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NMMom

NMMom

Joined
Aug 1, 2012
Messages
104
Hey everyone. Sorry I haven't been on much but my head has been swimming and my heart breaking even more than I could ever fathom. The doctors are nearly certain that Ellie has not only very severe UC but also has Primary Sclerosing Cholangitis, or PSC. We are devastated. Apparently this disease is rare in children so there aren't many doctors with a great deal of experience. We are hopeful if we can get her UC controlled that it will stop the progression of the liver disease but there is disagreement between doctors about what this would really mean for the PSC. Worst case scenario is the PSC progresses quickly and she'll need a liver transplant but I'm refusing to let my mind go there. I am still praying and hoping and pleading with God that even with all of this she'll go on to lead a long healthy life.

I don't even know what else to say. You have all been a wonderful support, thank you for that. Hope all of your children are doing well.
 
Oh NMMom I'm so sorry :hug::hug::hug:

I have no experience with PSC. One of the members here Dexy 's son has it, but he's not around much lately.

I do however have a lot of experience with the worry, and heartache that comes with this dreadful disease. My heart goes out to you.

xoxoxox
 
NMmom I'm so sorry. :( I have never heard of this. I hope you get some answers soon. I know the worry of waiting and worrying, and I hate it.
 
Oh my goodness, I am so, so sorry to hear this NMMom. :hug:

As T has said, Dexky's boy has PSC but he hasn't been active on the forum for about 6 months now. Last I heard EJ was still doing well and at that point he had his diagnosis of PSC for at least 2 years.

Ugh, I don't know what to say. I don't want to burst your bubble or have you thinking of things you can well do without but I also want you know what you are dealing with so you can receive the best treatment for your baby so here goes...

PSC is an EIM (Extra Intestinal Manifestation) of IBD that runs a separate course to that of the inflammation in the bowel. So regardless of what is happening with the UC the PSC will run it's own race. If your girl has PSC then it is a liver specialist she will need to see for its ongoing monitoring and management.

Wishing you all the luck in the world Mum and sending healing thoughts your way...:heart:

Thinking of you, :hug:

Dusty. xxx
 
Sorry to hear about the latest diagnosis! I truly hope they manage to get everything under control. I am sending you loads of healing thoughts - dealing with this must be very stressful. I hope they get the best possible treatment for her!
 
I am so very sorry to hear of Ellie's diagnosis! I am praying and hoping for Ellie and your family! :ghug: :ghug:
 
I am sorry that your family is facing such difficulties. I know you have been frustrated at times getting good care for your daughter.

Here is a link to a Pediatric PSC clinical trial

http://www.clinicaltrials.gov/ct2/show/NCT01088607

You may want to contact the two centers closest to you - UC Denver and Phoenix Children's Hospital - to see if she meets criteria for a screening visit. If so be sure to ask if they will reimburse you for the cost to come for a screening visit as studies like this often offer reimbursement.

UC Denver in particular is a leading research center in PSC both pediatric and adult and have pioneered some non-invasive techniques for assessing liver function/damage.

Even if you do not go forward with the clinical trial you will get expert review of your daughter's case, treatment recommendations and a resource for future consultations should that be needed.

Best wishes
 
:ghug:Your daughter and family are in my thoughts. please keep us updated.:ghug:
 
So so sorry! This disease is completely frustrating! I hope you find some answers very soon!

Hugs and prayers!
 
I am so sorry for what your daughter and family are dealing with...I just wanted to let you know that your family is in my thoughts and prayers...sending healing vibes your way. Kim
 
I'm very sorry about Ellie's PSC diagnosis. Please read this article:

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

I have a friend whose daughter was diagnosed with psc and then uc at age 4. By age 11 she had been on and failed every med and had been on steroids and in and out of hospital for years. She was about to have a colectomy but after reading this she contacted the Dr (Dr Cox) in the article. He is happy to speak to parents and does so regularly, as well as work with GIs around the world. He does not charge and if you contact his office he will call you back for free. ALL of the children who have been treated with vanco with psc/uc have gone into remission (both diseases). I don't want to give you any false hope but I've spoken to this Dr myself and he was very honest and kind. My friend's daughter has been in remission for a year now, the first time ever (both diseases). If you want to PM me, I can put you in touch with her and she can share her experiences with you.
 
I know Dex hasn't been around in awhile but EJ's Crohn's is well controlled by Humira and he's on a beta-blocker (I think) to control bp to help the PSC. He's really doing great.

That said, you've got A LOT going on. I can really appreciate the multi-dx challenges. Take it one day at a time.....

J.
 
From the very bottom of my heart thank you to everyone who has sent well wishes and prayers our way. Over the past few days we've been up and then we've been down. I think now that the initial shock is wearing off I'm just angry. When we were at Children's Hospital in GA we went to a Halloween party they were having for all the kids and each one of them had a severe or life threatening illness. I just can't get their sweet precious faces out of my head. I'm so mad that kids, our kids, your kids, my kids, any kid! has to deal with sickness and illness. It's not fair. I know anyone of us would trade places with our children if it meant they would never have to hurt or suffer or taken one more pill. Why can't we?!?!?!? Science has learned how to clone a sheep for goodness sake, why can't we heal our kids?????

I know that in time we will come to terms with our "new normal". Our faith is huge and we believe that God's hand is guiding us. Thank you again for all the support. The kindness of strangers is always humbling.

