balloon retained gastrostomy tube child 13 months

kingfisherblue

My son also had his oesophagus tied to prevent reflux - a Nissen's fundoplication. TOFS will also support children who have had this operation.

Sometimes a diagnosis isn't made for several years, sometimes never. Contact A Family are a national charity that can link families whose children have the same rare conditions and/or symptoms. They also have fact sheets - one called 'Living without a diagnosis' may be helpful.

www.cafamily.org.uk

fryster2006

Hi,

My daughter Chloe had one fitted last year when she was 2. We had major issues with feeding up to this point, she would only manage to keep down about 1 bottle of milk a day at best. Despite this, our local paediatrician and specialists wouldn't put a tube in, it was only after she was in hospital following heart surgery that they said that she wasn't allowed anything by mouth and arranged for the gastrostomy. Since having the tube, she has thrived much better, we don't know how much of this is down to the gastrostomy or the heart surgery, but the re-assurance of knowing the exact amount of fluid that she is getting is great.

Chloe was diagnosed with an extremely rare chromosome abnormality at about a year and half old, we had already applied for DLA based on her heart condition before this and had been awarded the higher rate care component.

I would apply for DLA, it's hard filling out the forms and you'll end up repeating yourself over and over in them. Base it on a worst case day, and don't get downbeat if you get refused first time.

kingfisherblue

Don't base a DLA application on the worst days - this is benefit fraud as you are exaggerating the care needs and may receive money that you are not entitled to. Instead, write about average days. You can then add, 'On worse days, which occur X times a week/month....'

Some people like to get help with the forms - your local CAB or welfare rights office can help, but you will need to make an appointment.

It can be useful to compare your son with another child of the same age. For example, 'When we feed X, it is via a gastrostomy tube. Most children of the same age are able to enjoy eating food orally, but this is not an option for X as the reflux means that he vomits back any food that he has eaten orally. This is very distressing for X - he needs comforting, washing and his clothes neeed to be changed.'