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Thank you for all the new ideas. Twiggy, we are looking into Foodmaps for once we start re-introducing foods. I am glad to hear it helped your child. I had never heard this, so thank you. Ds' blood work has been very haphazard, so I'll have to look and see. I think this is really great...

We had a colonoscopy in Nov which showed nothing. All the inflammation is in the jejunum according to the CT scan.

We're on week 7 of EEN and Ds is still having symptoms (abdo pain, bloating, and some joint pain). GI mentioned that it could be a problem like SIBO. Has anyone experienced something like this with SIBO present during EEN? Did antibiotics take care of the symptoms? We'd be using Flagyl I...

That is a very difficult position to be in and I still say go for it. I was in that place when I was told by the only ped GI in my insurance group that Ds would "grow out of it" and that I could come back if he still had pain after 6 months. The irony of the fact that my son hadn't grown in...

This is great advice. Please, do not hesitate to call the OCR. I think people sometimes find the name a bit intimidating, but they reall are there to help keep things running smoothly. This is not a real decision for your principal to make. There is wide spread consensus that CD qualifies for...

I'm so glad they were able to get you in with motility. It is so devastating to have your hopes raised by the prospect of new information/a diagnosis and then to feel like you hit a brick wall instead. Been there and I cried a river, too. I would ask Dh to push them to answer the question, "If...

Both the major children's hospitals in my state are ranked higher than Mayo and without a doubt, they cannot even remotely match the quality and expertise available at Mayo. Here there is a more limited range of procedures and tests available, they see fewer cases per year, heck, they have a...

We see an Endo because we had a year of zero growth. I'll share our experience although we are still not yet fully diagnosed Crohn's. The first appointment they took a very detailed (90+ minutes) medical history and did their own measurements (weight, siting and standing height). We arranged to...

I'm sorry that she isn't getting better. It is so hard to watch our kids suffer. We spent a few years trying to get somewhere with all the local Drs. and made more progress in a week at Mayo than in all that time. I only wish we had gone sooner! We didn't leave with a diagnosis, but that is...

I just asked our GI this question on Tuesday because I saw a few in Ds' mouth. They said common with Crohn's and Celiac.

Thanks for the information. I am still learning. You can have FPI without it being FPIES. Its a little bit like EGID without the eosinophilles being present, at least in terms of symptoms/presentation....or so I have been told. Its a diagnosis of exclusion.

That's great news but also tough. I'm not sure I'm the best source since we also don't have a confirmed diagnosis but here goes. We have abnormal calprotectin but normal blood work (CRP, ESR, and most everything else). It was the abnormal fecal cal. that pointed to IBD. Given what you describe...

There is definite inflammation, technically they're calling it thickening of the jejunum visible from the CT scan. We just haven't been able to see it any better with a scope or biopsy yet. This would be the cause of the high Fecal Cal. Yeah, the food protein intolerance really threw me for a...

Okay, I'm going to try and answer everyone's questions. The path to a diagnosis really is twisted for so many of us/our kids. My son has patches of hyperpigmentation that look like the picture in the link, also usually on face and neck, although his are less pronounced. My Mom is always...

Thank you, everyone! I met with the GI and have been digesting the news ever since. The biopsies came back clean and the blood tests (CRP, ESR, Celiac's) were all normal. So, without signs of autoimmune, we have a tentative diagnosis of food protein intolerance. Small bowel crohn's is the...

This is interesting. We have not (yet) been led to try-on an IBS diagnosis, but we are using Periactin for headaches and it worked. However, it did not touch the stomach/chest/lower abdom. pains. Omperazole did help with chest pain and improved eating/willingness to eat significantly for us...

Hi I'm so sorry to hear she is hurting so badly. My son has many of those same symptoms and I know he has just given up on telling us it hurts sometimes because he knows we can't do anything about it, anything to help him, and that is a terrible feeling as a parent. We're new here on the...

Thank you everyone! Dh called me to report that Ds did great. He was very cooperative and handled the sedation and procedure very well. Dh spoke at length to the Dr after the procedure and the good news is that things looked pretty good inside. I think Dh said they were able to see all the...

Thank you, everyone, for the replies and well wishes. Farmwife-- Ds has had some issues since birth which could be Crohns related. I hadn't really connected it that far back. For awhile Drs were pushing an EE/EoE angle but scopes never found eosinophiles. Mehita-- I could probably be on...

Hi- I am so glad I found this forum. I've been reading through so many of your stories over the past few days and I appreciate the wealth of information here. Technically my son is still undiagnosed but that has been the case for for the last 2 years he has been sick with this phantom illness...