Head Shake Question

[Guest guest]

Judy,

Not really seeing it a few things came to mind including sensory stimulation

or balance issues. The idea of the video is great. Bet that once you get it

out though she'll stop.

Bonnie

[Guest guest]

Judy, Raegan is without a doubt a total little doll! she just sounds so so

cute.

The head shaking-does this occur only with the cold she's having and the

meds she's on?

Or is it at all times here and there?

You know, to tell you the truth-I think I do what you mentioned once in a

while, when stretching my neck out.

And if its with the cold, it might come along with trying to breath in

thru her nose?? Or icky stuff going down her throat?

How long have you noticed this?

Hope she feels better soon. There's a good chance it'll be just like Bonnie

said. You'll finally get it on tape, and she'll never do it again> kids...

in Ma. (, 21 yrs)

[Guest guest]

Hi Everyone,

Raegan is now 16 months and doing very well. She crawls everywhere,even up

stairs, she is cruising on all furniture and walking holding someones hands or a

push toy, she uses about 10 signs and babbles constantly, favoring the word

" uh-oh " , she is mailny tube fed, eating very little orally and she has excellent

vision despite her retinal colobomas. Right now she has a terrible head cold,

she is taking amoxicillan and dimetapp. We have been noticing that at random

times she will be holding her head stiff but also moving it in small vibrations,

you can hardly notice it sometimes, I hope I'm explaining well enough for you to

understand. Could this be a seizure? When doing it she acts fine and is fine

after also. It is very odd and I had her at the pediatrician today and he said

to see if we can video tape her doing this and take it with us to her

neurologist, which she is seeing in 2 1/2 weeks. I was just wondering if anyone

else experienced this or some other type of odd

behavior. I am at a loss as to what it is, if it is even anything. Hope this

makes sense, I'm in the middle on making dinner and trying to get this out

quickly. I'd appreciate all and any input that you wise, experienced parents may

have. Thanks for your help.

Judy

[Guest guest]

Thanks Bonnie-

I also thought sensory stimulation. Raegan's PT and OT don't think it's

anything to do with balance issues, but as we know with CHARGE, you never know!!

Thanks for you input.

Judy

Turk22082@... wrote:

Judy,

Not really seeing it a few things came to mind including sensory stimulation

or balance issues. The idea of the video is great. Bet that once you get it

out though she'll stop.

Bonnie

[Guest guest]

Hi ,

I have put in my notes for the neurologist that we just noticed this while at

the same time she's been on the meds for her cold. I don't think, well I hope,

that is hasn't been happening and I've been missing it. My pediatrician today

said it could be a number of things, maybe she got a chill, maybe she's

urinating, maybe her ears are bothering her, so many maybes. Thanks for sharing

and I will agree with you that Raegan is a doll!

Judy

mdlinda@... wrote:

Judy, Raegan is without a doubt a total little doll! she just sounds

so so

cute.

The head shaking-does this occur only with the cold she's having and the

meds she's on?

Or is it at all times here and there?

You know, to tell you the truth-I think I do what you mentioned once in a

while, when stretching my neck out.

And if its with the cold, it might come along with trying to breath in

thru her nose?? Or icky stuff going down her throat?

How long have you noticed this?

Hope she feels better soon. There's a good chance it'll be just like Bonnie

said. You'll finally get it on tape, and she'll never do it again> kids...

in Ma. (, 21 yrs)

[Guest guest]

Max does the same thing! His pediatrician thought it might be a seizure so we

had an EEG but everything was completely normal. But since he still is doing it

on occasion, we are redoing it this fall. I know some of the parents mentioned

earlier that it might be a little self stim?

Judith wrote: Hi Everyone,

Raegan is now 16 months and doing very well. She crawls everywhere,even up

stairs, she is cruising on all furniture and walking holding someones hands or a

push toy, she uses about 10 signs and babbles constantly, favoring the word

" uh-oh " , she is mailny tube fed, eating very little orally and she has excellent

vision despite her retinal colobomas. Right now she has a terrible head cold,

she is taking amoxicillan and dimetapp. We have been noticing that at random

times she will be holding her head stiff but also moving it in small vibrations,

you can hardly notice it sometimes, I hope I'm explaining well enough for you to

understand. Could this be a seizure? When doing it she acts fine and is fine

after also. It is very odd and I had her at the pediatrician today and he said

to see if we can video tape her doing this and take it with us to her

neurologist, which she is seeing in 2 1/2 weeks. I was just wondering if anyone

else experienced this or some other type of odd

behavior. I am at a loss as to what it is, if it is even anything. Hope this

makes sense, I'm in the middle on making dinner and trying to get this out

quickly. I'd appreciate all and any input that you wise, experienced parents may

have. Thanks for your help.

