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

Thanks, it is in some way comforting to know someone else is in the same boat.  I just hope someone on the site can give us a miracle cure which will sort our kiddies out in time.  The hospitals tend to go for the quick fix but I just hope we dont get to that.  We do have an SLT and a physio but they know little about the condition and are shy to give advice.  The advice I have been given is stop solids altogether and just try milk, but at this stage he is not really even interested in that. 
I hope you dont have to go down that track with your little girl. x

Hi Asha
This has prompted another thought. Lots of us have had success with distracting our children to get them to eat or drink. Something bright and noisy on the tv and just slip the food/milk in. Just try for little bits at first, no pressure. I have answered more on the other thread too. Also you can get some calorie powder to add to his food if he doesn’t eat much, you will need a dietician or even a gp can prescribe this.
Good luck
Jody

Hi Asha

I totally know how you feel.  I live in Taupo, NZ, but have to travel to Rotorua for some of our care and specialist and Hamilton for the rest.

My little boy will be 3yr in 7 1/2 wks and I had the same problems you are having now with him at 7mths.  Turned out I had to go back to feeding every hr small amounts and start streaching it out.

Are using formalar or breast milk?

As Jody said bring bright colours to the table when feeding this will help with distraction a lot.

If you ever want to chat to another kiwi send me a PM and we can talk.

It does get better but its knowing what to ask for here as it is impossible to find a dr who knows or understands TOF.

Jo

Yes they have put him on Omeprazole and Joe dad to Otis is sure that this is the cause of his pain.  He has stopped burping and has loads of wind since coming home from the dilatation.  They want us to go into our local hospital this am for a look and rehidration….... not sure what they will do.  Our surgeon who is in Auckland (7 hours away)is away at the moment so havent been able to speak with anyone.  I’m hesitant to go to our local hospital as they dont have as much experience.

Has she ever had any problems with burping on this?  We cant think what else it might be.  Its a guessing game really, or another endoscopy. 
Thanks for all the advice! Really appreciated.

Asha

An update on the situation.  After a console with the Doc today, Otis is going to have an endoscopy on monday (it’s the earlist they can fit him in and if he stops drinking he will need to be on a drip till then! Fingers crossed!).  They are certain its not the omeprazole but we are still are unsure.  He is drinking some milk (200mls) and had 1/4 pot of choc yogart which he has never had before so thats a start.  Your right Jayne, its a roller coaster ride!!  I’ll let you know how we go.

Oh Asha, I am so sorry to hear little Otis does not want to eat.  But yes the choc yoghurt is great:)!  It is a a rollercoaster, but stay positive.  The little things like choc yoghurt are great, lots of praise and he will probably try little other cold things.  I used to juice all sorts of fruits and make ice blocks, Bernadette loved them. Also I would make really soft pasta, and cover it with pureed spinach, garlic, basil and cream. To this day she still asks for Green Noodles!

Bernadette was never able to burp, or throw up. This may be common with tight anastomosis. Not sure though.

Thinking of you
Delyse

How is Otis going with his food now? I just wanted to say that my daughter Sophia always went backwards with her eating after a dilatation or endoscope. The surgeons always said she might have a bit of a sore throat for a week, but Sophia’s bad eating would continue for up to 2 months after each dilatation or endoscope. She would eat next to nothing and live on pediasure mainly. What she did eat she would get stuck and raspy and cough and splutter. Finally we ended up having a modified barium study and it showed she had major incoordination of the oesophagus. We believe that when she has something invasive done to her oesophagus (dilatation/endo or even a big sticky) it knocks its rhythm out of whack and it plays up in a big way with incoordinated muscle spasms. So each time she has a procedure done we just have to be prepared and ride it out until she finds her rhythm again. We have found that peppermint can ease the problem as it is an antispasmodic or mylanta works ok as well.

Other’s have mentioned problems burping or throwing up, we have this as well and with Sophia it is due to her incoordination the muscles contract above the burp keeping it trapped down.

Hope everything is fairing okay with you now
Jane