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Hi, new here.

Hi, my name is Heather, and my son Sam who just turned six, has recently been diagnosed with Crohn's. There is also concern about his liver, and we meet with the Liver specialist in a couple of weeks. I am doing my best to remain sane, but am having trouble with that. He began having blood pass right before Thanksgiving. He hasn't gained weight in awhile, skinny little man. And I'm slightly terrified of whatever the Liver guy might have to say about his elevated liver enzymes. They have been slowly decreasing over the last month, but are still outside the normal range.
We are thinking about changing the whole family's dietary habits. My husband's family has a history of Crohn's and UC and some have had luck with diet changes.
I didn't know anything about IBD until a few weeks ago, so I'm sort of reeling from what I've learned and what I have left to figure out.
I guess I'm just looking to connect with people who will understand.
Thank you!
 
Welcome Heather,
Sorry you have had to join our club please have a look around the parents of kids with ibd section, we have quite a few mama's with young ones. http://www.crohnsforum.com/forumdisplay.php?f=49

My son was dx'd at 10 yrs old and is now 14. What treatment do they have him on or are they waiting for results from liver?

It is a lot to take in, try to take it one day at a time and if that is too much even 1 hour at a time. We have all been there and had to hold it together all day and be strong for our little ones only to break down sobbing in the shower or bed at night.

This is a fantastic group of people who are here to offer support (from someone who gets it), a virtual hug or shoulder to cry on, a good laugh when it get to be too much and more research then you can shake a stick out.

I'm going to tag brianslovie, I believe she has a young son recently diagnosed and my little penguin her son was also diagnosed around the same age.

Good Luck and keep us posted.
 
Thanks. They started him on Colozal (sp?), but it seemed to aggravate his symptoms, and that has been discontinued. He is taking an acid reducer, and iron supplements as he is anemic. I have been scrolling through previous posts.
I'm not going to lie, it is very overwhelming how much information there is. I felt like I was doing ok with it all, until they discovered the liver issues, and that has just thrown me.
For the time being, the bleeding appears to have slowed somewhat on his own, but is still present.
He does not like the boost, but he's got to get some calories in somehow.

I had no idea how cruel a mother's imagination could be to herself until all this started happening. I'm beginning to understand every superstitious throw of salt over her shoulder my grandmother performed.
 
Oh I hear you... before diagnosis my mind leaped to all kinds of things. Are you doing kid's Boost? Jack found them and kids pediasure more palatable. He couldn't stand Ensure or Boost and a lot of times they made his tummy hurt where the kids one did not. He currently does Pediasure Peptide as it is further broken down and easier to absorb.

There is a lot of information on here and one of the things to remember is quite a few people only post when things are not well and when things are, they are busy enjoying life and not spending every moment researching.
Make sure you look through success stories as well http://www.crohnsforum.com/showthread.php?t=27079

One bit of advice I will give you especially since it can all be so overwhelming at first is get copies of everything. I keep a binder that has all his test results in it, lists of medications, dosage - why we stopped - what his reactions were. The GI's see so many kids and I love my son's GI but he doesn't always remember what we did and why are even sometimes trends or what is elevated for my son. Whereas something that he would most likely not bat an eyelash at over another kid is a red flag when it comes to my son and I can remind him of that.

I hope the liver issues turn out to be a fluke and will go away once the disease is under control.
 
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