how I got diagnosed with non alcoholi... - Children's Liver ...

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how I got diagnosed with non alcoholic fatty liver dieses(nafld)

Ivy123 profile image
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I kept getting admitted to hospital and like once a week and the doctors and nerses thought I was lying I had lots of scans done my Ultrasound showed some fat around my liver and sludge in my gourbladder then my old consultant said it was normal to have fat around your liver my mum was a bit suspicious so she asked for a referral so he referred me to kings collage hospital to have a biopsy that sowed up I had bad non alcoholic fatty liver dieses xx

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Ivy123
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Victoria2 profile image
Victoria2

I just want to let you know your not the only patient who find themselves being doubted by the doctors. I once read an article in the econmist where the journalist was arguing that a man had died of cancer of the pancreas and been treated as a psyh patient because the doctors had immense trouble diagnosing the condition, he thought they had been racist towards the man, They hadn't the pancreas is notoriously hard to diagnose. i have been subjected to 17 years of misdiagnose because the doctors involved were not paying attention and letting their prejudices get in the way.

It's a horrible place to be in where people seem to think you are lying or exaggerating and you have no power as you don't have the knowledge that they have you only have the symptoms, which you must try and explain and hope you say the right things that they need to get it right!! It can cause YOU heaps of angst and hurt.

Try to keep a diary of your daily symptoms if your in this position and note down any patterns. i was lucky that i wrote to someone who is prepared to listen and try and help you. Medicine is very much like being a detective and they will look at the condtion that the majority of people get , than working on down until they get more and more obscure. Your at the right hospital now, with the right team, there are over two hunded liver diseases to choose from so they will have checked carefully. Let us know how you get on, are you off school sometimes? Do you get tired, have any pain etc. If you miss any chunks of school make sure the teachers keep you up to date on whats happening in the class room. If your missing maths, make sure the teacher helps you catch up and shows you how to do the problem solving others are learning. I found Maths the hardest to keep up with, If you miss three weeks you are lost, i was in the top class and got down graded to the bottom with a rubbish teacher where as if the first teacher had taken the time i would have been ok.

What are the doctors going to do for you?

best wishes Vickie

Ivy123 profile image
Ivy123

the doctors are saying that I have severe non alcoholic liver disease I have got to go kings in April for another ultrasound and to control it with a good healthy diet and said that they wont put me on tablets because they do not have a big affect

regards ivy xxx

Jujuno1 profile image
Jujuno1

Hi Ivy......my son is under Kings College also ....for exactly the same thing. He is now 16 ...17 this yr. Same advise as you.....needs to follow a healthy diet and exercise.... Trouble is with a teen who is overweight, suffers because of with low self esteem , lack of motivation it's really an uphill struggle to get and keep him motivated and on the right track!! I'm sure the doctors don't believe us when we advise that we are very supportive parents, we have tried to get our son into so many different things exercise wise from going to the gym, reasonable trainer, cricket, swimming ...you name it we have tried !! ......trouble is as anyone who is overweight will know.... With being overweight comes often a poor self esteem, lack of confidence......and the poor lad has also been bullied at school for this too....all leads to a down ward spiral ! His weight gain ( pre being diagnosed ) came on after many yrs ago in Primary school catching a virus ( which was going about the school ) , this virus linked up with another going about at the time and the outcome for our son was 'viral arthritis' which doctors treated with 'steroids' . Yes it made te viral arthritis all better and it eventually went after months but taking the steroids piled on the weight and he never managed to loose it. It all stems from there really!!!.................Added to this he then got a bowel problem ( overflow) , which was never a problem pre taking steroids... Hence even lower self esteem.. He has been under Gp's , gastroenterology and Kings now for about the last 4-5 yrs !! Very difficult for a young lad!! Kings......well, yes try monitor his liver by giving him ultrasound scans approx once yearly , they sit him down and tell him 'you must loose weight and exercise' and take blood tests....but ths has been going on yrs n yrs now.....and I keep saying 'we are trying to help him but with a low self esteem and only his parents at home keeping on at him...we are getting nowhere!! ....... We are now at the stage where our son is sick to death of going to Kings ( which is a huge 4 hour trip each way) .....I can kinda understand why he feels this way as it's one thing saying to someone 'loose weight' .....well you try doing this when your self esteem and belief is at rock bottom !!!!!!!! I've told Kings this till I'm blue in the face....they have offered no other suggestions or any mention of medication or other alternative therapies to help him . He has been to a local dietician at out local hospital who gave him a panflet of 'food groups and what to eat/ not eat , portion sizes etc... Hs diet at home is actually pretty good for a teen .... Breakfast normally is a low fat cereal ( being a teen he often doesnt want breaky ) ,lunch at school, one round of sarnies, low fat spread and a low cal drink , dinner ...we eat fairly well as a family....varied diet but we do use skimmed milk ,brown bread etc etc .....But nothing seems to be making any difference to his weight loss! I'm not naive .....we off course encourage him to go out with mates....and I know he has the odd MC'd's , fizz etc when in a crowd, obviously he doesn't want to stand out in a crowd either but we do monitor any money we give him to go out ( not earning still @ school ) ...and advise him to not be buying fattening stuff which for the amount of money we give him and that it's not often , he can't possibly be eating too many extras outside the house !! ....... Hs dad n I worry so much about his weight.....because nobody has offered any other ideas or support we have actually thought of some kinda surgery for him .... We don't have the money to do this and tbh.....it's the last thing we'd want to put our child through ! :0( .......... Would love to hear from anyone else in who has been advised they must 'loose weight ' .... School work as suffered too .......really could do with HELP !! :0))))) xxx

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