We, as parents to children with PWS, have answered some of the questions we had when our babies were diagnosed with PWS.
Can I bring my child shopping?
Absolutely! We all love going shopping together – Francois, dad of Claire, age 15.
Yes. Henry is such a great help in the shop. He helps get the things we need and never lets me forget to buy something. – Emma, mum to Henry, age 8.
Yes, C loves a trolley ride – Yvonne, Mum to Cora age 2.
Do we have to stop going places because of food?
No. With proper management of food access routine, and constant expectation management, this is not a problem. Francois, dad of Claire, age 15.
No, we just needed to plan, like actually physically calling in and explain our needs etc. Now we know the resturaunts that know us and they give Oisín smaller portions, no bread baskets etc. Parties for Oisín are fine too, he brings a party bag and is only allowed what’s inside that. – Ann mum to Oisín age 17
No, agree a plan of what they can have when you get there. If there won’t be suitable food for them bring their own, then they won’t have any worries about the food. – Helen, mom to Katie age 17.
Can we visit relatives and friends houses?
Yes. You can visit everywhere. I’ll check what’s on the menu and if it doesn’t suit Henry I’ll bring his own food from home. I’ll also find out what time we’ll be eating at, so we don’t arrive too early. Henry has a bag of distraction – colouring books and toys to keep him busy. – Emma, Mum to Henry age 8
Absolutely; it is important to remind the hosts of dos and don’ts when it comes to food access. Francois, dad of Claire, age 15.
Do we have to lock all our food away and the kitchen?
We do now but only because Oisín prefers it that way. If things are locked Oisín doesn’t have to stress or get anxious about the possibility of gaining access to food. Ann, mum to Oisín, age 17
Our house is open plan and our kitchen cupboards aren’t locked. We know we might have to change that when Henrys older but for now, it doesn’t bother him. Emma, mum to Henry, age 8
No, but we have to be vigilant, and not leave Claire alone in the kitchen for too long. Francois, dad of Claire, age 15.
How will Grandparents give treats to my child?
Both sets of grandparents had a special box of treats for Oisín which contained allowed snacks and other stuff like stickers, yoyo, ping pong balls etc – Ann, mum Oisín, age 17
They won’t be allowed to give food treats but there are other things like toys they can give. Nicola, mum to Iarlaith, age 18 months
Yes- just not with typical treat food. Henry loves spending time with his grandparents. Emma, mum to Henry, age 8
Is there anything I can do to help my child’s siblings understand?
Practice healthy eating with the family as siblings grow they understand the condition. There was no food off limits as I feared this would cause many issues eventually in the home. Niall was not made feel different and that worked for us. I had a hungry healthy male household apart from myself – Elizabeth, mum to Niall, age 34
Make PW a normal conversation. For the child with PW as much as everyone else. Oisin always knew the others got chocolate/sweets etc when he got his own type treats as we explained they didn’t have PW so there were made up differently – Ann, mum Oisín, age 17
As Henry’s little brother gets older, he’ll know his older brother has a ‘special tummy’, just like Henry already knows his little brother has different food to him sometimes. PWS is just a normal thing in our home. Some people wear glasses, some people can’t eat nuts, some people have special tummies…everybody has different things going on. Emma, mum Henry, age 8
Can we go to the cinema?
Yes. Henry brings his own ‘special tummy’ food. Emma, Mum to Henry age 8
Yes Oisín loves the cinema. When he was younger we got a small popcorn to share! Ann, mum Oisín age 17
Definitely; and come with some specific low-calory treats for her. Francois, dad of Claire, age 15.
Will we be able to eat out in cafes and restaurants?
Yes, Henry loves eating out. We bring his own plate and he knows that the portion might be too much, so is happy for us to dish it onto his plate. We will remove the ‘extra’ food. Emma, Mum to Henry, age 8
Yes! Yvonne, mum to Cora, age 2
Absolutely, just plan ahead speak to the resturaunts/cafe and explain don’t offer extra etc. Ann, mum to Oisín, age 17
What about Special Occasions like Easter, Halloween and Christmas?
