sensory intergration dysfunction and related issues

[Guest guest]

About the sensory intergration probs and sensitivities, I have dealt with

these most my life. My mom says I hated to wear clothes when I was really young

and would often take them off. Then as I grew older I would only tolerate

specific clothes and a big thing I hated was clothes tags, always had to get

them

cut out. I also have always been sensitive to sounds, smells and light. Even

though I have some hearing loss now it seems I am still sensitive to alot of

sounds. Also I've always had alot of problems with crowds too, was considered a

shy kid basically and they said that my developmental delays that I had

affected me socially also. I also have the diagnosis of OCD and I feel that that

might actually stem from being so sensory sensitive. I also had autistic like

features as a child such as hand flapping, skin picking, and the social issues.

I

still have a few of the features but not as severe. I know when I was younger

my OT/PT did some sort of work with me for the sensory intergration

dysfunction but dont remember what, I'd have to ask my mom if you wanted to

know.

Anyways, not sure if this helps any but thought I would share my experience.

take care,

Adrienne

[Guest guest]

Anita,

I've been meaning to get those shirts without tags (tagless tees I think they

call them). You sound alot like me with clothes. I also wanted to share a

good website on sensory intergration- has some good info and links, might help

you or someone else, its http://www.sinetwork.org/home/index.html

Hope it helps!

take care,

adrienne

[Guest guest]

Hi Adrienne, Thank so much for sharing your history with

sensory sensitivity. I never knew it had a name and NEVER

guessed how many other people experience it in a similar way to

the way I do.

Oh, clothing tags....aren' t they just the worst. I was amazed a few

weeks ago to see an advertisement on TV by one of the major

men's undershirt companies for a shirt that didn't have scratchy

tags...or maybe it had NO tags, I can't remember. I have to sew

expensive silk over all the bumpy places on my clothing that

touch my skin. Guess I just must have a " royalty " gene

someplace.

Best Wishes,

Anita

[Guest guest]

Hi Adrienne, Ah yes, " Tagless Tees " . What a great idea!

Thanks for the link to the website on sensory integration. I found

it very interesting. What I find strange is that until I go the Lyme

Disease in my early 30's, I didn't really exhibit sensory avoidance

symptoms. The infection must have caused something to go

wrong in my " wiring " .

I feel like I must be missing half the insulation, but my MRI's

don't seem to indicate that.

Best Wishes,

Anita

> Anita,

> I've been meaning to get those shirts without tags (tagless

tees I think they

> call them). You sound alot like me with clothes. I also wanted

to share a

> good website on sensory intergration- has some good info

and links, might help

> you or someone else, its

http://www.sinetwork.org/home/index.html

> Hope it helps!

> take care,

> adrienne

>

>

>

[Guest guest]

Anita and Adam

My son has used a special set of CDs that helped him reduce his auditory

sensitivities. I have no idea what it is called, but he found it on line and

checked with his neurologist who gave him the go-ahead. I will try to

remember to ask him what it is. It is similar to the program that costs

several hundreds of dollars that some autistic folks have done with success.

It has a name, but I can't even remember what it is. I am really tired, so

maybe my brain will work better tomorrow.

laurie

>

> Reply-To:

> Date: Fri, 14 May 2004 13:52:08 -0000

> To:

> Subject: Re: sensory intergration dysfunction and related issues

>

>

> Hi Adrienne, Thank so much for sharing your history with

> sensory sensitivity. I never knew it had a name and NEVER

> guessed how many other people experience it in a similar way to

> the way I do.

>

> Oh, clothing tags....aren' t they just the worst. I was amazed a few

> weeks ago to see an advertisement on TV by one of the major

> men's undershirt companies for a shirt that didn't have scratchy

> tags...or maybe it had NO tags, I can't remember. I have to sew

> expensive silk over all the bumpy places on my clothing that

> touch my skin. Guess I just must have a " royalty " gene

> someplace.

>

> Best Wishes,

> Anita

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Hi

I thought I should share the experience my son had with sensory integration.

