Re: Martha eating - was New poll for CHARGE

[Guest guest]

Di has zero sense of smell. (always) I think the olfactory bulb is missing.

She can discern tastes and never had any trouble eating, beginning with

the syringes of banana, cereal, white grape juice mix that we pushed through

g-tube.

(with trach in place)

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

,

Your comment that 's taste buds were 'awakening' was really interesting.

If this were true in other cases, it would seem there could be a possibility of

increased sense of taste in CHARGERs who learn to eat later. In fact, now I

wonder if the fact that they have not eaten previously contributes to the lack

of smell or taste in some cases. On the other hand I do know of some chargers

who eat but who do not have much sense of smell.

In our case, one of the things that inspired Kendra to eat was that the speech

pathologist/feeding specialist brought in the most delicious smelling foods.

They were not 'typical' baby foods, but were instead things like pureed clam

chowder. I always thought they really inspired Kendra to want to eat due to

their smell or taste. Kendra was around 4 to 5 years old. She had to overcome

anatomical/neurological problems before she could eat, though.

With , did he have complications that made eating unsafe or very difficult

at first? How did he overcome those difficulties? Had he had esophageal or

tracheal surgery?

mom to Kendra

Re: New poll for CHARGE

>

>

> I wonder if this sort of thing (in 's case, texture) is why

she won't

> touch puddings or applesauce or anything similar? I'm pretty sure

she

> can differentiate smells --- unless she " smells " the flowers we

grow

> because Andy and I do. Martha

>

>

>

>

>

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7/1/07 12:19 PM

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>

[Guest guest]

,

Does choose foods based on their taste? In other words is taste a strong

motivator for her?

Re: Re: Martha eating - was New poll for CHARGE

Di has zero sense of smell. (always) I think the olfactory bulb is missing.

She can discern tastes and never had any trouble eating, beginning with

the syringes of banana, cereal, white grape juice mix that we pushed through

g-tube.

(with trach in place)

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi ,

Sorry it's taken me so long to respond but Henry and I went to our

cabin from Wed thru today Sunday.

was born with a sub mucus palet with a high arched groove in

the center of the roof of his mouth. He has problems with feeding and

asperating formula into his lungs. He had a double arotic arch of the

heart and when they repaired it they nicked nerves that basicly were

not suppose to be where they were. (Something common in CHARGE which

we now know.) Keep in mind was born in 1975 and went

undiagnosed until he was 14. I believe one nerve that was nicked was

the frantic never. Anyway after heart surgery he developed more

severe respatory problems and digestive problems. Part of his

intestine stopped working. They divided his stomach to by pass this

part of his stomach and inserted a feeding tube lower into the

intestine. I believe he was trached at this time also. He had the

trach until the age of 2 and his stomach surgery was not reversed

until the age of 4 right before we met him in the institution. Also

during the heart surgery the better section of the arch was

compramising his airway. From what I understand it was pressing

against his airway not that it was cutting air off completely but

restricted his airway. Through testing he had done on his heart in

his early teens it was found that the section of aortic arch that was

left from the early surgery had a narrowing in it which caused him to

have a difference in blood pressure from upper to lower extremity.

The difference was just small enough to keep him out of open heart

but it was a watch and see issue until he reached full growth. If the

corarchtation increased just slightly more would have needed

more surgery on his heart. With lots of prayers it remained the same

through to the time his growth stopped.

Now his eating and sense of taste. definitly has a full and

complete sense of taste. He loves food. He does not have any sense of

smell though. You can pass a very potent dead skunk on the road and

get no reaction from him at all. How for his eating and sense of

taste it was explained to us by the doctors was in the beginning

had no sense of taste much like a baby. We had to build his way

up from bland to gradual introduction of different tastes and

texture. At the age of 5 he was eating baby food, pureed. Those first

months was a test of wills. He didn't want anything put in his mouth.

From infancy he had been trained not to put anything into his mouth

because of the trach and g-tube. I can very well believe that he

thought something terrible was going to happen if he did. Don't

forget he was in a institution from birth till 5 1/2 years. He hadn't

experienced living in a normal home with parents and there we were

trying to stuff food into him. He was afraid and couldn't communicate

well enough for us to take that fear away. We had to force the issue

of swallowing to show him nothing bad was going to happen. The

ability was now there. Once we got him past the fear it was like a

new world opening up to him. In the beginning I had to document every

spoonful we got into him. He was not eating by mouth at all when he

came to us the end of May and by Nov. of that same year he was eating

enough by mouth to sustain his weight so his g-tube was removed. It

was not a easy endevor, the whole family was involved including his

sisters, but it was worth every second of the fight. I could have

written a book on the food games we made up.

mom to (31)

> >

> > )

> >

> > thought he could smell too - I guess that makes sense

because

> he's never known different. We put some different essential oils

in

> cups and some empty cups and had him sniff them, and his

responses

> were more than arbitrary.....

> >

> > have you ever tired that? (I think we used lemon flavoring,

mint

> oil, vinegar, water, milk -) He can get the other sensations

> (burning). He is specifically prohibited from being a biochemist

> because of his lack of smell. Interesting stories from Anatomy

and

> Physiology about his lack of smell - not minding the smell of

rot,

> formaldehyde and stuff like that.......

> >

> > smiles-

> > yuka

> >

> >

> > Re: New poll for CHARGE

> >

> >

> > I wonder if this sort of thing (in 's case, texture) is

why

> she won't

> > touch puddings or applesauce or anything similar? I'm pretty

sure

> she

> > can differentiate smells --- unless she " smells " the flowers we

> grow

> > because Andy and I do. Martha

> >

> >

> >

> >

> >

> > ----------------------------------------------------------

> ----------

> >

> >

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.5.476 / Virus Database: 269.9.14/883 - Release Date:

> 7/1/07 12:19 PM

> >

> >

> >

[Guest guest]

I hope you had a wonderful time at the cabin!

Thank you for your reply. It is very interesting about 's travels to

eating by mouth. Somehow I did not know he had a double aortic arch. Kendra

had this as well. I know of a handful of others that have CHARGE with this

condition also.

It is wonderful that he did not have to have the surgery for the coarctation.

And that the impact on his ariway from the remaining section of the aorta did

not cause extreme difficulty for him.

Thanks again for sharing the concept that the taste buds can wake up. Maybe

writing that book on the food games is still a good idea!!

wendy :-)

Mom to Kendra

Re: New poll for CHARGE

> >

> >

> > I wonder if this sort of thing (in 's case, texture) is

why

> she won't

> > touch puddings or applesauce or anything similar? I'm pretty

sure

> she

> > can differentiate smells --- unless she " smells " the flowers we

> grow

> > because Andy and I do. Martha

> >

> >

> >

> >

> >

> > ----------------------------------------------------------

> ----------

> >

> >

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.5.476 / Virus Database: 269.9.14/883 - Release Date:

> 7/1/07 12:19 PM

> >

> >

> >