Re: Theratog Vest - Aspiration (double whammy post here...)

[Guest guest]

,

My son is 1 year old and we are waiting for our theratog vest to arrive. They

give you a 45 day free trail period to see if it's right for your child. All you

have to do is call customer service,they will walk you through everything. My

son is also having a swallow study done next month. He is always congested but

responds well to the thick it. I wish you and your family the best, all we can

do is continue to search for more options for our children.

Harness

Sent from my iPhone

>

> Just taking a shot in the dark to see if anyone has a used Theratog vest or

something similar for our 10-month old, Lucy. She weighs about 21 pounds.

Since they are so expensive, we wanted to see if it will be useful before we

have one custom made for her. We will take a donation or pay for one:)

>

> Also, we just confirmed what we suspected, and that is that Lucy is

aspirating, even with thickened liquids (we had a swallow study yesterday). My

question about this is, does a swallow study like this almost always lead to a

G-tube? Lucy hasn't had any infections and continues to gain weight, she is

just always congested after a meal. My wife and I feel like she has been

aspirating for about 6 months, but besides the choking and congestion during

feeding, it doesn't see to bother her. We are not " anti-tube " , I guess we are

just trying to figure out if that is where we are headed, or if there is a

possibility that this is something that might resolve on its own.

>

> Doing to see Dobyns in December...Nervous and excited:) Also going to see an

ABM therapist in Black Mountain, NC. I guess we can truly say we are exploring

all options to help little Lucy at this point.

>

> - Kollar

>

>

>

>

> To: polymicrogyria

> From: kimat401@...

> Date: Thu, 2 Aug 2012 23:49:13 -0400

> Subject: Rifton pacer gait trainer forearm prompts

>

>

>

>

>

> Anyone have forearm prompts for a size small pacer gait trainer that they're

looking to sell? Kicking myself for not getting them with the insurance claim,

but wasn't sure they were gonna approve it and I didn't wanna press my luck.

Anyway, they're $400 a pair new so I thought I'd ask here if someone has them

available used. Thanks so much!!

>

> Kim

> Mom to D - 20 months, unilateral Pmg

>

> �I am learning all the time. The tombstone will be my diploma.�

> � Eartha Kitt

>

>

>

>

>

>

>

[Guest guest]

Hi,

Our daughter just turned nine, and was diagnosed with PMG at almost one year

old. She is low tone, through out her whole body, and our OT at the time (who

was great) explained to me that kids with low tone have low muscle tone

everywhere, even in their mouths and throats, and that is why many of them have

a hard time sucking, swallowing, etc. That said, it is not my understanding that

a tube is a foregone conclusion. There are therapies available that strengthen

the muscles needed for swallowing and clearing mucous.

We used Theratogs at the beginning, just for some added proprioceptive input. I

found them challenging to put on, but when the PT did it, they seemed to help a

bit. For our daughter, it wasn't dramatic, but something is something, right?

All of us want to do what we can for our kids. Worth a try!

Good luck,

Thea

Rifton pacer gait trainer forearm prompts

>

>

>

>

>

> Anyone have forearm prompts for a size small pacer gait trainer that they're

looking to sell? Kicking myself for not getting them with the insurance claim,

but wasn't sure they were gonna approve it and I didn't wanna press my luck.

Anyway, they're $400 a pair new so I thought I'd ask here if someone has them

available used. Thanks so much!!

>

> Kim

> Mom to D - 20 months, unilateral Pmg

>

> �I am learning all the time. The tombstone will be my diploma.�

> � Eartha Kitt

>

>

>

>

>

>

>

[Guest guest]

My son, went for Electric Stim therapy on his throat to try to help

swallowing.  The Speech therapist word long and hard with him but she said she

thought the issue was more than tone in throat.  Neurologically the message

couldn't get to his throat to swallow at the correct times.   This is alot

like trying to talk.  Brain tells the mouth and throat what to do but it just

doesn't happen.

Thank God for Communication devices!!!

________________________________

To: polymicrogyria

Sent: Friday, August 3, 2012 3:09 PM

Subject: Re: Theratog Vest - Aspiration (double whammy post

here...)

 

Hi,

Our daughter just turned nine, and was diagnosed with PMG at almost one year

old. She is low tone, through out her whole body, and our OT at the time (who

was great) explained to me that kids with low tone have low muscle tone

everywhere, even in their mouths and throats, and that is why many of them have

a hard time sucking, swallowing, etc. That said, it is not my understanding that

a tube is a foregone conclusion. There are therapies available that strengthen

the muscles needed for swallowing and clearing mucous.

