Hi just afta some experience i have always cum 2 this site 4 advice but havent had 2 post before!! Our TOF/OA daughter 4.5yrs has in the last 18mths been through 2 nissen fundos, lots of swallowin problem, 5mths of hosp test then her fundo reversed as she couldnt cope wif the wrap & really struggled 2 swallow & was poolin her saliva ova night & always havin continuious stucks. since may when it was reversed shes been swallowin much beta & the stucks have calmed 2 odd one here & there only a few times a month. As she is back 2 full reflux & always spittin up she has been 2 see gastro who ordered a manometry test 2 check the degree of swallowin a 24hr PH impedance while on meds 2 measure how much acid & non acid is happenin 2 see if her dose is strong enough & the usual endoscopy wif biop’s, well long story not short while in day surg recoverin he came 2 us wif pics & afta showin us her TOF repair which looks good, her internal scars from fundo, a lump found in her stomach near bowel which could be tissue from pancreas he then moved onto the oedophagus & explained wif the pic about the colour changes & that he is suspecting barretts oesophagus & asked do we know wat that is ‘yes’ was my answer & i was shakin askin wat does this mean, his face looked so serious & he himself looked surpised by this change from her last scope which has oesophagitist evidence but he didnt say oesophagitist this time he said it looks like the cells are changin & stomach linin cells r growin into oesophagus which indicates barretts!! He said we’ve just got 2 wait 4 the biop results before he can tell us more i tried 2 ask wat does this mean for her & he said he cant say until he knows results but her options at this stage are limited cause we know she cant tolerate a fundo :-( im tryin not 2 think too much about it but im worried, we get results in a wk but in the mean time my head is spinnin, has anyone elses little TOF bein suspected or confirmed barretts oesophagus?? Im tryin 2 be positive but wif his experience & the look on his face it makes me think he must be feelin his suspisions are in the right direction but just gotta wait a wk & see :-( apologise for spellin errors as typed on my phone & it proved difficult wif a sleepin sick TOF on my lap lol.

Hi Lexis mummy,

i couldnt help but reply to your post once ive read it, but no im sorry i dont have any experience of barretts oesphagus.

i really feel for you and ive got everything crossed for you that its good news when they have the results back for you.

hopefully someone can offer some of their experiences - have you searched for barretts on the search bar at the top? im sure a while ago i read someones story about it.

keep us updated with how you get on, and good luck

kim xx

Hi
I know last year there was a post on here about Barretts so do a search as that was highly susppected and turned out to be negative(not Barretts). After a tofs conference a few years ago where someone raised the issue of Barretts in a workshop we all went away paranoid.I asked my consultant about it and he said there was a less than 1% chance and that it is something which develops over a long number of years which makes me think 4 and a half years some of which have had the reflux under control with the nissens would suggest it couldnt be barretts.Obviously I m not a doc and really feel for you say we ve all had that serious medical ‘look’ and its terrifying particularly when you have to wait for results.Keep us posted
We re all here for you
Big hugs
Anna xx

Yeah Anna thats wats keepin me positive thinkin surly she hasnt started developin that in such a short period, he did mention u only see this in about 1% of cases, i know Barretts is a condition that deteriates over time so if the biopsies cum back positive at least its detected early & a management plan can be put in place. I just wished he said hmmm saw some redness so gotta wait 4 results 4 more information…..then i wouldnt have gotten that serious vibe from him & wouldnt be sittin here silently freakin out. Its hard when family ask how u went & u say he found some abnormalities & we need 2 wait 4 the results & they just freak out askin a million questions so we’ve had 2 tell them 2 calm down & like us just wait it out!!!
If its not barretts though i do wonder wat it is cause in picture u could really distinguish the colour difference hmmm only 6 more sleeps & we hopefully have more information.
Thanks ladies xx

Hiya, Im sorry I don’t know anything about Barrets oesphageus but I really hope you get good news. Ah your little girl has really been through it hasnt she, brave little girl. I hope she is ok, keep us posted.
Take care. Lisa xx

Hey, just wanted to say thinking of you.  I think all we TOF mums can relate to that sick feeling you get when something is wrong, and all you can do is put your faith in your surgeon.  But you know, our children are tough.  Be strong.  You’ll both get through this, I’m sure of it.  Lots of Love.  Sionedx

Hi Ladies,

Thank you all for such kind supporting words in a time filled with worry and stress.

Here is an update on Lexi’s appointment, so she is confirmed to have the intestinal/stomach lining growing up her oesophagus but the biopsies taken have so thankfully came back negative in containing intestinal cells which leads to Barretts Oesophagus so Dr Hammond (gastro) says she needs to be monitored closely for future changes & have regular endoscopies so by close monitoring you’d think 6mth or annual but no he said every 3-5yrs!! We were confused saying but you said close monitoring & he said for Barretts changes this is close monitoring as its a very slow progressing change in cells so she is currently like stage 1 out of like 4-5 stages which she may or may not reach, dont know how common this growing in the oesophagus is for TOFs but i understand they are at higher risk of developing it.

Then there was the lump in stomach which biopsies were taken & again are negative of anything & he’ll watch that with the endoscopies.

The results from manometry confirm she has severe swallowing issues but we know thats common in TOFs & they just learn to deal with it as she has to, she just needs to chew her food properly & drink with eating which now at her age she already manages herself!!

Now the 24hr PH impeadance he only roughly had the results but said he got the info he needed & concluded she has severe reflux which we knew from 2 previous standard PH studies, i asked how many episodes this time & he wouldnt say as he said its not important as we know its severe (but i was interested in knowing a number anyway) he just said pretty much most of the time shes refluxing inside but whats more important is the mg of nexium she is on is doing its job blocking the acid really well pretty much 99% of the time.

So where to from here well she can have another fundo operation to do a loose wrap in a 180 or 240 version but will it work they dont know, so we have decided no wrap for now as her meds are blocking her acid so her damage risk in oesophagus is reduced & she can swallow better without wrap in place, so in a nut shell she just has to learn to live, accept & deal with her reflux & see how she goes over the next 12mths.

Now when i explained this to her she said ‘but i dont like having my blunk blunk’ (her term for describing the reflux going up and down) & i said well your just going to have to make friends with it & so she says to her throat ‘ok blunk blunk we have to be friends & im sorry’ fricken hilarious from the mouths of babes i love the little sayings she comes up with!!!

So for the first time since she was born 4 and a half years ago we have no hospital appts/tests/reviews & it feels strange its great but just strange like ive left home without saying goodbye…......but over the next 12mths if we have any concerns before her next annual appointment with gastro then we are just to phone either Dr Hammond (gastro) or Dr Khurana (surgeon) to get her seen to otherwise thats it we just carry on as we are & finally move forward!!
xxx

Great news!Hooray and you summed it up perfectly.When you get a break from hosp it does feel ‘like you ve left home without saying goodbye’ but after a while the confidence to cope without them increases and life gets a bit more normal. So so pleased for you!
Anna

Wow, I am so glad that has worked out for you all. What a stressful time.
Enjoy your freedom now, good time of year to start.
Jody x

ahh so pleased for you, thats all fab news xx

Just one word.  Brilliant!  Happened to me last August.  Mum says she has never seen such a big smile on my face.  But you’re right, its really weird! I still am that person who would think nothing of putting my baby in the car and driving 200 odd miles to Alderhay ‘cos that’s where I feel safe.  I don’t think that will ever go away, and its kind of nice to have it as a safety net.  Enjoy!  Have a fab Christmas!  Sx