At five, he had very little intelligent speech - he made sounds but they

didn't make sense. He also couldn't walk without watching his feet, nor eat

without looking at his hands. After 9 months of weekly integration therapy,

but a home program, he was dismissed from speech therapy and could at least

get to the bathroom in the dark. That has improved over the years, except he

drifts when walking. He walks in front of me or behind me when he has

started walking next to me. His wife does the same thing. It is very

interesting walking with the two of them.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Fri, 14 May 2004 09:40:59 EDT

> To:

> Subject: sensory intergration dysfunction and related issues

>

> About the sensory intergration probs and sensitivities, I have dealt with

> these most my life. My mom says I hated to wear clothes when I was really

> young

> and would often take them off. Then as I grew older I would only tolerate

> specific clothes and a big thing I hated was clothes tags, always had to get

> them

> cut out. I also have always been sensitive to sounds, smells and light. Even

> though I have some hearing loss now it seems I am still sensitive to alot of

> sounds. Also I've always had alot of problems with crowds too, was considered

> a

> shy kid basically and they said that my developmental delays that I had

> affected me socially also. I also have the diagnosis of OCD and I feel that

> that

> might actually stem from being so sensory sensitive. I also had autistic like

> features as a child such as hand flapping, skin picking, and the social

> issues. I

> still have a few of the features but not as severe. I know when I was younger

> my OT/PT did some sort of work with me for the sensory intergration

> dysfunction but dont remember what, I'd have to ask my mom if you wanted to

> know.

> Anyways, not sure if this helps any but thought I would share my experience.

> take care,

> Adrienne

>

>

>

[Guest guest]

Hi Laurie, Thanks for the info on your son, He sounds like you've

been able to help him adjust well to his disabilities. Thanks

also for the info on the sensory integration CD's. That's very good

to know and I will keep the info on file.

The challenge for me right now is that I I never had any of these

sensory integration symptoms growing up. I also don't seem to

have had many other symptoms that might have been fledegling

mito (though it's just maybe posible I might have had a few mild

ones). It wasn't until the Lyme came in my mid 30's that possible

mito symptoms appeared and escalated very quickly. I've seen

similar things happen in other neuro Lyme patients and I keep

wondering if the Lyme just attacked a gentically weak area (it

tends to do that and I (and the others) already had a

predisposition for mito disease, or if the effect of the Lyme toxins

caused the mitochondria to malfunction. Lyme toxins have been

described by a Lyme doc as being similar in virulence to those of

botulism.

I'm still mystified by the formerly healthy Lyme FAMILIES I know

who all got Lyme and then all started presenting with mito-like

symptoms. I wonder if these families were " at risk " mito families

where the symptoms were so mild they wern't noticed till

something like a " kick in the pants " infection caused them to

manifest.

I suspect many of the therapy modalities for things like sensory

sensitivity that often help people with conditions they've had

since childhood are not appropriate for adult onset symptoms. I

know that hyperacusis retraining therapy generally make

hyperacusis worse in Lyme patients.

Anyhow, thanks for listening to my musings. I appreciate your

kindness and all your info!

Best Wishes,

Anita

> Anita and Adam

>

> My son has used a special set of CDs that helped him reduce

his auditory

> sensitivities. I have no idea what it is called, but he found it on

line and

> checked with his neurologist who gave him the go-ahead. I will

try to

> remember to ask him what it is. It is similar to the program that

costs

> several hundreds of dollars that some autistic folks have done

with success.

> It has a name, but I can't even remember what it is. I am really

tired, so

> maybe my brain will work better tomorrow.

>

> laurie

>

> > From: " Anita "

> > Reply-To:

> > Date: Fri, 14 May 2004 13:52:08 -0000

> > To:

> > Subject: Re: sensory intergration dysfunction and

related issues

> >

> >

> > Hi Adrienne, Thank so much for sharing your history with

> > sensory sensitivity. I never knew it had a name and NEVER

> > guessed how many other people experience it in a similar

way to

> > the way I do.

> >

> > Oh, clothing tags....aren' t they just the worst. I was amazed a

few

> > weeks ago to see an advertisement on TV by one of the

major

> > men's undershirt companies for a shirt that didn't have

scratchy

> > tags...or maybe it had NO tags, I can't remember. I have to

sew

> > expensive silk over all the bumpy places on my clothing that

> > touch my skin. Guess I just must have a " royalty " gene

> > someplace.