I just reread my message. I promise no more crazy rants for awhile.
 
Hugs to you both. :hug:

I know what you mean about seeing "other" kids worse then ours. I saw my twin for the fist time in weeks. Her son, my nephew was dx with Epilepsy and a rare kind at that (Our family is talented:(). He looked at me and repeated the same thing for ever.:( My twin just bowed her head and sighed. :confused2:She found out today that the want her back down to Mott's Hosp. with her son again for another stay. She just got home with him from a two week stay. Things like this make me want to cry. But your right I also hold to my faith very deeply, And I won't change that for any!!!
 
I am with you sister; praying for your precious daughter and all our beautiful kids. :tear:
God bless, xxoo
 
Hi NMMom, as mentioned by others here, my son too has PSC with crohns. Reading your post has brought me back to those same feelings I had when we first learned of his dx. That sinking feeling known all too well by all the parents here!!

I haven't been here for quite a while and I'm sorry to have missed this early on. I don't know that I could be much help other than being an understanding (too much so) shoulder to cry on.

EJ, my son, is coming on 3 years dx with psc and has just passed 3 yrs dx with crohns. Of the two, it's the crohns that causes the most immediate concerns but the psc is always in the back of my mind.

I see Dusty linked you to the Vanco discussion. It is not a possibility for EJ because his psc has already caused fibrosis.

The best advice I could give is find a dedicated liver specialist for Ellie. I hope your mind is in a better place by now. I remember the hopelessness this dx caused for us early on. Take heart in their youth. There's a great deal of medical history yet to be made.

Hope to meet you soon:)
 
Hi nmmom, sending hugs and i will be praying for your little Ellie and your family. I'm so sad to hear of your news.
Sharon
 
Wanted to see how you guys are doing?
Dexky,
I read that vanco can be shown to help even in cases that are more advanced where they did not think it would help. Maybe you can get a second opinion about it.
 
So sorry to hear about what you're going through. I totally can relate to how you're feeling. Not long ago I was on these boards researching PSC because my son (severe UC) had rising liver enzymes and they continued despite reductions in his meds. Currently the numbers are normal again after stopping 6mp, however, for many months we were aware that should the meds not be the cause, then PSC was the next possible diagnosis. I was terrified and extremely stressed at the mere possibility so I kNow how you must be feeling. Although I've seen it described as rare, I recall in my research that somewhere I read that PSC exists in 5% of UC cases. That doesn't seem rare to me; unlikely, but not rare. Best of luck to you and I hope that things improve for you guys. I am often soothed by the knowledge that this disease has seen significant medicine breakthroughs and I'm told many more are on the horizon....so keep your head up! You'll never eliminate your fear and worry, but try to remind yourself that your child needs you to be strong and at the top of your game...sometimes that brings me back from despair.
 
No.....we stopped the 6mp completely and the liver numbers went back to normal...so I'm assuming biopsies are unnecessary? i was told biopsies are risky and only done if necessary...?? Anyways, so far, his labs are back to normal even without the 6mp...he's on his max dose of pentasa only....
 
To clarify,it appears that the 6mp was always the cause of his liver issues. His Prometheus numbers also were above the line suggesting he was a candidate for 6mp related liver issues....I think the line is 5700.....he was at 5900
 
Rowan was diagnosed with this as well at her last admission. We are currently seeking a second opinion in Cincy. Possibly enrolling in the vancomyacin drug trial at Stanford. Rowan currently has good liver numbers and enzymes. It was found on accident while looking for Crohns on her last admittance due to high fever. She had the itchiness and fever with night sweats. Very scary disease. Sucks that we cannot seem to catch a break. I am going to have her jpouch removed and go with an end ileostomy.
 
Hi NMMom,
My name is Julie and my daughter has also been diagnosed with Crohns a year ago and now PSC/AIH cross over syndrome after a liver biopsy 2 weeks ago. She is 9. So sorry this is also your story but would love to speak with you. We are yet to decided what to do. Her liver specialist wants her on Imuran and Prednisone but hasn't suggested we try Vancomycin. We sent him the article DustKat kindly sent us. It seems like it may be a glimmer of hope in this dark journey. I pray Ellie is doing well and that all meds are working for her. I guess we are at the same stage you were at when diagnosed. Thinking over and over "but why her" and hoping for some positive news. Thanks Julie
 
Julie,
So sorry to hear your news. Sending you a hug and prayers. I hope the medications really help and only good news is heard.
 
JulieB, NMMom doesn't come on here as often. She is on FB more I think. I reach her there in the Parents of Kids with IBD Group. Also I don't know if you have been pointed in this direction yet but PSC Partners Seeking Cure page and FB group has been a god send. FYI though if you join the FB group you have to look in your messages from someone you don't know, in order to get approved. It is in the "other" messages folder. Hope that makes sense to you. Sorry to here about the new diagnosis. I hope you can find some better support as we are in Dx purgatory now. Between CD and UC, then they said she had PSC and the two biopsies were normal so now it is considered a biliary stricture awaiting MRCP. Sucks but I am not living in "Realville" right now about it anymore. You will drive yourself crazy. I do know if you want to talk directly to Dr. Cox at Standford he will do a phone consult. I would call and see what he has to say. I got zero support about the Vanco in Cincinnati and appears until the clinical trials are over no one is convinced according to the Hepatologist we saw.
 

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