First post! my 2 year old has hepatitis...not viral?

[HanandJo]

Hello, our 2 1/2 year old has been poorly on and off for about a year. Just looking for advice!

He has had constant diarrhoea, sporadic vomiting, enlarged lymph nodes and occasional fevers of no obvious cause. I have felt for a while that something is not right. I'm not the type of mum to rush to the Drs and am usually quite laid back about health issues. He is our third child and we are both physios so have good clinical background and know what is normal/not normal!

He has been admitted to hospital twice in last 6 months, first time with severe tonsillitis and lymphodenopathy (6 months ago) and then with acute back pain and fever (1 month ago). He had an MRI of his back and abdo ultrasound which was clear.

Separately, due to persistent diarrhoea he was referred to Gastro consultant in June 2014 and we saw a reg in August. He did loads of bloods, we came back in October and I mentioned that he had been having night sweats and back pain, but the reg (a different one) brushed me off and told me all kids get diarrhoea and he didn't deal with any other symptoms that were not GI related (what an idiot!). By this point Jonah had been anaemic (despite supplementation) and vitamin d deficient for 2-3 months but reg did not do anything about it.

A week later our little boy was admitted for 3 days with the back pain and fever. Once discharged he became unwell again with really high fever, no obvious cause and very lethargic. I insisted we see a paediatrician again (we'd been lost to follow up from the hospital!) and she was brilliant and looked at all his past results and examined him for over an hour. She said he has a heart murmur and a few enlarged lymph nodes still, plus she was concerned re his vitamin d, and he is very pale at the mo. He is also itching all the time which worries me.

Our consultant rang last week to tell me he is positive for hepatitis but she doesn't think its a viral cause. So last monday they took a load more bloods and we are waiting! Has anyone else had similar experience or have any advice??

SO much appreciated!! Thank you

Hannah x

[Hidden]

Hi Hannah, sorry to hear that you are having a really rubbish time of it at the moment, if you haven't already checked out the website please do have a look, we have some really helpful leaflets that you can use to make sense of the long words and descriptions

childliverdisease.org/Infor...

childliverdisease.org/Infor...

You can also give us a shout on 01212126023 at any point as well, sadly liver disease is much more prevalent than people know and we have lots of families living with different diagnoses, check out the stories page for some really good pieces from parents

childliverdisease.org/Stories

Best wishes, David

[HanandJo in reply to Hidden]

Thanks David! Really kind of you to reply. His latest bloods came back with normalising LFTs so just not sure what is going on. We've been up last 2 nights and he had fever or 40.4! So I'm going to call his consultant for advice and take it from there. Thanks so much! Hannah

[Hidden in reply to HanandJo]

Hi Hannah, glad that you have some positive news with the LFTs, it sounds like a rollercoaster for you. Never hesitate to contact us on here or on the phone/email. Which hospital team are you going to see? Hopefully January's appointment gives some further clues

[ConsMum]

Hi Hannah, just wondering if you've had any results from the bloods yet?

My son was diagnosed with a liver disease at 8 weeks old. He had blood and urine tests done at 7 weeks at our local hospital. The liver function tests weren't normal so they referred us to King's College Hospital in London, which is one of three specialist UK hospitals for paediatric liver disease, the others being Birmingham and Leeds. I was wondering if anything did show up in your son's bloods and if you're being referred to one of the centres?

Best wishes,

Jo.

[HanandJo in reply to ConsMum]

Thanks for the reply Jo. I'm so sorry to hear about your little boy, what a complete shock, so soon after his arrival Do you live near London or is it a massive trek for you? Our son's consultant did say about possible referral, but his latest bloods have come back with normalising LFTs, so perhaps the cause is something else? We just don't know, he's had super high fevers the last couple of nights and clearly not himself, so we'll see where we go from here. I'm going to touch base with his consultant today or tomorrow. Best wishes to you and your family xx

[ConsMum in reply to HanandJo]

Hi Hannah, yes we live quite near to King's so it's not a problem to get there, and they are brilliant so I'd be happy to travel anyway! My son is 15 now so we've been going there a while I hope your son's consultant can shed some light on what's happening and things improve very soon. Take care xx

[HanandJo in reply to ConsMum]

Thank you xx

[gtoby]

Hi, I had a very similar story with my daughter when she was 3 years old - constant visits to the doctor who stated tht she had hepatitis and to keep away from other children just in case she was infectious, and then finally she was referred to a paediatrician at the local hospital who admitted her imemdiately - After a week in hospital, she was referred to Kings in London. My daughter at the time was very yellow and within a few days she was diagnosed with Autoimmune Hepatitis - She is now 26 years old and lives a very full life but will have to be on medication all her life. When we visited our GP later he apologised and stated that it is very rare and is not seen very often. I hope I have not worried you and that Jonah will be fit and well soon.

Keep us informed.

Regards

Gilllian Toby

[HanandJo in reply to gtoby]

Thanks Gillian! I'm so sorry to hear you had a tough time, but its encouraging to hear despite the diagnosis she is doing well and getting on with life. The SMA test, which I think is for autoimmune hepatitis was positive for my son, according to the clinic letter we got yesterday. So perhaps we will travel a similar path. It's just a bit strange because when the consultant rang me she said the latest tests were normal. I guess we'll just wait and see how he is for the next 3 weeks and see the hospital team again in January. You have all been very helpful and supportive, thank you

Hannah

[gtoby in reply to HanandJo]

Hi Hannah

Thanks for your reply and I hope Jonah is feeling better soon. It is a difficult time but with the right care hopefully he will lead a full life. Try and have a peaceful and happy Christmas and hopefully your appointment in January will give you peace of mind. Let us know what the result is and in the meantime, take care.

[HanandJo in reply to gtoby]

Thanks so much! X

[ConsMum]

Good luck for your appt in January Hannah. If they do think it's AIH I hope they refer you to one of the specialist centres xx