Arnold Chiari Malformation and Swallowing difficulties

[Guest guest]

Abigail(10.5 months old wcf) has been on solid food only since she

was 8 months old. Some of what she swallows enters her lungs, she

she is not allowed any liquids.

An MRI showed that Abigail has Arnold Chiari Type I. This

malformation allows the brain stem to protrude down into the spinal

cord. Abby's nuerologist wants to do surgery. He will increase the

size of the hole in the scull and remove part of the top vertibrate.

This will keep the spinal fluid lding up in her head. Also, Abby's

brain is actually resting right on the on the top vertibrate. This

is why he wants to remove part of this vertibrate. He beleives that

this condition is contributing (or causing) her swallowing

difficulties.

To control Abby's reflux, she is on Prevacid, Zantec, Reglan and

Pancreacarb. Even with all of this, she is still reluxing at least

once every hour. We had believed that the reflux might be irratating

her throat. We had also read that coughing prevents the muscles

involved in the swallowing process from developing as quickly.

QUESTIONS:

Do you know why so many children wcf seem to have swallowing

difficulties? Have any of your children been diagnosed with Arnold

Chiari?

Thank you for any input that you may provide,

Gale

[Guest guest]

My daughter Miriam also has this swallowing problem. So, they do not have an

idea why this is often the case with CF children? Miriam basically lives on

milk. And also she is already 16 months old I give her four bottles a

day.She has no interest whatsoever to hold the bottle herself or to start

using a spoon. I sure do hope this will eventually change :-) I would love

to go back to work but so far I am not sure who would show so much effort in

feeding my daughter.......

Tana - Christian 3 ywocf, Miriam 1 ywcf

Arnold Chiari Malformation and Swallowing difficulties

> Abigail(10.5 months old wcf) has been on solid food only since she

> was 8 months old. Some of what she swallows enters her lungs, she

> she is not allowed any liquids.

>

> An MRI showed that Abigail has Arnold Chiari Type I. This

> malformation allows the brain stem to protrude down into the spinal

> cord. Abby's nuerologist wants to do surgery. He will increase the

> size of the hole in the scull and remove part of the top vertibrate.

> This will keep the spinal fluid lding up in her head. Also, Abby's

> brain is actually resting right on the on the top vertibrate. This

> is why he wants to remove part of this vertibrate. He beleives that

> this condition is contributing (or causing) her swallowing

> difficulties.

>

> To control Abby's reflux, she is on Prevacid, Zantec, Reglan and

> Pancreacarb. Even with all of this, she is still reluxing at least

> once every hour. We had believed that the reflux might be irratating

> her throat. We had also read that coughing prevents the muscles

> involved in the swallowing process from developing as quickly.

>

> QUESTIONS:

> Do you know why so many children wcf seem to have swallowing

> difficulties? Have any of your children been diagnosed with Arnold

> Chiari?

>

> Thank you for any input that you may provide,

> Gale

>

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>

[Guest guest]

Tana,

Thanks for your reply. I don't know why so many children wcf have

difficulty swallowing. I sure wish that I knew.

Thanks,

Gale

> My daughter Miriam also has this swallowing problem. So, they do

not have an

> idea why this is often the case with CF children? Miriam basically

lives on

> milk. And also she is already 16 months old I give her four bottles

a

> day.She has no interest whatsoever to hold the bottle herself or to

start

> using a spoon. I sure do hope this will eventually change :-) I

would love

> to go back to work but so far I am not sure who would show so much

effort in

> feeding my daughter.......

>

> Tana - Christian 3 ywocf, Miriam 1 ywcf

> Arnold Chiari Malformation and Swallowing

difficulties

>

>

> > Abigail(10.5 months old wcf) has been on solid food only since she

> > was 8 months old. Some of what she swallows enters her lungs, she

> > she is not allowed any liquids.

> >

> > An MRI showed that Abigail has Arnold Chiari Type I. This

> > malformation allows the brain stem to protrude down into the

spinal

> > cord. Abby's nuerologist wants to do surgery. He will increase

the

> > size of the hole in the scull and remove part of the top

vertibrate.

> > This will keep the spinal fluid lding up in her head. Also,

Abby's

> > brain is actually resting right on the on the top vertibrate.

This

> > is why he wants to remove part of this vertibrate. He beleives

that

> > this condition is contributing (or causing) her swallowing

> > difficulties.

> >

> > To control Abby's reflux, she is on Prevacid, Zantec, Reglan and

> > Pancreacarb. Even with all of this, she is still reluxing at

least

> > once every hour. We had believed that the reflux might be

irratating

> > her throat. We had also read that coughing prevents the muscles

> > involved in the swallowing process from developing as quickly.

> >

> > QUESTIONS:

> > Do you know why so many children wcf seem to have swallowing

> > difficulties? Have any of your children been diagnosed with

Arnold

> > Chiari?

> >

> > Thank you for any input that you may provide,

> > Gale

> >

> >

> >

> > PLEASE do not post religious emails to the list.

> >

> >

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

> >

> >

> > The opinions and information exchanged on this list should

> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> >

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

> >

> >

> >

[Guest guest]

Tana,

Thanks for your reply. I don't know why so many children wcf have

difficulty swallowing. I sure wish that I knew.

Thanks,

Gale

> My daughter Miriam also has this swallowing problem. So, they do

not have an

> idea why this is often the case with CF children? Miriam basically

lives on

> milk. And also she is already 16 months old I give her four bottles

a

> day.She has no interest whatsoever to hold the bottle herself or to

start

> using a spoon. I sure do hope this will eventually change :-) I

would love

> to go back to work but so far I am not sure who would show so much

effort in

> feeding my daughter.......

>

> Tana - Christian 3 ywocf, Miriam 1 ywcf

> Arnold Chiari Malformation and Swallowing

difficulties

>

>

> > Abigail(10.5 months old wcf) has been on solid food only since she

> > was 8 months old. Some of what she swallows enters her lungs, she

> > she is not allowed any liquids.

> >

> > An MRI showed that Abigail has Arnold Chiari Type I. This

> > malformation allows the brain stem to protrude down into the

spinal

> > cord. Abby's nuerologist wants to do surgery. He will increase

the

> > size of the hole in the scull and remove part of the top

vertibrate.

> > This will keep the spinal fluid lding up in her head. Also,

Abby's

> > brain is actually resting right on the on the top vertibrate.

This

> > is why he wants to remove part of this vertibrate. He beleives

that

> > this condition is contributing (or causing) her swallowing

> > difficulties.

> >

> > To control Abby's reflux, she is on Prevacid, Zantec, Reglan and

> > Pancreacarb. Even with all of this, she is still reluxing at

least

> > once every hour. We had believed that the reflux might be

irratating

> > her throat. We had also read that coughing prevents the muscles

> > involved in the swallowing process from developing as quickly.

> >

> > QUESTIONS:

> > Do you know why so many children wcf seem to have swallowing

> > difficulties? Have any of your children been diagnosed with

Arnold

> > Chiari?

> >

> > Thank you for any input that you may provide,

> > Gale

> >

> >

> >

> > PLEASE do not post religious emails to the list.

> >

> >

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

> >

> >

> > The opinions and information exchanged on this list should

> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> >

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

> >

> >

> >