Resources for Families

Welcome to the resources for families page. This page was developed BY PATIENTS AND FAMILIES, FOR PATIENTS AND FAMILIES.

PFIC is a very rare disease, and because of that there are a lot of questions but not a whole lot of answers. Though we are working hard to find solutions, uncertainty is a harsh reality for patients and families with PFIC. We have pooled together our resources including countless years of trial and error, internet research, hospital provided resources and parent provided resources. We may not be able to answer everything, but we sure have tried over the years.

We want this list to grow. If you have a questions, answer, or resource that you would like to share on this list of resources, please contact us and we will be happy to make any additions.

Rare But Mighty. Itching for a Cure. We are all in this together.

Frequently Asked Questions

Are there any support groups that I can connect with as a patient or family member of PFIC?

  • Facebook (please note, this support group is for patients and families only)
    • “BRIC, PFIC and other Rare Diseases”
      • A private group for patients, friends and families only (healthcare professionals and industry professionals are not permitted into the closed facebook group)
      • This is the main PFIC support group
    • PFIC, BRIC Australia and New Zealand
    • Teens and Young Adults Living with PFIC, BRIC and other Rare Diseases
    • Liver Families-UK

Are there any ways that I can provide peer support to families in need?

  • We have created a list of Peer Support Programs that so that we can provide a way to reach others in need. You can send a care package to a friend in the hospital, become a mentor for a new patient or a patient in need, or find a friend for your or your child who can directly relate. Check out all of our peer support programs here
  • Make A Wish Foundation
    • Patients with a diagnosis of PFIC can be candidates to receives wishes through the Make a Wish Foundation

 

Are there any financial resources available?

  • PFIC Network patient financial assistance fund-view program
  • Some local rare disease organizations have financial assistance funds or respite funds, see list in the “other organizations” tab, here’s a few we know of
    • https://rarediseases.org/for-patients-and-families/information-resources/patient-and-caregiver-resource-center/
  • Doctors can write prior authorizations if they are not in network providers with your insurance companies. Ask your specialist’s team about this if you are having trouble getting medical bills covered by insurance.
  • Ronald McDonald House
  • COTA.org
    • US resource for fundraising assistance for transplant related costs
  • Crowdfunding (ways to setup personal fundraising pages for medical related costs)
    • Go Fund Me
    • Give Send Go (no admin fee)
  • Canada Specific
    • David Foster Foundation – Canadian transplant specific funding. They will fund things such as hotels/apartments, parking, mortgage payments and travel expenses etc.
    • At Home Program – Available in the province of BC – They provide financial help for travel, accommodations and tube feeding supplies (vitamins, syringes, physio etc.)

Are there any Scholarships Available for patients or families with PFIC?

Other than medication/surgeries, what kinds of things helped you or your child with the itch?

 

  • Cooling lotions
  • Back Scratcher
  • Brush for scratching
  • Trying to distract your child with play
  • See a star, stop the itch (thought stopping)
  • Ice packs, cold wet rags
  • Cool bath
  • Ice pack in diaper bag on the go

 

How do you help your infant/baby to stop scratching themselves and breaking the skin?

 

  • Full footed pajamas (bamboo material when it’s hot and they still need to be fully covered)
  • Scratch mittens
  • Sleep sack (if they figure out how to take it off you can put it in backwards to make it more difficult to get to the zipper)
  • Scratch-Me-Nots (scratch mittens that are full sleeves for if your baby figures out how to take off regular mittens)
  • Older child: fake (acryllic nails)
  • Sit outside and look at the stars!

What is an ostomy?

  • In patient’s with PFIC, a surgery called Partial External Biliary Diversion can be performed
  • PEBD involves sewing a small piece of intestine between the gallbladder and a hole in the abdominal wall, called an ostomy. This ostomy allows contents within the segment of intestine to drain externally, typically into a small bag that is secured on the outside of belly. Approximately 30-50% of the bile drains out the ostomy

 

Are there any resources available for ostomy patients?

  • unitedostomy.org (UOAA)
    • This resource is for ostomies in general. Typical ostomies are created to drain urine or stool. Though the type of ostomy for a patient with PFIC is different,  the physical appearance, supplies, and management are the same.
  • A family story of Cade, a PFIC boy with an ostomy. A message from Cade’s mother

 

Are there any other organizations that provide information or resources for PFIC families?

  •  USA
    • American Liver Foundation
    • National Organization of Rare Disease (NORD)
    • GI Kids
    • Children Network

I am not in the US. Are there any rare disease organizations in my country that support PFIC or rare diseases?

  •  UK
    • Childrens Liver Disease Foundation (CLDF)
  • Australia
    • Rare Voices Australia
    • Liver Kids Australia
  • Canada
    • Canadian Organization for Rare Disease (CORD)
    • Canadian Liver Foundation
  • India
    • Organization for Rare Disease India (https://ordindia.in/)

Anything to try and boost morale for a child’s hospital stays?

  • Put in a request for a Care Package from our ambassadors. We can send a gift right to the hospital!
  • For children, try to make the room feel like home. Hang pictures, artwork, wear normal clothes if possible. New and special slippers were always a thing for us.

  • Check out Brave Gowns for children, great for transplant children who will be in the hospital for a longer period of time!
    • https://www.bravegowns.com/collections/brave-gowns
  • Allow your child (or yourself!) to be a part of the decision making process. “Would you like to try your medicine with applesauce or pudding?” can sometimes go a long way for a child who does not want to take meds.
  • Take advantage of your hospitals child life specialist, they are definitely an underused resource.

How Should I prepare for a longer hospital admission?

  •  Bring Crocs or slippers
  •  Ask about in-hospital laundry facilities for families (bring unscented detergent)
  •  Bring fave pillow and blanket, stuffed animal
  •  Bring a bin of activities (books, games, toys) that can be wiped down
  •  Get involved with child life programming (ask what they can offer)
  •  Ask about long stay parking rate reductions
  • Ask about services for families that the hospital may provide, such as shuttle service or grocery service

 

Any ideas for frequent blood draws and IV’s?

  • Make sure that the person drawing blood puts the tourniquet OVER a sleeve or clothing (a towel works too). A tourniquet that pinches the skin sometimes hurts worse than the blood draw!
  • Numbing
    • Ask your nurse if they can use “J-Tip”. Not all hospitals have this available, but if so it is an available resource to numb the area first before sticks. Just a heads up, it’s a loud noise in a slight pressure, so it can also be a bit scary for a little one the first time they use it.
    • There are also creams that are sometimes available to numb the area. This requires planning, as the creams usually take 15-30 minutes before they will work
    • Some people use ice to numb the area. Just make sure that you are not doing this over small veins, as ice can actually constrict a vein and make it more difficult to give blood.

 

 

 

 

My child does not want to take meds, an ideas?

  • If old enough, can try transitioning meds to pill form. You can then crush the pills and give with a bit of applesauce, pudding, etc.
  • Ask a pharmacist! Pharmacists are a tremendous resource
    • Can this medicine be made into liquid and mixed with juice?
    • Is there a compound form of this med?
    • Is there a program or coupon to make this med cheaper?

Are there any ways to make medications more affordable?

  • Some medications, particularly compound medications, can be very expensive. Ask your doctor or pharmacist if a medications can be changed to pill form to save money.