> >

> > Best Wishes,

> > Anita

> >

> >

> >

> >

> > Medical advice, information, opinions, data and statements

contained herein

> > are not necessarily those of the list moderators. The author

of this e mail is

> > entirely responsible for its content. List members are

reminded of their

> > responsibility to evaluate the content of the postings and

consult with their

> > physicians regarding changes in their own treatment.

> >

> > Personal attacks are not permitted on the list and anyone

who sends one is

> > automatically moderated or removed depending on the

severity of the attack.

> >

> >

> >

> >

[Guest guest]

Anita

and I can now look back and see that we had very mild mito symptoms

as children. It is hard to abnormal when you have never known normal.

Everything like riding bikes was fun for my friends, but darn hard work for

me. At Halloween when we would ring doorbells, I was the one to get caught

because I couldn't run as fast. In college I always had to stop and rest

after each flight of stairs. I thought I was out of shape, but after four

years of climbing to the forth floor several times a day, I should have been

in shape. I think that anything stressful can make symptoms worse or make

you aware that something isn't right.

My son used the CDs as an adult.

laurie

>

> Reply-To:

> Date: Fri, 14 May 2004 22:58:09 -0000

> To:

> Subject: Re: sensory intergration dysfunction and related issues

>

>

> Hi Laurie, Thanks for the info on your son, He sounds like you've

> been able to help him adjust well to his disabilities. Thanks

> also for the info on the sensory integration CD's. That's very good

> to know and I will keep the info on file.

>

> The challenge for me right now is that I I never had any of these

> sensory integration symptoms growing up. I also don't seem to

> have had many other symptoms that might have been fledegling

> mito (though it's just maybe posible I might have had a few mild

> ones). It wasn't until the Lyme came in my mid 30's that possible

> mito symptoms appeared and escalated very quickly. I've seen

> similar things happen in other neuro Lyme patients and I keep

> wondering if the Lyme just attacked a gentically weak area (it

> tends to do that and I (and the others) already had a

> predisposition for mito disease, or if the effect of the Lyme toxins

> caused the mitochondria to malfunction. Lyme toxins have been

> described by a Lyme doc as being similar in virulence to those of

> botulism.

>

> I'm still mystified by the formerly healthy Lyme FAMILIES I know

> who all got Lyme and then all started presenting with mito-like

> symptoms. I wonder if these families were " at risk " mito families

> where the symptoms were so mild they wern't noticed till

> something like a " kick in the pants " infection caused them to

> manifest.

>

> I suspect many of the therapy modalities for things like sensory

> sensitivity that often help people with conditions they've had

> since childhood are not appropriate for adult onset symptoms. I

> know that hyperacusis retraining therapy generally make

> hyperacusis worse in Lyme patients.

>

> Anyhow, thanks for listening to my musings. I appreciate your

> kindness and all your info!

>

> Best Wishes,

> Anita

>

>

>> Anita and Adam

>>

>> My son has used a special set of CDs that helped him reduce

> his auditory

>> sensitivities. I have no idea what it is called, but he found it on

> line and

>> checked with his neurologist who gave him the go-ahead. I will

> try to

>> remember to ask him what it is. It is similar to the program that

> costs

>> several hundreds of dollars that some autistic folks have done

> with success.

>> It has a name, but I can't even remember what it is. I am really

> tired, so

>> maybe my brain will work better tomorrow.

>>

>> laurie

>>

>>> From: " Anita "

>>> Reply-To:

>>> Date: Fri, 14 May 2004 13:52:08 -0000

>>> To:

>>> Subject: Re: sensory intergration dysfunction and

> related issues

>>>

>>>

>>> Hi Adrienne, Thank so much for sharing your history with

>>> sensory sensitivity. I never knew it had a name and NEVER

>>> guessed how many other people experience it in a similar

> way to

>>> the way I do.

>>>

>>> Oh, clothing tags....aren' t they just the worst. I was amazed a

> few

>>> weeks ago to see an advertisement on TV by one of the

> major

>>> men's undershirt companies for a shirt that didn't have

> scratchy

>>> tags...or maybe it had NO tags, I can't remember. I have to

> sew

>>> expensive silk over all the bumpy places on my clothing that

>>> touch my skin. Guess I just must have a " royalty " gene

>>> someplace.

