OT- help with baby's diagnosis

[Guest guest]

I am kind of at a loss right now....

The baby has been having issues with EXCESSIVE drooling for over a year now. 

Recently, his sounds of his words have changed & he is having difficulty

chewing.

He also seems to have tone issues ( " W " sits etc).

 We just got home from the ENT - where I thought it would be an easy diagnosis

of adenoids (remove them) & be done with it.

But that is not the case.

 The ENT dr. stated he had never seen a child drool this much & even kids with

huge adenoids don't drool this much.

 He stated that he wanted to do a adenoid scope on him.

 He did, they were fine (not swollen) & tonsils were good too. 

He also did a very thorough throat, pallate, tongue, & oral cavity check with

the scope & his tools/hands.

He said he hated to be the barer of bad news, but that he feels this is not a

physical problem, but a neurological issue.

And that neurological issue that is causing him to not swallow properly or

enough.

He also stated he felt he had a sensory issue (just like our Developmental

Pediatrician stated -she saw him Monday & stated he had mild sensory issues,

poor coordination, fine motor issues, & needed a sensory profile).

We were referred to PCH for a modified swallow study.

He stated during this swallow study he wants to see him have multiple types of

liquids, solids & thicker liquids.

He also stated he needed swallowing therapy, feeding therapy & occupational

therapy.

HERE ARE MY QUESTIONS FOR YOU : 

1) I am not sure what to think of all this & am wondering if this sounds like

a red flag for mito (like my older son -his brother who is 3 & 1/2 is suspected

mito- we go to Cleveland Clinic to see Dr. Cohen for further work up in August).

2) I am also wondering if anyone has dealt with this problem before & can email

me privately (I am on digest on most listserves & it will be a while before I

get it otherwise) with ideas, suggestions, therapies etc.  mom2twoinaz@...

Thanks everyone in advance for your help.

B.

[Guest guest]

If it were me I would be adding an appointment for this son for a MITO workup.

sounds like you may have a genetic line going here. Has anyone looked at how he

is sleeping as far as apnea and choking hazards? Does he have recurrent

pneumonia? I would also be looking at raising the head of his bed and other

precautions to prevent aspirations. As well as watching what he is eating.

Things like carrots and popcorn or other items that are known aspirators. I

would get into see an OT ASAP to get some of these things close in your

knowledge bank. I am so sorry you are having to deal with all of this. but it

sounds like you may be on a better track.

BARBIE  

From: Blair <mom2twoinaz@...>

Subject: OT- help with baby's diagnosis

jgblair@...

Date: Wednesday, June 10, 2009, 1:03 PM

I am kind of at a loss right now....

The baby has been having issues with EXCESSIVE drooling for over a year now. 

Recently, his sounds of his words have changed & he is having difficulty

chewing.

He also seems to have tone issues ( " W " sits etc).

 We just got home from the ENT - where I thought it would be an easy diagnosis

of adenoids (remove them) & be done with it.

But that is not the case.

 The ENT dr. stated he had never seen a child drool this much & even kids with

huge adenoids don't drool this much.

 He stated that he wanted to do a adenoid scope on him.

 He did, they were fine (not swollen) & tonsils were good too. 

He also did a very thorough throat, pallate, tongue, & oral cavity check with

the scope & his tools/hands.

He said he hated to be the barer of bad news, but that he feels this is not a

physical problem, but a neurological issue.

And that neurological issue that is causing him to not swallow properly or

enough.

He also stated he felt he had a sensory issue (just like our Developmental

Pediatrician stated -she saw him Monday & stated he had mild sensory issues,

poor coordination, fine motor issues, & needed a sensory profile).

We were referred to PCH for a modified swallow study.

He stated during this swallow study he wants to see him have multiple types of

liquids, solids & thicker liquids.

He also stated he needed swallowing therapy, feeding therapy & occupational

therapy.

