RE: NODDING/TWITCHING QUESTION

[Guest guest]

Amy,

Does Max hold his head up independently? If so for how long? At nine months

I wouldn't be that worried. Mighty Max just might be getting control of his

shoulder and neck muscles. He might be providing some sort of sensory input,

he might be actually trying to do a physical activity (nodding), he might....

The point is you just won't know so don't worry about it if it is ever so

slight.

But again, you are his mother, you know what's up about your child.

Love the comment about how cute he is. You must have felt fabulous for him.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Amy,

Does Max hold his head up independently? If so for how long? At nine months

I wouldn't be that worried. Mighty Max just might be getting control of his

shoulder and neck muscles. He might be providing some sort of sensory input,

he might be actually trying to do a physical activity (nodding), he might....

The point is you just won't know so don't worry about it if it is ever so

slight.

But again, you are his mother, you know what's up about your child.

Love the comment about how cute he is. You must have felt fabulous for him.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

hmmmmmm coul it be soemthing to do with his facil palsy or the fact taht hes

jsut learning hwo to move more intresting ellen

>

> Ok, Max started doing something and I'm not sure if it is nothing or

> definitely " something. " But I have learned in my brief time in CHARGEland

> that you always have to ask questions and make certain, because you just

> never know!!!

>

> In the past few days, he started " nodding/twitching " his head a bit...hard

> to explain...kind of like when someone does the casual nod to say hello (but

> less pronounced than that). It's just an ever so slight movement but it is

> noticeable. He doesn't do it all the time...but occasionally if he is just

> hanging out, he'll start his " nodding " . Hard to explain, but hopefully I am

> making some sense.

>

> Today someone noticed it when I was babbling with Maxwell and comment " how

> sweet, he is nodding at you! " Then it was even funnier because the man's

> wife then commented " oh wow, he just winked at me! " Little did they realize

> that the " nod " was worrying me that something was wrong neurologically or

> with his muscles AND his " wink " was actually due to his facial palsy! Too

> funny!

>

> Then at the next store, someone said " wow look at your baby...he sure

> never misses a meal..look how big and healthy he is!!! " I wanted to laugh

> and reply " you're right, he never does miss a meal...he eats 15 hours a

> day! " But I didn't...but it was SOOO wonderful to have people admire my

> baby, not because of how much progress he has made...but solely because he

> is an adorable baby! (See this is one of the first times he has been out

> and about without his O2 cannula on. Usually they comment on that first.)

>

> But ANYWAY, I digress...back to my original concern. Does this

> " nodding/twitching " sound like anything? I already have an appointment with

> my PCP tomorrow for his 9 month vaccines and I am going to ask him, but I

> have a feeling he won't have a very good answer or reason...so I turn to you

> all...the CHARGE experts.

>

> Your thoughts?

>

> Thanks everyone!!!

>

>

> Amy McKinley

> Mom to MIGHTY MAX (CHARGE, 9 months old, 7 months corrected)

> maxupdate.blogspot.com

>

> ---------------------------------

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

> countries) for 2¢/min or less.

>

>

[Guest guest]

hmmmmmm coul it be soemthing to do with his facil palsy or the fact taht hes

jsut learning hwo to move more intresting ellen

>

> Ok, Max started doing something and I'm not sure if it is nothing or

> definitely " something. " But I have learned in my brief time in CHARGEland

> that you always have to ask questions and make certain, because you just

> never know!!!

>

> In the past few days, he started " nodding/twitching " his head a bit...hard

> to explain...kind of like when someone does the casual nod to say hello (but

> less pronounced than that). It's just an ever so slight movement but it is

> noticeable. He doesn't do it all the time...but occasionally if he is just

> hanging out, he'll start his " nodding " . Hard to explain, but hopefully I am

> making some sense.

>

> Today someone noticed it when I was babbling with Maxwell and comment " how

> sweet, he is nodding at you! " Then it was even funnier because the man's

> wife then commented " oh wow, he just winked at me! " Little did they realize

> that the " nod " was worrying me that something was wrong neurologically or

> with his muscles AND his " wink " was actually due to his facial palsy! Too

> funny!

