Re: yet ANOTHER question :)

[Guest guest]

Having a high tolerance to pain -- to the degree you are describing -- is one

characteristic associated with Autism.. This does not mean he HAS Autism. It

just means that one characteristic is present. It could also be a sensory

issue. I am also curious as to whether or not there is an issue with his sense

of touch whereby his neurons are not sending pain signals to the brain.

A. Knight

Sent from my iPad

On Aug 4, 2011, at 10:21 PM, " Whisnand "

<stephaniewhisnand@...> wrote:

Caede's pain tolerence is so high that it is starting to freak me out- he NEVER

cries when he gets hurt, even though he cries & screams like a lunatic when he

gets frustrated. Which is often. He had to get bloodwork done last week and

didn't even flinch when they put the needle in, and sat there for the whole

minute it took for them to drew blood as if nothing was happening. I have

noticed this at other times too: he often falls on his head/face and it doesn't

phase him at all. He stuck his hand on the side of a hot grill at my aunt's

house and didn't make a sound. I have to make SUPER sure his food is not too hot

because I'm afraid I will burn him without knowing it. He has also chewed on his

thumbs until they bled on several occasions. Anyone else dealing with this

peculiar phenomenon with their DS child?

Much love,

(mother of Gracie, 2, and Caede, 14months-Ds)

[Guest guest]

I have thought about that. I am contemplating whether or not to request a

consultation with a neurologist? Because of the pain tolerance thing, and also

because he only seems to hear what we are saying about 25% of the time. He also

makes these weird spastic jerks sometimes for no reason, and doesn't talk yet.

To: " <MosaicDS > " <MosaicDS >

Sent: Thursday, August 4, 2011 9:29 PM

Subject: Re: yet ANOTHER question

Having a high tolerance to pain -- to the degree you are describing -- is one

characteristic associated with Autism..  This does not mean he HAS Autism.  It

just means that one characteristic is present.  It could also be a sensory

issue.  I am also curious as to whether or not there is an issue with his sense

of touch whereby his neurons are not sending pain signals to the brain.

A. Knight

Sent from my iPad

On Aug 4, 2011, at 10:21 PM, " Whisnand "

<stephaniewhisnand@...> wrote:

Caede's pain tolerence is so high that it is starting to freak me out- he NEVER

cries when he gets hurt, even though he cries & screams like a lunatic when he

gets frustrated. Which is often. He had to get bloodwork done last week and

didn't even flinch when they put the needle in, and sat there for the whole

minute it took for them to drew blood as if nothing was happening. I have

noticed this at other times too: he often falls on his head/face and it doesn't

phase him at all. He stuck his hand on the side of a hot grill at my aunt's

house and didn't make a sound. I have to make SUPER sure his food is not too hot

because I'm afraid I will burn him without knowing it. He has also chewed on his

thumbs until they bled on several occasions. Anyone else dealing with this

peculiar phenomenon with their DS child?

Much love,

(mother of Gracie, 2, and Caede, 14months-Ds)

[Guest guest]

-

's(12) pain tolerance is also extremely high, in June she had a raging

ear infection when I took her for her annual checkup but she never told me

her ear hurt. She went through 10 days of antibiotics and when her dad came

home from Europe he asked her how she had been and she said very casually

that her ear hurt - so I took her to the doctors and in the same ear she had

swimmers ear, after the treatment for that ended (and we were home again -

we were on vacation in Chicago) I took her back to the doctors to make sure

everything was better and the doctor told me she still had the infection!

Again on the antibiotics and now, thank goodness, it is cleared up.

had a partial blockage of her small intestine that we did not know

about until she was 3, so she was in constant pain from the time that she

started eating solid food until 3. So when at 10 she told me her heart hurt

- I took her to a cardiologist and low and behold she had THREE holes in her

heart (turns out the holes do not hurt, but thank God for heartburn)

She does not complain about anything, except that her brother (14) is making

too much noise or bothering her. As a child, she would sit there fascinated

watching the nurse as she drew blood, which was often, she never said it

hurt - very recently within a year or two ago she started complaining about

the needles (because her brother is deathly afraid of them) but I have found

that I can distract her so if she is not watching, she does not know it

happened.

Darlene (Mom to (14) and (12)

On Thu, Aug 4, 2011 at 10:19 PM, Whisnand <

stephaniewhisnand@...> wrote:

> **

>

>

> Caede's pain tolerence is so high that it is starting to freak me out- he

> NEVER cries when he gets hurt, even though he cries & screams like a lunatic

> when he gets frustrated. Which is often. He had to get bloodwork done last

> week and didn't even flinch when they put the needle in, and sat there for

> the whole minute it took for them to drew blood as if nothing was happening.

