Re: Sensory Processing Dysfunction

[Guest guest]

Hi Lori,

Yes CMT can affect sensory processes. Another name for CMT is Hereditary Motor

and Sensory Neuropathy - HMSN. Motor refers to legs, feet,arms, hands, body

movement, balance, ataxia etc. Sensory refers to ears, eyes, skin, peripheral

nerves, increased or decreased sensitivity to heat, cold, pain etc.

Gretchen

[Guest guest]

WOW thank you! I forgot about HMSN is sensory so that all makes more sense now.

Nothing that helps but at least we know what is going on. I hope it doesn't get

worse. It isn't affecting him badly now but some things are tougher on him.

Lori

From: [mailto: ] On Behalf Of

Sent: Friday, September 11, 2009 7:40 PM

Subject: Re: Sensory Processing Dysfunction

Hi Lori,

Yes CMT can affect sensory processes. Another name for CMT is Hereditary

Motor and Sensory Neuropathy - HMSN. Motor refers to legs, feet,arms, hands,

body movement, balance, ataxia etc. Sensory refers to ears, eyes, skin,

peripheral nerves, increased or decreased sensitivity to heat, cold, pain

etc.

Gretchen

[Guest guest]

Hi Lori, what did your doc mean by " sensory processing " ?

Proprioreception is affected by CMT because the receptor sites are damaged as a

result of the neuropathy.

In , " Lori Mattheiss " <mattheiss137@...> wrote:

Does CMT cause or effect sensory processing? My son was just told by

the OT he has this and I was wondering if this is CMT related. Anyone

else have this or know anything about it?

Lori

[Guest guest]

Good info on what Proprioception is at

http://en.wikipedia.org/wiki/Proprioception

[Guest guest]

The report says 'sensory processing dysfunction and fine motor dysfunction. It

also does mention proprioceptive deficits (I had to look that one up). I think

he does not know enough about CMT and doesn't realize it is caused by the CMT.

Would OT help with these issues or would he pretty much have to deal with the

dysfunction as is? I am going to get a second eval from childrens hospital in

october and also have my sons physiatrist review the report as he is a CMT

specialist. I have had a hard time getting in touch with the DR (OT) since

getting the report this week. We have a meeting with him Monday night and boy do

I have a lot of questions. I do fear that if he is not that familiar with CMT he

may not realize why has these issues and the therapy he is doing may not

help and even make things worse? Should I be concerned about this?

Lori

[Guest guest]

Lori,

My experience with doctors is...if you say you have CMT or Charcot Marie

Tooth and get 'deer in the headlights " get up, shake hands and move on!

Jeanne

[Guest guest]

Lori,

OT was of no use for me. It was a total waste of time. (Making jello and

learning how to get in my car!) But I was already an adult, and as a child with

CMT I had figured out things long ago simply 'by doing'.

However, for your son, OT may be helpful in teaching him how to use adaptive

devices, like spoons/forks, computer access.

OTs asks " does this person have difficulties managing his or her daily

activities (or occupations), and what adaptions can make it possible for him or

her to manage better and how will this then impact his or her health and

well-being? "

OTs approach intervention in a different way with children. OT delivers

approaches treatment through occupation, and the occupations of a child are

different from those of an adult; and include play, chores, self-care and

schoolwork. Common conditions that are specific to or more common in the

pediatric population creating a need for OT services include: developmental

disorders, sensory regulation or sensory processing deficits. OTs can help with

adaptive equipment like using a shower chair or getting dressed.

More at http://en.wikipedia.org/wiki/Occupational_Therapy

Gretchen

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[Guest guest]

Lori,

OT was useless for me as well and cost me $ I didn't have!

I can also see where it may benefit a child. Made some kind of hard plastic

splint for my thumbs, that didn't work, moved my fingers up and down for half

hour, showed me kitchen devices that I already had, showed me how the stove

should be by a counter so one can move things off the stove easily...Really????.

Physical therapy is what I really needed.

Geri

>

[Guest guest]

OT was a waste of time for me too. I could have taught it. I was a CMT kid also.

In a message dated 9/13/2009 11:27:59 A.M. Pacific Daylight Time,

@... writes:

But I was already an adult, and as a child with CMT I had figured out

things long ago simply 'by doing'.

[Guest guest]

As the parent of a child with SPD, I say it is more about behavioral responses

to sensory input. For example, when young, my child couldn't handle loud

restaurants. Others have problems with certain types of clothes. Or, they crave

stimulation from jumping or banging into things. I don't think CMT would account

for this sensitivity. My advice would be to understand why the OT has made the

diagnosis, maybe get another opinion, and then decide if it fits.

An excellent resource is The Out-of-Sync Child by Carol Kranowitz. There is

also plenty of information on the web.

Good luck!

Donna

[Guest guest]

Love your choice of words...I hear ya!

Geri

OT was a waste of time for me too. I could have taught it. I was a CMT kid

also.

In a message dated 9/13/2009 11:27:59 A.M. Pacific Daylight Time,

@... writes:

But I was already an adult, and as a child with CMT I had figured out

things long ago simply 'by doing'.