Teenager diagnosed with AIH & PSC with crohns for good measure😕

Hello....this is my first post and I feel ignorant that before Monday I had no idea of AIH & PSC (Dual as our consultant keeps saying).

I cannot believe how little support is in place within NHS or Private health care, particularly if you are 16! I have been told that maybe we should ask to be transferred to an adult liver team at another hospital but that we might be sat with recovering alcoholic's. Not what you want to hear when your child is pure as snow and not even begun to experiment with life.

We live in Cheshire and are desperate to find a support group that can help us to understand the day to day living. We are currently at Alder Hey and have been allocated a crohns nurse who is lovely but keeps reminding us they have no knowledge of liver disease so cannot help, advise, discuss and whilst we appreciate crohns brings additional complications the AIH & PSC gives us the most concern.

He is currently on a diet of approx 50+ tablets & modulin... he is anxious about his long term prognosis and I am at a loss to help. Such a lonely, empty time.

Leeds are involved in his care plan but all we keep hearing is waiting for leeds....leeds have said....part of me wants to head up to leeds and say tadaaaaa this is the perHello....this is my first post and I feel ignorant that before Monday I had no idea of AIH & PSC (Dual as our consultant keeps saying).

I cannot believe how little support is in place within NHS or Private health care, particularly if you are 16! I have been told that maybe we should ask to be transferred to an adult liver team at another hospital but that we might be sat with recovering alcoholic's. Not what you want to hear when your child is pure as snow and not even begun to experiment with life.

We live in Cheshire and are desperate to find a support group that can help us to understand the day to day living. We are currently at Alder Hey and have been allocated a crohns nurse who is lovely but keeps reminding us they have no knowledge of liver disease so cannot help, advise, discuss and whilst we appreciate crohns brings additional complications the AIH & PSC gives us the most concern.

He is currently on a diet of approx 50+ tablets & modulin... he is anxious about his long term and I am at a loss to help. Such a lonely, empty time.son you've been discussing for the last 3 weeks.....look he is real. ...we are real!

Any help greatly appreciated if you were diagnosed and have been living with the condition....thanks for reading my waffle😢xx

9 Replies

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  • hi. I have a 14 yr old daughter who has AIH and is under Alder Hey And Leeds hospital. Please feel free to private message me anytime if you need anything. Always here to support you. Also have a look at CLDF website with lots of information on liver disease, they also have a teenage forum called HIVE for your son to use. Take Care x

  • Goodness what a lot to deal with all at the same time. I live in Cheshire too, and found that my local NHS trust hospital ill equipped with the specialists needed rare conditions. You do need someone who has dealt with similar cases. I don't know anything about Alder Hey except their being a children's hospital. But for the AIH / PSC crossover Leeds or QE Birmingham are definitely the right place(s) to be referred to.

    My sons adopted daughter was recently diagnosed with Crohns at aged 9 and also did well on Modulin, not needing steroids initially. However steroids will deal with all 3 conditions initially, though not long term.

    Have you been in touch with the Children's Liver Foundation? childliverdisease.org

    I'm on a FB page for adult AIH but there is a youth one as well which is by invitation only, I will go ask for details and come back to you. I find face to face ones with meetings tend to be very general for all liver diseases but there are many FB groups for the rarer conditions, it's a case of finding the best.

    Ps, I see mormer has beaten me to it, HIVE.

  • This is the PSC Facebook group recommended by my knowledgeable contacts on the AIH forum. facebook.com/groups/pscsupp...

    The children's AIH group is private by personal invitation only to protect the children's privacy so let me know if he wants an introduction to that. Parents and guardians not allowed, lol!

  • Also facebook.com/groups/CCUKfor...

    Also facebook.com/groups/CrohnsU...

    These given to me by a lady on the AIH page who has AIH and ulcerative colitis and find them supportive and useful groups.

  • Hi

    Firstly, I think you are going to have to drop your pre judgemental and derogatory attitude towards Alcoholics, re:- "we might be sat with recovering alcoholic's." There are some that are very ill and frequent this board.

