How did you feel when your child was ... - Children's Liver ...
How did you feel when your child was diagnosed and how do you feel now?
i was gutted as a nurse I was horrified that nobody had listened to us as Aaron is 9 and I told my doctor how mad i was at him, he had ignored my plea when Aaron was soo pale white his haemoglobin was 46 when we finally got him into hospital. I was also extremely gutted when we were told by Dr McKeirnan that they cant do the shunt on aaron as his spleen is also blocked, and its probably genetic from my heart disorder on the 22d chromosone
Numb! How did I miss it, even worse how did the Dr miss it? Elle was rushed to A&E and then transferred to St James's in Leeds where she spent 2 days in ICU and 2 weeks in hospital. Once diagnosed with AIH, she has come on in leaps and bounds and is doing brilliantly, yes there are blips and there always will be but we take it as it comes.
Relief - when she was taken off the transplant list!
Worry - that it will always be there, but with guidance from her consultant, specialist nurse, family and friends we are dealing with it.
Proud - that a 16 year girl (my little girl) can deal with such a profound illness and still keep on smiling!
MY DAUGHTER AGED 10 WAS DIAGNOSED WITH AIH IN SEP 2011. I WAS TOTALLY SHOCKED AND DEVASTATED. ERRORS MADE BY GP DIDNT PICK THE ILLNESS UP FOR AT LEAST 2 YRS. SHE HAS BEEN IN HOSPITAL ON 2 OCCASIONS. THE STEROIDS ARE AWFUL. THEY HAVE COMPLETELY CHANGED HER. WE ARE STILL IN SHOCK. SHE HAS BEEN DIAGNOSED WITH COELIAC DISEASE AND ALSO BONE MARROW FAILURE. ALSO. THE DOCTORS ARE PUZZLED AS TO WHY SHE HAS ALL THESE THINGS..1 YR LATER AND THEY STILL DONT KNOW WHATS GOING ON. THE UNCERTAINTY OF HER FUTURE WITH THESE ILLNESSES STRESSES ME OUT COMPLETELY. IT FEELS LIKE WE ARE LIVING A NIGHTMARE DREAM . WE HAVE TO TAKE 1 DAY AT A TIME WITH HER. SHE IS A BEAUTIFUL, SMART AND AMAZING DAUGHTER. SHE DOESNT DESERVE THIS.
That's exactly how I feel. With no diagnosis I feel powerless and hopeless to help my son. I hope all turns ok ok in the end. It's hard to give words of comfort because I too feel let down. York told me he had a virus when he was passing frank haematuria. Good job I put my foot down and asked to be sent to Leeds.
my son was diagnosed with AIH when he was 16 years old. It took a couple of weeks and time in Kings College Hospital before he was diagnosed. It was a great shock to the whole family but at the same time relieved that they had come to a diagnosis and could treat it. My son felt cross and angry that he had something and that he was going to be on pills the rest of his life (just at the age when his friends were begining to go out and enjoy themselves). However, after a few hard months he began to accept that without the pills he wouldn't be well. As he matured he began to accept that he needed to deal with his illness rather than ignore it. Unfortunately in December 2011 he was diagnosed with mild crohns disease, however the tablets he takes for his liver disease also treat his crohns which to him was a bonus. Now aged 21 he has successfully completed a 4 year apprenticeship in electrical engineering and has this year travelled to thailand and settled in australia where he is happy to be with friends who are also travelling/working abroad. He manages his tablets himself and has come to terms with his illness and recognises any symptoms should he be ill. We are very proud that he has come thru all the trauma of having AIH and that he is living his life as he should be, he accepts there will be set backs along the way but at the moment he is content and happy.
Hi, it is lovely to hear there is hope after diagnosis. My son was diagnosed earlier this year aged 16 with AIH and cirrhosis as it was undiagnosed until he became critically ill. He's struggling at the moment and can't see a light at the end of the tunnel because of how ill, tired and confused he often feels.
