UK Disability Resource of Disabled Needs

pixie · Site Admin Joined: 16 Jun 2007 Posts: 1818

http://pwsa.co.uk/main.php

I am looking into this for my daughter as she has many of the signs/symptoms.
In her case it could have been aquired as she had a closed head injury at 3 which also started her seizures.

I really can't keep up with all the food she's getting through. Does anyone know where I can get a lock for my fridge and freezer because I may need to take control and lock food away, it's disappearing so quickly.

Speeds · Posted: Sat Sep 22, 2007 6:47 pm Post subject:

This is what Thomas has.

He has a controlled diet and as you can see from his photos is doing really well.

We do not lock food away. Thomas knows he must not take without asking - something he would have had to do PWS or not - manners I think.

We have not had to put locks on anything yet and today - he was at a party and asked what he wanted to eat and he chose pasta over chips - a first and I am so proud of him.
_________________
Karen, Dominic, Thomas, Zola and Belle

http://www.flickr.com/photos/the_hues/

pixie · Site Admin Joined: 16 Jun 2007 Posts: 1818

Thanks Speeds.

Thomas is doing fantastic with his diet and well done to him for choosing pasta over chips.

I have had a chat with my daughter today. As she's 21 it doesn't seem right to lock food away from her so I've asked her to ask instead as the food I buy is for all of us and not just for her.

She really is eating everything and anything she can and has done most of her life. We have had to take her to casualty before now because she has eaten non food items. I've always put it down to her Autism but I am wondering along different lines now.

I will look into it more and then chat with her to see if she wants to take it further.

Speeds · Posted: Sat Sep 22, 2007 7:56 pm Post subject:

Sorry - I sounded harsh over the manners bit

. It is just that I have had children come ot my house and just take food without asking - nothing to do with PWS and over eating just because no one has stopped them. I had forgotten that your daughter was a grown up and stupidly I was thinking of a child Thomas age (strange how we all think people have kids the same age as our own

)

Do get her thyroid tested - that may be a problem making her hungry.

PWS is genetic but if you do get damage to the hypothalamus then it is possible to mimic the syndrome. Remember PWS is like autism in that it is a spectrum of how it affects people. People with PWS can have austistic spectrum traits . For her health it is important to rule out every possible cause and also will help with almost a retraining.

However I can talk - I am useless with my own diet and far too heavy - a size 22 but I can manage Thomas because I can but not myself because I am not disciplined for me.

I wish you luck and if you do want to test for it then do go and ask for advice on the PWSA forum - they are very helpful and if you explain then they should be able to offer some advice.
_________________
Karen, Dominic, Thomas, Zola and Belle

http://www.flickr.com/photos/the_hues/

pixie · Site Admin Joined: 16 Jun 2007 Posts: 1818

No need to apologise, I must admit manners mean a lot to me too. It doesn't take much to say please and thank you but these days kids just don't seem to be taught manners at all.

I was hoping that the independence of cooking for herself etc. would help with her overeating but alas it seems to have made it worse and she has told me she wants me to take more control of her eating. So it's back to telling her she can't have another bowl of ice cream or whatever!!

I will be spending the next few days looking into it on the net. It's something we had considered a while ago but it all got lost in day to day life somehow.

I do worry about her health. In one meal she can eat more than her Dad does in a whole day.

Thanks for your support Speeds. I'll keep you informed of any progress.

Speeds · Posted: Sat Sep 22, 2007 9:18 pm Post subject:

Just a thought Pixie - I know this is hard - I am useless but keep a food diary. Weigh out or work out calories and also put donw what she has not had that she asked for.

Also, instead of saying no - offer a low cal alternative.

Whitworths do Apple crisps for example - 32 cals a bag instead of 100 or so in a packet of ready salted. Offer a piece of fruit or carrot sticks with a low fat humous or dip.

Thomas eats well but is not hungry per se as he has loads to eat - just that it is all low cal.

Cucumber sticks and little cheery tomoatoes are good too - as are - tinned pasta eg like alphabetti sketti as they have a known calorie amount. Add a tin of sardines and grated carrot - heat and a tasty, nutricious but healthy meal with still calories left for pudding.

Anyway - I know that this is easier with a 6 year old than an adult but maybe it will help.
Thomas still has cakes and sweets etc but not every day.

HTH - good luck
_________________
Karen, Dominic, Thomas, Zola and Belle

http://www.flickr.com/photos/the_hues/

pixie · Site Admin Joined: 16 Jun 2007 Posts: 1818

Thanks Speeds.

She has been to the eating disorders clinic and kept a food diary as well as having to note other things down on it (I won't go into those details as that for another thread, I think it is anyway).

Now she is also on the gluten free diet (as well as being a vegge) which restricts her in what she can eat but it seems that once she starts she can't stop so it will be a matter of keeping an eye on her feeding frenzy's.

She already watches her calories and weighs a lot of her food but that goes out the window as soon as she starts to eat and she just says she is in a foody mood.

Those apple crisps are lovely arn't they. I'm feeling hungry now talking about food.