CLDF Conference Session - Medical stuff you need to know - Join the conversation...

[Caitlin-CLDF]

Parents, relatives and young people listened intently as Dr Suzanne Davison talked about why some children suffer from itching, what causes it and what can be done to help relieve it.

Children who suffer from Pruritus will scratch which can in turn cause damage to the skin. Ways to alleviate the itching were discussed, such as:

• Wearing cool, loose fitting clothing

• Avoiding exposing the skin

• Moisturising the skin regularly

• Cutting the finger nails short

• Distracting the child from itching.

There are also some medical options but these should be discussed with your medical team if the itching is bad.

The session also talked about ascites, portal hypertension and varices.

A number of really interesting questions came out of the session and were answered by the panel.

Are there really no symptoms of varices?

Not really but it is probable if there are other symptoms of portal hypertension such as an enlarged spleen, low platelet count, easy bruising and Ascites. There is often no indication of varices until they bleed.

What could make varices burst?

Pressure levels have an influence but it is often very difficult to tell what makes them bleed. Sometimes a flu like illness will seem to bring on the bleeding, which may increase pressure or inflammation on the varices.

Dr Davison explained that medication such as aspirin and ibuprofen can cause portal hypertension and should be completely avoided by children with a liver condition. Paracetamol is perfectly safe in the correct dosage.

Are crisps dangerous for children with varices?

The panel agreed that they’ve never seen a case where crisps or other sharp food cause varices to bleed and they see this as highly unlikely.

Is there any benefit to my child having an endoscopy before a long haul flight?

Dr Jonathan Hind said that if your child just has one grade 1 varix, there is no need to worry. However in the case of a child with an enlarged spleen or other indications, he would suggest an endoscopy for reassurance.

However Dr Davison and Professor Mark Davenport agreed that there is no recent scientific evidence to show that long haul flights increase the risk of variceal bleeds.

How bad will Ascites get before treatment?

If a small amount of Ascites is detected on a scan, often no treatment will be given due to side effects of treatment. However if the stomach becomes distended, treatment will begin. Ascites will worsen over a few weeks and is a gradual process, the stomach will not swell up overnight.

For someone who has never experienced variceal bleed in their child, can you give some indication as to what it is like?

Prof Davenport explained that there is a significant amount of bleeding but it will almost always stop on its own. The child should always been taken to hospital immediately in the case of a variceal bleed. Dr Hind mentioned that the hospitals have a planning tool to help you inform schools of what should happen in the event that the child has a bleed.

In her session, Dr Davison explained a study whereby parents of children with portal hypertension were asked if they would have an endoscopy to detect varices in their child, even in an instance where there were no signs of varices. This is currently done in adults with portal hypertension, but is not current protocol for children. The group in the session discussed their thoughts on the matter and a large majority said they would take the endoscopy to provide peace of mind and so they would feel more in control.

However the medical professionals explained the dilemma they would then face that they would then have to decide which varices were most likely to bleed, and whether any treatment was needed. There is also a level of risk involved in doing an endoscopy as it is done under general anaesthetic, and there is a risk that the endoscope can damage the varices.

Please feel free to continue the conversation here, comment on topics which came out of the session and give your thoughts to the debate on endoscopies.

[Eleanorb]

Really useful to read this and though we are too scared to consider flying with our child with portal hypertension, this does give us a bit of hope for the future. Thanks for posting.

[picklemum]

My daughter has just had her first banding for oesophageal varices, reading this has been really useful - I had no idea that flying could increase risks of bleeding (although we weren't considering it). Also, I'll be more aware of the risk of bleeding increasing with flu like illnesses. We got a nursery pack from CDLF when Isobel started pre-school, but we haven't really had any advice on what to tell them from the hospital.

[Hidden]

My daughter has had two glueing and banding sessions for varices; at her last endoscopy one year on from intial diagnosis no glueing or banding was needed. As of yet we have not been given the all clear for flying and are awaiting for confirmation.

I myself wouldn't put my daughter through an endoscopy before a flight as she has them done under general and gets very worked up about it prior to the procedure. There are loads of nice places to go in the UK, Centerparcs if your kids are young and always take an umbrella, hee hee.

[cookies897]

really useful xx love it