We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders along with tasty recipes. This post is intended for those following a low protein diet.
Are you looking for some activities to help keep the kids busy?
If your child has a metabolic condition, is following a low protein diet and aged 1-10 years, they can join the Anamix 6 club!
As part of the club, your child can follow the Anamix 6 adventures, play games and learn all about their low protein diet!
There are lots of fun activities on the website such as:
Colouring sheets
Videos
Puzzles
The club will also remember your child’s birthday and send story books for you to enjoy together.
If you have any fun activities that you’re doing whilst in lockdown, please share them with Maggie on margaret@metabolicsupportuk.org, so that we can share them with the community!
Leaving your child in someone else’s care is a stressful time for any parent. But leaving a child with an Inherited Metabolic Disorder at the school gate comes with an additional set of worries and concerns.
In this blog post, teacher and mum, Alison Hardy, shares her experience of preparing her daughter Poppy for school, and offers advice to parents and teachers on the key questions to ask.
Poppy Hardy
Was choosing a school any different for Poppy?
Our experience of choosing a nursery for Poppy wasn’t easy. Poppy has a Urea Cycle Disorder called Hyperornithinemia Hyperammonemia Homocitrullinuria (HHH) and one nursery refused to take her because of her condition, which was very distressing. Fortunately, we have one daughter already in mainstream school. So, we had some idea of what to expect from the application process. The main difference was we contacted the Special Needs Coordinator at our first-choice school and started discussions about Poppy’s needs as soon as our application went in.
What are the key questions to ask when choosing a school?
What experience do you have caring for children with special needs?
Will the teaching staff be happy to administer medication?
Can the kitchen weigh and measure your child’s protein intake?
Will the school allow your child to eat outside of regular mealtimes to maintain energy levels?
What’s your procedure for sharing medical information with supply teachers?
How are you preparing Poppy for school?
Poppy is very excited about starting school. She is definitely ready! I’ve explained that she will be sitting with all her friends, so she won’t be frightened, and that she must tell a teacher if she doesn’t feel well. Food is a real source of anxiety for us, as children are encouraged to have school dinners. To control her protein intake, Poppy will have to take her own packed lunch. We don’t want her to feel left out, so we’ve let her choose her own special lunch box and will involve her in selecting and preparing all the food she takes with her.
What will the first day of school be like for you?
I’m in no doubt my anxiety levels will be off the scale! It’s a new experience for us all. But Poppy is ready and she will take it all in her stride.
Alison’s Action Plan for Parents
Before you apply to a school, talk to the Special Needs Coordinator and ask whether the school can manage your child’s medical condition.
Once your place is confirmed at a school, keep talking to them before your child starts school. Establish a point of contact and build the staff’s knowledge and confidence to care for your child.
Tell the school you must be kept informed of all illnesses circulating at school. It’s better for you to have too much information than too little.
Make sure every member of staff knows your child and what to do in an emergency.
Explain the physical limitations your child may have and if they need to do any physio during the school day.
Prepare an information pack for the class teacher to include:
