New member and lip smacking

[Guest guest]

Greetings,

I thought I'd introduce myself, as I'm a new member to this group.

My daughter, Anne, who's 2.5 years old, has bilateral, frontal PMG (diagnosed at

9 months of age). She also has a rare chromosomal abnormality. Briefly, she is

missing the end of the long arm of her 6th chromosome. (She is one of 40

documented cases worldwide. Since it's so rare, there is no name to her

disorder.) She has a number of medical issues, but, by far, PMG is the worst.

Sadly, she has a seizure disorder due to PMG. She is on Keppra to control the

daily seizures, but her break-through seizures are difficult to treat.

Anyway, she is the happiest child I've ever known, and she exudes that joy

wherever we go. She's also quick to give a hug, a smile, and a wave to everyone.

She is barely able to speak. Currently, she only makes the m, o, and a sounds,

but she's not very good at putting them together. She does some signing, as

well. Usually, she's good at getting her point across by gesturing. (And, we're

teaching her to communicate with her iPad.)

Lately, we've been trying to teach her to say, " mama " and " more. " She's able to

move her lips the correct way, but she doesn't vocalize. So, all we hear is her

lip smacking (twice for " Mama " , once for " more " ). Has anyone else had experience

with this? If so, do you have suggestions about how we can help her coordinate

her voice with the lip movements? She can spontaneously say " ma " , but, if she

thinks about it, all we hear is the lip smack.

I really appreciate the incite and experiences posted on this group! You're an

amazing set of parents and caregivers!

Best wishes,

[Guest guest]

, Welcome to the group sorry to have found you for this reason. Nisha did

experience this a little bit. Her SLP and OT did awareness of her mouth like

cold, crunchy, sour, vibration, taping her chest and music instruments. Have you

tried like cranial sacral therapy? I have heard hyperbaric oxygen too for

speech. I think you have to look at the core and breath control? I do kinesio

taping which is non invasive and helps Nisha to sound more intelligible. I

believe they also do estim to the face now we just do the legs. Let me know if

you need further information.Diane mom Nisha 4 PMG left hemi CP seizures

To: polymicrogyria

From: ljcassenti@...

Date: Sun, 20 Feb 2011 05:03:12 +0000

Subject: New member and lip smacking

Greetings,

I thought I'd introduce myself, as I'm a new member to this group.

My daughter, Anne, who's 2.5 years old, has bilateral, frontal PMG (diagnosed at

9 months of age). She also has a rare chromosomal abnormality. Briefly, she is

missing the end of the long arm of her 6th chromosome. (She is one of 40

documented cases worldwide. Since it's so rare, there is no name to her

disorder.) She has a number of medical issues, but, by far, PMG is the worst.

Sadly, she has a seizure disorder due to PMG. She is on Keppra to control the

daily seizures, but her break-through seizures are difficult to treat.

Anyway, she is the happiest child I've ever known, and she exudes that joy

wherever we go. She's also quick to give a hug, a smile, and a wave to everyone.

She is barely able to speak. Currently, she only makes the m, o, and a sounds,

but she's not very good at putting them together. She does some signing, as

well. Usually, she's good at getting her point across by gesturing. (And, we're

teaching her to communicate with her iPad.)

Lately, we've been trying to teach her to say, " mama " and " more. " She's able to

move her lips the correct way, but she doesn't vocalize. So, all we hear is her

lip smacking (twice for " Mama " , once for " more " ). Has anyone else had experience

with this? If so, do you have suggestions about how we can help her coordinate

her voice with the lip movements? She can spontaneously say " ma " , but, if she

thinks about it, all we hear is the lip smack.

I really appreciate the incite and experiences posted on this group! You're an

amazing set of parents and caregivers!

Best wishes,

[Guest guest]

Wow! Thanks, Diane! You've certainly mentioned a lot of things to think about.

We've tried oral awareness (and she certainly loves to eat and to put things in

her mouth) and playing the kazoo. She does well with those.

On the other hand, when we ask her to blow on her food, she breathes out/blows

through her nose. So, it may have something to do with realizing that she can

move air through her mouth. Perhaps the kazoo feels like her mouth is closed and

she can make noise? Hmm....

And, our speech therapists are all stymied. I'll ask them about taping, though.

(The PTs use the tape on other kids in her playgroup, so I know they do it.)

Thanks so much for your help! It's given me new ideas!

Take care,

>

>

> , Welcome to the group sorry to have found you for this reason. Nisha

did experience this a little bit. Her SLP and OT did awareness of her mouth like

cold, crunchy, sour, vibration, taping her chest and music instruments. Have you

tried like cranial sacral therapy? I have heard hyperbaric oxygen too for

speech. I think you have to look at the core and breath control? I do kinesio

taping which is non invasive and helps Nisha to sound more intelligible. I

believe they also do estim to the face now we just do the legs. Let me know if

you need further information.Diane mom Nisha 4 PMG left hemi CP seizures

>

> To: polymicrogyria

> From: ljcassenti@...

> Date: Sun, 20 Feb 2011 05:03:12 +0000

> Subject: New member and lip smacking

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> Greetings,

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> I thought I'd introduce myself, as I'm a new member to this group.

>

>

>

> My daughter, Anne, who's 2.5 years old, has bilateral, frontal PMG (diagnosed

at 9 months of age). She also has a rare chromosomal abnormality. Briefly, she

is missing the end of the long arm of her 6th chromosome. (She is one of 40

documented cases worldwide. Since it's so rare, there is no name to her

disorder.) She has a number of medical issues, but, by far, PMG is the worst.

Sadly, she has a seizure disorder due to PMG. She is on Keppra to control the

daily seizures, but her break-through seizures are difficult to treat.

>

>

>

> Anyway, she is the happiest child I've ever known, and she exudes that joy

wherever we go. She's also quick to give a hug, a smile, and a wave to everyone.

>

>

>

> She is barely able to speak. Currently, she only makes the m, o, and a sounds,

but she's not very good at putting them together. She does some signing, as

well. Usually, she's good at getting her point across by gesturing. (And, we're

teaching her to communicate with her iPad.)

>

>

>

> Lately, we've been trying to teach her to say, " mama " and " more. " She's able

to move her lips the correct way, but she doesn't vocalize. So, all we hear is

her lip smacking (twice for " Mama " , once for " more " ). Has anyone else had

experience with this? If so, do you have suggestions about how we can help her

coordinate her voice with the lip movements? She can spontaneously say " ma " ,

but, if she thinks about it, all we hear is the lip smack.

>

>

>

> I really appreciate the incite and experiences posted on this group! You're an

amazing set of parents and caregivers!

>

>

>

> Best wishes,

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