In June last year my eldest daughter Lacey became jaundice, I took her to the GPs who contacted the local hospital and they said to take her straight in. So I did. We spent an awful night at the hospital with them running test after test on her and getting no straight answers. What we didn't know was that the local hospital was in touch with the specialists at Kings College until 2pm when we were told she was being transferred up there. We had no time to take it in it all happened so fast. When we arrived at Kings Lacey was given her own room which she thought was fantastic it beat the ward she had been on. The doctor that was there to meet us apologized for the sudden transfer but decided it was best for Lacey to be somewhere where she could be looked after properly, and from the results they have from her blood tests from the local hospital he was pretty sure that the tests he wanted to run would show she had Autoimmune Liver Disease. She spent 5 days at Kings on steroids to suppress her immune system, vitamin K to help with her blood clotting, she had a scan which showed her spleen was enlarged and she started getting purple spider veins showing up on her hands, she also started to bruise really easily. It was a constant time of stress and worry and I think the worst part for me was there was nothing I could do apart from let the Doctors do their job. Lacey was discharged from Kings on the 4th of July (I do have to say that the staff at Kings were a massive help and explained everything to myself and Lacey) they set up a shared care with my GP so Lacey could have her bloods done there and the results were faxed to the Specialist Nurses back at Kings, which meant we didn’t have to travel to and from Kings weekly for blood tests. The worst part for Lacey was being so tired all the time that she couldn't go back to school. What with blood tests changes in medication more immune suppressants being added the liver biopsy the weight gain due to the steroids she wasn’t a very happy 14 year old. In September last year she started doing half days at school minus PE due to her spleen being enlarged and the dangers that can cause in itself. Luckily for Lacey she has a fantastic group of friends and a really supportive network at school and 3 younger siblings who adore her and can’t do enough for her. And I also know that the staff from CLDF have been a massive support for her. She was doing ok in school but missing rather a lot of lessons. After all the blood tests and changes in her medication finally things started to look up she also lost all the weight she’d put on. In January she started doing full days at school and caught up in the lessons she missed. In April Lacey had another scan which showed her spleen was 2 cms smaller than the last time it was measured but the bile ducts in her liver were enlarged so that meant more medication. Lacey has regular blood tests, takes a lot of medication, still gets very tired and turns a shade of yellow when she's over done it, but she's also one of those kids that just won’t quit.She also knows theres a chance she may need a transplant but refuses to worry about it unless it happens. Lacey can tell you all about her condition, the medication she's on and what it does. She's back in school on Wednesday to start her final year is also a Prefect and is really looking forward to taking her GCSEs. She has also applied to the local college in the hope she can do the courses she wants. No one knows what the future holds but Lacey takes each day as it comes.
Lacey was diagnosed with Autoimmune L... - Children's Liver ...
Lacey was diagnosed with Autoimmune Liver Disease last year.
Hi,
This sounds very much like my diagnosis process and recovery. (take a look at my blog 13 years later...) I am 26 and was diagnosed when I was 13. I have AIH, an exceptionally enlarged spleen (the ultra sounders are always shocked when they take a peek), liver cirrhosis, and a whole host of other bits and pieces that come from having AIH. I have been a bit of a difficult patient as I have reacted badly to most of the immuno-suppressants and this has caused flares. I still visit my consultant every 6 weeks for monitoring. Having said this, whilst I found my swim training regime too much, I continued to sail, learned to ski and took on a whole load of things with determination to prove that my AIH wasn't going to get in the way. I always do this with a bit more care than most but I still do it and it seems your Lacey has the same determination and fighting spirit- Good on her and keep encouraging it. I recommend getting a medic-alert necklace or bracelet- you can get some that are really pretty but it has contact info etc.
If you have anything you want to chat about or ask me- please feel free. There is so much more to say than I can ramble on about here. Also, if Lacey wants to chat to someone who has been there and done it I'm here! Friends can be very supportive but they don't always understand that this is a lifelong condition. Once the meds kick in and you can pretty much live a normal life, people tend to forget that underneath it all you are actually quite poorly.
All the best to you, Lacey and your family
Jenni x
This is exactly the experience my daughter had last August, although our specialist is St James, Leeds. They were and are still fantastic and one year on the story is so different from the shock horror of last year.
We have just come back from a 3 monthly appointment today, liver showing normal from ultrasound, varices under control/gone showing from endoscopy - AIH behaving itself. Awaiting blood results, last time white cells none too happy, but this is only to be expected from the aza. If they are good then looking like more tablets can be reduced down - yipee.
Just started a L3 Art & Design course, travelling a bit of bummer for her getting up so early, but hey ho!
Elle is just like you guys, so I have AIH I still need to live my life and yes Jenni you are right it is really hard for others to understand properly.
Onwards and upwards :0) :0)
Wow what a special little child you have ..its not easy to be positive when faced with AIH but your Lacey seems to be very brave and dealing with it best she can. My eldest son was diagnosed with AIH at 16 and did struggle to come to terms with it. It has taken him 4 years to really accept what he has but leads a normal life (apart from his pills) and enjoyes travelling and working abroad. He still has to have 6 month check ups which he hates going to but realises that he only leads a normal life due to the expertise of the doctors treating him. Its good too that your daughter has understanding friends and the support and love of her family. Its with that love and support that I am sure Lacey will cope and continue to be a success in the future. Wish you and your family well and good luck in the future for Lacey. 
Hi, My daughter, Vanessa was diagnosed with Autoimmune some 21 years ago when she was 3 with all the same symptoms you have outlined and at the time they did not know what the outcome would be but 21 years later she has gone back-packing around the world - even though her GP was against it, the doctors at Kings gave her enough medication for 8 months and told her to go and enjoy! Unfortunately this year she was diagnosed with lupus which is another autoimmune which affects her nerve ends and it did affect her kidneys which she had to be hospitalised for two weeks. She gets very tired but lives life to the full. That's is all we wish for our children to live their lives to the full and hope and pray that it is a long life.
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