Portal hypertension

[Gemma1312]

Hi my daughter has portal hypertension she has had 3 bleeds but none since xmas 2015 we have to go to Leeds general every 8 weeks so she can have an endoscopy. Just wanted to know if anyone else's child has this and doesn't it get any better are they able to live a normal life when they get older or will they always need to have this to stop the bleeding. Thank you.

[Eleanorb]

Hi Gemma

My son is 7 years in two weeks and having gone from endoscopies every few days when things were awful at 9m old, we are currently on annual endoscopies.

It was a very scary time when he was still a baby (he also had open heart surgery to repair a complex congenital heart defect at four days old) - another story).

Evan is a King's patient, they have not seen absence of portal vein as a cause of ph before (quite disconcerting). Surgery has pretty much been ruled out for Evan as presumably there's nothing to 'stent' if there's no vein there in the first place. They ruled it out early doors but we have never had a long enough conversation with his team about the rationale for this decision.

What is the cause of your daughter's ph? How old is she and was she when she was diagnosed? Does she have another liver diagnosis?

I can say more about our situation if helpful. Sorry, reply a bit rushed...

Eleanor

[Gemma1312 in reply to Eleanorb]

Hi Eleanor

My daughter was born with cirrohis of the liver she also has a blocked portal vein which has caused the ph

She is having her endoscopy now.. we have finally got it 12 weekly

Her consulant has mentioned maybe her having a bi pass but like you ive never had a long enough chat to discuss the options for Amelia it's quite frustrating

Will your son have to have an endoscopy for the rest of his life also does he have a enlarged spleen my daughter tummy is quite big due to her spleen

Gemma

[Eleanorb in reply to Gemma1312]

Hi Gemma

Yes he does have an enlarged spleen, it's the size of an adult's, you can feel it. He has a very distended abdomen and quite a few Gastro issues as a result of the ph. He's on a low dose of Imodium every day for chronic diarrhoea. He is also very thin apart from the big tummy.

How old is Amelia? I don't want to say things will get better because what do I know but what I would say is I remember the days of Evan having endoscopies as regularly as Amelia is having hers and hoping for longer gaps between them. We did get out wish. He also has bled three times but all the space of 4 months betw the ages of 9 and 13 months. Evan's varices were grade three and so bad he had to be scoped all the time, but as I said, we're down to annual ones now. We have never heard anyone say he will reach an age when he doesn't need scopes. We have also been put off flying (air pressure). Evan also have more open heart surgery ahead of him, so it is all there, in his and our faces all the time, but we have a very happy, active boy who loves life. And I'll settle for that anytime!

I hope you will not be hospital long. Where is home? We are in S Ldn.

E x

[Gemma1312 in reply to Eleanorb]

She is going to be 2 in June. It's nice to hear that you have a happy active boy with all he has been through in his 7 years. We must be blessed with little fighters.

We came in yesterday she had her schlotherapy this morning and should be home tomorrow all being well. She is just very tired ATM

We wanted to go on holiday this year but I'm worried incase she takes ill.

We are from Manchester and have to come to Leeds general Hospital.

Gemma x

[Eleanorb]

Hi Gemma

Sounds like you've had a tough year and a half. Manc - Leeds not too bad but far enough eh? Do hope you are home now.

We holidayed no further than 20 mins from and A&E for a few years, so I know that feeling. We are a bit braver now.

I will private message you my email. Please reply if you don't mind, so I know it worked because I am an infrequent user of this message board.

Eleanor x

[Theborrower]

Hello Gemma and Eleanor,

I see these are old posts, but if you still post on this boards, I would be interested to know how your experiences have changed as time has gone on.

My daughter is 7 and has Portal Hypertension. She’s had 2 scopes and a sigmoidoscopy too, and she’s about to have a third scope. She may be getting a shunt operation too.

We have felt ‘on hold’ For a while now, and I feel anxious at the thought of being far away from an A&E (we live in a city so on a day to day basis it’s not a worry, but it is for me when and if we go and visit family around the country).

How do you adapt / get used to feeling less worried all the time