Daughter recently diagnosed with Lymphocytic Colitis

[M&Mmom]

My 7 year old daughter was diagnosed yesterday with LC. Any parents out there with info on long term prognosis for kids with LC. Since it's still pretty unusual for children to have LC, I'm having a difficult time finding information on how kids cope with this disease and how the disease affects children.

 

[happy]

So sorry to hear that your child has this diagnosis. Here is a thread that discusses Microscopic Colitis, Collagenous Colitis and Lymphocitic Colitis: http://www.crohnsforum.com/showthread.php?t=18407

The thread does not deal specifically with children however.

I will page David for you as well as he is pretty knowledgable about it.

May your daughter soon be feeling better.

 

[M&Mmom]

Thanks for the reply! It appears that David is the LC expert! Look forward to hearing what he might have to say. Our daughter had a CT scan of her small bowel yesterday. It appears they have not completely eliminated Crohn's as a diagnosis yet. Really wondering if it's possible to have both LC and CD. I'm one very anxious mommy! I may develop an ulcer myself worrying about my sweet girl.

 

[happy]

Glad to hear that they are making sure that she is diagnosed correctly. Waiting is so hard. We just want them to get better already!

 

[David]

Welcome to the community. I'm so sorry to hear about your daughter I can't imagine how hard that is.

Unfortunately, yes, it's possible to have both Crohn's and LC. Have they tested her for Celiac as well?

 

[M&Mmom]

She has been tested for Celiac and the GI Dr. said that she does not have Celiac. We just started an 8 week course of Entocort. I'm nervous about the CT scan and what it will show. My instinct all along was that she had Crohn's so when the Dr said it was LC, I was relieved for a moment thinking Crohn's was out of the running as a diagnosis. Then I was told they needed to look closer at her small bowel. Thankful for a very thorough Dr but still a worried mom!. Any suggestions on where to start with dietary changes. We don't go back tot the Dr until Aug 12th.

 

[happy]

You know, I would just let her eat whatever she wants until all of her tests are done and you see the doctor again. If she has already started a medication, you want to see what that med does before introducing another variable such as dietary modification.

If the diagnosis does include Crohn's, because of her age, you may wish to investigate Enteral Nutrition (EN) as a treatment. Here are a couple of links about EN:
http://www.crohnsforum.com/showthread.php?p=694576#post694576
http://www.crohnsforum.com/showthread.php?t=23607
https://www.youtube.com/embed/6EbHUYy5ePg

I do not know of any research supporting EN for the treatment of LC, however.

 

[M&Mmom]

Good advice. I think we will wait and see how she responds to the medicine.

 

[M&Mmom]

CT scan showed mild inflammation and thinking of the lining at the terminal ileum. Thoughts on what this means? The nurse said it is likely related to the Lymphocytic colitis, but I thought microscopic colitis is not visible via imaging. Can someone give me additional info on this??

 

[Mr chicken]

Ds had mild thickening at the ti
His was due to crohns

 

[M&Mmom]

Did your son have other tests that indicated Crohn's?

 

[DanceMom]

My daughter also had mild thickening of TI. Hers was due to an immune deficiency.

 

[M&Mmom]

How can the Dr determine the cause of TI inflammation by looking at it on a CT scan?

 

[DanceMom]

Our GI initially diagnosed Crohn's. It seems to be the most common cause of GI inflammation. It was only after the standard Crohn's medications weren't working that we explored other possibilities.

 

[Mr chicken]

Ds had granulomas found in his ti , caecum and a few other places on his scope biopsies

 

[M&Mmom]

So is this a normal or common occurrence for Lymphocytic colitis?

 

[David]

I've never heard of lymphocytic colitis causing thickening of the bowel. Collagenous colitis (another form of microscopic colitis) can cause thickening of the collagen band, but my understanding is that is not visible via imaging, only biopsy.

How can the Dr determine the cause of TI inflammation by looking at it on a CT scan?

They can't.