Hello, My name is Amy, My 4-year-old daughter was diagnosed about a month ago with Lymphocytic Colitis. She has had chronic diarrhea her whole life and we finally were able to get an Endoscopy and Colonoscopy. The doctors told us that she has evidence of possibly developing either Crohns or Ulcerative Colitis. They can't tell which yet. But they did find Lymphocytic Colitis on her biopsies. My question is:
Is there anyone else out there who have children with this disease? Her doctors are just guessing as to how to treat her. She has been gluten free since diagnosis. In addition to that, I have removed raw fruit and veggies from her diet. She is taking Colozal 750mg a day. (Yes my 4 years old can swallow that huge pill. So proud of her. we started by taking it apart and mixing with applesauce, but she can swallow it now.)
Before diagnosis she couldn't tolerate:
Milk,
Soy
Tomatoes
Citrus
Bananas
Avocado.
In addition to the Microscopic Colitis, she has severe reflux.
I would love to talk to any parent who is also walking this journey with their kids.
Thanks so much
Amy
Kids with Microscopic Colitis specificially Lymphocytic Coli
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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AmyTalbott
- Posts: 1
- Joined: Thu Feb 15, 2018 12:56 pm
Hello Amy,
Welcome to the group. I'm sorry to hear that your daughter is having to deal with this disease. It's good that you are being proactive about it because as you say, the medical community has a difficult time dealing with LC, especially in such young cases.
Here's a link to a thread from 10 years ago that describes a similar case. Though this was posted years ago, I'm sure Camryn's mother would be happy to discuss with you how she handled her daughter's treatment. Camryn was 2 years old when diagnosed. She is presumably 12 years old now, and doing fine, as far as I am aware. You can send her mother an email by clicking on the "email" button at the bottom of her post
My 2 Year Old was just diagnosed with LC :(
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. I'm sorry to hear that your daughter is having to deal with this disease. It's good that you are being proactive about it because as you say, the medical community has a difficult time dealing with LC, especially in such young cases.
Here's a link to a thread from 10 years ago that describes a similar case. Though this was posted years ago, I'm sure Camryn's mother would be happy to discuss with you how she handled her daughter's treatment. Camryn was 2 years old when diagnosed. She is presumably 12 years old now, and doing fine, as far as I am aware. You can send her mother an email by clicking on the "email" button at the bottom of her post
My 2 Year Old was just diagnosed with LC :(
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Amy,
I'm not a mother, but I have lymphocytic colitis and have had symptoms since I was born. (wasn't officially diagnosed with colonoscopy/biopsies until I was 16)
While I've always been "negative" for Crohn's and ulcerative colitis and won't be able to help you with advice as far as treatment and whatnot, I can say that from the perspective of experiencing this disease as a child, one of the best things you could do as a mom is to be positive and make sure your kid is open to talking to you about what's going on with her body. The more you can make her feel normal and not weird, the easier it will be for her growing up. My sister made fun of me for having weird poop a lot, so I was super ashamed of my issues and life at school was a daily struggle for me for a long time. I avoided talking to my mom when my symptoms got worse until I was around 11 years old, and that's when we finally decided it was time to see a GI specialist. I noticed things got 10x worse after I started my period, and particularly while I was menstruating. Now I talk to my mom freely about my symptoms and she's a great person to talk to. It sounds like you're already doing a great job! Building confidence is key to reducing stress which always helps at least a little with managing symptoms.
Sarah
I'm not a mother, but I have lymphocytic colitis and have had symptoms since I was born. (wasn't officially diagnosed with colonoscopy/biopsies until I was 16)
While I've always been "negative" for Crohn's and ulcerative colitis and won't be able to help you with advice as far as treatment and whatnot, I can say that from the perspective of experiencing this disease as a child, one of the best things you could do as a mom is to be positive and make sure your kid is open to talking to you about what's going on with her body. The more you can make her feel normal and not weird, the easier it will be for her growing up. My sister made fun of me for having weird poop a lot, so I was super ashamed of my issues and life at school was a daily struggle for me for a long time. I avoided talking to my mom when my symptoms got worse until I was around 11 years old, and that's when we finally decided it was time to see a GI specialist. I noticed things got 10x worse after I started my period, and particularly while I was menstruating. Now I talk to my mom freely about my symptoms and she's a great person to talk to. It sounds like you're already doing a great job! Building confidence is key to reducing stress which always helps at least a little with managing symptoms.
Sarah