• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My 8 year old daughter was diagnosed with Crohn's and has C. Diff

Hello,
I have an eight year old daughter who was diagnosed with Crohn's disease and tested positive for C. Diff. It started at the beginning of summer with her having diarrhea and vomiting. We treated it as stomach viruses for about 6 weeks and then our pediatrician did blood work and prescribed her Flagyl. We were then referred to a GI doctor and the gamete of tests began including an upper GI, colonoscopy and endoscopy as well as lab tests and stool tests. After the colonoscopy and endoscopy our doctor was certain it was Crohn's disease. She has inflammation in her espophogus, small instestine and large instestine. Her lab test also came back positive for C. Diff. We are 2 weeks into Prednisone and Flagyl and Purinethol as well as Prevacid, probiotics, and vitamin supplements. She immediately felt better on the meds but has still been experiencing abdominal pain and vomiting. She has an MRE this week. Although, I am not sure what they are looking for in the MRE since I thought they could see most of the GI tract with the colonosopy and endoscopy. She has been such a trooper through all of this. While I am thankful they were able to diagnose her so quickly (even though it felt like an eternity) I am told that diagnosing IBD is not a easy or quick process and some have been experiencing symptoms with out diagnosis for years. However, I am concerned on so many levels. How are we to tell what is working and not working? How long does it take for Crohn's to get under control? The side effect of the meds are hard to bare as well. How can we tell what the C. Diff is causing and what the Crohn's is causing vs side effect of meds? She is also experiencing pain in some of her joints and eyes. Our nutritionist told us about two diets that they are having a lot of sucess with Crohn's going into remission. One is Pediasure diet (nothing but pediasure) for 8-12 weeks. Has anyone tried this? and another is a no carb, no refined sugar diet. It is all protein, nuts and seeds. Has anyone tried this?

I am trying to find other patients that have C. Diff with Crohn's as I am worried about fighting both of these simultaneously since the symptoms are both so similar. Sorry so many questions but I am trying to stay upbeat and positive in very uncertain and unknown territory. My daughter is trying to go to school everyday so she doesn't get too far behind but it is challenging.
Thanks for any input! I am continuing to go thru this forum to learn about others' experiences. So glad this forum is here.
 
I wanted to welcome you to forum. I'm sorry you found a need to seek us out, but if you visit our Parents Forum(<--click here) you will find a knowledgeable, compassionate bunch that offer an abundance of support and experience.

It may take some time to decipher the symptoms with C-Diff thrown in. Also since neither the endoscopy not the colonoscopy can see the majority of the small bowel an MRE is utilized for that area.

It is very individualized as to how long it takes to find the right meds, the length of time to reach remission or the length of flares or variance of symptoms. So there isn't really a good answer for that except to say that maintenance meds like Imuran or 6MP can take up to 3 months to reach therapeutic levels and dosage may change as well.

I'm assuming the nutritionist was referring to enteral nutrition where you take in formula only for 6-8 weeks, it has been found to be as successful as pred at knocking down the inflammation. There are different types of formulas, elemental, semi elemental then those like boost and ensure which are the least broken down.

There are eye and joint issues that can arise with Crohn's Disease, extra intestinal manifestations(EIMs) some of them run concurrent with active disease of the GI tract and other independently of active flares. It is important to see an ophthalmologist with experience with Crohn's EIMs of the eyes as well as a Pediatric Rheumatologist that is familiar with joint issues involved with CD for the joints.

I'm sure many more parents and members will be a long shortly. Sending Hugs and Support your way!!
 
Welcome to the Forum and I am so sorry to hear about your daughter. Hopefully she will respond well to the treatments and get the C.diff under control. They will test her again to make sure it is gone.

You sound like a very positive lady and your daughter is blessed to have you help her through all of the ins and outs of Crohns.

Like Clash mentioned, each person/responds differently to the meds and diet. The MRE shows the part of the small intestines the colonoscopy and endoscopy doesnt.

My daughters crohns is in her colon, and she responded to Remicade after about 8 treatments. It was a long road, but she is in remission and feels as if she never had it. At this point, the only thing she cant have is popcorn. During her inflammation however, we had her on a strict diet and eliminated lactose.

sending lots of support your way and hope your daughter is put into remission quickly.
 
hi. i just wanted to say she sounds like a brave little girl. as far as diets nuts and seeds are usually a big no no. but everyone is different. they are hard to digest. nut butters and seed oils like flax seed oil can be very beneficial. im not sure about elemental diet as pediasure has a ton of refined sugar. at any rate i hope you find something that works. good luck to you both!
 
So sorry about your 8 year old. :(

My 16 year old son was diagnosed with Crohn's in March, was put on 3 days of steroids in the hospital, followed by 6 weeks of (Peptamen 1.5 vanilla) EEN (no food at all, no gum, nothing) which put him into remission and now takes Pentasa 3 xs a day, which was started when he left the hospital. He saw doc at 2 months, then 3, now it is 6...

He has had some mild symptoms and is having a hard time gaining weight, however he weighed 79 lbs in March and now weighs about 110, so he has put on some...just letting you know what worked for us.
 
Welcome, sorry you had to find us, you have already been given some great advice. My son was diagnosed at 10 and is now 14 we had an episode of C-diff over the summer, it seems that they are just more prone to it at least that is what the GI says. Yes it is hard to tell the difference. What they did for us over the summer was after the flagyl course was completed and he was still having symptoms they tested again and was found to be negative for c-diff so we then switched gears and treated for a flare.
We have done the Pediasure diet (called EEN - exclusive enteral nutrition). We used Pediasure Peptide as it is a semi-elemental formula in that the protein strands are further broken down making it easier to absorb. In fact we just did a couple of weeks of this with the last flare. I can be assured he is getting all the calories he needs and it is easier on his system than eating when he is flaring.
Hope your daughter is feeling better soon and you quickly find the right course of treatment to get her into remission
 
Hi and welcome to this wonderful site
My Lucy was diagnoised at age 3 years
So I know how hard it is to have a little one
So young sick ,
My daughter is on full EEn and doesn't eat
Food this way I know she gets the calories
She needs, I do hope your little one feels better
Soon.
 
Top