>

> Then at the next store, someone said " wow look at your baby...he sure

> never misses a meal..look how big and healthy he is!!! " I wanted to laugh

> and reply " you're right, he never does miss a meal...he eats 15 hours a

> day! " But I didn't...but it was SOOO wonderful to have people admire my

> baby, not because of how much progress he has made...but solely because he

> is an adorable baby! (See this is one of the first times he has been out

> and about without his O2 cannula on. Usually they comment on that first.)

>

> But ANYWAY, I digress...back to my original concern. Does this

> " nodding/twitching " sound like anything? I already have an appointment with

> my PCP tomorrow for his 9 month vaccines and I am going to ask him, but I

> have a feeling he won't have a very good answer or reason...so I turn to you

> all...the CHARGE experts.

>

> Your thoughts?

>

> Thanks everyone!!!

>

>

> Amy McKinley

> Mom to MIGHTY MAX (CHARGE, 9 months old, 7 months corrected)

> maxupdate.blogspot.com

>

> ---------------------------------

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

> countries) for 2¢/min or less.

>

>

[Guest guest]

Amy-

Don't know about the nodding, but you're right to question and figure it

out. My gut tells me it's something -- either seizure stuff or self-stim

stuff or whatever -- but something to understand. When you said he does it

when he's " hanging out " it made me wonder if it's the start of rocking. I

can't remember when Aubrie started that, but it had to be after she had the

muscle control which is about right for where Max is, I think. If so --

it's not a worry, but it is something to know about and understand.

On the funny but positive comments from others -- What a great feeling! I

can still remember the first person who commented on Aubrie with " generic

comments " instead of the stares and concerns. It was a person who'd had a

sick baby so she knew to look past the feeding tube and comment on the

beautiful baby!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Amy-

Don't know about the nodding, but you're right to question and figure it

out. My gut tells me it's something -- either seizure stuff or self-stim

stuff or whatever -- but something to understand. When you said he does it

when he's " hanging out " it made me wonder if it's the start of rocking. I

can't remember when Aubrie started that, but it had to be after she had the

muscle control which is about right for where Max is, I think. If so --

it's not a worry, but it is something to know about and understand.

On the funny but positive comments from others -- What a great feeling! I

can still remember the first person who commented on Aubrie with " generic

comments " instead of the stares and concerns. It was a person who'd had a

sick baby so she knew to look past the feeding tube and comment on the

beautiful baby!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Amy-

Don't know about the nodding, but you're right to question and figure it

out. My gut tells me it's something -- either seizure stuff or self-stim

stuff or whatever -- but something to understand. When you said he does it

when he's " hanging out " it made me wonder if it's the start of rocking. I

can't remember when Aubrie started that, but it had to be after she had the

muscle control which is about right for where Max is, I think. If so --

it's not a worry, but it is something to know about and understand.

On the funny but positive comments from others -- What a great feeling! I

can still remember the first person who commented on Aubrie with " generic

comments " instead of the stares and concerns. It was a person who'd had a

sick baby so she knew to look past the feeding tube and comment on the

beautiful baby!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Hi Amy -

I wonder if Max's vision may have something to do with this? I know some

time ago there were posts about vision and head shaking... I think it was well

over a year ago... perhaps someone has a better memory than mine! It was an

issue for Gracie right about the time that she started gaining significant head

control... it was as though there was a difference in the way she processed

things... something changed and the shaking seemed to give her what she needed

to

focus. This was the observation of both her vision specialist and

opthamologist. Eventually it stopped. However, she does sometimes shake her

head side

to side, especially when super excited. Sometimes it comes out of nowhere,

but it is always something that we can interrupt.

I also wonder if there is a proprioceptive component for this behavior...?

Maybe it gives him some sort of input that he is seeking? The " rocking " that

is speaking of (I am assuming it's the same as so many kids with

CHARGE! Forgive me, , if I am speaking out of turn, here!) is when the

kids are lying on their backs and they rock back and forth. Gracie does this

ALOT! She tends to prefer the posture of lying flat on her back with arms up

over her head (hands clasped) and rocking back and forth... often with her knees

bent and one leg crossed over her knee. This is pretty common - - Postures or

" behaviors " like this are actually very purposeful for our kids. They give

the brain input that helps the child relate to their own body - - where it is

in space & that they are secure.

For Gracie, it is the way she soothes herself - - sometimes to sleep, as she

wakes up, when she has been really busy and needs a break... she does it ALOT!