>>>

>>> Best Wishes,

>>> Anita

>>>

>>>

>>>

>>>

>>> Medical advice, information, opinions, data and statements

> contained herein

>>> are not necessarily those of the list moderators. The author

> of this e mail is

>>> entirely responsible for its content. List members are

> reminded of their

>>> responsibility to evaluate the content of the postings and

> consult with their

>>> physicians regarding changes in their own treatment.

>>>

>>> Personal attacks are not permitted on the list and anyone

> who sends one is

>>> automatically moderated or removed depending on the

> severity of the attack.

>>>

>>>

>>>

>>>

[Guest guest]

Hi Laurie,

Thanks Laurie, I have heard of those tapes, and I can't remember the name of

them either. They have a series of tapes and one of them is for insomnia. It

is supposed to improve the brain waves and your sleep. I did try that

particular CD once and it seemed to help then it didn't. So I stopped using it.

Did the CD your son use help him? Did he see improvement directlyl attributable

to the CD?

Adam

In a message dated 5/14/2004 5:20:26 PM Eastern Standard Time,

writes:

> Anita and Adam

>

> My son has used a special set of CDs that helped him reduce his auditory

> sensitivities. I have no idea what it is called, but he found it on line and

> checked with his neurologist who gave him the go-ahead. I will try to

> remember to ask him what it is. It is similar to the program that costs

> several hundreds of dollars that some autistic folks have done with success.

> It has a name, but I can't even remember what it is. I am really tired, so

> maybe my brain will work better tomorrow.

>

> laurie

[Guest guest]

Adam

My son definitely saw improvement with the CD. He has been able to use power

tools with no problem. I think he has re-used them once as they say it might

be necessary to do this. His entire health has improved over the last few

years, so it might have been this process that contributed to the

improvement, although he is still sensory sensitive to touch and lights.

laurie

> From: AdamM321@...

> Reply-To:

> Date: Sat, 15 May 2004 05:17:56 EDT

> To:

> Subject: Re: sensory intergration dysfunction and related issues

>

> Hi Laurie,

>

> Thanks Laurie, I have heard of those tapes, and I can't remember the name of

> them either. They have a series of tapes and one of them is for insomnia. It

> is supposed to improve the brain waves and your sleep. I did try that

> particular CD once and it seemed to help then it didn't. So I stopped using

> it.

> Did the CD your son use help him? Did he see improvement directlyl

> attributable

> to the CD?

>

> Adam

>

>

> In a message dated 5/14/2004 5:20:26 PM Eastern Standard Time,

> writes:

>

>> Anita and Adam

>>

>> My son has used a special set of CDs that helped him reduce his auditory

>> sensitivities. I have no idea what it is called, but he found it on line and

>> checked with his neurologist who gave him the go-ahead. I will try to

>> remember to ask him what it is. It is similar to the program that costs

>> several hundreds of dollars that some autistic folks have done with success.

>> It has a name, but I can't even remember what it is. I am really tired, so

>> maybe my brain will work better tomorrow.

>>

>> laurie

>

>

>

>

[Guest guest]

Hi Laurie, Thanks for your input! I got sick more often than I

probably should have as a child, but I was a ballet dancer for

many years with no kind of

sensory/school/social/muscular/endurance problems that I

remember, until the Lyme hit in my mid 30's. This is why I'm kind

of confused and wonder if my health problems might be an adult

onset type of mito, or maybe just something else totally

difference with similar symptoms that nobody has been able to

find.

I'm not sure I've really been in contact with any mitos who didn't

have at least small clues in their childhoods or familial clues.

Are there any here?

Thanks, Anita

[Guest guest]

In a message dated 5/15/2004 7:28:42 PM Eastern Daylight Time,

melobeau@... writes:

> I'm not sure I've really been in contact with any mitos who didn't

> have at least small clues in their childhoods or familial

> clues.

> Are there any here?

