Aih- unmedicated

[Blackadder1]

I wanted to ask if anybody would share their experiences of living with type 1 aih. Especially if you are not taking any form of immunosuppression.

My daughter was diagnosed 3 years ago and decided to stop taking her meds 8months ago, against her consultants advice, She is having fortnightly bloods and She is currently very well and working full time but, as her mum, I can't help but worry what the future holds for her,she is 17.

It is so hard not to worry...

[Joey2008]

Unfortunately I can't give you my experience on that, my son is 9 and taking medicine since 7, but I understand your daughter also, the side effects of the medication are scary too, good luck to your daughter! And wish you well!

[Caitlin-CLDF Partner CLDF]

Hi Blackadder1 it's a very tricky one! Please encourage your daughter to get in touch with CLDF if she isn't already, and to join our network for young people, Hive, where she can chat to others with a liver condition.

Have you seen our Talk, Tell, Transform videos? Some of the 16-18 year olds in those share their experiences of going off their meds. From 2017 Merlee talks about this in particular

childliverdisease.org/What-...

Don't hesitate in calling CLDF yourself too, even if you just need to get something off your chest!

Hannah

[Blackadder1 in reply to Caitlin-CLDF]

Thank you, I have given her the info about the hive but she refuses to even acknowledge that she has AIH. I have used CLDF and they are very supportive, as are liver direct. I will check out Merlee'sTTT vids .

[Nattie]

Hello, my daughter who's 16 was diagnosed at 14. She's on medication but I've noticed of late that she's skipping her medication on the odd occasion.

My daughter suffers from Chronic fatigue as well as AIH so she craves to have more energy.

She hasn't want to get involved in Hive or activities with CLDF.

If your daughter is having blood tests regularly at least you can check her LFT's.

I'm happy to stay in touch and organising a group chat or face book page for parents with AIH.

If you'd like to be included please email me on

[e-mail]

[Blackadder1 in reply to Nattie]

Thank you.