Judy

[Guest guest]

Judy,

I again can only echo others but this time shall add a bit of my own. My

smiling guess is that Bonnie is correct: as soon as you have a camera

visable, the behavior will cease.

That said, at times has always kind of...stopped (don't know how

else to describe it). I don't have your post in front of me --- stiff neck,

etc?? I

remember actually asking the staff at Perkins whether this could be

seizures and was told no --- and those professionals have seen this sort

of behavior as well as seizures for years and years.

Try to relax a bit. I know it's hard. As a super paranoid parent, with

's big sister, I insisted to the ped that E. was spacing out while

nursing. He had me demonstrate. Sure she was. She was happy and

full. I think does something similar just not with the same stimulus.

Martha

[Guest guest]

Judy,

It could be lots of things--the cold, sensory stimulation. But it could also

be small absence seizures. Did it just start with the cold? If so, it may just

be something related to that, like head congestion, that's annoying Raegan.

Have you noticed it other times, though? Does she stop what she's doing and

kind of stare when she does the head shake? That might be more indicative of

absence seizures.

The video is a great idea. We did a video of when we were suspecting

seizures and took it to a neurologist, and he was pretty sure it was seizures

after just watching it. He ordered a 24-hour EEG, and it confirmed seizures.

She's been on seizure meds for about a year now, and we are finally seeing some

improvement after trying a couple different meds and different dosages. Don't

be alarmed if it does turn out to be seizures--they can be pretty manageable and

may turn out to be minor enough to avoid meds.

Let us know what you find out.

, mom to (4)

---------------------------------

Get your email and more, right on the new Yahoo.com

[Guest guest]

Thanks Amy, does max do this often and for how long does it last? What is

involoved in an EEG?

Judy

Amy McKinley wrote:

Max does the same thing! His pediatrician thought it might be a

seizure so we had an EEG but everything was completely normal. But since he

still is doing it on occasion, we are redoing it this fall. I know some of the

parents mentioned earlier that it might be a little self stim?

Judith wrote: Hi Everyone,

Raegan is now 16 months and doing very well. She crawls everywhere,even up

stairs, she is cruising on all furniture and walking holding someones hands or a

push toy, she uses about 10 signs and babbles constantly, favoring the word

" uh-oh " , she is mailny tube fed, eating very little orally and she has excellent

vision despite her retinal colobomas. Right now she has a terrible head cold,

she is taking amoxicillan and dimetapp. We have been noticing that at random

times she will be holding her head stiff but also moving it in small vibrations,

you can hardly notice it sometimes, I hope I'm explaining well enough for you to

understand. Could this be a seizure? When doing it she acts fine and is fine

after also. It is very odd and I had her at the pediatrician today and he said

to see if we can video tape her doing this and take it with us to her

neurologist, which she is seeing in 2 1/2 weeks. I was just wondering if anyone

else experienced this or some other type of odd

behavior. I am at a loss as to what it is, if it is even anything. Hope this

makes sense, I'm in the middle on making dinner and trying to get this out

quickly. I'd appreciate all and any input that you wise, experienced parents may

have. Thanks for your help.

Judy

[Guest guest]

Hi Martha,

Thanks for sharing, I know I definitely go over board with Raegan and look at

every little thing, I notice things regarding her that my 3 1/2 year old

probably did and I never thought twice about it. But as you know, with that

CHARGE label, we look at every little thing with a fine tooth comb. My gut is

telling me that it isn't a big deal, but I don't want to overlook anything at

the same time. Hope to find answers soon.

Judy

lewcap@... wrote:

Judy,

I again can only echo others but this time shall add a bit of my own. My

smiling guess is that Bonnie is correct: as soon as you have a camera

visable, the behavior will cease.

