I have a 10 year old daughter who was recently diagnosed with esophageal varices and portal hypertension. She has had 3 varices banded

[momof2]

already and we are getting ready to have another one banded. She is always having abdominal pain and headaches . Any suggestions on what to do.

[Eleanorb]

Hi, My son Evan is 4 and has portal hypertension as he has no portal vein (unusual cause of portal hypertension). He has had 3 bleeds (as a baby, none since then thankfully and touch wood) and between 12 & 15 endoscopies (can't remember exact number!) to treat his varices. He had his last endoscopy yesterday. He is generally well but has numerous issues bubbling under; enlarged spleen, chronic diarrhoea (for which he is prescribed Imodium on a daily basis), low appetite etc. Evan's endoscopies are now 6 - 12 months apart (they were every few weeks apart to start with). I'm sorry to hear of your daughter's abdominal pain and headaches. How is she dealing with her diagnosis? Do get in touch to share more information. All the best to you all.

[momof2 in reply to Eleanorb]

Thanks for responding. My daughter is having trouble dealing with it because she is a gymnast and cheerleader in which she cannot do because of her spleen but other than that she is in great spirits. We are considering seeing a specialist in Chicago to help with the portal hypertension ( possible Rex shunt). What exactly do the doctors have planned for your son for the future? Will they just continue to treat the varices? Please keep in touch. Our family will pray for your son.

[Eleanorb]

Hi there

Where are you being treated currently? We are King's patients. Does your daughter have an underlying liver disease or 'just' a block in the portal vein? Interesting your daughter has been told she has to stop gymnastics and cheerleading. We have asked Evan's doctors about this and they advised Evan to go with the flow with PE when he starts school (September) but were less keen on rugby or kick boxing. All other sports were seemingly OK. I can't imagine gymnastics and definitely not cheerleading to be risky spleen-wise, or am I missing something?

Rex shunt / America is out for us. Because Evan doesn't have a portal vein, any shunting procedure is much more complicated, as if Rex shunt is not complicated enough.

As for the future, sadly, they will keep banding the varices every few months with a general anaesthetic require every time. Sad but necessary.

Sending you my best xxxx