Children's Liver Disease Foundation
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Autoimmune Hepatitis

Hi, my 12 year old son is going for tests for Autoimmune Hepatitis, I’m looking for people who have had positive treatments for this disease.

I stupidly read to much on the internet and have frightened myself.

What can I do while we wait for a diagnosis?

Supplements? Alternative therapy?

Thanks in advance

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Hi. My daughter is also 12 and was confirmed to have AIH Type 2 last August. Her ALT and AST weren't drastically high, never above 150 but were steadily increasing. She had to have a biopsy which confirmed the diagnosis and the fact she had severe fibrosis of the liver. Her symptoms of general weakness and fatigue started in May 2016. She was prescribed Prednisolone in August and then Azathioprine in September that has already brought her levels back to the normal range. The negative though is the very immediate weight gain which on top of everything else is a lot for them to deal with. Unfortunately, supplements and alternative therapy cannot guarantee anything and we have to be grateful for modern medicine. It is a scary time. My email is ellenderwildey@gmail.com, please contact me and I will be happy to let you know more about our experience.

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Thank you for getting in touch, and if it’s ok with you I will email, at some point.

Did they test your daughter for Wilson Disease as well, as that is what they are doing with Aubrey first.

Kind regards

Sophie

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Hi Sophie,

Yes, she was tested for Wilson's disease at the same time as she was admitted for the liver biopsy. She had to take medication and collect her urine for 24 hrs which they then test. (Wilson's disease is easily treated once diagnosed.) We expected her AIH Type 2 to be confirmed as she had 'liver kidney microsomal antibodies' present in her blood tests.

Warm regards,

Ellender

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Yes I think they mentioned something about antibodies in his bloods, all quite low levels I believe.

Which hospital are you under?

Sorry to bombard you with questions, I’m finding the whole situation a bit serial.

Is your daughter living a relatively normal life?

Is she at school? Is she able to take part in sport?

Thank you for your time, I’m sure you have a million things to do.

Kind regards

Sophie

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I'd be happier giving you all the answers via email! You can bombard me with as many questions as you like!

Thanks,

Ellender

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Hi Sophie,

My daughter doesn't like me to discuss her condition on this site which is why email is better. It may help you to hear our journey so far, which can be difficult at times for all of us. There are plenty of challenges for a 12 year old to face at the best of times!

Be strong,

Ellender

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Thank you, I’m not sure I’m ready to hear all the ups and downs, just yet.

I need to be a bit stronger in my own head.

I will be in touch, when we finally get his diagnosis confirmed.

Which seems to be taking a while.

Thank you for your kindness and I will be In touch.

Sending love to your daughter I hope she’s doing well.

Kind regards

Sophie

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Hi Sophie,

We attended Birmingham children's hospital. Don't be afraid to hassle your doctor or paediatrician to get a more urgent appointment. I used to phone the consultant's secretary to get somewhere. If it is AIH then the sooner the diagnosis, the better the outcome. I'm here when you need me.

Good luck,

Ellender.x

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Hi, my daughter diagnosed 4 years ago type 1 Aih (ama and Ana auto anibodies), It has been a very long 4 years and she was off school for 2 terms then only went back part time. She is 18 now and successfully completed a year at agricultural college. She found working full time with her horses too much and got very run down so has had a change of career now although she still rides. It is a terrifying journey at times and also very anxious. She had ALTs and ALP's near the 3000's and Bilirubin at over 900 to start with but soon stabilized on pred and aza. Now she is off all meds (against advice from BCH) and has remained stable for 18 months the now! I think is parents worry more than the children, my daughter loves a normal life as a stroppy teen 😀

There is a fb site called Liver mums that is great for support also.

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Thank you for sharing. I’m glad your daughter is doing well, does she follow a specific diet to help maintain her levels?

My boy is a sports man, and I’m hoping that he can continue to play, but his legs are aching all the time. I’m just hoping for a speedy diagnosis, the waiting is so painful.

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She is also very active and does suffer with achy knees, back and wrists. Also fatigue is sometimes bad. She follows no special diet ....She doesn't live at home anymore .lives on McDonald's, energy drinks and does everything she shouldnt!! Typical head strong 18year old- doesn't help my anxiety levels!

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Oh my goodness, yes I can imagine that the anxiety levels are quite high.

I’m trying really hard to keep my self level but sending him back to school today was hard.

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My advice is wait, my is 9 and was diagnosed at age 7 with possible AIH, after the first year, worse of my life things started to calm, he takes azathioprine everyday and his liver number are in the normal range. He isn't cure! He still have enlarge spleen, portal hypertension, his platelets keeps going down slowly but some how he keeps going, he takes tennis lessons golf lesson guitar, I give him all my love and prayers and some how we are still breathing calmly and I am thankful for that, hope this helps you to have hope❤

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Thank you that’s really helpful, may he continue to be fit and well. X

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My son I missed to write

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Aubrey had his biopsy at Kings hospital last Wednesday, he is a little saw but doing well.

He’s a bit bummed out that he has to miss a week from football.

Being in the hospital for 3 day with all the children who were younger and more poorly really helped me to put things in to perspective, today Aubrey if fit and happy tomorrow is unknowable.

Hope everyone else is doing well. X

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