Thanks to everyone who responded to my first entry. Greatly appreciated to know that this disease comes with alot of trail and error...
My son and I traveled to Childrens Hopital in Vancouver for an emerg visit as Imurane and Pred not working for him. We spent 2 hours with his Pediatricain GI there who has let us know that the Imurane levels in his blood may be to low? She did say he was on a " good dose " for his age and weight but one never knows how it is reading in his system. They did blood work that needs to be sent to san deigo for a reading count of the level if Imurane. I have also requested the do another full CBC to exclude any thing else going on and reading the counts of his proteins, platelettes and hemoglobins which were all off with the last cbc when he was on the pred and imurane...oh boy!! I sound long winded!!
They have recommended that we wait and see what the readings from San Diego come back at and have told us to keep on the Imurane and start Budesonide. He has been on Budesonide now for a week and he had initial success ( two days of normal stools ) but now is back to bright red blood. he also does not look well at all - paler than I have seen and tired. i am very worried about him and am waiting anxiously for the results to come back...should be in the next couple of days.
In the long term his GI has mentioned that if the Imurane levels were ok and he was just not reacting properly with it he may have to start Methetrexate Injections weekly...He has reasearched this, as I have and the side effects can be leathal at his age ( rare forms of lymphomas ). I would love any feed back from parents or teens who have any experience with Methotrexate.
Thanks so much in advance! this site is a god send!!!
My son and I traveled to Childrens Hopital in Vancouver for an emerg visit as Imurane and Pred not working for him. We spent 2 hours with his Pediatricain GI there who has let us know that the Imurane levels in his blood may be to low? She did say he was on a " good dose " for his age and weight but one never knows how it is reading in his system. They did blood work that needs to be sent to san deigo for a reading count of the level if Imurane. I have also requested the do another full CBC to exclude any thing else going on and reading the counts of his proteins, platelettes and hemoglobins which were all off with the last cbc when he was on the pred and imurane...oh boy!! I sound long winded!!
They have recommended that we wait and see what the readings from San Diego come back at and have told us to keep on the Imurane and start Budesonide. He has been on Budesonide now for a week and he had initial success ( two days of normal stools ) but now is back to bright red blood. he also does not look well at all - paler than I have seen and tired. i am very worried about him and am waiting anxiously for the results to come back...should be in the next couple of days.
In the long term his GI has mentioned that if the Imurane levels were ok and he was just not reacting properly with it he may have to start Methetrexate Injections weekly...He has reasearched this, as I have and the side effects can be leathal at his age ( rare forms of lymphomas ). I would love any feed back from parents or teens who have any experience with Methotrexate.
Thanks so much in advance! this site is a god send!!!
