- Joined
- Sep 20, 2011
- Messages
- 26
Hi everyone, it's been a while since I posted last. i hope you are all well Tadhg is maintaining well on infliximab, he's growing and thriving in secondary school (middle/high school). The disease is very much still there but he is living a good quality of life right now. I hope you can help the parent below. Rachel
A parent contacted me on gutsykids ireland for support she has a 13yr old diagnosed with UC + PSC, I am not familiar with the disease or the treatments available. If anyone can offer support please contact me on [email protected], they are very scared and would like to talk to someone.
"My 13yrs old daughter A.M.. was diagnosed in August last
year with UC and at Xmas with PSC (Primary Sclerosis Cholangitis)a
very rare disease which affects the billiary tree. Its a progressive
disease of the liver which unfortunately doesnt have a cure . Would
any of the parents experienced that and would anyone heard (or tried)
the Vancomycin (oral tablets) treatment?"
"Thks very much for replying to me. Yes I would love to get in contact with parents who are familiar with the PSC condition and who might have more info about the treatments available. I would really appreciate any bit of info on that as this condition is quite tough and it seems that the treatments available to date dont delay the progression of the disease, they are just improving the symptoms. It also seems that a recent study done in USA suggests that the Vancomycin (oral tablets)stop the progression of the disease with no adverse effects.
My 13 yr old is currently on high dose Prednisolone and they to put her on Imuran as well with the all known tough side effects. Im still holding off on Imurann. Shes been through quite a lot lately..
If any of the parents would have more info on this condition and/or on the Vancomycin treatment, I will be more than happy to get in touch to discuss. Please feel free to circulate my email address around. Also would you know any good hepatologist who might be able to see us privately?"
A parent contacted me on gutsykids ireland for support she has a 13yr old diagnosed with UC + PSC, I am not familiar with the disease or the treatments available. If anyone can offer support please contact me on [email protected], they are very scared and would like to talk to someone.
"My 13yrs old daughter A.M.. was diagnosed in August last
year with UC and at Xmas with PSC (Primary Sclerosis Cholangitis)a
very rare disease which affects the billiary tree. Its a progressive
disease of the liver which unfortunately doesnt have a cure . Would
any of the parents experienced that and would anyone heard (or tried)
the Vancomycin (oral tablets) treatment?"
"Thks very much for replying to me. Yes I would love to get in contact with parents who are familiar with the PSC condition and who might have more info about the treatments available. I would really appreciate any bit of info on that as this condition is quite tough and it seems that the treatments available to date dont delay the progression of the disease, they are just improving the symptoms. It also seems that a recent study done in USA suggests that the Vancomycin (oral tablets)stop the progression of the disease with no adverse effects.
My 13 yr old is currently on high dose Prednisolone and they to put her on Imuran as well with the all known tough side effects. Im still holding off on Imurann. Shes been through quite a lot lately..
If any of the parents would have more info on this condition and/or on the Vancomycin treatment, I will be more than happy to get in touch to discuss. Please feel free to circulate my email address around. Also would you know any good hepatologist who might be able to see us privately?"
