Jeanie Colp - Desparate question about eating issues

[Guest guest]

This sounds like Jeanie's daughter MacKenzie (although I don't think she's

had any emergencies/choking episodes) - she also stuffs a lot of food in

there as well. Jeanie you there?

I think it's likely got a sensory component as well, I wish I had more to

offer, but Kennedy is still tube-fed.

>

> 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

>

>

>

--

Weir

Personal Web Site:

http://chargesyndrome.info

The Adventures of Kennedy Blog:

http://chargesyndrome.blogspot.com

Secretary, CHARGE Syndrome Foundation Inc:

http://www.chargesyndrome.org

Email:

lisa@...

" It is far better to grasp the universe as it really is than to persist in

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