How common is Lymphoedema in children with Noonan Syndrome?

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Is watching and waiting the best treatment for a mild Lymphoedema or is it worth using compression garments early on to prevent it getting worse?

Lymphatic problems are very common – hydrops, swelling of the feet at birth, web neck, they’re all lymphatic, so they’re all very common. I think some children with Noonans and adults may have lymphoedema and not realised that that might be the problem or even their intestinal problems. If there’s some Lymphoedema, once it starts there is the possibility of it increasing and, some centres tend to treat people at an early stage with light garments – we don’t want to make life unbearable so they should be comfortable and easy to put on and we work with the patient to try to optimise that because if they don’t like wearing it, especially a child, they won’t comply so there is an in-between round for it but we would advocate early use of compression garments. It doesn’t cure it; it doesn’t stop it progressing but it may slow down and stabilise it.

Question asked and answered at our family’s day 2016