Re: Jeanie Colp - Desparate question about eating issues

[Guest guest]

I must say that Garland has some of the same problems. He will be 6 in

November and still has eating habits of a 3 year old. We cut everything up into

small bites and monitor every bite. When he has enough in his mouth we make him

put his fork down. If he will not do that then we take his food and feed him

ourselves. At school he is not allowed bread for it gives him the hick ups that

results in spiting out every thing in his throat.

We have had two real scares in the last four months. We had 911 dialed but had

not pressed send when the apple finally went flying across the room. That even

scared Garland.

I really do not know if there is a solution to this. I know that if like

Garland he is delayed then it will be a matter of time and monitoring every

bite. Garland still does not drink from a regular cup. We use a straw or a

sipy cup if we don't want his drink all down the front of him.

I only hope this helped some.

, Randy & Garland Goodwin

---- Weir kawfolks@...> wrote:

=============

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

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

Hi, my daughter is 5 yo with CHaRGE and she has had a Fundo

and was tube fed till 3 and a half years old, she eats almost

everything now but cannot swallow meat, even if she chews it to a

pulp. She also crams her mouth with food and frequently spits a

large mouthful out when she feels like she might not be able to

handle it. She can also have food in her mouth for ages and I also

used to have to clear out her palate before bedtime. She has never

been in serious trouble with choking but it is still a huge

possibility since she flaps her hands while she eats, she has a

teachers aide at school with her at recess and lunch time to watch

her just in case. I am always aware but try not to hover around

her. I can't even help you or give you any suggestions, but I

completely understand what you meant when you said " I don't want to

loose him over something seemingly preventable " , I feel the same way.

I think that with the fundo and she had a double aortic arch that was

wrapped around her oesophagus, so I think this may have affected her

swallowing and she had to learn how to swallow, she still has to

think about it, which is hard to imagine as it comes so naturally to

most people. So my personal opinion is that it is a sensory thing

for them and not so much a behavioural thing.

Good luck and I am sure you will get some good advice here.

Sydney Australia

> >

> > 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

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

>