Newly diagnosed child

Welcome New Member Introductions
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Yesterday, after a 5-day hospital stay that included a colonoscopy, endoscopy, 2 ultrasounds, MRI, CT scan and I don't even know how many blood tests, we got a final diagnosis of PSC and Crohn's for my precious, only child. She's all of 8 years old.

We were finally discharged yesterday, and I don't think I've slept more than an hour tonight. Obviously I've found this website, and a Facebook group. But I'm feeling hopeless, devastated, and absolutely overwhelmed.

In two weeks we will go back to the doctor (fortunately, we are near a major children's hospital and research center, Pittsburgh), where we will meet with both the pediatric gastroenterologist (who cared for us at the hospital) and a hepetologist. In the meantime, we have prescriptions for ursodeoxycholic acid and pentassa (spelling?). Her PSC is not characterized as autoimmune.

I'm sure we'll learn much more about the stage of her disease at the doctor's appointment. I take a small amount of comfort in that her liver function is, apparently, good -- elevated enzymes was the concern, and what prompted the further tests. Her Crohn's is apparently not that active now, as the inflammation wasn't visible on the scopes and only confirmed through biopsy.

The docs have been pretty reassuring, but they have told me of the high probability she'll need a liver transplant at some point. They say she should feel better rather quickly once on medication. Everything I see online seems considerably more discouraging.

They pretty much predicted that she had IBD when we were sent for the colonoscopy/endoscopy, so I was prepared for that. But no one can adequately prepare themselves for something like this.

I'm turning to you (especially parents of kids with this disease) for words of encouragement and hope, especially to parents. Please help me. I'm not sure how to even go on from here.

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I understand completely how devastated and overwhelmed you are feeling right now. My son was diagnosed with Crohn’s disease and PSC at age 12 last Feb. he was put on the same meds as your daughter as well as prednisone initially. It took a few months to get his symptoms under control but he is currently feeling great, his liver enzymes are in the normal ranges and he has gained back all the weight he lost, and then some.
Reading what is available on the Internet can be very scary and discouraging and after a while I had to just take a big break from looking up anything just to keep my sanity. One thing I realized is that you don’t hear alot from people who are doing well, mostly people who are having difficulties and need support and advice but here are people out there who remain symptom free for decades. What we need to focus on is that time, time for them to grow, to have fun with friends, to go to school, to feel as normal as possible. The hope is that during that time a cure will be found, lots of work is being done in this area.

My son is a little older than your daughter and can maybe understand a little more but for the most part he doesn’t ask alot of questions about the future, he is concerned with right now. So I met with his school and got a formal plan (a 504 plan) to allow him unlimited access to the bathroom or nurse to avoid and embarrassment and extra make up time for work if he is out several days. Probably not as much concern at your daughters age but keep it in mind for middle school. The other thing important to my son is sports. His spleen has been slightly enlarged so we get ultrasounds to make sure it’s safe to play contact sports. He was able to play football in the fall, was on his school basketball team this winter and is now on the baseball team. He has very few symptoms now, fatigue sometimes but nothing like he had last year.

We try not to talk about his diseases very often now so he can feel normal, it took a while to convince my mother in law to stop looking at him like he was dying. Of course none of it is ever far from my mind but that constant feeling of panic and anxiety is not there. It took me a while to get to this point and his good results from the meds has made it easier. I still go into a mini panic when he gets sick with any normal childhood virus but I do my best to hide that panic from him.

So I haven’t been at this very long and I don’t have a ton of advice but want you to know that my son, today, is living and thriving despite IBD and PSC. We are taking things one day at a time, enjoying all of the normal things in his life, not taking a single thing for granted.

I wish you and your daugher the same and I am here for you anytime. We moms need a place to get it all out so we can be the rock our children need.

Donna

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Hello, My daughter is 15 and it was real scary when we found out she had PSC. she was dx with that in 2009. she also has chron's and celiac. You are not alone that much I can tell you. I have found great comfort from the boards that I am on.