My son struggled too in the beginning and was out of school during a lot of his gcse year, however I was very keen once he was over the tiredness and his condition was stable to get him back to school even if part time .. I felt it was important for him to be with his friends and not to feel isolated from normal life. His friends were very understanding and this helped a lot they didnt show any pitty on him and didnt dwell on his condition. I also made sure the school were fully aware of the extent of his illness which in the beginning they did not understand, a note was emailed to all his teachers to make them aware of his limitations with concentration etc. he did get angry with us and still gets down when he gets ill .... He recently had shingles and I can see he automatically thinks he has all the illnesses that an older person may get .. But I try to stay positive and tell him it's just a small blip compared to what a lot of young people are going thru ... Not sure if this helps but it does help me get thru these bad patches. There is a light at the end of the tunnel for your son you need to remain positive for him and encourage him to speak to you about how he feels .... I think it helped my son to discuss things with his gp as he wasn't emotionally attached as I am. I think it's always difficult for young people to accept what they have and I do hope your son feels better soon and can start to enjoy life even though he may have to modify it to an extent!
Our 6 year old daughter was diagnosed with biliary atresia very soon after birth, we were shocked, numb and hugely upset. She had swift and caring treatment at Kings and is now a very lively 6 year old! We take every day as it comes, and keep our fingers crossed for the future...it has taught us to slow down and spend as much time with our wonderful daughters as we can.. if you have just been told your child has liver disease, I send lots of hope, and hopefully some reassurrance life does get better
Completely shocked & upset. We'd never heard about children's liver diseases before so didn't know anything about it. Took time to be able to say it out loud to friends & discuss with consultants with out breaking down, even though everyone been totally supportive, your emotions just take over. Now we have so much more information which makes you feel stronger! I put it in a box, try to carry on as normal, but know that when I open that box (like now) the tears will still come (tissue please :-)) but then I look down at this little angel in my arms & the tears turn to tears of love & joy, so wipe them away as he needs a strong happy mummy to brighten up his days like he does ours with his huge smiles 
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I felt like I had lost something - my son is 15, diagnosed earlier this year with PSC and UC. I realised just how much I had taken my children's good health for granted and now I have lost that. He has responded well to drugs and is well, so day to day, we are fortunate to put it out of heads, but when it comes round to hospital appointments, I end up emotionally exhausted. It has taken be a while to recognise this. As I write this, I feel guilty, as it sounds as if it is all about me. I read as much as I could about it, which was scary, but I needed to know what questions to ask, and what the results meant - lots of numbers with no context were useless. I also found it put everything else in life into perspective.
Devastated, heartbroken, angry and numb all rolled into one. Our son was 8 weeks old when he was diagnosed with Biliary Atresia, everything happened so fast... one minute we were in our local hospital and the next we were on our way to kings. That was 18 years ago and just writing this brings back all those memories. He had a successful kasai and since then we've had more an emotional journey than a problematic one.Over the years we have received so much support from Kings and The Childrens Liver Disease Foundation which we never take for granted. My problem now is letting go..... a hurdle we met this year when our son went for his annual check up at Kings with his friend. I still sometimes feel a little anger, but I tell myself these things happen for a reason... and I believe that is why they are all so special.
i was shocked, devastated, exhausted and in denial. i kept blaming my myself saying did i do something wrong. no matter how much the staff at kings said it wasnt me i didnt believe them. she had a bleed in the brain before discovering her biliary atreasia. she had her kasai then had bowel adheasions which was awful, it felt like i was never going to have my baby at home any longer then 2 weeks at a time and all i was receaving was bad news. i look at her sometimes when she is asleep and still feel guilty and wonder why it had to happen to her such a wanted baby. but i just thank god she is alive and doing really well and say she is a very special and very rare little girl!!
I felt like how much more have we got to go through!! Our son had treatment for Leukaemia when he was 6, 15 now, at BCH , the drugs they treated him with ruined his liver. He now has portal hypertension from the liver damage , also he has developed fundal gastric varices , osophageal varices, very enlarged spleen. So after thankfully getting over one life threatening disease he is now left with another one. I find living with the knowledge he could have a life threatening bleed very hard to deal with on a daily basis.
