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Crohn's Disease
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Posted 9/9/2010 12:47 AM (GMT 0)
Hi.  My seven year old son was diagnosed with Crohn's a few weeks ago.  He had stomachaches and fevers all summer and after two weeks of extensive scans, scopes and x-rays, they figured out it was crohn's.  We, of course, were in a tailspin for a while.  Now, we are giving him daily meds and he's been doing well.  He is currently on prednisone, but tapering his way off of it weekly.  He should be done with it by the end of September.  His long term medication will be 6mp which he has already started.  He seems to be doing ok with it, it's been about a week.  He has a check up at the end of the month.  I have been considering doing a gluten free diet with him to avoid flare ups.  Has anyone tried this or have any advice?  We're still very new at all this, still a little scared.  I would love to hear stories and advice to ease my nerves a bite.  Thanks!!
Posted 9/9/2010 1:01 AM (GMT 0)
I am sorry to hear your young son has crohns and hope he goes well on 6mp.

The good news is they have found out it is crohns and hopefully by getting him on 6mp it will prevent damage and get him into a good remission :)

While we are all very different I find I feel a lot better when I stick to gluten free and it certainly does no harm (kids tell me I am less tired/grumpy off wheat!!!). I also find dairy can play me up sometimes too. Trial and error I am afraid - when well I can eat better than when having a bad patch.

I use gluten free flour in my 'old' treat type recipes with some success and most of the time my family don't know they are eating GF baking. In fact they prefer my GF chocolate cake and apple shortcake to the originals.

I wish we had a magic diet we could share but I am sure you will find a balance as you go and will work out what does and doesn't suit him.

Good Luck with the check up
Lesley :)
Posted 9/9/2010 1:30 AM (GMT 0)
Thanks, I'm slowly adding gluten free foods to his diet. I feel like the prednisone is protecting him right now from flare ups (even though I want him off the blasted stuff) so I'm trying to test out gluten free stuff on him now so I'll have some constants when he is off the prednisone in a few weeks. Thanks for your help!!!
Posted 9/9/2010 1:54 AM (GMT 0)
You'll definitely learn by trial and error. Since each of us is so different, diet is individual. You'll also be able to see what bothers him and what doesn't once he's off pred. It can mask a lot of symptoms, so it's would probably be hard while he's on that to know if it's food or medicine making him ok.

I understand that the diagnosis is a bit of a shock, and it is scary at first, but it is good that they were able to diagnose him so fast and get him on meds right away. Hopefully knowing what's wrong will help him feel much better.

Good luck, and glad you found this forum (though it's unfortunate to hear of someone so young with crohn's). There are other mom'son here with younger kids with CD, I'm sure you'll find lots of good info here!
Posted 9/9/2010 2:02 AM (GMT 0)
Yes, I read this is usually diagnosed between 15 and 30, seven seems a bit premature but the doctor was quite certain. He is feeling so much better, full of life again and loving school (let's hope that lasts). We'll continue to watch his diet, give him his meds and work with his doctor to keep this under control.
Posted 9/9/2010 2:04 AM (GMT 0)
I'm so sorry to hear about you son.

I suggest you get him on a strong probiotic for kids (if you haven't already). Udo's makes a good one.
Probiotics can really help with crohn's. Alot of us crohnies here are on them.

I tend to stick to a gluten free diet, but if I have wheat bread it is almost always sourdough because it helps break down the gluten.
I eat gluten free pasta, waffles, etc. They're delicious.
Also, I know this will be hard, but your son will do better if you cut out sugar and processed food (especially junk). If you make him homemade treats with unpasturized honey, it will be a lot easier to digest for his tummy.
You can buy a lot of naturally sweetened treats in the health stores too.
I also suggest you take him off dairy for a while. Give him a calcium supplement for kids though.

In a nut shell, when your son is flaring he'll be better off with a natural healthy easy to digest diet (soft or pureed veggies and fruits). Add a multiple probiotic blend, maybe some digestive enzymes, along with the doc's treatment.

If you feel desperate, alot of CDers and (moms of CDers) try the Maker's Diet or Specific Carbohydrate Diet with success.

I hope your little boy will get better fast.
Posted 9/9/2010 3:22 PM (GMT 0)
Also regarding diets such as Maker's Diet and SCD diet, some Mom's of the younger kids like yours have a hard time getting their little ones to follow these diets as they are a bit restrictive. They do work for some though, let me clarify that. If you decide on one of these diets, you might be best to have the whole family follow it. Otherwise you be cooking meals special for him, and then something else for everyone else.

I personally follow a low residue diet all the time, as I find that works best for me. Just think of easy to chew, easy to digest. You can google it and see some of the GI sites that have diet information. Good luck on whatever you decide. Hugs!
Posted 9/10/2010 1:29 AM (GMT 0)
Easy to chew, easy to digest. I like that. ;-)
Posted 9/10/2010 2:08 AM (GMT 0)
I'm on my way to Trader Joe's tomorrow to find some gluten free snacks for him. There's only one thing he hasn't liked so far. We'll see how things go. I agree with you Nanners, if my older son will eat the food, he can have it as well. Wish me luck new friends!!!
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