We used Theratogs at the beginning, just for some added proprioceptive input. I

found them challenging to put on, but when the PT did it, they seemed to help a

bit. For our daughter, it wasn't dramatic, but something is something, right?

All of us want to do what we can for our kids. Worth a try!

Good luck,

Thea

Rifton pacer gait trainer forearm prompts

>

>

>

>

>

> Anyone have forearm prompts for a size small pacer gait trainer that they're

looking to sell? Kicking myself for not getting them with the insurance claim,

but wasn't sure they were gonna approve it and I didn't wanna press my luck.

Anyway, they're $400 a pair new so I thought I'd ask here if someone has them

available used. Thanks so much!!

>

> Kim

> Mom to D - 20 months, unilateral Pmg

>

> �I am learning all the time. The tombstone will be my diploma.�

> � Eartha Kitt

>

>

>

>

>

>

>

[Guest guest]

My son, didn't get his g-tube he was 18 years old.  I thought we would be

fighting to keep him out of the food because he loved everything he ate.  Guess

what, he came home from hospital and all he ever asked for was Amer cheese which

he gets a piece each day.  He feels so much better.

What I am saying is Lucy can get g-tube anytime.  I will tell you that when

was younger, I often fought with him to get meds into him so the g-tube is

great for that. 

Has a speech therapist showed you how to put pressure on Lucy's tongue with the

spoon when you are feeding? Also, stimulating the inside of her mouth with a nuk

brush prior to meals might help her.

Keep working at it.   Lucy will show you when the time comes.

________________________________

To: polymicrogyria

Sent: Friday, August 3, 2012 9:06 AM

Subject: Theratog Vest - Aspiration (double whammy post

here...)

Just taking a shot in the dark to see if anyone has a used Theratog vest or

something similar for our 10-month old, Lucy.  She weighs about 21 pounds. 

Since they are so expensive, we wanted to see if it will be useful before we

have one custom made for her.  We will take a donation or pay for one:)

Also, we just confirmed what we suspected, and that is that Lucy is aspirating,

even with thickened liquids (we had a swallow study yesterday).  My question

about this is, does a swallow study like this almost always lead to a G-tube? 

Lucy hasn't had any infections and continues to gain weight, she is just always

congested after a meal.  My wife and I feel like she has been aspirating for

about 6 months, but besides the choking and congestion during feeding, it

doesn't see to bother her.  We are not " anti-tube " , I guess we are just trying

to figure out if that is where we are headed, or if there is a possibility that

this is something that might resolve on its own.

Doing to see Dobyns in December...Nervous and excited:)  Also going to see an

ABM therapist in Black Mountain, NC.  I guess we can truly say we are exploring

all options to help little Lucy at this point.

- Kollar

To: polymicrogyria

From: kimat401@...

Date: Thu, 2 Aug 2012 23:49:13 -0400

Subject: Rifton pacer gait trainer forearm prompts

 

Anyone have forearm prompts for a size small pacer gait trainer that they're

looking to sell? Kicking myself for not getting them with the insurance claim,

but wasn't sure they were gonna approve it and I didn't wanna press my luck.

Anyway, they're $400 a pair new so I thought I'd ask here if someone has them

available used. Thanks so much!!

Kim

Mom to D - 20 months, unilateral Pmg

“I am learning all the time. The tombstone will be my diploma.â€

— Eartha Kitt

                       

[Guest guest]

Thank so much Dawn...I am gonna ask our speech therapist about these things:)

-

Sent from my iPod

> My son, didn't get his g-tube he was 18 years old. I thought we would be

fighting to keep him out of the food because he loved everything he ate. Guess

what, he came home from hospital and all he ever asked for was Amer cheese which

he gets a piece each day. He feels so much better.

> What I am saying is Lucy can get g-tube anytime. I will tell you that when

was younger, I often fought with him to get meds into him so the g-tube is

great for that.

> Has a speech therapist showed you how to put pressure on Lucy's tongue with

the spoon when you are feeding? Also, stimulating the inside of her mouth with a

nuk brush prior to meals might help her.

> Keep working at it. Lucy will show you when the time comes.