We had a couple of night nurses who would try to make her stop (thinking she

was agitated) and we kept trying to explain that this behavior was good and

necessary for her... they did NOT get it... they didn't really read the info we

gave them... and as a result, they were outta here!

A GREAT article to read is Brown's article " Feeling the Pressure: The

forgotten sense of proprioception. " (Actually, anything that writes is

recommended reading! :-) He is WONDERFUL.) I think that it appeared in one

of the CHARGE Accounts last year, but I know you can get it at the California

Deaf-Blind Services Fall 2005 Newsletter. The link is

http://www.sfsu.edu/~cadbs and just search the Fall 2005 Newsletter.

I think you are super smart to ask here first... as Max continues to be the

Mighty little Man that he is, you will continue to notice new " mysterious "

things about him that will often be more accurately " explained " or recognized

here

than by the doctors! Hopefully, together, we can all educate our medical

professionals! :-)

Hope the appointment goes well... I think you said he has shots? Even though

they pale in comparison to the things our children go through, I always dread

them!

:-)

Kristi

Mommy to Gracie... turning " 3 " on Sunday. I CANNOT believe it!

[Guest guest]

Hi Amy -

I wonder if Max's vision may have something to do with this? I know some

time ago there were posts about vision and head shaking... I think it was well

over a year ago... perhaps someone has a better memory than mine! It was an

issue for Gracie right about the time that she started gaining significant head

control... it was as though there was a difference in the way she processed

things... something changed and the shaking seemed to give her what she needed

to

focus. This was the observation of both her vision specialist and

opthamologist. Eventually it stopped. However, she does sometimes shake her

head side

to side, especially when super excited. Sometimes it comes out of nowhere,

but it is always something that we can interrupt.

I also wonder if there is a proprioceptive component for this behavior...?

Maybe it gives him some sort of input that he is seeking? The " rocking " that

is speaking of (I am assuming it's the same as so many kids with

CHARGE! Forgive me, , if I am speaking out of turn, here!) is when the

kids are lying on their backs and they rock back and forth. Gracie does this

ALOT! She tends to prefer the posture of lying flat on her back with arms up

over her head (hands clasped) and rocking back and forth... often with her knees

bent and one leg crossed over her knee. This is pretty common - - Postures or

" behaviors " like this are actually very purposeful for our kids. They give

the brain input that helps the child relate to their own body - - where it is

in space & that they are secure.

For Gracie, it is the way she soothes herself - - sometimes to sleep, as she

wakes up, when she has been really busy and needs a break... she does it ALOT!

We had a couple of night nurses who would try to make her stop (thinking she

was agitated) and we kept trying to explain that this behavior was good and

necessary for her... they did NOT get it... they didn't really read the info we

gave them... and as a result, they were outta here!

A GREAT article to read is Brown's article " Feeling the Pressure: The

forgotten sense of proprioception. " (Actually, anything that writes is

recommended reading! :-) He is WONDERFUL.) I think that it appeared in one

of the CHARGE Accounts last year, but I know you can get it at the California

Deaf-Blind Services Fall 2005 Newsletter. The link is

http://www.sfsu.edu/~cadbs and just search the Fall 2005 Newsletter.

I think you are super smart to ask here first... as Max continues to be the

Mighty little Man that he is, you will continue to notice new " mysterious "

things about him that will often be more accurately " explained " or recognized

here

than by the doctors! Hopefully, together, we can all educate our medical

professionals! :-)

Hope the appointment goes well... I think you said he has shots? Even though

they pale in comparison to the things our children go through, I always dread

them!

:-)

Kristi

Mommy to Gracie... turning " 3 " on Sunday. I CANNOT believe it!

[Guest guest]

Hi Amy -

I wonder if Max's vision may have something to do with this? I know some

time ago there were posts about vision and head shaking... I think it was well

over a year ago... perhaps someone has a better memory than mine! It was an

issue for Gracie right about the time that she started gaining significant head

control... it was as though there was a difference in the way she processed

things... something changed and the shaking seemed to give her what she needed

to

focus. This was the observation of both her vision specialist and

opthamologist. Eventually it stopped. However, she does sometimes shake her

head side

to side, especially when super excited. Sometimes it comes out of nowhere,

but it is always something that we can interrupt.

I also wonder if there is a proprioceptive component for this behavior...?