    I was one of those who was sat at Liver clinic and I was scared for my life, I wasn't sat there dressed like a tramp swigging a big bottle of vodka with dirt all over me. Let me tell you something, for some unlucky people they cant help but get addicted to booze, its a genetic issue, some get addicted easier than others. Also some people have been through some hard emotional times, booze can grip you easier than you think and it might be people you wouldn't expect, Doctors, Policemen, nurses etc etc.

    Sorry to hear of your little'un. One of reasons why there isn't much help around is because his condition is pretty rare. There are a few on this board who have this too and the disease itself doesn't have a complete "cure". Doctors will try to suppress his immune system to slow damage down. Your child's issues are even more complex with crohns too. Leeds is known as a major Liver centre, so they will keep referring to them, I would be more worried if they weren't.

    I understand your sense of urgency, but the disease process usually takes decades to actually make the Liver fail. If they get his Liver enzymes to an acceptable level with the immune suppressants then it could be 20+ years before he needs to considered for a transplant or any further treatment. It will be alot of monitoring for life though.

    What you need to try and determine is the level of any scarring of the Liver that there might be. Its not straight forward to determine Liver damage, this is going to take time. You will have to trust the doctors, your child is young and will be given some priority I should think.

    What you can do whilst waiting for Liver specialists is to get copies of his bloods and scans and start to learn what they mean, its not too hard once you give it a go. You need to become his "disease manager" it might an idea not to give your son too much information early on, it might freak him out. Also before any appointments have a good think and write a list of questions down before you arrive, take atleast 2 of you too.

    Another thing you can help with is a Liver friendly diet, you might have to seek out a nutritionist for some help on that one.

  • I really did not mean to offend anyone. Whether you believe me or not, I do understand addiction. The comment was made by the crohns nurse not me...Although I don't think it would be right for a child to be sat in an adult clinic and do think that it would be relatively easy to hold a separate clinic one afternoon or morning for children. As adults we can understand/appreciate different challenges someone may have faced.

    Thank you for your advice I am taking as much information in as possible.....in the hope that we can understand his condition and deal with it in a positive way.

  • My son, now 26, was diagnosed with PSC 2 years ago.  He immediately changed his diet, no alcohol, gluten and dairy free, and then started taking various vitamins and supplements to reduce inflammation, improve immune system, and detoxify and support his liver.  These supplements included alpha lipoid acid, n-acetyl cysteine, glutathione, fish oil, selenium, b vitamins, milk thistle, and others.   Google Dr BurtonBerkson read his books, and follow his suggested regimen to address a wide range of auto immune diseases.  My son's liver function lab values were reduced significantly with these measures, although they still remained higher than normal.  Then last year he started taking low dose naltrexone (LDN), as well, and his liver function values and inflammation lab values are now all normal.   Join the Yahoo LDN user group, Google the LDN research trust in the uk, and Google Dudley Delaney's web site, and they will all lead you to more information about how LDN has been generally successful in addressing a wide range of autoimmune conditions.  Those web sites and others will also provide information about dosing, costs, where to get LDN, and other information of value in deciding if this strategy for controlling PSC and crohns is good for you

  • Thank you so much for your reply. I am still on my fact finding mission taking everything in.....all advice gratefully received😆I hope your son continues to make good progress x

  • There is one person on an AIH forum I belong to who advocates LDN but they are not in the UK. In the UK it's not prescribed "off label" for autoimmune conditions, though I believe you can get it online. It has to be "adapted" by a pharmacist from the dose used in alcohol addiction. 

    Using the Internet to search published medical journals there does not appear to be a single medical application of LDN (outside of addiction) that is supported by a class I clinical trial though there are one or two pilot studies for a few diseases, ME being one.

     A  list claiming a single treatment that is effective for multiple disorders raises a huge red flag – a treatment that works for a long list of diseases with different etiologies. 

    Really?

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