Katapodis-oral defensiveness

[Guest guest]

Dear ,

I was glad to get your note to the CHARGE list and am happy to answer. Right

now I'll give some brief information and

then I will fill in more details later if you wish. But, I hope this will give

you a more clear idea of these

approaches that have helped Kendra.

First: thermal therapy was used by a speech and language therapist trained in

feeding disorders. She used a relatively

simple technique of gently rubbing ice (cubes) around Kendra's mouth to awaken

the nerves to help Kendra know how to

move her mouth. This was the first step in Kendra accepting something in her

mouth and the therapist moved then to

popsicles. She stressed that while it is a 'simple' technique, it should be done

with caution to be sure the child is

not 'burned' by the ice.

Second: the same speech therapist then remarked that she had had some success by

adjusting the hyoid bone (in the

neck-shoulder area) by gentle massage. Again, it was a simple technique but the

therapist said that she was sceptical

of some practicioners doing this as there could be complications. If you like

I'd be happy to give you her name and

you could call her if you don't find someone similar near you. She spoke at the

Portland conference in 1995. She is

retiring soon, but I will still be able to contact her. I believe the adjustment

led toward an effective swallow.

Third: The HANDLE Institute is in Seattle and the Director and Founder, Judith

Bluestone will be making two

presentations (repeat) at the Houston conference on Saturday. Judith herself

did not talk or smile until she was much

older and she has many ideas regarding neurodevelopment. She believes the

facial nerves and vestibular system and all

the body systems influence learning and she has developed simple exercises to

enhance those systems. So, for eating

and swallowing and smiling, I believe her facial exercises helped Kendra.

Judith will demonstrate these easy

techniques in Houston. She is also giving a more in depth seminar on Sunday

after the conference and it costs $200.00

or $240.00 but a person will learn a lot from her regular conference sessions

even without attending the

post-conference session.

Fourth: Cranial-Sacral therapy is a massage-like approach developed by Dr.

Upledger and there is a clinic in Florida

with his name and there are therapists all over the country who have been

trained in his techniques. Occupational

therapists, and massage therapists are two of the specialists who often have

such training. The belief is that the

spinal fluid is part of a system that can have impedences in it and the therapy

is a gentle massage that makes the

fluid in the system work better. For Kendra we saw improvements in desire to

eat as well as in ability to chew

efficiently after this therapy. Kendra saw the therapist about 4 times and I

consider going back.

With HANDLE (http://www.handle.org) and Upledger Institute I believe you can

find a lot of information on the web. For

thermal therapy it might be possible to come up with information on the web.

I believe all of these techniques have helped Kendra and also in ways not

related to eating specifically. However, I

do feel that the body is very fragile and each approach must be done carefully

and with someone trained in the

techniques.

Please let me know if you have any more questions. The fact that Kendra eats is

such a miracle to me. I feel the

not-eating because of aspirations for so long really hindered her in being able

to learn to eat but she does very, very

well now. She has never had a hamburger or steak, but she does well with most

parts of a typical diet. I watch her

like a Momma hawk though still and I only send pureed food to school. At home

she eats more solid food.

One other approach that I didn't mention was sensory-integration therapy and

that often helps children with eating

also. Has Emma had this kind of therapy before?

I really hope some of these ideas help Emma. Are you going to Houston? I would

be very happy to discuss this more

either there or now by e-mail.

I am always so impressed at how you support your son and daughter-in-law and

their children by being on the list!!! It

is really wonderful.

keedy@...

Portland, OR

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> ,

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> Last week you wrote responding to Tim Hartshorne, " Perhaps you've done all

> of these, but just in case, here they are " . You went on to mention Thermal

> therapy, adjusting the hyoid bone, exercises for the HANDLE Institute for

> facial nerves and Cranial sacral therapy. I am ignorant of all of these

> suggestions. Since my granddaughter Emma is still on a g-tube(we are trying

> to get her to eat orally but she is not always receptive) I would be

> interested in learning more about these things. If you could tell me a

> little more about each when you get a chance,