Maybe it gives him some sort of input that he is seeking? The " rocking " that

is speaking of (I am assuming it's the same as so many kids with

CHARGE! Forgive me, , if I am speaking out of turn, here!) is when the

kids are lying on their backs and they rock back and forth. Gracie does this

ALOT! She tends to prefer the posture of lying flat on her back with arms up

over her head (hands clasped) and rocking back and forth... often with her knees

bent and one leg crossed over her knee. This is pretty common - - Postures or

" behaviors " like this are actually very purposeful for our kids. They give

the brain input that helps the child relate to their own body - - where it is

in space & that they are secure.

For Gracie, it is the way she soothes herself - - sometimes to sleep, as she

wakes up, when she has been really busy and needs a break... she does it ALOT!

We had a couple of night nurses who would try to make her stop (thinking she

was agitated) and we kept trying to explain that this behavior was good and

necessary for her... they did NOT get it... they didn't really read the info we

gave them... and as a result, they were outta here!

A GREAT article to read is Brown's article " Feeling the Pressure: The

forgotten sense of proprioception. " (Actually, anything that writes is

recommended reading! :-) He is WONDERFUL.) I think that it appeared in one

of the CHARGE Accounts last year, but I know you can get it at the California

Deaf-Blind Services Fall 2005 Newsletter. The link is

http://www.sfsu.edu/~cadbs and just search the Fall 2005 Newsletter.

I think you are super smart to ask here first... as Max continues to be the

Mighty little Man that he is, you will continue to notice new " mysterious "

things about him that will often be more accurately " explained " or recognized

here

than by the doctors! Hopefully, together, we can all educate our medical

professionals! :-)

Hope the appointment goes well... I think you said he has shots? Even though

they pale in comparison to the things our children go through, I always dread

them!

:-)

Kristi

Mommy to Gracie... turning " 3 " on Sunday. I CANNOT believe it!

[Guest guest]

Amy-

Let's see if I can explain Aubrie's rocking... She will rock forward and

back in a sitting position. She moves her whole body so that her head

nearly touches the floor and then upright again. This can be done very

forcefully and with accompanying singing/chanting/humming when she is

stressed or upset. When she's bored or tired, it's a more gently rhythmic

rocking. She also will move just her head either forward and back or side

to side if she's in a situation when she can't rock her whole body -- like

in the car seat or lying in bed.

What is it?? I think it's related the vestibular system. From the HANDLE

training and our quick consult with the neurodevelopmental psych, I think it

serves many purposes and that the exact way she does it can tell us a lot

about those purposes. I am hopeful that the eval with the dr will tell us a

lot more about it. What I do know is that Aubrie can't stop -- she *must*

do it. So whatever the reason is, it's quite powerful.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Amy-

Let's see if I can explain Aubrie's rocking... She will rock forward and

back in a sitting position. She moves her whole body so that her head

nearly touches the floor and then upright again. This can be done very

forcefully and with accompanying singing/chanting/humming when she is

stressed or upset. When she's bored or tired, it's a more gently rhythmic

rocking. She also will move just her head either forward and back or side

to side if she's in a situation when she can't rock her whole body -- like

in the car seat or lying in bed.

What is it?? I think it's related the vestibular system. From the HANDLE

training and our quick consult with the neurodevelopmental psych, I think it

serves many purposes and that the exact way she does it can tell us a lot

about those purposes. I am hopeful that the eval with the dr will tell us a

lot more about it. What I do know is that Aubrie can't stop -- she *must*

do it. So whatever the reason is, it's quite powerful.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Amy-

Let's see if I can explain Aubrie's rocking... She will rock forward and

back in a sitting position. She moves her whole body so that her head

nearly touches the floor and then upright again. This can be done very

forcefully and with accompanying singing/chanting/humming when she is

stressed or upset. When she's bored or tired, it's a more gently rhythmic

rocking. She also will move just her head either forward and back or side

to side if she's in a situation when she can't rock her whole body -- like

in the car seat or lying in bed.

What is it?? I think it's related the vestibular system. From the HANDLE

training and our quick consult with the neurodevelopmental psych, I think it

serves many purposes and that the exact way she does it can tell us a lot

about those purposes. I am hopeful that the eval with the dr will tell us a

lot more about it. What I do know is that Aubrie can't stop -- she *must*

do it. So whatever the reason is, it's quite powerful.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