>

>

> ________________________________

>

> To: polymicrogyria

> Sent: Friday, August 3, 2012 9:06 AM

> Subject: Theratog Vest - Aspiration (double whammy post

here...)

>

>

> Just taking a shot in the dark to see if anyone has a used Theratog vest or

something similar for our 10-month old, Lucy. She weighs about 21 pounds.

Since they are so expensive, we wanted to see if it will be useful before we

have one custom made for her. We will take a donation or pay for one:)

>

> Also, we just confirmed what we suspected, and that is that Lucy is

aspirating, even with thickened liquids (we had a swallow study yesterday). My

question about this is, does a swallow study like this almost always lead to a

G-tube? Lucy hasn't had any infections and continues to gain weight, she is

just always congested after a meal. My wife and I feel like she has been

aspirating for about 6 months, but besides the choking and congestion during

feeding, it doesn't see to bother her. We are not " anti-tube " , I guess we are

just trying to figure out if that is where we are headed, or if there is a

possibility that this is something that might resolve on its own.

>

> Doing to see Dobyns in December...Nervous and excited:) Also going to see an

ABM therapist in Black Mountain, NC. I guess we can truly say we are exploring

all options to help little Lucy at this point.

>

> - Kollar

>

> To: polymicrogyria

> From: kimat401@...

> Date: Thu, 2 Aug 2012 23:49:13 -0400

> Subject: Rifton pacer gait trainer forearm prompts

>

>

>

> Anyone have forearm prompts for a size small pacer gait trainer that they're

looking to sell? Kicking myself for not getting them with the insurance claim,

but wasn't sure they were gonna approve it and I didn't wanna press my luck.

Anyway, they're $400 a pair new so I thought I'd ask here if someone has them

available used. Thanks so much!!

>

> Kim

> Mom to D - 20 months, unilateral Pmg

>

> “I am learning all the time. The tombstone will be my diploma.â€

> — Eartha Kitt

>

>

>

>

[Guest guest]

Thanks ...our kids sound a bit alike. Lucy is the same way with her

bottles, just congested after she is done. We are hoping that as she gets

stronger, she will be able to swallow better. I am going to call the Theratog

customer service today!

-

Sent from my iPod

> ,

> My son is 1 year old and we are waiting for our theratog vest to arrive. They

give you a 45 day free trail period to see if it's right for your child. All you

have to do is call customer service,they will walk you through everything. My

son is also having a swallow study done next month. He is always congested but

responds well to the thick it. I wish you and your family the best, all we can

do is continue to search for more options for our children.

> Harness

>

> Sent from my iPhone

>

>

>

> >

> > Just taking a shot in the dark to see if anyone has a used Theratog vest or

something similar for our 10-month old, Lucy. She weighs about 21 pounds. Since

they are so expensive, we wanted to see if it will be useful before we have one

custom made for her. We will take a donation or pay for one:)

> >

> > Also, we just confirmed what we suspected, and that is that Lucy is

aspirating, even with thickened liquids (we had a swallow study yesterday). My

question about this is, does a swallow study like this almost always lead to a

G-tube? Lucy hasn't had any infections and continues to gain weight, she is just

always congested after a meal. My wife and I feel like she has been aspirating

for about 6 months, but besides the choking and congestion during feeding, it

doesn't see to bother her. We are not " anti-tube " , I guess we are just trying to

figure out if that is where we are headed, or if there is a possibility that

this is something that might resolve on its own.

> >

> > Doing to see Dobyns in December...Nervous and excited:) Also going to see an

ABM therapist in Black Mountain, NC. I guess we can truly say we are exploring

all options to help little Lucy at this point.

> >

> > - Kollar

> >

> >

> >

> >

> > To: polymicrogyria

> > From: kimat401@...

> > Date: Thu, 2 Aug 2012 23:49:13 -0400

> > Subject: Rifton pacer gait trainer forearm prompts

> >

> >

> >

> >

> >

> > Anyone have forearm prompts for a size small pacer gait trainer that they're

looking to sell? Kicking myself for not getting them with the insurance claim,

but wasn't sure they were gonna approve it and I didn't wanna press my luck.

Anyway, they're $400 a pair new so I thought I'd ask here if someone has them

available used. Thanks so much!!

> >

> > Kim

> > Mom to D - 20 months, unilateral Pmg

> >

> > �I am learning all the time. The tombstone will be my diploma.�

> > � Eartha Kitt

> >

> >

> >

> >

> >

> >

> >