Our daughter Paysen was born in November 2010. For 6 years we believed our girl was completely healthy. She was always energetic and happy. Just a normal, smart, seemingly healthy little girl.
When she was in Kindergarten, I was taking her to school and she mentioned that her neck hurt. I thought nothing much about it. I just thought maybe she slept on it wrong and it would feel better in a couple of days. That afternoon, I received a call from her teacher who left me a voicemail saying that Paysen had complained of neck pain. She looked and saw a huge knot on her neck. When I picked her up from school, I took her straight to the doctor. The nurse practitioner examined her and said she believed it was an enlarged lymph node. She believed she has some molars breaking through and that was probably the cause, but just to be certain it isn’t anything serious, she did some blood work.
Her liver enzymes came back elevated. The nurse practitioner wanted Paysen to see a pediatric gastroenterologist. So for about a year, we did blood work about every three months to see if her liver enzymes would ever go down on their own. Well, they did. So we were satisfied and decided we would come back in about 6 months for more labs.
I didn’t think much more about it, until one day I just got this gut feeling that I needed to take her for blood work again. It had probably been 5-6 months, but my feeling just wasn’t good. Her liver enzymes were elevated again.
We were back at the gastro doctor trying to decided what needed to be done to see what was going on. She scheduled an ultrasound, an echo-bubble, and a liver biopsy. The ultra sound was normal, the echo was good, but the biopsy showed scarring and inflammation. Her wonderful doctor decided it was time for a visit to Cincinnati Children’s Hospital. She believed we were looking at a case of Autoimmune Hepatitis, but it just wasn’t so cut and dry.
So off we went to see another wonderful doctor and do more tests. He confirmed the diagnosis of Autoimmune Hepatitis and we began treatment. By this time, our daughter was 7 years old.
During all this time between doctor appointments and lab work, my husband and I began researching the disease and treatment options. From what we read and from what the specialists told us, this is a silent disease in the beginning. Most of the time in children, this goes undetected because they just don’t routinely check liver enzymes in children. Therefore, the disease goes unnoticed until the child is 12-13 years old and by then the disease is so advanced that they are in liver failure and need a liver transplant. We are extremely blessed by God to have found out so early!
She has been on her medicine for a year and hasn’t been sick once! Oh and did mention, since we began treatment, her bloodwork has been normal! Her doctor is so pleased, and said at our last visit that she may be in remission by the age of 10! Had we not known about this, by age 10, we would be telling a completely different story. We are praying that she will never have to face a liver transplant, and that she will live a full and happy life!
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