TOFS forum

Anyone else have one twin with TOF and the other not?

2008-03-03T22:09:02+00:00

Hi I’m new to the world of twins and TOF and wondered if anyone else has been in the same situation?

Had twin boys by c-section on 1st Feb but within an hour or so had one of the twins whisked away because of breathing difficulties.Just thought he needed his lungs clearing out because of the c-section and that he would be back with me shortly. So it came as a bit of a shock when the dr said Luke needed a major operation as his windpipe & foodpipe were joined up - that the best place to have that done was Leicester & that Luke would be transferred there asap. So I only had a few minutes with Luke that first day and didn’t get to hold him properly until a week later when he was out of neo natal care & in high dependency. He has been in so many different wards now and still hasn’t been home that I’m beginning to wonder if he really is my child! Everything seems to be a blur and I find it hard -wanting to have some normality at home with his brother Joshua to counterbalance the stress of dealing with so many different nurses looking after Luke & not really knowing what’s going on & what’s holding Luke back.

Fay

Chest Infections - Any Advice?

2008-09-04T21:28:03+00:00

Dear All,
Kyle has had as many chest infections since last year as I can remember and they seem to be on a 3/4 week cycle, on may occasions enough to hospitalise him as with many TOF children. It has been suggested that it could be reflux related as a pH study last year showed severe reflux. However if he is still refluxing he most be able to tolerate it alot better as he is like a new child in that no screaming since coming off dairy, eating well and a good weight gain. He is on ranitidine and gaviscon for the reflux but unfortunately they want to repeat the pH study next week as the original one was done at another hospital. He is going in for an MRI for his back next week so while he is out they are going to locate the pH monitor. They mentioned the Nissen if it is as bad as it was last year and I am extremely worried and nervous about next week as I really don’t want the Nissen! Has anybody else experienced lots of chest infections with an explanation other than reflux?

Kind Regards
Suzanne

Did any other TOF Mum get Polyhydramnious and did it cause problems??

2008-05-21T16:33:53+00:00

Im just wondering whether any other TOF babies mums suffered from the extra fluid, Polyhydrmnious??

I had 2 water drainages whilst carrying Lucy as I got so big and uncomfortable. In the end I carried Lucy to 38 weeks and 3 days. I suffered from Pubic Symphasis Disfunction and terrible back pain whilst pregnant. Also suffered with Cramp in my hands which they thought was Carpol Tunnel symdrome and Itching all over my body.

Now Lucy is 2 1/2 It has been confirmed by MRI scan that I have 2 discs with wear and tear in my lower spine with the cartilidge between them buldging touching the spinal cord, 2 Sacrum bones that are worn too. They did an operation last sept for Carpol Tunnel Syndrome but a month ago I found out its not that and have more than likely got discs in my neck that are worn causing the numbness in my hands!

Ive been having steriods via an epidural into my lower back but now they want to do them into my neck. This carries more risks though!

As for the Itching I still itch 2 years on and they havent a clue! They have done tests but only found out that im allergic to prawns! I take anti Histamines daily and stome stomach ulcer tablets too. They help but not a cure!!

To top the lot off Ive been having trouble goign to the toilet since having Lucy and now they have found that where my womb was stretched so much, my cervix and womb are tilted towards my back passage causing partial obstrucion!

Im just wondering if anyone out there that suffered from Polydramnious has suffered any symptoms I do??

If not Lucy at Hosp its me lol

Look forward to your replies lol!

Teresax

Development problems…is they any advice?

2008-06-13T22:58:06+00:00

My little girl Amy is 3 and she has started to scream with a blank expression. She is developing numbers, colors, write numbers, point and says numbers, has fine manpulaitions skills in her fingers. . More brighter than she should be for her age, according to the stepping stones.

Amy as Tofs as well as problems with muscles in her feet and she has been referred to a specialist and physic-o and is also getting a pair of special shoes. She is unable to ride a bike, and trips up a lot, over nothing. She has very flat feet.
She suffered from chest infections, when she has been out in the wind.
They is a lot of food Amy can not eat, but we make smoothies, yougerts, and mash food up still. Amy still has her TOF cough. She had some major operations.

Has anyone else had problems with their TOF Child or if you have TOFS, have you experienced any of these problems?
I think the worst thing is other parents making comments about Amy falling, or screaming, saying she must be spoilt etc..., as I have two other children at school and dread been in the playground.

