TOFS forum

TOF baby/child with little or no problems..?

2012-01-18T20:14:35+00:00

hi everyone, just wondering if there are any mummys out there who have a TOF baby or child who has had little or no symptoms or problems. i consider myself very lucky i have a 14 months old little boy who was diagnosed with TOF/OA 24 hours after birth. he was taken to sheffield childrens hospital had 6 hours of surgery to repair and a 2 week stay in the neonatal unit before being allowed home in time for christmas he was sent home with gaviscon infant sachets to have in each milk feed and ranitidine for reflux but was told he could come off them at 12 months hes had no reflux what so ever, he eats toast, crisps allsorts really the only thing i found him struggling to eat is potatoe/chips they get stuck but he copes very well and clears it himself without getting upset it just doesnt faze him at all! the reason i am asking is often when looking through the forums it seems very daunting there are alot of very poorly boys and girls that unfortunatly have alot more problems assosiated with TOF i almost still feel quite alone as i havnt a clue what any of the things they are talking about the medicines operations and names for things etc the only thing i can say bothers me about his condition is the stares and comments due to his ‘Tof cough’ the constant ‘Poor boy out in this weather with that cough’ ive even had a women come up to me and a resteraunt asking me about him! ‘Oh he sounds very poorly’ she said so i said ‘no actually its just part of a condition his is born with, hes fine’ she looked shocked and just replied ‘oh…well..i hope there helping you with that’ before sheepishly walking back to her seat!! anyway would be nice to hear from any other mummys or daddys who have a similar situation with a little one xx

Best antibiotic

2012-01-31T17:50:23+00:00

Hi I am new to the TOFs community, my son was born in March 2011 with a tof/oa but no other conditions. He too, as is obvious on the forum has constant chest infections and is always given amoxicillin by our gp, it always seems to take a while to work, are there any other antibiotics that seem to work better for children with tofs.

suggesed dilation

2011-07-15T17:00:10+00:00

Hi,

I joined Tofs just after my grandson was born in 2009 and found the information and support invaluable.

Oliver is now 2 and a delightfully happy little man. He was born 11 weeks prematurely weighing about the same as a bag of sugar, he had an op to join his oesophagus to his stomach within 12 hours of birth. He had around 10 dilations within his first year, his food had to be pureed until he was around 18 months then was gradually able to cope with lumpier food. When my son and daughter in law took him for his 2 year check the paediatrician was thrilled with his development, as are we all!

It was suggested during his last checkup that they could opt for him to have another dilation in the next few months as he still has some problems swallowing some foods unless they are cut/mashed into tiny pieces. He understands that he must chew everything very thoroughly and drink juice or water between mouthfulls.

Has anyone any advice to give?

Refusing to eat meals

2012-01-20T21:24:11+00:00

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

raising funds for tofs

2012-01-28T13:17:35+00:00

hi there
i have just found out a way to help raise funds for tofs with every purchase in ebay heres the link it only a pound but they will all mount up.

http://donations.ebay.co.uk/charity/charity.jsp?NP_ID=13852

Diane Connors mummy

tummy ache

2012-01-26T22:53:53+00:00

Begw’s gripe…for practically the whole of this month has been tummy ache. But she’s also been pretty full of mucous, which she tends to swallow. Last night she threw up and all this thick mucous came back up. Is it at all possible that it’s festering in the stomach? Does it not go through the digestive system? It’s something I’ll ask our consultant, but thought someone out there might know…...When they did her TOF repair, they also found a couple of occlusions in her small intestine….but her surgeon said that stitching the intestine back together should have no effect on her future health…and she seems to have a poo everyday no problem. Oh you know what its like….when they start complaining about something a whole pandora’s box of likely causes start opening up in my head! Sx

between a rock and a hard place

2012-01-27T21:14:04+00:00

hello all.
the forum has been quite quiet recently, i hope that means every1 is doing well.
i feel, as my title says, stuck between a rock and a hard place, and where else to vent than tofs!
as most of you probably know, fran has a laryngel cleft as well as tof/oa, repaired day 1.
she gets her chest infecs like every other tof, she is actualy quite good at eating.
my problem is, her resp cons seems to think she gets the chest infecs because of aspirations due to the cleft, however from sept to dec last year she had no chest infecs, no abx, amazing, and healthy, and put on weight, however today we are back on abx, its been brewing since monday so inevitable really. she also had abx in december.
my rock and hard stone place is I know all tofs suffer but her consultants err on the side that the cleft is causing the infecs, i dont think it is, but if this continues he will put her on thicknd fuids, whch she hates.
sounds crazy but because of this cleft she isnt allowed to be a normal tof?
i really debated takin her to dr today, (and she did need abx,i knew deep down she did) beause i think her cons will see it as cleft rther than nomal tof.
i hope you all understand what i mean.
jayne xx

Manuka Honey for treatment of reflux, heartburn

2012-01-23T13:02:21+00:00

Hi everyone, hope you and your little ones are all well. My mum was recently diagnosed with terminal Metastic Breast Cancer, we have been researching all kinds of homeopathic treatments and foods which kill cancer. While doing this I came across treatment for GOR using Manuka Honey. I already knew about the benefits of the honey but not specifically for GOR. Maisie loves a spoon of honey so it will be easy to give it to her, but it shouldnt be given to babies under one. Her reflux symptoms are flaring up again after her stretch in November so I’m going to try this and see how we get on, I will still be giving her the prescribed meds. Manuka honey has a UMF rating on the front and you should use rating between 10 and 16, it is exepnsive but if it works its worth it. The honey can be used for so many conditions. For treatment of GOR put one teaspoon on a piece of bread, it needs to be on bread to take the honey to the lower part of the oesophageus before meals and bedtime. If it is taken before mealtimes it will not be that harmful to teeth. I cannot put the link to the website on but will keep trying, I have read it on many websites though. Search Manuka Honey and reflux and it is eay to find. I will keep trying though. Take care Lisa and Maisie. xx

not really a tof matter more financial

2012-01-19T13:44:56+00:00

Hi there
A friend of mine told me about this today :if you are on a low income with a disability or long-term illness, or those with children you could be intitled to help with gas/electric

http://www.decc.gov.uk/en/content/cms/funding/whds/whd_broader/whd_broader.aspx

i thought it was worth sharing as it all helps!
Diane Connors mummy

statory assessment requested today

2011-12-02T16:09:19+00:00

Hi everyone,

just thought id update you all. we had a meeting with Hugh’s educational pschologist and his nursery today and weve started the process to request a statory assessment to see if he will have a statement for when he starts school in september.

His EP says she cant see why it wont be accepted but its a 6 month process, so fingers crossed.