> I have noticed this at other times too: he often falls on his head/face and

> it doesn't phase him at all. He stuck his hand on the side of a hot grill at

> my aunt's house and didn't make a sound. I have to make SUPER sure his food

> is not too hot because I'm afraid I will burn him without knowing it. He

> has also chewed on his thumbs until they bled on several occasions. Anyone

> else dealing with this peculiar phenomenon with their DS child?

>

> Much love,

>

> (mother of Gracie, 2, and Caede, 14months-Ds)

>

>

[Guest guest]

Absolutley!!! Our issues are identical.  Kaylee is 5 and I thought that she had

escaped her preschool years without a single ear infection, this was odd to me

as my other three children had all had their fair share of ear infections. 

Last week we went to the doctor and a routine check unveiled a terrible ear

infection.  She had not complained or even rubbed her ear as if it was

bothering her. 

A related issue may be her sensory issue which are EXTEME!!! She experiences

uncontrolled, spontaneous grunts and outstretched, stiff arms and legs as if she

is having a seizure. Her teeth grinding is constant and strong

I do wonder if her high pain tolerance is related to her sensory issues.

Sandy

________________________________

To: " MosaicDS " <MosaicDS >

Sent: Thursday, August 4, 2011 10:19 PM

Subject: yet ANOTHER question

 

Caede's pain tolerence is so high that it is starting to freak me out- he NEVER

cries when he gets hurt, even though he cries & screams like a lunatic when he

gets frustrated. Which is often. He had to get bloodwork done last week and

didn't even flinch when they put the needle in, and sat there for the whole

minute it took for them to drew blood as if nothing was happening. I have

noticed this at other times too: he often falls on his head/face and it doesn't

phase him at all. He stuck his hand on the side of a hot grill at my aunt's

house and didn't make a sound. I have to make SUPER sure his food is not too hot

because I'm afraid I will burn him without knowing it. He has also chewed on

his thumbs until they bled on several occasions. Anyone else dealing with this

peculiar phenomenon with their DS child?

 

Much love,

(mother of Gracie, 2, and Caede, 14months-Ds)

[Guest guest]

,

 

Tell me more about the spastic movements. I ask because from birth, Olivia used

to make these movements that I swore were Infantile Spasms, then around 4

months, she would drop her head, all of the sudden, like she lost all strength

in her neck (no loss of consciousness, no other seizure type symptoms or

anything else), at about 7 or 8 months she would do this movement where if she

was lying on her back it would look like her body would tense up a little and

then relax. All of this freaked me out, so we went to the neurologist (I had

video recorded all moments of concern). The doc saw everything and checked out

Livy. She was fine. What the doc told me, more for reassurance than anything

else I think, was that there is a very low occurrence of kids with DS and some

type of seizure disorder. She also told me that Olivia's nervous system was

still immature, and this can be common among kids w/developmental delays. She

told me to monitor the behaviors and

she would definitely take testing to the next level if I did not see the

behaviors stopping.

 

Olivia no longer does any of the spasm type things, but she does do this

movement, which we call her " wiggle worm " . Only when she is sitting, she does

this thing where she ... wiggles (it's the only way I know how to describe it).

I've talked to the doctors about this, so they are aware, but that it is nothing

to worry about (with all the doctor experiences around this post, I'm a little

hesitant to write that, but I really don't think it is anything to worry about).

Other than the wiggling, there is nothing bizarre about the behavior, i.e no

loss of consciousness, no drooling before or after, no screaming, no sleeping,

etc. etc. which might suggest some kind of seizure.

 

However, as with everything, I'd make the appointment with the neurologist just

to make sure. My philosophy is I'd rather find out than wonder.

 

Also, about the not listening, Livy doesn't listen either. We've had her hearing

tested 4 times and we are scheduled for another hearing test in a few months

(last time they couldn't get the full reading on her left side due to her

screaming! lol) All of her hearing tests have come back normal .... so, either

she's just really stubborn or she has something cognitive going on. I'm leaning

towards stubborn however as she is bright in other areas. Time will tell

 

Sorry for the long winded email!

 

Tacia, mom to Olivia, 16 months.

[Guest guest]

Tacia and ,

Laloo, does the same type of " wiggling " .  We call it dreamfasting, because when

it happens she is usually lingering in and out of sleep.  It's as if she cannot

hold her head up.  She was doing this into the pillows and I was really

concerned the behavior would extend off the pillows onto a much harder surface,

so she's been getting craniosacral work once a week.  Since we've started the

cranio the headbanging has completely stopped, but the dreamfasting happens on

occasion.

Mg mom to Laloo (11 months) and Nascha (6)