Re: Desparate question about eating issues

[Guest guest]

Barbara,

Thank you so much for your response. had the dilatation when he was 2

1/2 and

when they went in this time thats what they were going to do but only found the

grape

and that no dilatation was necessary. The doctor said very similar things about

people

with TEF just always having trouble at the repair site. I am sorry that other

kiddo's have to

go through this but I feel somewhat reassured that I am not crazy and making

stuff up.

We have worked with speech therapists regarding his eating issues but I guess

it's time to

make a search for one with experience with this sort of thing in particular. I

am just so

scared all the time and anxious about him being with anyone but me while he is

eating. I

sometimes wonder if I haven't created some of this with my constant hovering.

Thanks again and look forward to more responses.

Alissa

> >

> > I am new again to the group. It's been a couple of years. My son

> will be 5 in

> > August and he is doing really great, so much better than anyone led

> me to believe when

> > he was a baby. However, there is one BIG issue that scares me and I

> am hoping to get

> > some new suggestions.

> >

> > was born with a TE Fistula, which was repaired at 2 days

> old and then he had

> > fundo and G tube surgery at 2 mths. The tube came out when he was 2

> yrs and although

> > he had no more aspiration pneumonia he has had a lot of choking

> episodes. The

> > ambulance gets called about 6 or 7 times a year with about half

> those resulting in trips to

> > the hospital. He's had all the tests and there seems to be really

> nothing wrong with him

> > physically however, he stuffs his mouth very full and doesn't seem

> to always chew

> > properly. This really happens with bread and cheese products and I

> think what's

> > happening is his mouth gets so full it just sorta slides down his

> throat with no " real

> > swallowing " and then because his esophagus doesn't function properly

> it gets stuck in

> > there and then his own secretions start to drown him. However, last

> week he got ahold of

> > some grapes while I was getting ready and without my knowledge

> swallowed one whole. I

> > sent him to school on the bus, completely unaware of this situation,

> and had to pick him

> > up because he couldn't even swallow water. Well after a lot of

> " firm discussion " with the

> > doctors they went in and found the grape that apparently couldn't

> possibly have been

> > there in the first place.

> >

> > I am sorry to go on and on but I feel frustrated and I don't know

> what to do. After all that

> > he has been through, I don't want to lose him over something

> seemingly so preventable.

> > is a very bright boy and knows exactly how he should eat.

> With the help of his

> > spec. ed teacher, the OT, PT and SLP we have devised a system he

> knows and should

> > follow: one small bite, chew, swallow, clear throat, Empty mouth?

> Okay to start over. It

> > just isn't working. Everyone on his team at school believes it is a

> behavioral issue. I have

> > a gut feeling it is sensory related. Since our overnighter in the

> hospital he has been very

> > aware and eating better than he ever has but I am afraid that once

> the fear wears off he'll

> > go back to his old habits.

> >

> > Again, I am sorry to be so long winded(it's worse in person) but I

> really need some help.

> >

> > Thank you so much for being here.

> >

> > Alissa

> >

>