Looking for answers

Hello,

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

I can't comment on the GI specialist's findings, but no matter what, you should get a second opinion.

The medicines for UC are strong, especially for a little child, so you want to make sure you're on the right track. I have always gotten second (and even third) opinions, especially when I was recommended to get on even stronger medicines, such as Azathioprine.

I hope your daughter's fine soon.

I would get a second opinion. Like fruitgirl said, the rectum is pretty much always affected with UC. Although if it were a milk allergy, don't you think it would have shown up awhile ago? My boyfriend has a casein allergy (milk protien) and I'm pretty sure it manifested pretty much as soon as he was born.

But yeah. See another GI.

Definitely get a second opinion, this is a very difficult disease to diagnose.

I would stop the Pentasa immediately. Get a second opinion like everyone else has said but if cutting out milk from her diet has helped her so much, I would just stick with that for now and see if things continue to improve. Before I got UC, I thought that doctors were like Gods. I have a completely different opinion of them now. You have to be your own advocate, demand answers and go with your gut on what you think it best for your daughter. No one can force you to give her the meds. I'm on my fifth GI since being diagnosed six years ago. I even drove as far as Cleveland to see one of the best doctors.

Hi

Thank you all for your comments

We are from Canada and are going to CHEO which is the Childrens Hospital of Eastern Ontario. Our other option would be Sick Kids in Toronto which is 5 hours away. If anyone knows some good GI Dr's at either hospital I would appreciate the information.

One question on getting a second opinion, I figure there is probably 2-4 GI Dr's at our hospital so if we get a second opinion are the Dr's not already sort of slanted in favour of their coworker?

Pentasa was stopped on Sat after we noticed the rash, no word back from our Dr on what/if we should do anything further.

I read an article from the American Journal of Gastroenterology, link is below, and it was all about kids with allergies that basically suffered from the same type of symptoms as my daughter. Although they mention in the article that the symptoms went away in a few days without milk, so now I am wondering if there is another allergy involved because she will often have skin reactions after eating certain foods. We have never been able to place the cause, ie Frutopia cause blistering on her face, the other day she had a reaction on her chin while eating some thousand islands salad dressing and then yesterday she was making home made playdoh and got some next to her eye which caused a reaction.

http://www.nature.com/ajg/journal/v103/n10/abs/ajg2008518a.html

Actually the odd thing that we have called the Dr out on is the fact that no one has ever given her a stool test, we tried some ointment for what they thought might be a fissure then when that did not work is was into a colonoscopy.

We have tried her on Lactose free, however, that really did not sem to make a difference and if anything seemed like things were worse

The GI Dr did say that she does not believe that it is Crohn's for various reasons from the result of the test.

From the colonoscopy we were told that it was on the left side and that the inflammation was "patchy" not continous throughout the colon.

Thank you again

I've always heard that when you get a second opinion, it should be with a doctor from a different practice. They could be affiliated with the same hospital, as long as they are with a different practice.