 24, 2009 11:04 am

Isn't it interesting the way that so many doctors have a habit of blaming the patient, (or the patient's mother, in pediatric cases), when they become frustrated, because they can't figure out the problem.

It's a shame that witchcraft has fallen out of vogue, or they could blame that, when their treatments don't work.

Tex

Camryn'sMommy · Post by **Camryn'sMommy** » Sun Oct 25, 2009 1:10 pm

Tex,

How do I get her email address? I'd like to contact her and tell her Camryn's story.

Thanks,
Laura

Camryn'sMommy · Post by **Camryn'sMommy** » Sun Oct 25, 2009 1:18 pm

Nevermind, I figured it out. I emailed her :)

Post by **tex** » Sun Oct 25, 2009 2:47 pm

Hi Laura,

That's very kind of you to do that, and we all appreciate your help. I gave some thought to doing that myself, early on, but my comments wouldn't mean much to her - yours surely should carry a lot of weight.

I didn't verify her e-mail address, (and the system doesn't verify it either, since I have it set for automatic self-activation), but if you don't get a response, (some people register with a "throw-away" e-mail address, thinking that they're somehow cheating the system, by doing that, but they're actually cheating themselves), perhaps Harma can PM you a valid e-mail address for her, (since she knows her from another site).

Many thanks,
Tex

JLH · Post by **JLH** » Sun Oct 25, 2009 4:32 pm

Thank you very much, Laura. I'm glad I emailed you even though she paid no attention to your very important post that I reposted. Even my doctor did. I doubt that she even bothered to read Mary Beth's post or the important pages that Tex suggested.

I hope all of you are doing well.

kimpatt · Post by **kimpatt** » Sun Oct 25, 2009 8:50 pm

Laura--

Can I ask you a question, then, about pediatric MC? What were Camryn's symptoms, and when was she diagnosed. My three-year old is having some issues, and I have sinking feeling that he's dealing with MC. Just wondering what it looked like for another child...

Post by **tex** » Sun Oct 25, 2009 9:35 pm

Kimberley,

Here's Laura's original post, that you might find helpful, for starters:

http://www.perskyfarms.com/phpBB2/viewt ... ght=#51409

Tex

kimpatt · Post by **kimpatt** » Mon Oct 26, 2009 2:18 pm

Thanks, Tex. That link is a helpful window to see what MC may look like in a young child. As usual with me (and my family), my son doesn't quite fit that description (like me, he has more C than D). I'm forever hoping I'll just 'fit in' with one family or the other (EE/EG or MC), but it seems my body (& perhaps, my son's) prefers to be non-commital

I've compiled this list for my son's symptoms, in hopes of gaining some clarity. Some sx. seem more like MC to me; some more like EE/EG. Some (many, probably) could be both.

BOTH of us seem to be doing better after cutting out oats (I noticed this in Laura's post about Camryn, too) and legumes (we'd been eating at least a serving of peanut butter, lentils or other beans daily).

**EE/EG - seeming symptoms**

*Moderately thick nasal discharge (indicative of allergy, perhaps)
*Dark circles under eyes (allergy symptom)
*Dry cough w/ occasional c/o sore throat (EE sx.) -- often tries to 'clear throat' (I'm this way with EE irritation)
*Red anus (food allergy); started out in early Sept. with lots of itching at rear (treated for pinworms but didn't help)---now he says his bottom hurts with BM; skin seems thin & is sometimes a small area is raw
*Decreased appetite (reminds me of 'early satiety' I have with EE/GERD; could be anything, though)
*Mood change (seems more sullen, sad, moody, more behavior issues--this is MY biggest warning that something's going on with ME)
*Hiccups (sometimes seen in GERD-like situations)

**MC-seeming symptoms**

*Bout of 'bowel-issues' lasting nearly 2 months now. Began with C; now fear of BMs; some D.
*Red anus (food intolerance); started out in early Sept. with lots of itching at rear (treated for pinworms but didn't help)--now he says his bottom hurts with BM; skin seems thin & is sometimes a small area is raw
*More smelly gas than usual
*Saw mucous in his stool once; could have been more. I've not been with him during past couple of BMs.
*Mood change (seems more sullen, sad, moody, more behavior issues--this is MY biggest warning that something's going on with ME)

BTW, Tex, I saw you mention EE as a pre-cancerous condition in your post to Laura. I didn't realize this; what information do you have on this. A bit more worried now...

Our MD ran a thyroid test on him today (and vitamin D3 b/c I asked). Suppose we'll see a GI (prob an allergist, too) if this persists in him. I'll probably do Enterolab panel on him before doing anything invasive. Thanks (as always) for your support.

Post by **tex** » Tue Oct 27, 2009 12:35 am

Kimberley wrote:BTW, Tex, I saw you mention EE as a pre-cancerous condition in your post to Laura. I didn't realize this; what information do you have on this. A bit more worried now...

Hmmmmm. Beats the heck out of me.

As far as I'm aware, EE has never been linked with any form of cancer. Maybe I had a major brain fart that day, and for some reason or other, confused EE with Barrett's.

Sorry about that, and thanks for pointing it out - I'd better correct that, before I scare someone else.

Foul smelling BMs, as you point out, are an indication of gluten sensitivity, or some other food intolerance that can cause malabsorption. Mucus is an indication of intestinal inflammatioin.

The sore butt syndrome, so common with MC, can be treated with one of the OTC zinc oxide compounds. Several are listed in some of the posts in this thread:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10052

Tex

kimpatt · Post by **kimpatt** » Tue Oct 27, 2009 9:01 pm

Good! I feel better already

I think you said wrote that it was "thought to be pre-cancerous". No worries.

I certainly do see some MC possibility in Jackson. I'd been using his brother's Calendula diaper cream on his bottom when needed. Eggs are the last thing (of the major 8) we've not removed that was on my list of 'suspects'. Will see how this week goes first. Also, I'd planned to do the Enterolab panel on him in the next year, but if the problems worsen again, or we find ourselves in crisis, I'll do it as soon as we can...

Thanks for the info, Tex.