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You have turned to the right places. First of all, you and your daughter are getting the best care in the country in Pittsburgh for what is happening to her. And you've turned to one of the websites that I have depended on for answers over the years. Good, solid scientific information from compassionate folks who are caregivers or patients themselves. I also subscribe to ■■■■■■■■■■■■■■■■■■■■■ that was formed through the PSC Partners organization (based in Denver but touching lives around the world).

I suggest that you make a list of all your questions to prepare yourself for meetings with your daughter's doctors. It's hard to stay on track when you're receiving a lot of information really fast. Print out your questions and take time yourself or bring a scribe to write the answers. I've done this lots of times and the doctors actually like it.

Please feel free to post any questions you have here, too. We aren't doctors but can at least offer you our experiences -- and more questions for your docs! I'm sure this is very difficult now, but it will get better for you and your child. Please hang in there and know that you have the care and compassion from all of us to rely on, too. Prayers and blessings to you.

Dana

PSC 2-1-2006; breast cancer and mastectomy, 10-2011

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Thanks so much for sharing. My heart goes out to you and your daughter. Hopefully folks here can give you some guidance.

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Just want to say that although I’m not a father, I can only imagine how you are feeling. I have nieces and nephews around the same age as your daughter and the thought of one of them having PSC is unthinkable. I can only say that you are in my prayers. I know how my father is feeling after I was diagnosed just 4weeks ago, it is as if he is already grieving for me. Try not to let your daughter see it affecting you because it will only add stress to her (I often think how things would be so different had I not told my family…looking at me differently, treating me as if I am about to break in half etc. Keep the faith!!! God bless

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Hi Momtol,

My 6 year old was diagnosed with PSC about a year ago. Please contact me with any questions you have and I'll get back to you asap.

Currently my daughter is a level 2-3, and they suspect she got it at 18 months. They're predicting things getting tough in 3-5 years. She doesn't have IBD or crohns, but does have portal-hypertension and an enlarged spleen. She is on Ursidol only. There's a lot of scary information on the internet but it's typically from a medical stand point. Here you will find actual experience, and a better understanding of how different the disease can be for people. Unfortunately, PSC is so rare in children that it's really hard to get any good info on it.That's what we've learned.

PSC doesn't mean that's it. Transplantation is there to save the day, as we have been told and according to our GI, the risk of complications, bad complications are 1 in 13 after the first year. We are sure our daughter will survive, but it will be a challenge. But she won't be alone, she's got us!

We met with our GI a couple weeks ago, and he was telling us about several post-op transplant kids that are his patients, now teenagers, and how he scolds them about not drinking alcohol, but he thinks they are anyways. That seems to be the biggest problem for them. He is a real straight shooter too... There's another child in our area, about the age of your daughter who was presenting symptoms when diagnosed. I believe there was a transplant and things are going smoothly. I hate to get into the serious details of this, but the truth is, as we have been told, is there's no real way of knowing when it will get tough, again because it's so undocumented in children. That's the real tough part for us, is the waiting and the worrying. But do you want to spend your time worrying or having fun?

We've found that we have to focus on what's important in life, not because time is ticking away, but because of the big picture that anything can happen to any of us at anytime.

Take care!

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G'day MomtoL,

Just wanted to say hello. My son was diagnosed with Crohns and PSC and AIH last July when he was 8 years old.

After the initial shock of diagnosis, I've found that I need to feel empowered. I read medical journal & research articles, have also got involved with fundraising and I'm setting up a local support group, and of course, I rely on the social support of family and friends. I'm also conscious that my son will need support and tools to cope with managing this illness, which is my current focus.

Good luck on your medical journey.

A

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http://health.groups.yahoo.com/group/psckids-support/?tab=s

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Hi my name is skip, i was diagnosed with psc in 2004 i am now 47yrs old i am not in anyway in your position it must be awful for you i have children myself and it would be awful to think of them with psc. What i can say is dont look online for crumbs of comfort i did this and found more negative things than positive or it maybe the negative things are the ones we dwell on..i can tell you ive had alot happen to me since 2004 but i am now on the other side of liver transplant and my life is as good as ever im back at work and live a normal life......im here should you have any questions...God bless .

