TOFS forum

Refusing to eat meals

2012-01-20T21:24:11Z

Hi guys
I’m after some advice and maybe reassurance about my daughter lucy’s sudden refusal to eat meals. Lucy is 18 months and born with short gap TOF/OA. We’ve had no real problems in the past, she occasionally gets food stuck but she has always brought it back up with a load of mucus and never gets upset. She usually eats a wide range of food, her meals are mostly puréed and she is good with some finger foods like cheese, raspberries and biscuits.
For the past 3 weeks almost every time I offer her a meal she either refuses it straight away, or try’s one mouthful and refuses to have anymore. So I’ve offed her meals with various textures, offered her lots of different foods, we eat in different locations etc but nothing gets her interested in food.
The only things she wants to eat are cereal, cheese, scrambled eggs and some fruits. These are all good things but I can’t base all her meals around them.
She hasn’t put on any weight since September. I have got myself in a complete worried state about it even though I know compared to some parents on here we’ve had it very easy so I don’t know why I’m handling this so badly!
I don’t know at what stage I should be calling her surgeon to get help, I’m sure she is shrinking before my eyes but my husband says I’m being silly.
On an average day at the moment she will eat a small bowl of Cheerios, refuse lunch apart from a handful of raspberries, a babybel for pm snack and 2 or 3 mouthfuls of sandwich and maybe a petit filous for tea. I can’t see how she can survive much longer like this. I don’t know if this is just a toddler problem or if it’s a TOF problem.
Sorry for rambling and thanks for reading!
Abby xx

How will I Know??

2012-01-15T13:00:20Z

Could anyone tell me how I would know if a stickie has happened? My daughter has had pasta for first time yesterday evening & has been vomiting up solids & most fluids since? Any advice great fully received!!:)

A sign of a stretch being required?

2011-11-30T20:42:14Z

Hi everyone.

As this is my first post, I’d better introduce myself and my wee boy Sam who was born on 12/05/11 with OA and TOF. Sam has been doing good since he was discharged from hospital in Edinburgh four weeks after his birth but we have recently started weaning which was going well but today when we tried to feed him some pureed vegetables he would take a couple of mouthfuls then they would come straight back out. He didn’t choke as such but he did make a bit of a wheezing noise although he didn’t seem distressed. He has been taking his milk fine all day including the feed after the vegetable puree. We are just worried that this might be a sign he is needing a stretch done but not sure as we were expecting that if this was the case he would be choking a lot and in distress (at the milk feeds too). Can anyone offer any advice please? Has anyone else experienced this with their TOF baby and if so what was the outcome?

Thank you.

Kelly

bed risers

2011-11-24T08:58:53Z

Hi All,
Just thought I’d share, for those who still have bed on a tilt—

Whilst having a lazy post-Sunday lunch at my parents, reading the junk mail, in the Coopers of Stortford catalogue I came across some ‘bed risers’. Basically it’s a set of 4 (obs for our tofs we only need 2) , well, as it says on the tin, bed risers. You put the leg of yr bed in them and it raises it by 5 inches. And at only £8.99 I think that’s a bit of a bargain. You can see them at http://www.coopersofstortford.co.uk or telephone 08444824400. Much neater and even than trying to find equal sized books to put under each leg!
Jayne x

Dismotility

2011-10-27T16:04:02Z

Hi everyone

Hugo went into hopsital yesterday for an endoscopy and we thought he was guarenteed to have a dilatation too as hes choking so much, guarenteed a choke a day as food gets stuck, he gets really raspy and has to have a really big cough to bring up the food that has gotten stuck, or drink coke to push the food down.

But once he was back from theatre his dr said his oespahagus looked really really heathy, no sign of a stricture at all, he looked all the way down to his stomach and thats all healthy too and showing no sign of reflux at all (hes been off all his reflux meds for well over a year now anyway), so he said it will most likely be dismotility. But to test for this is another procedure that they have to do under general aneathestic.

My question is, how exactly do they test for dymotility, what does that procedure entail?

Thanks for any replies
Kim xx

Reflux medications

2011-10-24T20:32:29Z

For those of you with kiddies on reflux meds HOW do you get your LO to take them? Ella’s fine with Domperidone and her prophylactic antibiotics but retches whenever we try and give her Omeprazole and she’s on 10mls a night. It was never a problem before as we always had the G tube in but as it was removed last week we’re now struggling every night :(

Its allegedly the nice flavoured one too but Ughh tastes like the sea so its no wonder she retches

Very Confused

2011-11-01T10:30:56Z

Hi everyone,

looking for advice as i am left feeling really really confused.

Hugo had an endoscopy last week and we thought would definately have a dilatation too as hes choking at least once a day and his eating has definately got harder for him in the past month. But his gut specialist said no dilatation was needed and possible wouldnt need another at all, as his oesphagus and stomach looks completely healthy and showing no sign of stricture at all.

So his specialist said it will most likely be dismobility that is causing his choking and difficulty with eating, but he cant confirm dismobility with the endoscope and to confirm it would have to do another procedure under GA.

But i just dont understand why hes having so many problems…...

2 nights ago for tea we had sausages and 2 hours later at story time he was just sat really swallowing hard so drank lots and then was fine, went to bed and to sleep and then 2 hours later he did a lot of coughing and brought up a very small lump of sausage and about a handfull of sausage meat that looked like pate, but none of it smelt of sick, so it was as if it had been stuck in his oesphagus for 4 hours before he managed to shift it, and it wouldnt go down so he had to cough it up.

then yesterday at nursery he had very thinly sliced apple at 10, and then an hour later went a little pale, started really swallowing and concentrating hard playing with his tongue in his mouth, so he had a very big drink and then was fine. So to me that sounds like something was stuck there again for an hour?

Lastly last night we had french fries and half way through him eating them, he did an almighty cough and what i call a choke, where he tries to push up with all his might while doing this very long cough, heave because something is stuck and isnt going down, and he brought up nearly a palm full of chewed up chips that hadnt gone down.

(also these foods dont usually cause any problems for him)

does all of this not point out a stricture (even tho his specialist said there was no sign of s stricture just last week i know), or is this classic dismobility of the oesphagus?

sorry for such a long post but i wanted to try and get all the information in the post so you can understand exactly what i mean hopefully

really thankful for any replies

kim xx

reflux

2011-11-01T21:15:21Z

Hi, I dont know if you remember but I posted a few weeks ago about Maisie’s reflux and that she would be having an endoscope and dilatation. Well she has had a stretch today, the surgeon said they have stretched to the next size balloon, she had biopsies taken and an endoscope. They said everything looked healthy and no obvious signs of inflammation caused by the relux but they will know more when… the results are back from the biopsies. I am hoping the stretch will help with reflux and she is on domperidone x4 7mls, 20mg omeprazole and gaviscon. I dont really know how to feel to be honest because although everything may look healthy she is refluxing and is in pain. Just have to see how she goes I guess. She is very sore at the moment and she just simply amazes me! xx

Growing well but poor diet

2011-10-19T21:35:55Z

Peter is 3 and a half now and is average height and weight.

But, he doesn’t eat much at all, we have accepeted this and hope over time he will improve but I worry that he isn’t getting the right or enough nutrients.

Docs only ever seem concerned if there is a problem with gaining weight, speech and language therapy have been no use either.

Should I push for more help or just leave him be

Water Brash

2011-10-19T12:01:39Z

Has anyone heard of the term ‘water brash’.

Just found it in my daughters notes from years ago.

I don’t know why they never told us, I’ve been asking questions for years about the stuff she keeps bringing up. We wouldn’t have worried so much if they’d explained.