7 year old boy diagnosed with Liver Disease

[melredstar]

I'm devastated. Today I was told my 7 year old son has Liver disease. Despite a few issues he seems so healthy and happy at the moment. How do I tell him? What do I tell him?

I did a bit of searching and was ill from reading the stories of how this disease degrades and the terror of watching your child decline.

We were offered no counselling, and the gastro, who I have only met once told us to come back in three months. It was matter of fact and technical. No real discussion of the future, just a wait and watch approach. How do you cope?

Where do I start?

[Emma-2]

Do you have a number you can phone? Or even an email, you could get in touch and ask for further explanation. If you know what type of liver disease he has you could possible speak to his GP about it. Waiting and watching is not easy. My baby is like this just now and it’s quite stressful but after 3 months I’ve manged to push it to the back of my head and try and get on with day to day things and very much learnt to take each day as they come. My heart goes out to you. Dosnt seem that the drs have supported you with this. But the follow up in 3 months will be much better or at least it was in my case. Best of wishes xx

[NoahsStory]

Hi, I am really sorry to hear this and I know exactly how you feel. My son was diagnosed only a few weeks ago. It is not easy and it is extremely heartbreaking. I have found that the support on here has been incredible. People who are living this are the best people for advice and help. They have really put my mind at ease a little.

If you ever need to talk, please feel free to let me know.

[Kimba3]

Hi, I am sorry to hear of your son’s diagnosis. It’s hard to come to terms with something like this isn’t it? Not sure if you are already on Liver Mums on Facebook, but if not I’d highly recommend. Its such a supportive group and there’s always someone who has experience of whatever questions you might have.

Also, the Children’s Liver Disease Foundation has info on all types of liver disease in kids.

All I can say is take one day at a time ( that’s what I’m trying to do too). Don’t look too much into the future as your story is not necessary going to be the same as others. Keep strong xx

[Lois-Cldf Partner in reply to Kimba3]

Thanks Kimba3... anyone needing information on particular conditions or help and support please go to our website childliverdisease.org or you can message me directly.

[Sophie246]

Take a deep breath, take another one.

You have got this.

Please don’t get sucked into the internet, what you are reading is not always relevant to your situation.

Take a few days to have a massive melt down and then focus on the NOW. What can I do today? Is he happy? Is he well?

Make an appointment to see the doctor again, take your son it’s his illness and he need to understand and ask questions. Children don’t see illness in the same way we do. As he grows up he will learn how best he can cope with his condition.

Always ask for a second opinion, ask your local doctor to explain things you don’t understand.

Take time for yourself, you can’t help him if you don’t have the strength.

Best of luck with your son, X

[Stacian]

Hello my dear... I am so sorry to hear this and I am even more sorry to hear that you have been offered no support... Firstly I would like to say on behalf of the group we are all hear if you need to talk about anthing. Also from experience I wouldn't recommend using Google too much the stories can be terrifying and not always relevant to your individual case... The liver disease foundation is a brilliant and supportive place they have plenty of trained staff you can speak to... I would also recommend you go back to the Dr who diagnosed him and tell them you want tsome. Support and answers.. I hope this helps a little

Stay strong, there is life through liver disease honestly xx

[Dellybell]

Hi I'm sorry to here your news I was in your shoes 7 years ago. My son was diagnosed with AIH. Firstly I am going to say that every case is different don't always think the worst. I like you, scrolled through the internet but found the most informative info was on children's liver disease foundation website. My son was seemingly a healthy 10 year old the only thing that I noticed was he lost a lot of weight in a matter of weeks and went from a boy who wouldn't stop eating to a boy that was almost skeletal. It was over a year when he got diagnosed it's the worst time because you feel helpless as a parent and it just looks like your child is wasting away in front of you.

My son was started on prednisolone, I'm not going to lie to you because there are a lot of side effects it's very dramatic but I just wanted to reassure you that it isn't always as bad as you read. my son is living a very happy and full life he is 17 and is a typical teenager (a pain most of the time) but hasn't missed out on anything that he wants to do. Try not to worry, just take one day at a time. Sending love and hugs your way x

[CyberkidsMom]

What is the exact diagnosis?

[Joey2008]

I was told the same at exactly same age, my son is now almost 10 years old in September and I know your feeling, I felt the same, healthy boy and suddenly they told me he had an enlarge spleen and after multiple test at Chop in U.S., they came up with possible autoimmune hepatitis.

The way I explain him is that our buddies sometimes get sick and as cars we always need some maintenance, I didn't go deep because he was still too young and still he is, but I realize as he gets to be a teenager he will find the prognosis of his disease and there will be the challenge since the hormones and anxiety will kick off.

I have a believe in God and for the last 3 years is being that faith that kept me going and things has been calm and manageable, hope it will be the same for you, best wishes and blessings!

[melredstar]

Thank you for your replies and support.

Its been over 2 months now since we were told that our son has cryptogenic (unknown) cirrhosis of the liver, which was confirmed by liver biopsy. At diagnosis we were told that a few more tests needed to be done to rule out a few other causes such as CF, Shwachman-diamond syndrome and Wilsons disease, but they were 99.9% sure these would be negative. (All tests for autoimmune or viral infection causes had come back negative).

We had the further related tests and heard nothing back. Soon after I contacted the hospital and sought out the social worker attached to the Gastro department. I also made an appointment and saw the Dietitian for advice on his diet. Luckily not much has to change there- just increase his kj wherever I can.

He has also since had an endoscope and biopsy and fortunately no banding was required. The only way I found out about this procedure was by researching it online and then ringing the department and asking to speak to a doctor prior to the procedure.

Investigations to this point have shown he has an enlarged spleen and liver, malrotated bowel, pancreatic insufficiency, pancytopenia (low red blood cells, low white blood cells and low blood platelets), and platelet aggregation abnormality. We have yet to have our follow up with the original Gastro, but were referred to see another one in the same dept for a different perspective. He told us that he is almost certain our son has Shwachman-diamond syndrome, (SDS) despite it being ruled out at first, as he has pancreatic insufficiency and pancytopenia and that even if blood and genetic testing is negative it can still be diagnosed. This in itself is another devastating blow as SDS is a bone marrow failure disease and "affects several body systems, including the bone marrow, pancreas and skeleton (and occasionally the liver and teeth)."

There is so much going on with him, I feel like no one really knows what to do and we don't just fit into any one department. We have our first meeting since diagnosis this week with our original Gastro and am wanting some advice on what kind of questions I should be asking??

How do we know what state of cirrhosis he is in, or when his liver will completely fail? If there is no treatment what about chinese medicine and herbs- can these hurt??

Thanks so much for your support.

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