Prader willi/insatiable appetite and starting school

[Beetham]

My KS1 dd is starting a new school, she doesn't have prader willi (put that in the title as its the most well known cause of insatiable appetites) but has a different condition causing amongst other things insatiable appetite, severe learning disability, not yet waking/standing independently, no speech and difficulties regulating emotions. She has put on quite a bit of weight recently and I'm getting increasingly concerned.

At her current setting there are two cooks, everything is done from scratch and I'm happy with the portion sizes. Despite me asking they do alot of food in play, e.g. tough tray with farm animals and oats. She obviously gets fixated on the oats and eats as much as she can, staff say they redirect which I believe but I do think she eats a lot.

New setting from September is a small primary special school for mainly pmld and some sld, we're waiting for ehcp draft (about 2 months behind schedule!), some questions for those with experience of insatiable appetites:

-what sort of specific provisions around food have you got in your ehcp
-have you done school dinners with typical LA provided dinners? How do you manage lunches?
-how do you communicate the importance of managing food, I know I come across as neurotic about it but the risks to her future are so high and she will do literally anything to get food.

I don’t have a DC with your DD’s needs, but the advice and information sought during the EHCNA should cover what specific provision is required. It could include things like not using food for play. It could also include 1:1 to prevent DD eating anything she shouldn’t and lunchtime arrangements. If you get the EHCP written correctly that should do communicate the importance for you.

Does DD have a specialist nurse who can also speak to the school?

As an aside, you need to push the LA to finalise the EHCP ASAP. Until the placement is named in there it can change. If the LA isn’t sticking to the timescales send the model letter on IPSEA’s website about failure to comply with timescales. If that doesn’t work, email the Director of Children’s Services again threatening judicial review. Then, if that fails, you need a pre-action letter.

Thanks so much @Headfirstintothewild . Me and the current setting gave info re. food but I have a feeling it will have got lost in the volume of other issues and needs, I will double check things in the draft to ensure its covered. Condition is very rare, there are no specialist nurses for it and so although there are lots of individual specialists involved for example the dietitian has no experience in DDs condition.

Thank you also for the info about the EHCP, DD is in a cohort of reception children that the LA have placed in a special needs nursery for their reception year so she will have to move on, EHCP Coordinator rang me to let me know she has a space at the PMLD/SLD school, but as you say it isn't set in stone yet. With everything going on and the severity of DDs needs I haven't really been worried about it not happening but I will chase more formally.

I know it's a long shot but really helping someone may have some first hand experience of managing school food with insatiable appetites.

Hi @Beetham I have just seen your post. My son has Prader Willi Syndrome so can understand your concerns. My son was educated mainly in mainstream with 1:1 support. We did have a short period of time in a PMLD/SLD school but found them no better (perhaps worse) with regard to food. I hope you have moved forward with the EHCP. We had a pretty effective and well resourced plan but I have found settings do not get 'food' and with my son it was more about behaviour. We found working closely with his 1:1 support was the best way so there was always someone keeping a close eye. However that does not stop all the times teachers put food into the curriculum and how staff working with SN children like to feed them. We didn't use school meals - the calorie count was just too high. Thankfully he didn't search bins or suffer from pica or steal others packed lunches (he respected other children's belongings) but like your DD he would eat the oats, biscuits left out from a meeting etc. I haven't found an answer and I did become 'that mother' constantly talking about his lack of capacity with food. I would just say do not expect the PMLD/SLD school to understand anymore than mainstream - not in our experience. I remember watching a documentary about Harvey Price (with PWS) starting at a residential college and the first activity was to make a cake for a friend.
My son is now 20 and we are doing OK- he has a support team and a support plan yet support workers still take him to Costa and let him buy large bags of crisps. It is an ongoing challenge.

@redwinechocolateandsnacks thanks so much for your input.

Thanks for the heads-up about the special school, the EHCP had been finalised and has very clear boundaries around food and the current setting has met with the new one and food issues were laid out. I've also been very clear with the teacher, she looked at me like I was the world's most abusive mother at some of the restrictions but did agree to stick to them, although I'm expecting plenty of bumps along the way. They said they do alot of food in play, but she seemed on board when I gave her a list of things DD wouldn't eat like uncooked rice and pasta. It's helpful to hear your experiences and ill keep on top of it with them.

You're absolutely right about food for SEND children, it's inescapable! It's so unfair to them, DD v rarely takes food off others, but bins, crumbs on the floor or food that other people leave out is absolutely fair game.

Good to hear you didn't do school dinners, having looked at their menus I think we'll also have to do packed lunches, there's too many calories and there's regularly food I wouldn't give (chicken nuggets, pizza etc.). I have learnt that the current setting was worried she wasn't getting full on the summer menu as it's lost of wraps and sandwiches so they've been giving her an extra tin of spaghetti hoops every day!! You're right that you become 'that mother' complaining about spaghetti hoops but I felt so deflated.

Glad to hear you son is doing well, and well done for managing a team of support staff especially if they're going off piste with the food.