Sadia’s Story with PFIC 2
Sadia’s Story with PFIC 2
My son was twenty days old when I noticed something was wrong with him. He was very fussy and would cry a lot without any reason. He would poop ten to twelve times a day and poop was oily. We visited a lot of doctors that thought he had colic issues. When he was five months he got jaundice. We visit gastroenterologist who told us he might have pfic 1 or 2. Unfortunately, Pakistan has no facility for genetic testing so for six months, we were very worried. Then Emily Ventura helped us find a way to get genetic testing and at one year old we confirmed our son had pfic 2.
From the first symptom until now we don’t have proper medication in whole of our country like cholestramine and neltraxon. We have to travel five hours to visit our liver doctor and use treatment is also very expensive.
Hardest part of pfic is the itching. I hate to see my son in so much discomfort that he even can’t sleep at night. It’s also heartbreaking to see him get taunted for itching so bad.
A lot of things like experience of people from pfic Facebook group helped me to tackle itching and one member of the group from India told me about an herbal medicine that helped a lot. My son has been using it since one and half month and itching is considerably less, his health improved and his appetite increased, I would suggest to all pfic parents to talk with other parents who have experienced this disease. They help a lot.
Keep your kids cool as itching becomes worse in hot conditions and herbal medicine that is proved good for my son until now after 3 months labs will be conducted and I will post a review of that medicine