My daughter aged 2 1/2 just received a diagnosis of UC and I am not really convinced that this was right.
We first noticed blood in her stool almost a year ago, we did not seek medical attention right away as we did not notice it again for some time. A few months later we noticed it again and went to our family Dr who referred us to a GI specialist. The blood started to get worst in the past 6 months, and was occuring daily. My daughter has always had loose stool so we never really thought much of it, she would go to the bathroom 3 times a day never with any sense of urgency. We had no problem toilet training her and she has taken to it without any problems, she has never had any pain, cramping or other symptoms that I have read are typical with UC. The Dr performed a colonoscopy and the results showed mild inflammation in her colon no signs of any inflamation in her rectum. We had a Meckyls scan and that came back clear, we had a Barium xray and again everything was good. Her blood tests show low hemaglobin and markers for inflamation. We have been by the Dr that it does not look like a Milk Protien Allergy.
So my wife an I decided to go down the Milk free path and put her on Soy anyway just as a test because I had felt that something else was going on. Within a week of going milk free, which was really hard because as a picky eater she loved her yogurt, cheese and milk, she was suddenly having formed stool and the blood has gone down to trace visible amounts ( really if I was not looking I don't think I would be able to see it ). The other amazing thing was that she went from 3 stools a day to 1. The last visit we had with our GI Dr we went armed with pictures of before and after removal of milk, the Dr basically did not look at them and said oh yes there is still blood, not sure if she had super amazing eye sight but on the 2.5" LCD display of our camera there is no way that you could have seen the trace amounts without zooming in.
My issue I feel the Dr has made a decision that puts my child on drugs for the rest of her life without really being sure this is what is truly the cause. There seems to be nothing that the Dr has tested that proves beyond a shadow of a doubt that she has UC.
Has anyone ever had a UC diagnosis that was incorrect? I also read that you could have a Milk Intolerance that would basically present the same as a Milk Allergy just without the typical markers of the allergy, has anyone ever had been told they have a Milk Intolerance?
Just a quick additional point we started her on 5ASA Pentasa on Friday, we then noticed a slight rash, on Sat when we went to give her the next dose she had a bad rash across her shoulders. We took her to a Pharmacy where they were surprised at a diagnosis of UC at such a young age, they figured the rash was not related to the 5ASA. We talked to GI nurse and she said the Dr also did not feel the 5ASA caused the rash, although no one really told us what it could have been. We have not bothered to put her back on the 5ASA until they can explain what happened as the only thing that changed was the introduction of the drug. Today Mon she had a stool that was formed at first followed by lighter coloured loose stool with more visible blood. The other thing is that we slipped up yesterday and she had a small cooking that had a thin choclate coating which did contain milk, not sure though if such a small amount of milk could have caused her to have loose stool with more blooed?
Thank you for you opinions, information and help