My 28 yr old son (on the autism spectrum) was diagnosed two months ago during concurrent diagnosis for ulcerative colitis. MRCP revealed that most small bile ducts are already compromised and main bile duct is blocked. First attempt at ERCP balloon dilation failed - waiting to get in at a major hospital in Seattle for a retry (5hrs). Fibro scan of liver put him at F0 for current liver fibrosis. Itching is increasing and kept him awake for the first time last night. Still in the emotional grappling stage - he started supportive counseling a couple of weeks ago as this comes on the heels of recent struggles with not being on the same independence, career and relationship track as others his age. All the schedules of appointments, tests and specialists is overwhelming…I keep worrying I will forget to make an appointment or not realize if something falls through the cracks. We live in a rural area served by a large regional health conglomerate so we have a local doc, visiting GI (for the UC), a main facility (2 hrs) GI and Heptologist - who read the fibro scan but we won’t see in person for three months. (They have us on a rotation where we switch off the three specialists in turn)… Plus the doctor at Virginia Mason who will retry the ERCP balloon procedure (don’t even know yet if that is GI or Hep). Cycling between being sad, strong, dealing with a lot of other stuff related to closing my main street business of 20 years and an upcoming move. looking forward to support and answers. Thx :)
Hi I am pretty new to these pages having been formally diagnosed recently myself, so answers may be thin on the ground from me. However at 50yrs and having had a few health issues under my belt and a few more to come I can give you the following support:
- Why?. Why you and why your son. Because you are a strong person that can deal with it. Purely by being on this page shows that you are not giving up and are up for the fight.
- What next? Who cares, deal with one step at a time keep doing things that make your family happy and stop doing the things that dont.
- Can I do more? Absolutely by reading these pages you are educating yourself. Not to do everything your read, but to enable you to make informed decisions to handle the above two dot points.
I look around me for inspiration, as everyday I see somebody whether homeless, sick or disabled that are far worse of than me and they keep on punching, so if they can so can I.
Hope your son’s next ERCP goes well, but be strong for him and yourself.
Thanks for the encouragement!
Thank you for your post and welcome to our group of patients and families living with PSC. From what you have described, it is imperative that your son see a hepatologist as soon as possible. I’d encourage you also to make sure whomever is performing the ERCP’s that they are someone skilled in advanced endoscopy and do this day in and day out. This is a very invasive procedure and to compound that the risk of pancreatitis is high. It sounds like from what you described the one who did his other ERCP did a good job which is great! I too had a period of time where they could not balloon dilate into my left hepatic duct and had to depend on the right one for drainage. With some persistence they were able to penetrate it on the next time around. If most of his small ducts are showing already compromised then there is concern that he see the hepatologist soon. Depending on the progression of the disease he may need to go ahead and be listed for transplant. Do you have any labs you can share with the group which will give us an idea of some things? Not trying to scare you or anything like that, but just wanting to be honest of the urgency of that appointment. We are here to support you in any way we can with as much information as we can to help you through these days. We’ve been there and been where he is and survived this awful disease. And if it should come to transplant sooner than later, don’t let that cause undue distress. One day without PSC is greater than all the days before with it. I look forward to hearing back from you soon. Be assured of my thoughts and prayers for your son at this time.
PSC 2011 / Liver Transplant 2015
Thank you for the reply and support. He has a team working with us that includes a hepatologist. She has not seen him face to face yet but just read his fibro scan this week which shows his liver damage to be at level F0. We just did labs again on Friday so I have not seen those yet. As of two weeks ago his enzymes were still elevated but his bilirubin count was normal. My understanding is that the stricture they are trying to dilate is in the common hepatic duct but they couldn’t even get the wire in or get contrast dye to go in. Due to the normal bilirubin count at the time and the fact that he seems to have symptoms in waves, we think it somehow must be letting bile through intermittently.
When we go to Virginia Mason in Seattle to retry the procedure I am going to look into their program.
Breathe… even I had to reading it all as I can so relate - but on a personal level, not my child. I too go to Virginia Mason and see Dr. Asma Siddique - I really like her. She is upfront, does not delay in moving things forward if she feels we need to. She is a hepatologist and I would not see any other doc than a hepatologist when it comes to PSC and treating the symptoms.
Virginia Masons website is great for looking up who is who.
With a bit of a hold time, any person on their general line can answer your questions or direct you on their site.
Please keep us posted and hang in there. You can only do so much and one thing at a time… everything you are doing thus far is short of miraculous… my heart and blessings are with you and your son.
Thanks for the update. I’m relieved to hear you are seeing a hepatologist. As long as he has PSC stay with the hepatologist. Personally I wouldn’t even see a PA at the hepatologists office unless I had to. Paying what I pay for insurance and all I expect to see my doctor every time, and thankfully that has been the case. We look forward to hearing more after your appointment.