Thanks Joanne

Twin mums-advice please

2008-08-02T07:51:39+00:00

Hi
Anyone got any useful tips on how to stop the tantrums at feeding times as millie(TOF/OA) is desperate for the food Issy has , like toast, but just cant manage it and chokes so for example, issy has a bread stick and Millie has a rusk but she gets really upset when she sees Issy with different food.How do others manage the situation?
Anna x

advice on moving from puree to mashed food

2008-08-22T16:59:22+00:00

just wandreing if anyone has any advice, freya is 16 months old tof/oa she’s had 10 stretches, she’s not had a stretch since november. she eats all bite and disolve food but when it comes to meal times she can only manage puree still. i had a visit from the speach therapist who has advised me to try mashing food. i have in the past but she eats a bit then it comes back up. im starting to wander if there is a problem with her stricture or its just that she wont be able to eat normal food till she has a full set of teeth and is talking so i can reason with her and explain that she must chew lots and lots!!!

just wanted advice on how others have overcome moving from puree onto mashed food. i feel quite down about her feeding situation since ive seen the speach therapist. i was quite upbeat about it before and we were getting on with her puree food nicely. its really upsetting to see her gagging and bringing her food back up when she is so keen to eat it.

i’d really appreciate any advice, i know these health professionals mean well but they come in and give some advice then walk away, and your left to get on with it. i feel quite isolated with this situation as friends and family havent a clue what its like living with this condition and having to make your child sick to help her bring up the food that has got stuck.

sorry to moan on. am having a bit of a bad week.

Rachel, Freya
x

Finger foods which worked for us…

2008-09-04T10:06:56+00:00

Dear all,

Here at TOFS we need your help. We know that many of you face the challenge of feeding your little ones on a day-to-day basis and lots of you have posted your experiences on different parts of the forum.

One of our members has suggested that it would be be useful to have a section with parents’ tips for purees and starting different textures, recipes, or finger foods which work for your TOF.

I’ve posted some of the ‘official’ advice on weaning as per our literature on the bottom of this for those of you who have time to read - but I realise this is only the tip of the iceberg - your experiences are really important.

PLEASE POST ANY TIPS YOU HAVE ON THIS THREAD SO WE CAN START TO COLLATE THIS INFORMATION.

This will be a valuable resource to new parents.

With thanks in advance,

Diane

EXTRACT FROM TOFS LITERATURE:
Our advice is to introduce pureed foods first when you feel your child is ready and observe your child’s ability to cope. Experiment with consistency as texture may have to be adjusted. Allow more time between spoonfuls for food to pass down. Once they’re coping well with pureed food, progress to mashed food before introducing lumps. It may take several months to reach this stage - much longer than would normally be expected. And their ability to cope may vary from day to day. Lots of you have found it easier to blend your own food to a suitable consitency as even the first stage varieties of commercial baby food are too thick for some babies.

Finger foods can be a problem and it can be very discouraging to see your friends’ babies happily chewing pieces of bred and rusks when yours is still only managing runny things, but then again this may be much later with a TOF child.

Our literature advises puffy crisps (eg Wotsits), meringues or soft fingers which dissolve in the mouth - ‘bite and dissolve’ foods.

croup

2008-08-29T14:21:05+00:00

Just wondered if anyone else had experienced frequent bouts of croup with their child.
Ben is 12months old and has had croup 3 times. The first 2 times he had to stay in hospital overnight for observation but the 3rd time he was given steroids and sent home.
I am concerned now that the autumn is nearly here that he will get it again.
Sarah

Best wake up call ive ever had.

2008-08-12T21:15:37+00:00

this morning i had a lovely call from the hospital to say that the camera has returned and they can start booking everyone in for their ops so devin is lucky to be the top of the list and will be going in on monday.have to leave home at 7am to get to the hospital by 930am.yay its finally going to happen.
Jo

feeding solids problem

2008-07-25T06:29:42+00:00

I have been having problems with devin, 14mths, when feeding solids for the last 3-4mths.
he will eat his food some days then is garunteed to vomit the meal up within a hour at least once a day.

to start with i thought that this may be a stricture, surgeons took him and did a scope but his oesphagus was fine and wide, they dialated while there so he didnt need to go back in for a while now his oesphagus is just like a “normal” persons.
last week this was happening alot to the stage that he was taken to hospital for dhyration and had a baruim study done this came back fine too.
the food is not curdling so it is not making it to the stomach or if it is it is not there for long.

i am wondering if anyone else has experianced this before and what was done? i am starting to get to the end of a rope and getting sick of being told he is “fine” when i know he isnt, due to the loss of weight each week, the waking for feeds in the nights and all the crying from devin.

thanks jo