Autoimmune hepatitis

[Matilda2007]

Hi I'm the mother of a 9yr old girl who has recently been diagnosed with autoimmune hepatitis. I feel really scared at the moment and I'm finding it hard to come to terms with. I was hoping to chat with other parents/careers in similar circumstances for advice and hopefully reassurance.

[mormer]

hi. my daughter too was 9 yr old when diagnosed. she is now 15 and is doing okay. its been a long road but her Aih has remained stable with medication. Feel free to ask any questions you have. I'm always here to support you and your daughter. Take care both you. Jacqui x

[Matilda2007 in reply to mormer]

Hi thank you so much for your response. We only found out the diagnosis in August so it's all very new to us and has been such a shock.

Matilda was started on 40mg of predisolone which for the first 3 weeks seemed to respond to really well (her alt went from 1300 to 362) but now it seems to be on the rise again 😞 at 906. They have prescribed an additional drug today azathiophine which she will need to take. How long did it take for your daughters bloods to settle? Wendy x

[mormer in reply to Matilda2007]

hi Wendy, everyone responds differently, but in my daughters case , the side effects of the Pred were just too much and she was changed to Budesonide, which she tolerated better. She was also started on Aza but again this was changed to Cellcept as she already had low white cell counts ( a Tpmt test is done to check if Aza can be tolerated ). Hopefully for your daughter the Aza may help with lowering her Alt. I will send you a private message if you want to discuss further. X Jacqui x

[Matilda2007 in reply to mormer]

Ah right ok. I suppose it's just trying to find what each individual responds to and suits the best when it comes to the medication. Yes private message would be great. Do you need my mobile/email??

[Bocoop]

Hi

I have a 14 years old boy who was diagnosed in June 2017. I'm in the same position as you and don't really know what the furure holds so I'm probably not going to be much help! I am however starting this journey at a similar time to you which may turn out to be useful ☺

My sons levels were coming down nicely with pred which was started at 40 mg and then reduced gradually to 10mg. He was given az about 3 weeks ago and now his levels are starting to rise again. Am not sure if this helps but sometimes reassuring to know others in the same boat!

My son has the added complication of being Type 1 diabetic since he was 6.

I hope your daughter manages to stabilise her levels soon and feel free to ask anything.

[Matilda2007 in reply to Bocoop]

Hi thanks for your reply. It's interesting to read re your sons meds and yes reassuring that others in the same boat. Sorry to hear that he's got the added complication of diabetes.

Is he under the care of Leeds. We are back there on Monday to have more bloods and to discuss her biopsy in more detail. Praying that the Az has started to take effect....

Hoping that your sons bloods settle again soon too x

[Bocoop]

Hi

Hope everything goes well at Leeds. We aren't under one of the 'big 3'. We live in Cornwall and are under the care of Bristol. The consultant there used to work at Birmingham.

My son's levels did start to increase after the az but the consultant said it probably hasn't had time to work yet (been on it for 3 weeks ) so try not to be disappointed if it takes a little while.

From my limited knowledge I think it's just a case of juggling the meds until they find the amount that works . Then once they have it under control I'm hoping they just keeps them steady.

We're taking one step at a time. Good luck. Keep in touch how it goes x

[Matilda2007]

Thanks for your message. Yes we'll just have to wait and see how she goes. We've prepared ourselves for a 'rocky road' ahead but hopefully will get there. It's nice to know we can keep in touch and support each other (long distance 😉). Take care xx

[Blackadder1]

Hi it is a rocky road emotionally, watching and waiting...

My daughter is nearly 18 now and 3years post diagnosis(type 1aih)

She had alt and alp in the 3000+ when first diagnosed and was on pred and then Aza too. Drugs and bloods took a while to stabalize but she was stable by about 8months post diagnosis. She was diagnosed in the may and didn't return to school full time until about November as the fatigue was too bad.

Now, 8months of being off all drugs, she has fortnightly bloods,which are stable and she lives a normal teenage life of parties, college and work!