Vanessa was diagnosed when she was 3 with Autoimmune hepatitis - it took some weeks with constant visits to the doctors and then given an appointment at the local hospital, She was admitted immediately and as she became very weak and very yellow, she was transferred to Kings College Hospital in London. After a few days she was finally given the diagnosis. She was so very ill at the time that they said that they did not know what the future lay ahead for her but fortunately for her, the steriods and azathoprine worked and she was discharged after two weeks but with weekly visits for the next few months, along with blood tests. Vanessa has never taken her illness seriously but with constant nagging from me, she 'takes' her medication. Two years ago she went off travelling around the world, her GP stated that she could not go due to her illness but fortunately Kings gave her enough medication for 8 months and off she went - She had an amazing time and I am so glad that she did it. She is now 24 but unfortunately she became very ill with kidney failure at the beginning of this year and has now been diagnosed with Lupus. She is still under Kings College and at her review last week they sympathised with her for having two autoimmunes but Vanessa will not stop doing what she wants - she works for an advertising company and is always on the go but realises that she needs to take things a little slower sometimes and takes to her bed for the weekend! I obviously try and be upbeat but sometimes the enormity of her illness hits me and you just hope and pray that she is ok. It has been good to share this with people who understand. Thank you for reading.
For the first 8 weeks of my son's life I knew there was something wrong, but the doctors, midwives and health visitors kept telling me there wasn't so initially I was like 'YES, I knew it' then when they told me he had Biliary Atresia, that he would need surgery, medication etc I was devastated. Unfortunately his Kasai was unsuccessful and he required a transplant at 7 months, which was another huge shock. So much happened in his first year of life that it was only when he was about 18 months and finally managing to stay out of hospital that I actually looked back in amazement over what we, as a family, went through. He's 11 now and is doing really well, and I would say it changed my outlook on life as I no longer worry about the little things as now all I want out of life is continued good health.
I feel sick right now even thinking about it! I'm not sure it's an experience you ever 'get over' as such? Our daughter India was 3 weeks old when our midwife asked us to take her to hospital for bloods because her jaundice was not clearing. We were kept waiting for ages with our new baby and reassured ourselves that it was a busy day on the ward and that we must be low priority. As soon as the consultant entered the room we knew something was wrong from the expression on her face. When she strated to explain billary artresia I felt sick with disappointment and fear of what was to come. As first time parents we suddenly felt very shrivelled and helpless in the face of what we were dealing with. The day we found out India needed a transplant was similar - perhaps even more of a shock as we had been told just a short time before that she was very unlikely to need one in her first 2 years.
Today, 16 months after diagnosis and 10 months after we were told about the transplant, I feel very different although I am still working to come to terms with all that has happened along the way. I have definitely grown from the situation and with experience feel more able to cope as time goes on.
I have got my priorities straighter and definitely don't get so annoyed or worried about other things that used to bother me. The experience has helped me to let go of some of my own insecurities through choosing to be as present and caring as possible for my child and my wife.
Caring for a seriously ill child drains so much of your energy and focus that it is very hard to digest your feelings along the way - it felt for so long that things kept changing and I was always chasing, trying to catch up with the present. It's really important when you do get space to take some time to care for yourself and use whatever support works. As parents you can suffer more emotionally more than your child - especially when they are very young - and it's so important that you stay as well as possible so you can do your best for your child.
my daughter has recently been diagnosed with autoimmune hepatitis type 1,she's 12 years old,i was so worried and upset when we was told this,my world a just come to a stand still,she's doing okay at the minute on her medications and her blood levels are slowly getting to normal,she is one brave lil girl and im so proud of her
I hope your daughter is doing well on the medications. I Know how scary all this is. MY daughter was diagnosed 18 months ago with the same illness. SHe is 11 in a few days. PlEase try and be strong. I hope we can stay in touch. Take care 
