TOFS forum

hospital trying to keep my son in til he feeds but he has oral aversion!!!

2010-03-11T20:57:02+00:00

my son benjamin born on 3/12/10 lon gap oa, repair done at 7 weeks old,after op he did take a little orally and the rest gastrostomy fed, so we was discharged on the 30th jan, 10 days later we ended up back in hospital as an emergency with a stricture, he was admitted back in and had the replogle tube back in his nose being flushed every 15 mins, it was back to square one again, he had dilatation 3 days later and was discharged the next day, but after this he has never taken anything orally, all though i do try.
On the 28th feb, he got readmitted as a emergency once again, tube down his nose and waiting for dilatation…he had this done on the 3rd march, but the surgeon was really unhappy he wasn’t feeding orally and wanted to keep him in for another week so they could concentrate on his feeding and dilatate him again a week later, well he didn’t feed which i knew would happen and now they r saying he can’t go home until he is at a certain level and the nurses can concentrate on him!! well this is rubbish as speech therapy agree with me and think he should be at home where i can give him my full attention and work with him, and they know it is going to be a very, very long process as he has complete food aversion, and surgeons think it will happen over night!!
I am so annoyed with them, benjamin is 14 weeks old and has only spent 2.5 of them at home, i live 2 hrs from the hospital and also have a 5 year old so cannot stay there with him, i am at the point where i am going to tell them i am going to take him home, he is on a childrens ward, and the nurses don’t sit and do these things with him, and it is no good him being stuck in a cot 24 hrs a day, any advice please xx

colon replacement - help please!!!

2010-03-11T11:36:23+00:00

Our daughter has been in Hull nicu for 11 weeks now, on tuesday she had 16cm of her colon used to fix her long gap. At present we are walking around a bit dazed still by what our poor little girl is going through. I wondered if anyone could give us any advise on what to expect now and in the future, as we keep getting mixed messages from different people from the hospital.
many Thanks
Andrew

DLA - motability?

2010-03-07T13:59:45+00:00

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

2008-05-19T18:33:21+00:00

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

2007-07-28T14:03:12+00:00

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!

2010-03-07T19:05:10+00:00

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

2009-09-08T19:04:00+00:00

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?

2010-03-08T04:23:08+00:00

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

2010-03-01T20:57:29+00:00

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.

2010-02-15T15:24:51+00:00

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