How reassured are you by UK doctors that frequent scans/bloods is not necessary for the 'low risk' hypomethylation at KvDMR genetic cause?

[familyfour]

I ask this in light of different policies around the world where for example,in the States all BWS kids are scanned as per the protocol.

[familyfour]

We have chosen to go along with advice and our 22 month old son does not have any checks but I get worried after reading other parents advice from around the world on the other forums.

[daisyduck BWS Support]

This doesn't really affect us as my daughter has UPD, however, I know that the genetists at Great Ormond St (Dr Richard Scott) suggested that the protocol is less required by the cause above based on more up to date research. Would they scan if you pushed for it?

[familyfour]

We met with Dr Scott and felt more reassured as to the evidence but I still can't understand why other countries have not taken on board this new evidence if it is so compelling. Richard said we could have it if we really wanted but then scanning is not enough we would have bloods done too and then I don't want to put him through that unless it was really necessary. I guess I want to understand why the drs in the states have chosen not too follow suit.

[DanaSue in reply to familyfour]

I am in the States and I think it is because they don't want to miss something. If they scan all the time then they can find a tumor as soon as they see it in early stages and avoid problems later on down the road.

[daisyduck BWS Support]

It may simply be because they get paid more for it as they don't have a health system like us? As the NHS is trying to save money then they are more likely to not scan if they don't think its necessary?

[familyfour]

Yes that does make sense. Thanks for replying.

[kellybear]

My daughter is classed as 'low risk' but still has 3 monthly scans and 6 monthly bloods. We live in Northern Ireland but still the NHS here.

[ShortAndStout]

Perhaps the protocol in the US is based more on the legal / insurance perspective of risk than on the clinical risk, at least that is the impression my brother gave of the healthcare he received when he lived there (with his baby). Or it could be as DaisyDuck says, there is a funding benefit to the hospitals as presumably insurance covers it.

We are in the low risk group with our son, and choose to have the ultrasounds as to us there is still a small risk that he could have other tumours than Wilms, and the scans give us peace of mind. We haven't had any issues with having these scans provided by the NHS.

[DanaSue in reply to ShortAndStout]

Yes legal risk plus catching something early on is what they told me. I am in the US.

[daisyduck BWS Support]

I also have read that if they also have Hemihypertrophy, that there is an increased risk due to that (regardless of the type of BWS) so they should be scanned.

[bwsmum]

Personally I feel all BWS patients should be scanned every 3 months and for longer than the 8 yrs. regardless if the genetic cause

[Bond]

My partner and I live in Norway, where, thank God,our 18 moths old daughter has blood tests and scans every three months. However, that is only because the hospital she attends (in Drammen) run this type of policy. Had she been referred to another hospital (just a few miles away from Drammen) the tests would have been less frequent.

Additionally, the hospital where she was initially treated, was adamant that we (the parents) should not conduct a weekly abdominal test at home, whereas Drammen hospital were most insistent that we should examine our daughter ourselves on a weekly basis. They even gave us a crash course in how to do it.

I have read that the majority of liver and kidney tumours are detected by family members and friends - as opposed to hospital staff at the 3 monthly check-ups.

On the basis that early detection of growth abnormalities within the kidneys and/or liver is vital to ensure a successful recovery, I believe that "home-checks" are of paramount importance.

Helene (our daughter) is at nursery school for 6 - 7 hours (Mon - Fri) and the staff there have been most supportive. In general, just one or two members of the playgroups staff have the responsibility of changing Helene's nappy and use this time to manually "feel" Helene's tummy (it's become a bit of a game for Helene) By limiting the number of persons whom examine Helene in this way, we are helping to ensure that the two staff members whom conduct the examination, become very familiar with Helene's abdomen - therefore, they are more likely to notice when something doesn't feel quite right. Not only that, but Helene tends to "behave" better when it's not mum or dad examining her and it becomes a far more pleasant experience for both Helene and her examiners.

[Spotsandstripes]

My husband and I have been going round in circles with this question

[familyfour]

Me too. We haven't had any bloods or scans done since we received the genetic diagnosis nearly 2 years ago and felt reasonable reassured by our geneticist dr Scott from gosh, but when I hear of other parents in the uk who insist on having it done it makes me question myself as to whether I'm not being cautious enough. at the same time I don't want to put him through the stress of it all particularly as the poor thing has had 2 big operations already in his little life and a lot of prodding and poking by professionals! I don't think there is an easy answer I'm just trusting the uk geneticists know what they are talking about for now.