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We have had a second opinion at gosh, who put her on the pentasa and sulphasalazine. He put her back in the care of Sheffield as they are closer whilst we await the results of the genetic testing. We were originally given the crohns diagnosis, then they changed it to allergic bowel disease...

I posted for the first time last year, when in August my 4 year old daughter was given the diagnosis of Crohn's disease. Having been unwell for a couple of years it was still a shock and the doctors still said she isn't typical for various reasons (never had high calprotectin for one). Our...

The drug information sheet says... This medicine may increase your risk of developing infections. Avoid being near people who are sick or have infections while you are using this medicine. Wash your hands often. Tell your doctor if you have any kind of infection before you start using this...

Diagnosis is veoibd, gi allergy and iga deficiency.

So,lots has happened in the last three months. We have been to see a doctor at Great Ormond Street and they have started genetic testing and immunology tests. In the meantime they have put her on sulphasalazine as she is now stable after pentasa sorted her symptoms. She is on a few foods diet...

Quick update... My amazing daughter has managed to take the liquid nutrician orally. However her symptoms haven't changed and she has had bleeding again for the last two days. We are back to Sheffield on Saturday for review, still with no clear diagnosis. A second opinion is being lined up in...

Hi everyone... So we spent two days in Sheffield children's hospital, saw another gastro consultant, dietician and immunologist. General consensus is that it isn't crohns, but possibly a gut allergy or herschprungs disease. However it appears that the treatment would be the same at the moment...

Being admitted to Sheffield on Wednesday to start liquid nutrician and immunosuppressants. Feeling very apprehensive but hopeful that this will eventually help her. She was due to start school on Thursday too :(

Hi again. Consultant says the prednisolone isn't working so we are awaiting to hear from him with the next steps. My daughter is really struggling, her aches and pains are bad, today she has had a fever and I don't know at what point I should be worrying.........

We are in the uk and can take up to a week for the results. Although the tests have always been false negatives for my daughter. Have they done blood tests or any endoscopy?

Hi Positivemum, Where in the uk are you? I'm interested in a second opinion, so any suggestions would be appreciated. We are off to see an immunologist on Tuesday, so I'll be asking about immunodeficiency and genetic testing. Meeting with gp too next week to discuss her issues. She had more...

His latest letter to gp says she has sigmoproctitis, blistering large bowel disease and chronic neutrophilic inflammation, with undetectable IGA. All of which is possibly due to ibd of some sort, most likely Crohns. He says probably do another Mri enteroclysis and small bowel ultrasound to...

He was expecting to see more issues in the small blwel from the capsule, so it made him re-evaluate. She hasn't improved any unfortunately, only suffered more from the side effects of the meds x

Thanks Maya142. The biopsies he took from the colonoscopy showed abnormalities and the pictures he showed us were awful ulcers. Obviously when he initially told us it was crohns, I started doing my research and found this form so very helpful and supportive. It all made sense, with her...

Hi Sparkyh, We have been seeing a private doctor in sheffield, through my husbands private healthcare through work. When my daughter had the colonoscopy, he said "Almost certainly, without a shadow of a doubt, it's crohns". Then for two weeks later to say he was still unsure. She had a...

Hello everyone. I'm new to this and have seen such support you all provide. My youngest daughter is just four years old and has had symptoms for just over two years. She has had a barrage of tests and her symptoms are as follows... Tummy pain (most days and sometimes enough so she lays curled...