TOFS forum

DLA - motability?

2010-03-07T13:59:45Z

hi all

just a quick query and wondered if anyone knew or receipt of the motability side of DLA?

have looked on the website for the criteria etc and my youngest has TOF/OA and i receive the care component for DLA and wasnt sure if i would qualify.

she will be 3 in August so not sure what happens etc..

any info would be great.

thanks

liz

achievement thread

2008-05-19T18:33:21Z

Hi all
I hope you dont mind but we so often post our problems,anxieties and questions here ( much needed)but I thought it would also be nice to post our children’s achievements, however small as i am tired of explaining to friends how pleased I am that Millie managed a rusk/puree and they look up at me from their chubby baby as though I am mental for being so ecstatic!No one understands the milestones more than a TOF parent when your child manages something new and sometimes we are bursting with pride and no one around us gets it (especially the parents rachel-I am totally on that one with you!!)

So my proud mum bit for today was that Millie managed a blackberry for her finger food for the first time and some waffle in maple syrup.Well done Mill!
Anna x

Disability Living Allowance

2007-07-28T14:03:12Z

Hi All
We have had a number of members contact us recently asking for advice on claiming Disability Living Allowance for their child. We would like to hear from anyone who has claimed DLA and what your experience was and the outcome so we can give them best advice possible.

Many thanks
Helene

8mth boy decides to stop eating after dilatation. Used to eat great. Please Help!

2010-03-07T19:05:10Z

Hi, my son Otis was born with TOF/OA. His oesophagus was actually connected on the outside but had a small gap inside and was repaired day 2. After a small leak we where home with an NG tube 4 weeks later. He has been on solids since 4 months and has never ever refluxed milk or food. However last week he needed a dilatation after I introduced slightly lumpier food and he chocked. They found a stricture lower down from the OA which they suspected was reflux related. Since coming home from hospital he has been avoiding food more and more and becoming upset when we even put him in his feeding chair. He is also drinking less and less milk. I’m worried he is developing a food aversion as the surgeon said the dilatation went well. Please may we have some advice on ways to get around this. I know we should not force him to eat but since yesterday he has refused lunch dinner and breakfast with only small amounts of milk, maybe 200mls total!

Please can we have some advice on what to do!! How can we tell whether he is in pain when he eats or just mentally avoiding food? We live in New Zealand and as you can imagine, my therapists know near siltch on TOF’s, I think Otis is the only one they have meet.

Thanks for your support,

Worried NZ

Joseph

2009-09-08T19:04:00Z

My name is Sarah, I am Joseph’s mummy. Sadly he passed away on 7 August 2009, he was 3 months old. He spent his short time in Lewisham NICU, as well as suffering OA, he had Down Syndrome and other congenital problems. I miss my Joseph every single day, caring for him, worrying about him, watching him,laughing at his funny little faces and ways…
Unfortunately although I’ve been a member of TOFS since Joseph was born on 30 April, I’ve never had much time to make friends on here, as I live approx 80 miles from the hospital so spent all my time travelling and looking after my 15 year old daughter and family at home, as well as spending every day with Joseph.
I just needed to share sometime with you all, a heartbroken mummy. x

omeprazole problems?

2010-03-08T04:23:08Z

Hi just wondering if anyone has had there children on this and experienced any bad side effects? I’m wondering if this is the reason my son has stopped eating after his dilatation last week. He started on omeprazole and has since been extremely irritable , and gone completely off food and nearly off his milk.

Any thoughts?

Thanks!

reflux meds

2010-03-01T20:57:29Z

Hi all,
Bit of a dilemma,Millie’s surgeon is keen to stop all reflux meds,respiratory consultant wants to keep her on them.At last dilatation (Jan 2009) surgeon saw redness in the oesophagus despite no reflux showing on contrast swallow so thinks she at that time had significant reflux.Like most with silent reflux she shows no symptoms and is maintaining the 25th centile for her weight.Last time we attempted to stop the reflux meds she had a severe narrowing within a week followed by one ambulance blue light,3 stretches.Im naturally reluctant to stop.Can anyone advise when their little ones came off meds and at what age?As usual I am bit muddled and consultant explained that TOFS is relatively unknown so we just have to see what happpens.I as all of us am just keen to avoid any more emergency scenarios.Any advice or shared experiences are gratefully received
Anna x

oral eating need tips and advice, please.

2010-02-15T15:24:51Z

Hi all,

My son is now 9months and has had successful join his first day. He recovered well and gradually took bottle and breast. After a couple of months he developed sever reflux, which an urgent Nissen was needed along with gastrostomy. This was a difficult time with lots of op complications leaving him without oral food for 4wks.

the treatment and complications added to the fact he didn’t take to eating orally again.

We are trying to stimulate he with finger exercises and wiping food on lips and putting some in his mouth. He has a big reflex to vomit. i’m finding it hard to keep up and to try and progress which doesn’t seem to be the case at the moment. we have been going for 7months now and with little progress feeling disheartened on what else I can do for him.

He does suck his thumb but doesn’t place objects near his mouth.

is there any tips on things I can do to help him?

any advice would be helpful.
x

gastrostomy advice

2010-02-22T18:27:57Z

Hi,
Frances is 21 months (TOF/OA/aortapexy)and although she is small 20lb 8oz I had thought she had been doing well with her feeding,meaning that she manages most things, no stickies or reflux although is very picky and sometimes wil not eat. however at a clinic review today with her surgical consultant he expressed concern over her weight gain (or lack of) and after looking at her centile chart in silence for about 5 minutes announced he thinks she may neeed a gastrostomy tube. He’s given her 7 weeks to put on a pound, and if not think that’s the way it’s going to go.
Am gutted, never saw that one coming at all!
Has anyone’s child had a gastrostomy fitted when they have been older, as it seems that from what I’ve read on here they seem to be in situ from birth?
Also, any advice on gastrostomy tubes ie. day to day living - do you have to change anything?, would be appreciated.
Am going to spend the night trawling through forum re gastrostomys as i’ve never took much notice before, thinking that Frances was okay.
It still could be the case that it might not come to this but am preparing myself in advance…..

What a birthday present…...........

2010-02-21T20:25:13Z

I have had a fantastic day today…..........

Harriet is now 21 months old and has a gastrostomy. She has 3 tube feeds a day. She built up a massive oral aversion and we have had to go to messy play and build up slowly.

On Monday we started reducing her milk to stimulate her hunger and today ( my birthday ) she ate part of a prawn cracker and fed herself 2 spoonfuls of food.

We were gobsmacked…......... Long may it continue!

Kay