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Re: Tactile issues?

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Mark,

Yes, I have lots of problems with tactile dysfunction, and yes, the texture of

food does in fact make a difference.

I cannot bite into an apple for example, because it is too painful and

difficult.

But I love all things apple (small a and a big A), from pies, to juice, to

sauce.

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Wow!  My mother in law and I were JUST talking about yesterday during dinner. My

daughters do not like meat and we've often wondered if it is texture.  They

love yogurt and I'm wondering if I puree (yuck) the meat if they would eat it

that way.

If anyone has any suggestions, I would love to hear them.  I need to get my

girls to eat but you can't force a 3 y/o food, it just doesn't work!

Mother to Ashlee Rayne & Aimee Renae

________________________________

From: Geri Logan <hotwheels@...>

Sent: Fri, November 26, 2010 12:43:38 PM

Subject: Re: Tactile issues?

 

Mark,

I can't stand to have anything tight...my clothess have to be big and baggy, or

I feel like I can't breath.

Geri

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Hey Mark,

Your son and mine seem very similar, doesn’t eat much and is very

picky about what he eats. Definitely has a texture issue as does my husband

(non CMT). We battle about his feet all the time as I cannot touch them to clip

his nails so make him do it himself. Not sure if the food texture issue is CMT

related or not but it is an issue when comes to eating different foods. Oh and

he didn’t eat any turkey, stuffing or potatos at dinner last night.

Lori

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Oh, there is NO touching Zack's feet. He used to have to hide his face in a

pillow for me to cut his nails. For all I know he bites them off now. He had to

be sedated at the ER when he had 2 magnets magically leap out of the Magnetix

toys they used to have and lodge themselves on either side of his septum. I do

not know how he survived all the poking and prodding when he had the

appendicitis in June. I tell you, he truly gags at the touch of new foods.

Strange thing is, he has a cousin from his Mom's side (the non-CMT side) that is

similar build, similar looks, and just as food-fussy. He got to college and his

friends gave up trying to bend for him all the time, and he finally learned to

eat some different things. My wife was talking to her brother last night and my

wife was being hopeful in speculating that if loosened up some around this

time, maybe Zack will too. I have my doubts...

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> Hey Mark,

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> Your son and mine seem very similar, doesn't eat much and is very

> picky about what he eats. Definitely has a texture issue as does my husband

(non CMT). We battle about his feet all the time as I cannot touch them to clip

his nails so make him do it himself. Not sure if the food texture issue is CMT

related or not but it is an issue when comes to eating different foods. Oh and

he didn't eat any turkey, stuffing or potatos at dinner last night.

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> Lori

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Hi Mark,

My dad and I(both CMT)both have some food texture issues that cause us to reject

specific foods (not all the same foods between us), as does my brother(non-CMT),

but my sister(CMT) does not seem to be as finicky due to texture. But we all

also have certain things that we just don't like the taste of. How much of that

is nature-vs-nurture? All of us absolutely love black licorice/anise, which is

one of my dad's all-time favorite treats, and is one of those foods that people

either seem to love or hate. Was that learned or not?

I do have problems with people touching my feet, and therefore, am reluctant to

go for a pedicure, which my friends all love to get! I used to love having them

tickled when I was a kid, but as the pleasurable feelings went away d/t CMT &

foot surgery, generally the only thing I feel in my feet is pain if I feel

anything at all. I think that between the surgery, and the podiatrist cutting

away painful calluses or plantar warts, I have come to associate other people

touching them with a painful experience.

Oh, and I lost the end of my left pinky in an accident at work 14 years ago and

while there is some sensation on the tip that the surgeon designed, it is not

like it was. Often I do not know whether I am hitting the " A " key, or the caps

lock, or both on the keyboard. That said, I am diabetic and I only tried

sticking that finger once to test my sugar. It hurt like the devil and throbbed

for several minutes afterward! Strange.

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My non-CMT son is very very sensitive to food textures...I seem to recall that

our pediatrician called it a geographic tongue.

Our CMT-er is very senstiving to fabrics and has been since he was a newborn. I

think that has more to do with his psoriasis than it does to his CMT.

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