Cerebral Palsy and Feeding

[Sharon2407]

Hi, I have a 19month old ds who has mild cerebral palsy and severe pathalogical reflux with oesophagitis. He cannot hold food to feed himself and cannot eat anything other than pureed foods (though we try occassionally) as a result of frequent vomiting and inability to eat foods like breads etc. he is of very low weight for age and height, classed as failure to thrive. I'm trying to give high calorie high protein boosters between meals and make him an ice-cream based smoothie (banana, icecream, milk, vanilla extract and powdered baby breakfast), this makes a lot more than he can drink/eat in one day, anyone know how long this will keep in the fridge or if its ok to keep it longer than 1 day. Also any recipe ideas that are high calorie and smooth would be appreciated, His dinners are fine he basically eats what we eat once it is puree-able and his breakfast is porridge, which for some reason he tolerates, or scrambled egg with cheese which is a long slow meal but he manages! i'm really looking for things that can be made and used over a few days as in between meal snacks/drinks, without the need to freeze, need things to hand rather than having to wait for defrosting! Any ideas would be greatly appreciated.

I've got no experience of CP but will try and help till someone better turns up! My one high cal meal suggestion would be avocado with full fat yoghurt and some sugar, DS used to like that, and I would keep leftovers for a day or two in the fridge. I wouldn't really keep something with melted ice cream in for longer than a day - but I am very neurotic..

Bumping this for Sharon!

Avocado and banana pureed together

Pureed fruit with full fat creme fraiche

Cooked chicken breast pureed with full fat yoghurt and bit of philadelphia

These can be kept separate in the fridge for a few days and mixed when you need them.

Hope this helps a bit

Not quite the same situation as yours, but our ds2 (26 months) does have cp and sicks up (though it doesn't bother him and he's doing fine weight-wise).
I find it gets worse as the day progresses and he gets more tired. It's also more common if he overeats at mealtimes and if he's tired from the exercises we do with him throughout the day.
I'd therefore be looking to introduce a protein portion first thing to up the calories he's getting. (He's not going to realise it's not a traditional breakfast.)
Also would it be worth considering limiting portion sizes and instead upping the number of mealtimes he has. (Just store meals you've had in the evening in smaller than usual portions so you can quickly reheat them. You'll use them up at a slower rate and I don't think the higher repetetion rate would be too much of an issue.)
Ds2 is also hugely interested in his surroundings, but also quite floppy and this doesn't help matters if he's full of food so I do try and keep him in his chair for a short while after food to keep him upright and to allow his food to go down.
A supportive chair would also help (though we've been trying to get one since before Christmas and have at least another 5-6 weeks to go). Have you managed to get one for your ds?
Otherwise am a bit stuck. Have avoided purees with ds2 and my mind is a blank. (Prefer the mini-meal approach.) Could you get hold of a copy of Annabel Karmel or similar?

i have a ds (12)and dd (5) both nt but on high fat diet , due to medical reasons best ways i found is add cheese and double cream to everything and anything ie beans grate cheese in msh potato you could add both hte to think how mny calories in my mash sometimes add egg for good measures

My DS has CP and tends to dribble/choke out his food. we got around it by minor distractions (such as having a favourite toy nearby).

Hi all, thanks for all the replies (thanks stleger for the heads up and bump!!).

yomellamoHelly , when you say give your ds a protein portion first - what would you give at breakfast?

His OT was with us yesterday and gave advice on how to feed him, some of which has worked great already, she also said make the meals smaller as you say! DS is hypertonic so incredibly stiff and his muscles are always in use, he can sit when put in a sit position, but very strangely and his back is quite weak, the OT gives him specific exercises for that but he still needs support, not sure if he needs a chair or not, he's grand sitting in his high chair, with support, for feeding. I don't really do puree's myself, just have to puree everything we eat as mini-meals for him.

I've started to put cream, cheese etc. in his food and wheatgerm in his dinners. And I will get the Avocado later. The chicken and cream cheese sounds disgusting, but I'll give it to him anyway, thanks for all the advice, didn't expect to get so many replies.