Frustrated Parent of a PSC patient

This question is for parents or caregivers
Of teenage PSC patients. My son is 18
Now & I’m finding it extremely difficult
To get any answers regarding his last
Labs. He signed a form when he was
15 giving me permission to act on his
behalf regarding his medical care.
Have any of you run into this? His GGT was
176 & ALT 90. He’s had much worse granted
But he’s vomiting again & has gained 15 lbs.
I’m so frustrated.

Since he has turned 18 he would now need to resign waivers to allow you to know his medical information or to act on his behalf if he wishes to do so, otherwise in many states and with the HIPPA rules your hands are tied. I know this has to be frustrating. It's the law. They are on your insurance, most likely he is living in your house but with the new laws the health organizations must follow, it is basically impossible to get information unless the person signs a waiver giving you permission. I understand, it has to be rough. Many young people would wish to share with you, I hope your son decides to do so. His not doing so puts him in danger and he, although "an adult" now, may not fully understand his illness. I hope he will want to have you on "his team" in helping to control his PSC.

I'm struggling with this too. My son, also 18, just transitioned from the children's hospital where we had established a great rapport with his specialist. We had easy communication through phone and email when necessary. The hospital has a program where they work with the kids to help them learn to manage their healthcare, and I think between being a teen, resenting having to deal with this, and the "system" encouraging my son to take it over, he's not so happy about my participation. And in the midst of this transition, we are attempting a med change... I'm trying to let go a little because hopefully he'll be off at college next year and then he'll really need to be on top of it - so this is a good practice time with us here to watch from the sidelines.

AJ, I know how hard it is to watch the vomiting... mine sleeps a lot ;-( But then he's a teen, and maybe he'd be sleeping a lot anyway! Do you know if there is a plan to try to address the symptoms and elevated numbers?

Take care, and I hope your son starts feeling better soon!

Hi Moms
I can imagine your frustration! Late teen years are normally a time to begin exercising independence and making their own adult decisions. Kids can make their own medical decisions and ask for confidentiality in Canada as soon as they understand the medical consequences. Kids begin to feel bad about being sick as they see what it does to their parents. Perhaps part of it is a belief that it saves you grief - just like parents keep things from their kids.

As a teen counsellor, here are some ideas… if they refuse to talk things over with you, can you agree as to who they will talk to? They may have a connection with another adult or maybe a past counsellor? It may feel better for you to know they are talking to someone. (Any good counsellor will encourage them to talk to you for support.)

Another idea is to connect the teens up. I mean how many 18 year olds have this crazy disease? Is their a teen on line group for PSC? Could it be moderated for support?
Hope these suggestions help. I have 2 young adults and one minute they are annoyed when I don’t ask about their personal lives and the next I get slapped down for asking… This is all normal but frustrating development. :slight_smile:

Dear Frustrated Mom,

I'm not getting the sense in reading your posting that there is any problem between you and your son sharing the information, but it's the system that is preventing you from doing this. I would suggest you go with him to an appointment with his hepatologist, sit down and discuss the situation with him and have your son ask the doctor what forms he would need to sign so that his parents can continue to assist him with his treatments unhindered by HIPPA, etc. There's got to be a proper way to do this, you just need to hold to your guns. I'm sure your son appreciates all you are doing for him as a parent. Just because they are 18, it's not some magic number when the parents are no longer important. Just be persistent keeping in mind that your son has got to push for this and give you all these permissions to the powers that be and then hopefully things will settle back down to normal. Good luck!

Thank you all for your comments. I was able to
Finally get them to concede & fax me
A caregiver form. Even the simple task of getting
A note to excuse him for missed classes
Was like pulling teeth. His GI Dr. & Family Dr.
had a long conversation wich I think helped in my favor.
My gut instincts have been spot on since
his PSC journey started. I think his Dr.@ Childrens convinced
his Dr. here that my son did want me involved
& I have been since the beginning. I don’t understand
why it was such a struggle. I asked for caregiver form
three different times & just received it today.
It’s hard for him to make appointments when he’s still
in school. He’s always participated in his care. He’s done remarkably well
regarding communicating his concerns & asking questions.
He just recently has dropped out of caring about
following up & paying attention to what his body is telling him.
As a parent I’m still responsible for his education, insurance &
etc. but I can’t talk to his Dr.'s? His medical bills are now coming
Addressed to him & I have the distinct feeling that’s what has caused
The change in attitude. I think he’s worried about his future. I have
assured him that he has my full support. I just wish HIPPA understood
that just because he’s 18 doesn’t mean he’s ready to deal
with all of this on his own.
Thank you all for your comments.

Ruby, do you have any advice, as a teen counselor, how to find resources to support my son. He seems to have entered another phase of excessive fatigue - and it is hard to know if this is physical, or psychological, or both. I really don't know where to turn, and he absolutely doesn't want to confide in me, which I understand.


Hi mom

Sorry for delay.
I am not sure where you are and what resources are in your area.
It must be harsh for your son! He cannot go out carousing with his peers. He may be seeing his friends planning to move on to college or other plans while his future is ambiguous. As it is a natural time for separation, separating in the health area is maybe one of the few places he can take control. I hope you are not offended. As parents we are sometimes penalized when we bring up our children to be independent :slight_smile:

If you need a Dr. Referral for insurance purposes, start there. Also checkin with Dr. about his symptoms. Sleeping lots could be PSC plus being a teen. On the other hand, your doc should do a mental status exam for depression. Antidepressants may be prescribed for moderate to severe depression, but watch him carefully as they can cause suicidal thoughts in teens. Have him sign an agreement that if he has these thoughts he will tell xxx immediately. If xxx is not available, they will tell YY and or you first and YY second. Still watch carefully and get him in to a doc if concerned.

As for a counsellor, the high school or college may have referrals. I suggest that he interview at least one female and one male and then choose. He needs to know that there is confidentiality but make sure the counsellor is aware of your concerns about depression. there is no confidentiality if your son is thinking of hurting himself.

I am sure this all sounds scary, but I also bet I am confirming some of your thoughts on this. Go with your gut mom!

Hi Ruby - Thanks for that advice! I really appreciate it!!