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i realize this post is a few months old but i suppose it's never too late to possibly help someone. that being said, i can personally attest that a PSC diagnosis does not mean a liver transplant or whatever is in your immediate future. i was given the diagnosis back in 1997 and it honestly has been the least of my problems. as grim as it can seem, it is not always a death sentence.

you can check more into my story at my new blog

http://asizcreatives.wordpress.com/the-back-story/

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great post Asiz!

asizCreatives said:

i realize this post is a few months old but i suppose it's never too late to possibly help someone. that being said, i can personally attest that a PSC diagnosis does not mean a liver transplant or whatever is in your immediate future. i was given the diagnosis back in 1997 and it honestly has been the least of my problems. as grim as it can seem, it is not always a death sentence.

you can check more into my story at my new blog

http://asizcreatives.wordpress.com/the-back-story/

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My son was diagnosed with PSC and IBD this week he is 15 but physically looks more like a 12 yr old no body hair etc. My partner is not convinced of the diagnosis or the treatment as the the drugs have not been tested on children under 18yrs. He thinks he has a parasite. Any thoughts or ideas

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Hi @fish -the Doctor should be able to give you the reasons for the diagnosis (lft levels etc with numbers for each) my son is recently diagnosed also - welive in the UK - our hepatoligist and gastro (my son has ibd and psc) were both very thorough and explained that it took a while to diganose as its so unusual in children. Go back to the Dr's with your concerns, don't be afraid or think your question is silly - for me it was a massive shock to gte the diagnosis and took me a while to come to terms with, but if your partner is convinced it is something else then chat through this with the Dr and see what he says - hope all goes well

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Thanks a lot



rcmoore50 said:

Hi @fish -the Doctor should be able to give you the reasons for the diagnosis (lft levels etc with numbers for each) my son is recently diagnosed also - welive in the UK - our hepatoligist and gastro (my son has ibd and psc) were both very thorough and explained that it took a while to diganose as its so unusual in children. Go back to the Dr’s with your concerns, don’t be afraid or think your question is silly - for me it was a massive shock to gte the diagnosis and took me a while to come to terms with, but if your partner is convinced it is something else then chat through this with the Dr and see what he says - hope all goes well

16

Hi,

Hve you seen the work/research being done at Standford by Dr. Cox and others. If not here is a post that was on the net last year. If you Google Dr. Kenneth Cox Vancomycin you will see a lot more. He is also very happy to talk to doctors who treat pts with PSC and he often takes call from parents to help them better understand how he can help your doctor help you or your child.

Here are two links but please do a search as there is much more.

http://stanmed.stanford.edu/2011spring/article6.html

http://journals.lww.com/jpgn/Fulltext/2008/07000/Long_term_Treatment_of_Primary_Sclerosing.10.aspx

I wish youall the best.

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Hi all i can say dont read to much in to what you read online thats a mistake i made........JUST LISTEN TO THE DOCTORS.

Everybody has there own advice and storys to tell but in my experience everyone is different. I was diagnosed with psc in 2004 i was 39yrs old i had a transplant in 2011 and i am doing really well and just living a normal life, alot went on inbetween years but like i say everyone is different. Its awfuls its your child but stay positive and try not to dwell on negative stories the doctors will deliver for you.

Take care

Skip. x

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sorry, i've been caught up in life and am just now getting back here. but i wanted to take a moment to say thank you :)

Scott Orn said:

great post Asiz!

asizCreatives said:

i realize this post is a few months old but i suppose it's never too late to possibly help someone. that being said, i can personally attest that a PSC diagnosis does not mean a liver transplant or whatever is in your immediate future. i was given the diagnosis back in 1997 and it honestly has been the least of my problems. as grim as it can seem, it is not always a death sentence.

you can check more into my story at my new blog

http://asizcreatives.wordpress.com/the-back-story/

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