My daughter has congenital hepatic fi... - Children's Liver ...
My daughter has congenital hepatic fibrosis and portal hypertension, has anyone else any experience of this condition?
my daughter was diagnoised with portal hypertension at the age of 14 months old.it was not nice seeing it happen.they gave her a small operation which was small elastic bands round some cells in her throat.we was in hospital at kings college hospital when they done this
My 12 year old has it too. Congenital hepatic fibrosis and portal hypertension. He's quite well. Apparently he's had it all his life. I've been thinking of going to see a natrapath. Read something about fish oil and milk thistle helping. IM NOT GOING TO TRY THESE TILL I KNOW IT'S SAFE TO DO DO. it's such a worry isn't it. No idea what the future will hold. Sending best wishes to you. X
my son gets his banded till they can operate on him xxxxxx
Thanks, Isobel has just had her first lot of bands at Kings, we're told she'll have to have further banding done - does anyone know if there are problems associated with repeated treatments?
Hello I am a 34 Year old girl that has Congenital Hypatic Fibrosis of the Liver and Varices of the Esophagus (gullet) and stomach. I had a bleed of 4 and a half pints of blood when I was 11 years old.I was taken to Ninewells Hospital in Dundee where I live. Because of how rare it is in Scotland they could not treat me as it is usually Alcholics that have this type of condition. After a week myself and my mum where transffered to Kings Collage Hospital in London where I stayed for a week. I was seen by Professer Howard and his team. I was diagnised with this condition and Had to be put under General Anistetic to have my Varices injected. I Man called Dr Barcley spoke to his boss Professor Penington and he agreed to treat me as I was the height of an adult by then and they could deal with it then. I went on to have injections and they got them under control and everytime they gave me a scope and i have had so many of them i couldnt count how many i have had . Once the injections stopped I then recieved banding also . Then after they tried a new way of gluing them i havent had any problems . I have not had a bleed from age of 12 and my last scope was when I was 16, until i became pregnant age 20 and had a scope when I was 6 months pregnant and all was fine and no prblems . I ve never had any other complictions with my Varices and live a very normal live and have also got twin boys who are now seven and oldest is 13. They have been checked for an enlarged liver and all seems fine so far as although you are born with it its not until it rasies its ugly head you relise you have it . I am on no medication apart from ZANTAC 150mgs 2x a day to keep acid at bay as a precation. I can have a little to drink but not all at once so best just to avoid it altogether. I do have Kidney trouble with kidney stones and one kidney filled up with poisen and had to get a stent but i only had that for 6 weeks and got it removed don t know wether it is related but thought id let you know. I havent attended an appointment for my condition in years but am to visit my Consultant this March so he can see how I am. As for my sister she is 33 and has portial Hypertension Varices and same liver condition and attends Edinburgh Royal to have her Portial Vien Tips checked by a camera going down the side of her neck. She wasnt diagnoised until having a bleed at 21.She attends both Edinburgh and Ninewells if you need more info on my sister condition or myself get back to me as there is only 3 ppl in Scotland with this condition. Thanks hope i ve helped you 
Thanks for your reply - its reassuring to hear you're able to live a normal life - in particular that you've had children - I haven't asked anyone whether Isobel will be able to have children as she's only 3 but it is something that I've been worrying about. I'm also pleased to hear that you haven't had to have repeated treatment for varices throughout your whole life - I imagined that once they start being treated that this will continue. I'm glad they got yours under control.
Thank you so much for sharing your story
Lexi
Hi, my daughter India is 16 months and has had portal hypertension since her liver transplant in April. This has not caused her any symptoms but has had to be addressed. A few months ago she had an angiograph procedure at Leeds general Infirmary to address this. It incolved a needle from the outside going into the vein and then a balllon being inflated from inside to widen the channel. It was pretty non-invasive and low risk under general anaesthetic and we were only in hospital for 2 days. The procedure was a success and improved the blood flow significantly. The narrowing of the vein van recur, especially in babies and younger children and indeed an ultrasound found one month later that some further narrowing of the portal vein had taken place. We are returning to LGI next week for a further ultrasound and it is likely at some point that the procedure will need repeated. There are no concerns about the procedure needing to be repeated and we undertand this is not uncommon in young children post transplant.
I think the banding is a bit like having your varacoise veins done. Your blood supply is just like s train track. Once one route is blocked the blood just finds another route to take. We have lots of veins. There should be an ask an expert part on here as I too have lots of unanswered questions. X
Hello, my 10 yr old son has CHF, he was diagnosed at 18 months. An enlarged liver and massive spleen, hypertension resulting in varies. We agreed to put him on a banding programme to prevent bleeding. Although the banding has cover the varies my son now has a varies low in the stomach that cannot to banded. Not only are we back to the worry of him bleeding I asked if this varies was caused by the banding. I also think if you shut of one it will create another. did they not know this?. Did we make the wrong decision to agree to the banding programme?. We feel in the dark with so many different answers given and if it so rare are the expects able to know the answers?
From pip
my thoughts go out to all x
Hi Pip. My 10 year old son has CHF, he was also diagnosed at 18 months old - went to the doctor for an ear infection and came out with CHF. He has an enlarged liver and massive spleen and portal hypertension. We have had no banding done so far - we have endoscopies every 12-18 months to check if he needs any banding. We were told they would only do it if necessary. Would like to chat more and compare notes and we have no one around here that has this problem.
Thanks Qtown
If any of the families on here would like to ask myself or my sister any questions then its not a problem as We have had this condition in different ways for years now
Conor has an appointment with the natrapath path on the 12th feb. although its mainly to treat his hayfever. I will let you know what's said. Every case is different of course. I hope he can help. I bet it costs a bit also. But well worth it if I can keep him well.
The thing is about banding I was thinking. Bleeding varasis can be life threatening so I suppose if someone suggests you do it you will. It's not really a choice it's just not good to bleed so you have no choice but to try and stop it.
Elaine
Hi my son has congenital hepatic fibrosis and portal hypertension he was diagnosed when he was 2 and is now 10. He has an enlarged liver and spleen. So far it's a wait and see game with no a lot of information. I know your posts was 2 years ago so I was just wondering how things with your daughter are going. We have endoscopies every 12-18 months to check on varices at the moment there has been no banding.
Hi,
Thanks for your reply. Isobel is doing well, just regular blood tests, ultrasounds and yearly endoscopies to check on her varices. She's had to have bands the last couple of times.
It is difficult not knowing much, different consultants tell you different things. Its easier to cope with now than when she was first diagnosed. Isobel’s big sister went through a really anxious period after Isobel's last hospital admission for OGD but has calmed down now, hope we don't go through the same thing next time!
Yes, that is basically what we are doing. Did Isobel only have the bands done when they were needed? That is what we have been told that would happen banding would only take place when it was needed - obviously they can't guarantee that things won't happen in between. We found it very hard when Tom was first diagnosed, it seems that the doctors really don't know what will happen - it's a wait and see game.
Thanks for your reply
Qtown
Yes you are right. This is a great forum to speak to people, we haven't had access to anything like this in Australia.
It does help.
Best wishes
Qtown
I'm 24 years old and was diagnosed with ARPKD/CHF when I was six. I've been in and out of the hospital several times over the years but lately my health has been fair, at least. I hope your daughter is doing well, I know it can be hard to deal with these things, especially as a child when it's harder to understand.
