Putting a padlock on the fridge is just part of life with Prader-Willi Syndrome
It might seem extreme for Katie Price to have put a padlock on her fridge to try to control her son Harvey’s eating, but for any family touched by Prader-Willi Syndrome, these difficult decisions and systems are part and parcel of firefighting a cruel condition.
Prader-Willi Syndrome is a genetic disorder that means that the sufferer never feels full up and has a constant compulsion to eat.
PWS leaves the child with a fraction of the metabolism those without the condition have, so, despite their compulsion to constantly eat, they require a much lower calorie intake. This means that sufferers of PWS are at a huge risk of life-threatening obesity-related illnesses.
One of my most life-changing and loving experiences in my childcare career was with a beautifully chaotic family that included Gideon, who has Prader-Willi Syndrom.
Before joining the family, I knew very little of the condition.
Gideon is an absolutely gorgeous soul, supported by his three brothers, parents and wider family. He became and will remain a huge part of my life and watching him develop is something I do with pride knowing I played just a small part.
Caring for this child taught me that dealing with PWS is a full time job for any parent. Gideon feels constantly hungry and can resort to many unexpected measures to get something to eat.
Portion control was vital and he was on a special ketogenic diet, made up of mixed fat and protein and low amounts of carbohydrates. Because of the way his metabolism worked, we had to modify the diet in line with guidance and ensure that we always kept an eye on how much he was being fed.
No parent wants to deprive their child of treats and it seems inexplicable to many that Katie Price has had to padlock the fridge – but to me, it comes as little surprise. We had to install a gate at the kitchen as Gideon would raid the fridge at any opportunity and if it were ever left open, he would be there, quick as a shot.
PWS can lead children to not only overeat foods that are not good for them, but also to try to consume non foods – anything from lipstick to play dough.
I once took Gideon on a trip to the zoo and we met a huge snake, which wrapped around me. Gideon was not phased but he did make an attempt to taste the snake.
PWS affects development as well, but despite taking longer to be able to use his voice, Gideon is always able to convey his thoughts through communication, smiles, hugs, and, yes, tantrums.
Children and adults with PWS also suffer with anxiety, slow development, learning and behavioural problems and, more often than not, they will not properly develop genitals or experience full puberty.
It was heartbreaking to have to close a gate on Gideon or take him away from the fridge. It wasn’t his fault that he kept trying to eat – his appetite was telling him he was hungry and it’s not something that can ever be satisfied.
There are many different methods and approaches that may need to be tried when caring for a child with Prader-Willi Syndrome, and it’s all to keep the child safe, not to punish them or upset them.
The cruelty of the condition means parents and carers have to make decisions that can feel hurtful and I have full empathy with Katie for the guilt she feels for padlocking the fridge.
But the right thing to do as a parent is to follow the guidance and ultimately keep the child safe, healthy and happy.
PWS doesn’t define Harvey, nor does it define Gideon who, above all else, is a happy, giggly boy who loves playing doctors, has the cutest smile and gives the most wonderful cuddles.
But there is no denying that PWS is something that always has to be at the back of the mind of anyone caring for a child with it – and padlocking the fridge may be the only thing Katie can do to help.
Do you have a story to share?
Get in touch by emailing [email protected]
MORE : Mum uses letter stamp trick to make cheap wrapping paper look expensive
MORE : What is attachment parenting and how can you implement it?
MORE : Parents warned not to tell children expensive Christmas gifts are from Santa
Source: Read Full Article