As a mum I find it difficult to let go of the constant fear that she will relapse(70% chance, unmedicated) and I spend my time either worrying that she is overdoing things and making herself Ill or waiting for bloods to come back...it is very hard at times,I have found that a react very anxiously at times. I have found liver direct and cldf to be a great and needed support link. Especially when faced with new hurdles, both physically and emotionally.

I hope your daughter continues to improve. Always happy to chat.

[gtoby]

Hi

My daughter us now 29 and she was diagnosed in 1991 - It was the most terrifying experience and I fully understand your fears. At the time she was aged three and the disease came on so very quickly, the hospital was unsure whether she would survive at the time. Fortunately the steroids and anti rejection worked. Obviously it was a very long road and she had problems - weight gain, fatigue and other hospital admissions but like I said earlier she is now 29. She went back-packing when she was 21 against the wishes of our GP but with the support of Kings College Hospital who agreed to give her enough medication to last the eight months that she went away. She visited many countries and had a wonderful time. I know how scary this diagnosis is and my thoughts are with you so try and be positive.

Take care.

Gill .

[Matilda2007 in reply to gtoby]

Hi Gill

Thanks for your response. Yes it's very early days for us. I'm trying my best to be positive but when Matilda has her 'feeling poorly' days I become so stressed and anxious.

Before all this she was well child and never missed school. Now I feel grateful for the days that she feels well and manages to go to school.

We were told yesterday that Matilda's diagnoses is also type 1.

Thanks for you positive post. It's reassuring there are other mums out there that I can talk to. Wendy xx

[Joey2008]

Hi, I want to share my story with you, my son is 9 years old and diagnosed at age 7 with "possible" AIH, possible because he doesnt fit all the markers like for example with AIH the ALTs go up to the thousands though his, only reached 160, but he has an enlarge spleen, cirrhosis and portal hypertension, we live in USA and he is been seen at the second best hospital in USA but they say that there is a high percentage of liver diseases where they dont know the cause.

Either way, he was on prednisone for 6 month and azathioprine for the last year and and a half. His number when up a bit but mostly under control but his platelets count keep going down a bit. He feels good and doing tennis and golf in the summer, but I cant help not to worry about the medication side effects as well as every other thing he has at such a short age.

I go to church and pray to God for him and myself. I provide him with the best doctors I can afford and my prayers. I have no control about anything else! but he is still here, he is going to school and feeling happy, and thankful for everyday he wakes up in the morning and say : Good morning mommy" .

Hope this help you and dont loose hope, really the human body has its on way to heal. My brother one day said to me, "all what I can tell you is that there is a lot of healthy people that woke up today and had an accident and they are dead" When our time to go is, nobody can tell!

Teresa

[Nattie]

Hello,

I'm more than happy to support you. Email me on [e-mail]

I'll give you my personal information via email. X

[Ellender]

Hi, my 11yr old daughter was diagnosed with AIH type 2. She has missed so much school and lost alot if confidence. However, her meds are bringing her blood levels back to normal. You are not alone in this scary journey. You'll all be ok. Elle x

[Matilda2007 in reply to Ellender]

Thanks Elle. Yes Matilda is suffering emotionally too, mainly due to her appearance due to the pred. On a positive note her bloods are slowly improving and her steroid medication is being reduced gradually. It’s a scary journey that we’re on, but I’m feeling better about things and know that things will be ok. Best wishes to you and your daughter xx Wendy

[Ellender]

Hi Wendy, the preds are helping Mia's liver function to lower to the point that she is almost in the normal range. I have noticed a reduction in the facial swelling since the preds were lowered to 10mg and am hopeful that she will be on 5mg ASAP. She also takes azathioprine too. This made her tired and sleep alot in the day. I have got the liver unit to arrange a psychological assessment as she refuses to go to school at the moment and her attendance level is 15% at best. I'll let you know if the counselling helps. Take care, Elle