That said, at times has always kind of...stopped (don't know how

else to describe it). I don't have your post in front of me --- stiff neck,

etc?? I

remember actually asking the staff at Perkins whether this could be

seizures and was told no --- and those professionals have seen this sort

of behavior as well as seizures for years and years.

Try to relax a bit. I know it's hard. As a super paranoid parent, with

's big sister, I insisted to the ped that E. was spacing out while

nursing. He had me demonstrate. Sure she was. She was happy and

full. I think does something similar just not with the same stimulus.

Martha

[Guest guest]

,

When Raegan does her head shake, it is so fast that she really doesn't stop

what she's doing at the time, she kind of does her thing while engaged in

whatever activity. The only thing that is common on my observation list is that

I notice these shakes after she wakes up from her nap, later in the afternoon,

and we just noticed them during her cold over the last few days. When did

start having seizures? I'm hoping to get video this weekend while my husband is

home. I'll keep you posted. Thanks for sharing your experience with .

Judy

Kauffman wrote:

Judy,

It could be lots of things--the cold, sensory stimulation. But it could also be

small absence seizures. Did it just start with the cold? If so, it may just be

something related to that, like head congestion, that's annoying Raegan. Have

you noticed it other times, though? Does she stop what she's doing and kind of

stare when she does the head shake? That might be more indicative of absence

seizures.

The video is a great idea. We did a video of when we were suspecting

seizures and took it to a neurologist, and he was pretty sure it was seizures

after just watching it. He ordered a 24-hour EEG, and it confirmed seizures.

She's been on seizure meds for about a year now, and we are finally seeing some

improvement after trying a couple different meds and different dosages. Don't be

alarmed if it does turn out to be seizures--they can be pretty manageable and

may turn out to be minor enough to avoid meds.

Let us know what you find out.

, mom to (4)

---------------------------------

Get your email and more, right on the new Yahoo.com

[Guest guest]

Evan does this too--shakes his head from side to side like he is saying no.

Mostly when he gets really excited about something (these days, when we put in a

Baby Einstein video, when we sign milk for him as we get his pump set up, when

we blow raspberries on his tummy, when we try to spoon feed him, when we try to

put his hearing aides in and sometimes after they are in and turned on). When

he is laying down and does it, his arms and legs will stiffen and he makes

little fists. I had never thought of these as seizures, just as self-stim but

we have never had an EEG done. The times when he has been hooked up to his

oximeter, we have noted that his sats and heart rate do not change during these

episodes.

We did have a little bit of a " scare " about seizures at 4 months, right before

Evan was able to come home from the hospital. He would have episodes where both

eyes would roll downward (in a beating motion). It came on all of a sudden.

His neurology consult and brain MRI were both normal, and the episodes lessened

over the next month or so. He hasn't done it in at least 10 months now. His

sats and heart rate always stayed stable when this happened (which I was told

they will change with a seizure). If you have an oximeter still, and could

" catch " her doing the behavior you could check this. It's not a substitute for

an EEG of course, but it might give you some reassurance if it's normal.

(mom to Evan 14 months)

Judith wrote:

Thanks Amy, does max do this often and for how long does it last? What

is involoved in an EEG?

Judy

Amy McKinley wrote:

Max does the same thing! His pediatrician thought it might be a seizure so we

had an EEG but everything was completely normal. But since he still is doing it

on occasion, we are redoing it this fall. I know some of the parents mentioned

earlier that it might be a little self stim?

Judith wrote: Hi Everyone,

Raegan is now 16 months and doing very well. She crawls everywhere,even up

stairs, she is cruising on all furniture and walking holding someones hands or a

push toy, she uses about 10 signs and babbles constantly, favoring the word

" uh-oh " , she is mailny tube fed, eating very little orally and she has excellent

vision despite her retinal colobomas. Right now she has a terrible head cold,

she is taking amoxicillan and dimetapp. We have been noticing that at random

times she will be holding her head stiff but also moving it in small vibrations,

you can hardly notice it sometimes, I hope I'm explaining well enough for you to

understand. Could this be a seizure? When doing it she acts fine and is fine

after also. It is very odd and I had her at the pediatrician today and he said

to see if we can video tape her doing this and take it with us to her

neurologist, which she is seeing in 2 1/2 weeks. I was just wondering if anyone

else experienced this or some other type of odd

behavior. I am at a loss as to what it is, if it is even anything. Hope this

makes sense, I'm in the middle on making dinner and trying to get this out

quickly. I'd appreciate all and any input that you wise, experienced parents may

have. Thanks for your help.

