Crohn's Disease Forum » Your Story » Daughter with OFG

02-27-2018, 02:36 PM   #1
Join Date: Feb 2018
Location: United Kingdom
Daughter with OFG

Hi I'm new to this forum. My 6 year old daughter has just been diagnosed with orofacial granulomatosis which I understand is quite rare for her age. We are a week into the cinammon and benzoate free diet and it seems to be helping already. She has been an absolute star, she also has a nut allergy so foods were quite limited already and she has taken it all in her stride. She hasn't once complained about not being able to eat some of her favourite foods, including chocolate and strawberries(!). I'm slowly getting used to it, but there are so many foods she just can't have, I have taken to cooking nearly everything from fresh which is time consuming but well worth the effort. I'm hoping to get advice from other parents who have experience of managing this as I feel a bit out of my depth! Any advice greatly appreciated.
02-27-2018, 05:43 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Hi. I am going to tag Maya 142, Clash, my little penguin. You also might try the section in here called Parents of Kids with ibd. Best of luck with your daughter.
02-27-2018, 07:12 PM   #3
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Hi and welcome! Check out the parent's forum. I know we have had other parents whose kids have had orofacial granulomatis, but I can't think of anyone of the top of my head right now. But I would post there - you will get more parents' responses there.
my little penguin also has a son with a nut allergy so maybe she can help you there. She will chime in soon I'm sure.
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-27-2018, 10:25 PM   #4
my little penguin
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Join Date: Apr 2012

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Polly Dd had orafacial Crohns but isnít on much

St one point Ds had to avoid a lot for his Crohns
Plus nut and fish allergy
We let the kiddo help pick what they wanted
Parents of kids with food allergies has a recipe database where you just check what your avoiding
HomeMade deserrts and froze them for later

Stock up on safe foods
We found cotton candy in a bag shelf stable
Great to take to parties when ice cream was a no go
Nutrients not so good but fun wise great

Make a list of everything she can have
Vs canít
That helps
Think outside the box
Cheerios plus safe nutfree soy butter or like plus rice and banana /honey

Chicken n dumplings is a favorite here
Homemade muffins freeze for later

Let me know if you a specific recipe
DS - -Crohn's -Stelara -mtx
02-28-2018, 02:44 PM   #5
Join Date: Feb 2018
Location: United Kingdom
Thank so for your replies, that is useful info
02-28-2018, 08:01 PM   #6
my little penguin
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