Hi everyone,
Just posting because of sheer exasperation. Harrison was weighed at the hospital this week and he has lost weight again. I knew he would have because he had a cold last week, and for some unknown reason he struggles to tolerate his gastrostomy feeds whenever he does. He now weighs 12.2 kg, which is 26lbs 12oz. And he just turned 4 years old. He weighed more than that in September last year! I know we have had the starvation prog since then, and he lost a lot due to that, but aarrgghh!!! He has crashed below the 0.4th percentile again and isn’t even on the charts.
I have just been to buy his school uniform, and really struggled. I mean - most kids are 4 when they start, so naturally trousers start at age four. Some places do age three for smaller kids, so I tried those - way too big.
I managed to discover a shop that supplies the local private school, where the kids can start at two years old in the nursery and wear the same trousers. Any joy? No, even the two-year-old size are too big. Somehow I don’t think I will find anywhere that sells school uniforms for one year olds!!!!!
I might be able to get someone to take up and take in the smallest trousers, but failing that, he is going in grey jogging bottoms! Somehow I don’t think anyone will be able to complain!!!
It breaks my heart to see him next to the other kids his age. He is just so tiny. We have seen the occupational therapists and physiotherapists as he is quite weak due to the lack of muscles. He often drops things like beakers of juice.
I try the usual cream in foods, butter etc, but the weight just doesn’t go on.
HEEEEEEELP!!

Hiya, I dont know whether any of these are suitable due to swallowing etc but there was a thread on the CF forum (cf patients need a high fat diet because they don’t absorb any fat from foods). Here are some of the lists the other parents try…

walkers crisps (not multipacks), pringles, custard,
tuc sandwich biscuits
foxes extremely chocolaty cookies, all flavours
mr kiping bakewells, lemon bakewells, toffee bakewells, fruity pies
warburtons potato cakes, crumpets, white finger rolls
new york city bagels
bakery cookies
cadbury treatsize mini eggs, mars egg, creme egg, caramel egg
genius crafty scones, big pancakes, fruit buns
fab bakin boys lunchbox muffins, kingsize muffins they aren’t really that big!)
cadbury twin pot desserts, triffles, rolo desserts, milkybar desserts
mullerrice, fruit corners, crunchy corners
own brand individual fools, cheesecakes, sponge puddings
weight watchers(yes I know!) indivdiual cheesecakes, panacotta, profitteroles, caramel crunch
ben & jerrys/haagen daaz individual ice cream pots
magnums, nobbly bobbly lollies, flake ice cream cones
walls microwave sausages, mccain pizza, toaties, microchips.

Crisps - maybe 2 or 3 packets a day (With the second packet she has a babybel - a house rule )
Cheese Straws
Tuc biscuits
Bitesize mini crispie cakes - highest calorie ones from Waitrose - M&S also do good one.
M&S marshmallow teacakes - normal size and mini ones.
Pink wafer biscuits - high in calories and fat.
Ben and Jerrys Ice Cream
Cheese on lots of things (cheddar/parmesan by the bucket load)and butter on some veg.
Yoghurts,frubes,choc mousse, flake/button puddings etc

There may be some duplicates as I have cut and pasted some of the stuff. The whole thread can be found here..

http://www.cftrust.org.uk/forum/viewtopic.php?t=18345&postdays=0&postorder=asc&start=0

I’d love to take the credit Jayne, but that should be aimed at my fellow CF mummies!

XX

being on a diet myself, I have noticed the calories in things - the chocolate melt in the middle puddlings are 560 ish calories, dunno if harrison can manage this - but a few of these week so see him gain a bit, I am sure me just mentioning them has made me put on a pound or two.
We will be going through Christophers clothes soon, as we are just about in 2-3, though still in some 18m trews. If we come across and suitable for school in the 12-18 or 18-24 range we can send them down, if they arent any good you can just give them to a charity shop etc.
Only other thing I can suggest is taking a dressmaking class, coz we all know you are supermum!

hi,
what colour trousers is it that you need for school, is it black or grey?

kim.

WoW! I am overwhelmed by your fantastic responses! I would have replied sooner but we have been away in the caravan.
It brought a tear (or two!) to my eye to realise how much support is out there…
I went to the supermarket the day I posted the orig message, and made sure i stocked up on the usual supplies of cream butter etc. I have been adding things like a mad woman! We have also adjusted his tube feeds and have tried to increase it. Also tried stuff from Sophie’s Mummy’s list.
I have been letting him eat loads of rubbish - i worry a bit about the salt etc, but it’s devil and deep blue sea, isn’t it?
He has seen occupational therapist today, who says he needs strength all over - even in his hands! She and lots of other people keep referring to his ‘developmental delay’, which kind of gets to you after a while.
Oh well, I am on the chocolate and red wine for a treat and tomorrow is another day….

Hi all,

Jack turned 4 in May and he hasn’t put on any weight since last October and still is 12.4kg!!!  I am fed-up of going to the dietician and we have the same conversation each time and I come away deflated and no further forward. 

So over the last few days I have been writing down everything he eats and then seeing how many calories are in what he is eating.  He isn’t a brilliant eater, can manage many foods and textures but won’t try lots of things, doesn’t have a big appetite and our best approach seems to be little and often. 

I am really shocked at despite me thinking he has eaten quite well over the past few days his calorie intake is absolutely rubbish!  I am now on a mission to get the most calories in him as little food as possible so the list is really brill. 

My other slight issue is that Jack has a little brother Tom who is 2 and is thankfully a healthy little thing but wants to eat everything his brother does.  So it is hard when you are offering ice cream, chocolates, cakes etc whilst trying to offer a bit of a balanced diet. 

Ohh how I wish Jack could put on weight as easily as his mummy!!! 

It is so frustrating, but you definitely can’t force them to eat, so I will continue to offer the most calorific foods I can find and hope I can get some weight on the skinny little fella. 

Emma

Ok this is going against the advise we get told of using cream and fatty foods.  Devin also had major problems of not putting on weight and only loosing it but the begining of the year i cut all dairy out of his diet and changed to rice milk and then slowly started adding dairy back into the foods we cook.  from doing this Devin has now started gaining weight it is wonderful and all our drs and specialists cant beleive that it was something so stupid as too much dairy and fatty foods.

devins now has rice milk on his meals that need it and for drinks, hes allowed one sq of chocolate a day and a teaspoon of grated cheese on foods.  this has worked that well for us that in 3months he had put on 1kg and seeing and hearing that brought on the tears i was so happy.

hope you are able to find something that helps your lil tofs

good luck
jo