7 year old daughter oral crohns

[KarenBrydges]

Hi everyone! So my daughter who is 7 was just diagnosed, with oral crohns. Since February, shes been having where her tongue gets these spots and the break up burn and almost peel, just on her tongue no where else. shes been hospitalized so far 2 times for this. they have done blood work cant find anything wrong even though her lymph nodes are swollen. We did have a tongue biopsy done last time along with upper and lower endoscopy. they did find the marking of crohns in the upper part of her stomach, but both biopsy from tongue and stomach have come back inconclusive. we have her on remicade and a immune suppressant. She is now currently having a break out. Looking into getting a second opinion, so frustrated because nobody can figure it out. she has no fever and its just on the tongue that she has issues. Ive read things on diet and the dos and donts, but some dont match up... we where told we dont need to play with her diet because the flair up will be in her mouth and not in her stomach. I am at a loss, it seems like every 6-8 weeks we are right back where we started.

 

[afidz]

Sorry to hear that she is going through this. I don't know anyone that has Crohn's in their mouth, so I don't have very much advice to give. I would think that changing her diet in some way would help, at the very least it wouldn't hurt to try. But I don't really know what you would change it to. Definitely stay away from anything with acid in it. Is she able to eat when she goes through these flairs?

 

[KarenBrydges]

No she usually ends up in the hospital because she cant eat or drink, even water burns.its hard to play with her diet because the flair up is in her mouth.

 

[Mr chicken]

Have they looked at bechets ???
It mimics crohns especially in the mouth and can get very severe .

Hugs

 

[crohnsinct]

What Remicade schedule she on? When did she start Remicade and the immunosuppressant. Which immunosuppressant is she on?

You say the flares happen every 6 to 8 weeks so I I was be questioning if maybe the Remicade is wearing off around the 6 week mark?? Remicade is metabolized by the body and some people metabolize it faster than others. You can see if this is the case by pulling a Remicade levels test just prior to her infusion. This will tell you if she has any Remicade left in her body. If it is a matter of the Remicade wearing off, that is an easy fix by either increasing her dose or tightening the schedule.

Throughout the course of the disease many people change t shorter schedules and then when the disease is well controlled are able to extend out to the full 8 weeks.

 

[Sascot]

Not something we have dealt with. Hope you can get answers. Does she get the NG tube when she flares - getting fed without having to hurt her mouth

 

[KarenBrydges]

yes they have look at bechets and have ruled that out. we did blood work on thursday but will take a week to get the results back, but we are checking the level of remicade in her system, and we will go from there as to if we need to do it more 6 weeks verse 8 or if we need to bump her up on dosage.. just feel like we keep hitting a brink wall.

 

[KarenBrydges]

no ng tube. they just hook her up to an iv and pain meds.. then we slow make her eat and drink.

 

[malorymug]

Some folks here have talked about magic mouthwas,. Wonder if that would help by coating her mouth. I second an ng tube at night for some nutrition.

 

[Mr chicken]

Does she add weight with oral supplements when not flaring
Ng tube is not as bad as it sounds and would mimimize hospital stays since she would be hydrated and getting nutrition
DS drinks peptamen jr with prebio as a supplement and is on the partial enteral nutrition with the crohns exclusive diet
Works well to induce remission

 

[james's mum]

Hi Karen,
Just reading your post and not sure if the same thing but our son now 14 and diagnosed with crohns when he was 11. He has crohns in the upper, lower, perianal and orofacial (in the face). Doctors tried to tell us first of all that there was no such thing. His face swells, his lips swell and gets ulcers all through his mouth and throat. He first of all did the liquid diet for a total of about 16 weeks(if I remember correctly) and they did clear up but as soon as he started to eat food they would come straight back. (doctors say diet has nothing to do with it) and we did try different things but it did not make a difference. He then went on to Imuran, but after a period this was not controlling the crohns in any of the areas so they added inflixmab. This has work well for him overall and he was having the infusions every eight weeks. But always around the 6 week mark the ulcers and slight face swelling (not nearly as bad as in the beginning) come back. They say his markers are a bit off and so now talking about starting him on Humira.
Hope some of this information is helpful and I have also included a link to a site that has some info on the orofacial crohns.

http://dermnetnz.org/site-age-specific/orofacial-crohn.html

good luck
james's mum