Hi Anita,

I am 26 and was a perfectly healthy child until the age of 14 after I got a

virus. After the virus, the motility in my stomach and small intestine shut

down and many other symptoms have appeared after over the years. I did have a

migraine once at age 9 and leg pain due to high arches in my feet at age 10, but

other than that, I had no signs that led to a diagnosis of mito. I know of

another young woman who had mito and subsequently passed away, but she didn't

have any symptoms til she was 21 after she got sick with some sort of gut

bacteria from traveling abroad.

Malisa

[Guest guest]

Anita

I have known those who were not at all symptomatic as children and became so

after something very stressful or exposure to something. There are also

those who were not diagnosed until after their children were, because they

had no previous symptoms or symptoms so mild that they hadn't considered it.

My mother was not diagnosed until after and I and around 70. She

helped my dad side the house and roof it when well into her 60s. Even after

and I were diagnosed, we didn't suspect she had mito for another

couple of years. Her mother had a heart condition, but could run circles

around me when she was in her 70s. We are so very different, that I don't

think any of us can say for sure that this was the way it is or not. We just

seem to have to find our own way and our own answers. It can be very

frustrating. It is also scary to look at the remainder of the family and

wonder if they have it too.

laurie

>

> Reply-To:

> Date: Sat, 15 May 2004 23:28:42 -0000

> To:

> Subject: Re: sensory intergration dysfunction and related issues

>

>

>

> Hi Laurie, Thanks for your input! I got sick more often than I

> probably should have as a child, but I was a ballet dancer for

> many years with no kind of

> sensory/school/social/muscular/endurance problems that I

> remember, until the Lyme hit in my mid 30's. This is why I'm kind

> of confused and wonder if my health problems might be an adult

> onset type of mito, or maybe just something else totally

> difference with similar symptoms that nobody has been able to

> find.

>

> I'm not sure I've really been in contact with any mitos who didn't

> have at least small clues in their childhoods or familial clues.

> Are there any here?

>

> Thanks, Anita

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Laurie, You are a dear. Thanks so much for your reply. It really

hadn't sunk in that adult onset really could be a possibilitly for

me because it seems so many of the wonderful folks here have

been battling with it most of their lives and are facing it in their

children as well. This does set things in perspective.

Thanks and Best Wishes,

Anita

> Anita

>

> I have known those who were not at all symptomatic as

children and became so

> after something very stressful or exposure to something. There

are also

> those who were not diagnosed until after their children were,

because they

> had no previous symptoms or symptoms so mild that they

hadn't considered it.

> My mother was not diagnosed until after and I and

around 70. She

> helped my dad side the house and roof it when well into her

60s. Even after

> and I were diagnosed, we didn't suspect she had mito

for another

> couple of years. Her mother had a heart condition, but could

run circles

> around me when she was in her 70s. We are so very different,

that I don't

> think any of us can say for sure that this was the way it is or not.

We just

> seem to have to find our own way and our own answers. It can

be very

> frustrating. It is also scary to look at the remainder of the family

and

> wonder if they have it too.

>

> laurie

>

> > From: " Anita "

> > Reply-To:

> > Date: Sat, 15 May 2004 23:28:42 -0000

> > To:

> > Subject: Re: sensory intergration dysfunction and

related issues

> >

> >

> >

> > Hi Laurie, Thanks for your input! I got sick more often than I

> > probably should have as a child, but I was a ballet dancer for

> > many years with no kind of

> > sensory/school/social/muscular/endurance problems that I

> > remember, until the Lyme hit in my mid 30's. This is why I'm

kind

> > of confused and wonder if my health problems might be an

adult

> > onset type of mito, or maybe just something else totally

> > difference with similar symptoms that nobody has been able

to

> > find.

> >

> > I'm not sure I've really been in contact with any mitos who

didn't

> > have at least small clues in their childhoods or familial clues.

> > Are there any here?

> >

> > Thanks, Anita

> >

> >

> >

> >

> >

> >

> > Medical advice, information, opinions, data and statements

contained herein

> > are not necessarily those of the list moderators. The author

of this e mail is

> > entirely responsible for its content. List members are

reminded of their

> > responsibility to evaluate the content of the postings and

consult with their

> > physicians regarding changes in their own treatment.

> >

> > Personal attacks are not permitted on the list and anyone

who sends one is

> > automatically moderated or removed depending on the

severity of the attack.

> >

> >

> >

> >