Hi everyone, so pleased forum is up and running again, this was a lifeline for me a year ago! My son Ned is 20 months and was born with long gap OA (joined at 8 weeks). He later had a thal fundo and has had several dilatations. On day 1 he had a gastrostomy put in and this was his lifeline until we went to a tube weaning clinic in Austria three months ago and in two weeks he went from being tube fed to eating orally. All fantastic, and his doctors here are very impressed and have just taken his gastrostomy out. Its just that he isn’t gaining weight, probably partly because he is running round madly these days. Everyone says ‘oh but he’s probably not meant to be big’ or ‘you’re not big so thats why’ but he is much skinner than his brother (and now the same weight as the baby who is a year younger!). He can’t manage food like potatoes or bread at all probably because of dysmotility and i think that is why he struggles with weight, though he does very well with chocolate and ice cream! He has been 9.8 kilos for 4 months. Just wondered if all this is normal for TOF kids and whether he is ever likely to catch up.

Hi

It’s great to hear that Ned is eating so well. I’ve been told a few things that may interest you. Yes, children with TOF’s are quite often smaller but grow up to be just as healthy as any other adult. There was a small study done in Melbourne about this.

At Ned’s age, childrens growth slows down a fair bit so the weight gain should be smaller. Our dietician & paediatrician just want Jack to follow a line on the growth charts. They don’t care which line.

Jack had a Thal fundo too and I have found that avocado was our secret weapon in getting him to put on weight - he lost heaps. Fortunately he loves it and will eat mashed avocado at any time. He will also eat broken up processed cheese slices at any hour of the day. Full fat of course.

I also found that eating tires him so I often give him 2 meals. For example, I give him some pureed casserole for tea, bath him and then give him some more. He is always happy to have the second lot. Then yoghurt or something.

Jack has formula too, even though he is 17 months. We make it up so there is 1 calorie per mil. There must be a formula that Ned could have - possibly what he had before. You could make smoothies, custard, puddings or milkshakes out of it and would know that they would have extra calories. You would just need to make sure that this would be in addition to his food, not to replace it.

I’m sure your dietician would have some great ideas.

It’s really hard when you want them to keep growing and they stay tiny. Good luck, I hope that you find something that helps.

We’re doing OK on the food front at the moment but Jack just won’t drink anywhere near enough fluid to survive. Hence the formula via his gastrostomy. He has a cold at the moment so is eating very little. My Mamma instincts kick in and I really want to feed him up but he has other ideas. He has recently put on enough weight that his wrists look all pudgy and like they are about to burst. Kind of handy that, because he’ll use a bit of that to get over this cold. They tend to knock him around. Then when he eats again, I’ll be trying to fatten him up again too.

Take care

Jody

hi Jody thanks for your reply. How much does Jack weigh, out of interest?
Rebecca

Hi all, just a quick note to say that naioka is a skinny little thing too, im pretty sure it is to do with her tof as ive heard it said over the years.
She weighs 15 kilos at the moment…im not sure if thats normal for a 4 year old. i have a 3year old little sister and she weighs the same.
I always say shes like a little frail birdy but she’s as healthy as they come all things considered so im not to concerned.
Is anyone else’s kids really tiny??
I hope you are all doing well.
jessica and naioka

Hi

im a 22yr old OA/TOF and ive always been small. my younger brother over took me in height a couple of years ago despite me eating a much healthier diet. i guess its just one of those things. i am though perfectly well proportioned and very fit and healthy and i love food(as long as i have a drink)although potatoes and bread have always been a nightmare, as well as biscuits and meat. anything stodgy just builds up at my scar line and is guaranteed to stick. mashed potatoe drowned in gravy with sausages goes down quite easy, the sausage chunks act like a weight to take the potatoe down with it?!? as far as whats easy - it fresh fruit and veg its the only stuff i can get away with no having drink nearby (most of the time)

anyways all the best
Paul

Hi Rebecca

Sorry to take so long to get back to you. Jack weighs around 10.5 kg. He was a little bit heavier but has lost a bit with his cold.

I think the main thing is that they are growing & able to do the things that they should (run play etc). Our dietician said that as long as Jack is following a line in the growth charts, and she doesn’t care which line, she’s happy.

Cheers

Jody

Hello im Tasha am 19, just joined the site.
Ive always suffered with my weight, i find it sooo hard to put on weight.
All my mate’s think im mad when i moan about being small.
Everyone at work hate’s me (not literally) they hate it because i sit at my desk munching food all day, i can eat what i want when i want i dont have to watch wat i eat, which is great i suppose.
I am happy with my weight im not too skinny but i would like to put on weight to make me look abit more chunky.
I have been bullied over my weight, people sayin im anorexic (sorry if spelt wrong), ‘twiggy’ was there favourite name for me,made me laugh actually.
Ive always put my weight down to my TOF/Oa condition.
The thing i do find tho, is if im porly i can loose half a stone easily within a week 2 weeks. So i try to keep myself healthy.
Sorry for babbling on.
Hope your all ok Xx

Hi i have just joined the site my son kayden was born a tof/oa with an imperforate anus he was born at term (well a day early) weighing 6lb 2oz but went down to 5lb after his surgery (done the day he was born)and the following week because he wasn’t able to feed for 2 days and was then tube fed for 2 days before he could feed normally i am so glad to hear that it is tof related for being small as he is now 13 months and still only weighs 19lb 10oz it has always worried me that he is quite small although he eats everything in sight but he is meeting all his milestones and is walking so he must be getting what he needs. im glad im not the only one that had concerns and this has reasured me thanx everyone
louise