15-yr-old “Ellie” is AIH FREE! No more IMURAN! This Northeast teen athlete didn’t want her identity known…but the girl in this picture could be her. She’s like many teenage girls, smart, athletic and beautiful. But she had AIH, and the best doctors in her area told her Mom “she’d have to be on meds forever!”.
But mom, “Mary” (a pseudonym) couldn’t accept that her daughters life would be filled with drugs …or worse. After 1 year of counselling this family,…”Ellie” is healthy and off MEDS! “Mary” was tough to convince, but her tenacity and mother’s intuition kept her on track. Here’s Ellie’s story told by her mom, Mary. Get your tissues out…and know that everyone benefits from the right diet and proper vitamins!
A year ago our lives changed forever. Out of nowhere, my seemingly healthy, full of life, athletic, smart 15 year old daughter, Ellie, was diagnosed with Autoimmune Hepatitis. Besides feeling full, even if she didn’t eat that much, and feeling like she had “heavy legs” when she played sports, there were no real symptoms to this disease to warn that it was coming. Her pediatrician ran some blood work and Ellie’s liver levels came back in the 300s.
After a few weeks of the numbers not coming down, an ultrasound was ordered. When you get a call from the radiologist on a Sunday night, you know something is terribly wrong. Her liver and spleen were inflamed, and there was fluid in her abdomen. The next day we went to see a liver specialist. In less than 5 minutes of reviewing her labs and ultrasound, he turned to me and told my daughter had Autoimmune Hepatitis, and would need a liver biopsy immediately to see how bad the damage was to her liver. We looked at him blankly and said, WHAT ARE YOU TALKING ABOUT? AND HOW COULD THIS HAPPEN TO MY CHILD? This child was so well taken care of. We never missed a doctor’s appointment or were late for any vaccines. He then explained what AIH was. He believed that there was no real explanation as to how or why this happened to her, and how rare it was. The parental shell shock continued but somehow my daughter remained stronger than both of her parents.
Ellie went in for a liver biopsy and it came back stage 3/4. The doctor explained this was considerable liver damage and that we were lucky we found it when we did or a liver transplant would likely be in her future. Again, WHAT ARE YOU TALKING ABOUT? AND HOW COULD THIS HAPPEN TO MY CHILD? The shell shock continued. He put her on high doses of Prednisone (40 mg) and eventually Azathioprine (100 mg). I knew these drugs were saving her life but long term it was going to be a problem. The Prednisone was horrible- causing fast weight gain, fullness to the face, mood swings, anger, tears for no reason, brain fog. The Azathioprine- she was to be on this drug for 3 years and possible for life. He cautioned me about the potential side effects. All I could think is- we are going to cure liver disease and could possibly end up with cancer because of this drug! No way, not my kid.
The search began. How are others dealing with disease? I immediately found Curing Courtney and ordered the book. I couldn’t read it fast enough, sobbing the whole way through. YES there was another way to handle this disease. If this worked for Courtney then maybe it will work for Ellie. WHY WOULDNT EVERYONE TRY THIS?
I contacted Denise and everything changed that day. I listened to everything she said- eat organic, grass-fed meat, no gluten, no dairy, keep stress low, be happy, take the vitamins. I read everything she told me too- Wheat Belly, everything I could find about Dr. Berkson and Alpha Lipoic Acid, gut health, GMOs, etc. I loved that she said keep reading and educating yourself. This was the exact opposite of what the liver specialist told us. He said, do yourself a favor and do not go on the internet and read those personal stories. It will drive you crazy with worry. Just take the medication. Also, when I asked him about diet/ vitamins, he said no special diet just try and eat healthy, and vitamins have never been proven to work.
And so with Denise’s help, we began with the diet and vitamins (while we took all the Pred and Aza). While we thought we were eating healthy in the past, clearly we weren’t. Organic, no gluten, no dairy. It wasn’t easy, especially for a teenager. For the most part, Ellie was on board and sort of understood the science behind what she was doing. Of course, she is a teen and on some days was angry because she couldn’t eat the garbage most kids eat at that age. Over the next few months, I pushed the doctor hard to get her off the dreaded pred as fast as possible, and he complied for the most part. No more Pred after about 6 months. Every month her number were getting better or at least maintaining. We were always wondering is the diet/ vitamins working? How is this going to go when we get off the drugs?
After 7 months on Aza, Ellie’s hair was falling out. Her white blood count and platelets had dropped low. It was alarming. How will this child fight basic illness never mind diseases? I call the doctor. He was not particularly concerned- just a side effect of the Aza. Well, I was concerned! By some miracle, he allowed me to reduce the Aza to 75 mg. We continued on with the diet and vitamins and did routine blood work. Somehow, the liver levels maintained or went lower even with less Aza! What is going on here?
We then began reducing the Aza little by little. Over the next few months, Ellie’s levels fluctuated a little depending upon her stress at school and whether she was sick with a cold (which took forever to get rid of, thank you Aza). Eventually, it was time to make THAT decision- no more Aza. Probably one of the hardest decisions we ever had to make as parents- there was no way to truly know if this is working unless you do it. Denise was confident and reassuring. “Her body is strong and can handle it, we will watch the blood work, we will adjust the vitamins accordingly.” Her words went through my head daily. It has now been two months with NO medication and her numbers are normal and better than ever. Time will tell how the rest goes but we are confident we made the right decision for Ellie. She is a tough kid and is taking this disease on naturally one day at time without those meds, which initially saved her life, but cause horrible side effects.
Denise, we cannot thank you enough for your never ending support. This last year has been difficult for all of us but your support over this period was invaluable. There were times over the last few months when we doubted ourselves and this decision, but your encouragement helped us stay the course and we are forever grateful for that. There is no way we could have done this without you. You are our angel.
I’m so proud of these parents, … they did their homework and made intelligent and holistic decisions which saved their daughter’s life! BRAVO Mary & Ellie…and Dad.