My son (Gavin) was just diagnosed with UC/AIH/PCS. As you can imagine my wife and I were floored by this diagnosis. Below is a little background and some questions. Thank you in advance to anyone who replies. As you can imagine we are devastated and looking for any help or advice out there.
Gavin started showing a sign of UC in December. He was at an event for school and was running around with his buddies when he ended up having an accident in his pants. The accident had a little blood it in so we got him to his pediatrician right away. There was a shocking diagnosis of C-Diff, but antibiotics cleared that up and the blood went away. Fast forward to February and for some reason I asked him if when he went to the bathroom there was blood in his poop and I was surprised to hear yes. This was a regular question in December until the blood cleared, but I had not asked in a while. More follow ups with his pediatrician led us to reach out to the best GI doctors in our area (Lurie’s Children’s in Chicago). Met with GI doctor and scheduled a endo/colonoscopy and also ran blood work.
We were coming to terms with the fact that our son probably had UC and then we got the call that his bloodwork was off and were told that we were also now being referred to hepatologist. The hepatologist wanted an ultrasound and a liver biopsy. They did the biopsy while he was under for the colonoscopy.
Last Thursday was the day for both and we got the diagnosis of an early stage UC to be treated with 5-ASA’s. Then this Tuesday the bomb came that the biopsy also showed signs of AIH/PSC. We don’t have the stage yet as we have not had our follow up with the Hep doctor. That will take place this coming Tuesday. In the meantime Gavin has been started on Prednisolone, Cellcept, & Ursodiol.
Gavin’s UC symptoms are mild. Just the blood in the stool, no pain, no discomfort. At this point he is asymptomatic for the AIH\PSC. It is so hard to look at my son who seems completely healthy and know what he has in front of him. The poor kid’s life will never be the same and he is only 6! When I reviewed his blood work I knew in the back of my mind he had PSC and I knew that AIH was a possibility too so I have been researching this site for a few weeks now. So here are my questions:
I have already reached to Dr. Cox but I read in some places on this forum that he was not with Stanford anymore. The email I used for him is a Stanford address. Can someone who has worked with him recently please private message me and let me know if the contact info I used is correct. Or would I be better off getting in touch with Dr. Davies? Should I be calling somewhere instead? If so does anyone have a number? How long did they take to reply to email to anyone who has gone that route?
I have messaged my hep doctor and brought up Vancomycin and I’ll see how she responds. I will hear what she has to say about her current treatment plan but I want to bring the vanco studies to her attention and I will be fighting to try it if it is an option for my son.
For those who have used Vanco long term have there been side effects? Has it lost its ability to maintain good enzyme levels after taking it for a while? Has anyone who also has AIH not been able to use Vanco for any reason?
Is anyone on Ursodiol, Cellcept, or Prednisolone? Have any of these drugs kept you or your child stable or even improved liver enzyme numbers? I don’t have a lot of hope for them from what I’ve read. I also understand that some of these are for the AIH and not the PSC. I will find out exactly what my hep doctor is using for what and what her hopes are.
Basically if you have any other advice or guidance at this time I will take it! I am crushed, terrified, confused, depressed. Honestly I am so many things right now I can’t decide. I guess the word that keeps coming to mind right now is frozen. Since I got the call 2 days ago I am just frozen.
Thank you so much for reading. I look forward to any and all replies.