Judy

[Guest guest]

,

When Raegan does her head shake, her head hardly moves, it's more like her

head vibrates. Raegan has never been on an oximeter, so I guess the only way

we'll know something is after we go to the neurologist, hopefully they will want

to do an EEG. She did have a brain MRI while in the NICU, but that was 16 months

ago. Evan sounds so cute, Raegan also gets very excited when we get her pump

ready, she signs milk before we even get the chance to. Thanks for the info.

Judy

Key Storrs wrote:

Evan does this too--shakes his head from side to side like he is

saying no. Mostly when he gets really excited about something (these days, when

we put in a Baby Einstein video, when we sign milk for him as we get his pump

set up, when we blow raspberries on his tummy, when we try to spoon feed him,

when we try to put his hearing aides in and sometimes after they are in and

turned on). When he is laying down and does it, his arms and legs will stiffen

and he makes little fists. I had never thought of these as seizures, just as

self-stim but we have never had an EEG done. The times when he has been hooked

up to his oximeter, we have noted that his sats and heart rate do not change

during these episodes.

We did have a little bit of a " scare " about seizures at 4 months, right before

Evan was able to come home from the hospital. He would have episodes where both

eyes would roll downward (in a beating motion). It came on all of a sudden. His

neurology consult and brain MRI were both normal, and the episodes lessened over

the next month or so. He hasn't done it in at least 10 months now. His sats and

heart rate always stayed stable when this happened (which I was told they will

change with a seizure). If you have an oximeter still, and could " catch " her

doing the behavior you could check this. It's not a substitute for an EEG of

course, but it might give you some reassurance if it's normal.

(mom to Evan 14 months)

Judith wrote:

Thanks Amy, does max do this often and for how long does it last? What is

involoved in an EEG?

Judy

Amy McKinley wrote:

Max does the same thing! His pediatrician thought it might be a seizure so we

had an EEG but everything was completely normal. But since he still is doing it

on occasion, we are redoing it this fall. I know some of the parents mentioned

earlier that it might be a little self stim?

Judith wrote: Hi Everyone,

Raegan is now 16 months and doing very well. She crawls everywhere,even up

stairs, she is cruising on all furniture and walking holding someones hands or a

push toy, she uses about 10 signs and babbles constantly, favoring the word

" uh-oh " , she is mailny tube fed, eating very little orally and she has excellent

vision despite her retinal colobomas. Right now she has a terrible head cold,

she is taking amoxicillan and dimetapp. We have been noticing that at random

times she will be holding her head stiff but also moving it in small vibrations,

you can hardly notice it sometimes, I hope I'm explaining well enough for you to

understand. Could this be a seizure? When doing it she acts fine and is fine

after also. It is very odd and I had her at the pediatrician today and he said

to see if we can video tape her doing this and take it with us to her

neurologist, which she is seeing in 2 1/2 weeks. I was just wondering if anyone

else experienced this or some other type of odd

behavior. I am at a loss as to what it is, if it is even anything. Hope this

makes sense, I'm in the middle on making dinner and trying to get this out

quickly. I'd appreciate all and any input that you wise, experienced parents may

have. Thanks for your help.

Judy

[Guest guest]

Judy,

We started noticing 's seizures a little over a year ago. She was 3 1/2

at the time. She could have had them earlier and we just didn't notice until

they became more obvious--it's hard to know, looking back.

's sometimes involve some head-shaking, but hers are accompanied by a

blank stare that you can't bring her out of for a few seconds. The fact that

Raegan continues playing through her head shakes could be a good sign that hers

are just more self-stim or related to head or ear congestion. Does Raegan do

any rapid blinking with the head shakes? 's seizures are often accompanied

by really rapid blinking too, although we didn't notice that happening as much

until just the past few months. The one thing you mentioned, though, that did

raise a flag for me is that Raegan does this mostly after naps. That's when

most of 's seizures occur. I'm not sure what the correlation there is,

though. I'm planning to ask the neurologist the next time we go in.

Keep us posted on what you find out. I'm hoping you get good news that it's

not seizures, but you are smart in having it checked out early.

, mom to (4)

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