On a side note, I assume you have health-care power of attorney on your son at this point due to his other medical conditions? That’s very important moving forward, especially if he cannot fully understand all that is happening. Take care.
Both his father and I have permission on record to access all of his health care information and be allowed to discuss with medical personnel. We filled out the healthcare directive but need to get it notarized - something we did not realize they couldn’t do at the hospital when they provided the paperwork. We will be getting that done asap.
As Ian is high functioning, we currently do not want to take over guardianship and remove his own rights, as some parents of autistic adult children realistically need to do. Mostly we are finding it takes us having a second ‘break it down’ discussion after the appointments. At that time he is a bit dazed due to the stress level (although I don’t think this is necessarily abnormal given the circumstances).
I wholeheartedly agree with you regarding not assuming guardianship. The healthcare power of attorney gives you the authority to make decisions for him when he’s unable to do so for himself, but does not relinquish his authority if he decides another course is better for him and he can make that decision clearly and consciously. Thanks for being there for your son and giving him as normal a life as possible.
Corina, welcome to the group (though I’m sorry you need to be here). I’m terribly sorry your son has been diagnosed. I’m the PSCer in our family, but I have a 20 year old son who is also on the spectrum and I know that can be a lot to handle in and of itself. Plus a business to run? You must be Superwoman!
My heart goes out to you, as do prayers for strength for you to keep going through all of this. It’s hard enough being a mom, but all the extra things can be overwhelming! Please know that you can always reach out here. It’s a great place for “blowing off steam” or looking for information and advice for what is going on with your son. ️
Thanks so much for your response! I rarely run across mom’s with spectrum kids in their 20’s… I’m always the one expected to GIVE the support - glad to meet you! I closed my business this last year due to an economic downturn in our community, but i always knew there was going to be a greater reason and I was at peace with it. Turns out this is it.
I feel the same way…not many with young adults on the spectrum…it can be kind of lonely and you feel like you’ve just figured things out for them as you’ve went along. If you ever need any “Mom support” for anything, just reach out. Is your son high functioning or is he more dependent on you? Mine is high functioning and has chosen to be a machinist, so he goes to the local junior college. He is maturing so much…he’s come so far. I just wondered because I would encourage you to encourage him to move forward with whatever he wants to do. Don’t let the PSC make decisions for you or him. Sending ((hugs)) from Georgia!
I have two sons on the spectrum, Ian 28 (PSCer) and Jonathan 26. They are both high functioning and still live with us. They both used to work part time at my company but now are not working. They are both extremely talented artists and have done work for their older brother’s freelance 3D animation company but that is not a regular opportunity. Options in our tiny rural town are very limited and now Ian has the fatigue issues and is very overwhelmed and so is shutting down a lot (bad timing to add the stress of looking for work) and Jonathan has a circadian rhythm disorder and chronic pain so it’s very difficult to depend on him being awake or able to move much from day to day. Otherwise, they are fairly independant - shop for themselves, cook, etc. (although I shudder to think what their kitchen or litterbox would look like if they were on their own without someone who reminded them about regular chore routines lol! Although I have just learned that if they did get a place that there are services available for support like that).
It was nice to see the recommendation for all PCSers to take someone with them to help take notes and remember details… it made Ian feel less like he’s just not as capable as others in us attending all his visits. (The stress response of shutdown and hyperfocus does a doozy on his grasp of what the doc is saying sometimes!) Unfortunately the diagnosis hit harder than just by itself because he feels that much like his autism, this is one more thing he is not in control of. He’s started seeing a counselor once a week, so that hopefully helping.
Hi Corina. Sorry it’s been a few days since I’ve responded. My fibromyalgia flared up and had me in bed a few days. Ian shouldn’t feel less capable. Brain fog is a horrible side effect that affects most of us. I try to take someone with me to my visits for the very same reasons. I can’t remember things correctly and sometimes cannot even remember words or form a sentence that I’m trying to say. It is very frustrating. I hope as Ian experiences more brain fog, that he is able to use his coping skills to channel his frustrations better. I’m glad he’s going to therapy. It always seems to help.
My son, Alex, has severe OCD, so he’s in therapy to help with that. He won’t talk about my disease, it causes him anxiety and I believe that it’s one of the triggers to his OCD. Alex is very helpful though. When he’s not at school he helps me with things during the week, especially running errands when I’m busy working or not feeling well. I’m a self-employed seamstress and work from home (when I can). It’s been more difficult to keep up with work because sometimes there are more bad days than good, and I’ve had to drop one of my contracts, because I just couldn’t get it all done. Anyway, tell Ian to hang in there and Alex and I are praying for him.