Yes he loves it all, just again plan. When Oisín was small I used drop treat bags to neighbours house for Halloween with Oisins allowed snacks and as he got older he got all the treats but “traded” them with is at home for his allowed snacks or fruit! For Christmas he got socks books word puzzles etc instead of selection box’s never bothered him! Ann, mum to Oisín, age 17
We made a few tweaks so Henry could join in in all occasions. Henry has his special snacks for Halloween. Henry also enjoys themed meals, so apple monsters at Halloween, shamrock porridge for St,Patricks Day, Cucumber and berry Christmas tree at Christmas… thank you internet for all the ideas! At Easter, there’s plastic eggs with clues that lead to a Easter basket full of non food items. Everything is possible! Emma, mum to Henry, age 8
Christmas- we stopped serving food from bowls in the centre of the table No other changes. Halloween- we’ll have a ‘switch witch’ Exchange C’s treats for a toy she selects. Easter- lots of Easter arts and crafts and lots of PWS friendly recipes available. To date we’ve bought a Peppa Pig bowl, plate, spoon and egg set. We’ve swapped the egg for a toy bunny, but kept all in the same packaging. Yvonne, mum to Cora, age 2
Can we go on holiday?
Yes, Henry has been on holidays every year. We’re been camping, staying in hotels, staying with relatives, ferries, short flights, long flights, long car drives… He’s done it all and is a really great kid to travel with! Emma, mum to Henry, age 8.
Yes but take plenty of their snacks so their is no panic if the meal routine gets delayed. Check out menus during the day for eating out in the evening. Helen, mum to Katie, age 17
Yes it’s great! But I always plan very little for the first day or 2 to allow oisín to settle in! Ann, mum to Oisin, age 17
What amazes you about your incredible person with PWS?
She is the sweetest individual I know, very caring and good fun, and despite all the challenges she and we are facing with her condition, there is so much love within our family. Francois, dad of Claire, age 15.
Oisins ability to accept so much in his life as “Just the way it is” He is fantastic to give everything a go and once he sets his mind to achieving something he gives it his all. Everyone who knows him loves him. Ann, mum to Oisín, age 17
How much Iarlaith has come on since he was that very weak sick baby in the neonatal ward. Nicola, mum to Iarlaith, age 18 months
Kindness. Elizabeth, mum to Niall, age 34
Her determination, sense of humour and her ability to entertain an audience. Yvonne, mum to Cora, age 2
She can achieve a lot when she puts her mind to things. She is very kind and caring to others if she see they are having a problem. Helen, mom to Katie, age 17.
He is so thoughtful, really funny and is so determined. He starts each day with a smile and a ‘today will be a great day’ attitude. He’s a glass half full person. Emma, mum to Henry, age 8
Any other advice for new parents?
Enjoy your baby. I often wish I could go back and tell myself that everything will be ok. Our good days far outweigh any bad ones. Emma, mum to Henry, age 8
Start food and exercise routine as young as possible, be strict and keep to it, then as they get older it is second nature to them. Helen, mom to Katie, age 17.
There’s so much research into medication to treat hyperphagia, who knows what will be available in the coming years. No point worrying about something that may not be in your future. Yvonne, mum to Cora, age 2
Each child is unique and they present differently, especially atypical case. Elizabeth, mum to Niall, age 34
Things will get better, the first few weeks are the hardest facing the unknown and coming to terms with your child’s diagnosis. There is always people here that have gone through the same experience and emotions that you have that are willing to help. Nicola, mum to Iarlaith, age 18 months
Make your child part of your community speak freely openly and honestly about Prader willi syndrome to any one who will listen. Prader willi is PART of your lives not all of it, Don’t let it consume everything. Take support when offered and share your wonderful child with everyone! Ann, mum to Oisín, age 17
Enjoy life! Francois, dad of Claire, age 15.