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04/22/2011 09:21 PM

Vancouver BC - Child w/Crohns - Advice Please!

sweetar

Dear all,

My cousin's son who is 12 was diagnosed with Crohn's last year by the Children's Hospital in Vancouver BC. Things have gotten very bad for him now, he has had a flare up for 6 weeks with severe bleeding, anemia, and doubled over with pain all night long. The Doctor admits that he does not know what to do he just keeps saying "there is nothing we can do, the drugs are not working", they won't admit the child when he is near fainting and and his skin is now almost yellow in color. They have him on Imuran and Mezavant (together) and I am writing to see if anyone has (1) any advice on how we can find a doctor who can try to understand and help, and (2) has anyone heard of taking these 2 drugs at the same time (This is all they are giving him, nothing else). (3) Is anyone aware of any resources in Canada (I am in the US but they are in Canada).

Now his mom, who is a single mother is just crying all the time because she doesn't know what to do, how to help him, and the Dr/ just keeps saying "there is nothing I can do, we don't know how to help him".

Thank you so much in advance!

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04/23/2011 02:22 AM
lyris
lyris  
Posts: 276
Member

My doctor prescribed Entocort and Loperamide at the same time, and I had a bad reaction. I told her never to prescribe two at the same time as I had a reaction and we weren't sure which one. It turned out that both were causing me trouble.

I suggest your cousin look for another specialist as this doctor isn't being any help to that poor child. Is he a specialist? A Gastro-intestinal Doctor? That's what your cousin needs for her son.

Please tell your cousin don't waste any more time. Find a specialist who knows what he or she is doing.

Please let us know what's happening, we really do care.

Post edited by: lyris, at: 04/23/2011 02:24 AM


04/23/2011 12:23 PM
Peglet
Peglet  
Posts: 335
Member

Sweetar, I am so sorry for what your cousin is going through. Her son definitely should be seen by a pediatric GI specialist. I did a little google-ing. It looks like the BC Childrens Hospital in Vancouver has a gastroenterology department. http://www.bcchildrens.ca/AboutUs/default.htm

Where is he going for treatment now?

I had never heard of Mezavant so I looked it up. It is not available in the US but it seems like it may be similar to Asacol. Of course I cannot know without talking to a pharmacist or doctor. http://www.shirecanada.com/en/shire-canada/ MEZAVANT.Consumer%20Information.28.02.2011.pdf

If it is similar to Asacol then it should be safe to take with Imuran. Asacol is a mild anti-inflamatory. But from the sound of things these drugs are not working so well. The initial treatment for many crohn's patients is prednisone or entocort. These are both steroids that you don't ideally want to stay on for very long but they are often very helpful in getting a flare under control.

Please encourage your cousin to seek out a specialist. My heart goes out to her and her son. And thank you for caring enough to seek help for them.


04/23/2011 03:12 PM
sweetar

Dear Lyris and Peglet,

Many thanks for your responses and kindness. Yes the child is with one of the pediatric GI specialists at the same hospital that Peglet found online. The Dr. is admitting that the child is not responding to the drugs, he does not know what else to do, it's as if he has given up...in case someone has had a positive experience with a specific pediatric GI specialist even in the US, perhaps that Dr. would be willing to share his positive experiences with this Dr. I am not sure what else to try or where to look. I did read about the several very young children age 3 and less whose parents are facing similar issues and my heart goes out to them too. Thanks to all for your help and ideas.

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