HERE ARE MY QUESTIONS FOR YOU : 

1) I am not sure what to think of all this & am wondering if this sounds like

a red flag for mito (like my older son -his brother who is 3 & 1/2 is suspected

mito- we go to Cleveland Clinic to see Dr. Cohen for further work up in August).

2) I am also wondering if anyone has dealt with this problem before & can email

me privately (I am on digest on most listserves & it will be a while before I

get it otherwise) with ideas, suggestions, therapies etc.  mom2twoinaz@

Thanks everyone in advance for your help.

B.

[Guest guest]

If it were me I would be adding an appointment for this son for a MITO workup.

sounds like you may have a genetic line going here. Has anyone looked at how he

is sleeping as far as apnea and choking hazards? Does he have recurrent

pneumonia? I would also be looking at raising the head of his bed and other

precautions to prevent aspirations. As well as watching what he is eating.

Things like carrots and popcorn or other items that are known aspirators. I

would get into see an OT ASAP to get some of these things close in your

knowledge bank. I am so sorry you are having to deal with all of this. but it

sounds like you may be on a better track.

BARBIE  

From: Blair <mom2twoinaz@...>

Subject: OT- help with baby's diagnosis

jgblair@...

Date: Wednesday, June 10, 2009, 1:03 PM

I am kind of at a loss right now....

The baby has been having issues with EXCESSIVE drooling for over a year now. 

Recently, his sounds of his words have changed & he is having difficulty

chewing.

He also seems to have tone issues ( " W " sits etc).

 We just got home from the ENT - where I thought it would be an easy diagnosis

of adenoids (remove them) & be done with it.

But that is not the case.

 The ENT dr. stated he had never seen a child drool this much & even kids with

huge adenoids don't drool this much.

 He stated that he wanted to do a adenoid scope on him.

 He did, they were fine (not swollen) & tonsils were good too. 

He also did a very thorough throat, pallate, tongue, & oral cavity check with

the scope & his tools/hands.

He said he hated to be the barer of bad news, but that he feels this is not a

physical problem, but a neurological issue.

And that neurological issue that is causing him to not swallow properly or

enough.

He also stated he felt he had a sensory issue (just like our Developmental

Pediatrician stated -she saw him Monday & stated he had mild sensory issues,

poor coordination, fine motor issues, & needed a sensory profile).

We were referred to PCH for a modified swallow study.

He stated during this swallow study he wants to see him have multiple types of

liquids, solids & thicker liquids.

He also stated he needed swallowing therapy, feeding therapy & occupational

therapy.

HERE ARE MY QUESTIONS FOR YOU : 

1) I am not sure what to think of all this & am wondering if this sounds like

a red flag for mito (like my older son -his brother who is 3 & 1/2 is suspected

mito- we go to Cleveland Clinic to see Dr. Cohen for further work up in August).

2) I am also wondering if anyone has dealt with this problem before & can email

me privately (I am on digest on most listserves & it will be a while before I

get it otherwise) with ideas, suggestions, therapies etc.  mom2twoinaz@

Thanks everyone in advance for your help.

B.

[Guest guest]

Thanks Barbie

I am overwhelmed right now but will look into all of those things.

 

________________________________

From: Barbara Jimenez <mother5590@...>

Sent: Wednesday, June 10, 2009 11:25:12 AM

Subject: Re: OT- help with baby's diagnosis

If it were me I would be adding an appointment for this son for a MITO workup.

sounds like you may have a genetic line going here. Has anyone looked at how he

is sleeping as far as apnea and choking hazards? Does he have recurrent

pneumonia? I would also be looking at raising the head of his bed and other

precautions to prevent aspirations. As well as watching what he is eating.

Things like carrots and popcorn or other items that are known aspirators. I

would get into see an OT ASAP to get some of these things close in your

knowledge bank. I am so sorry you are having to deal with all of this. but it

sounds like you may be on a better track.

BARBIE  

From: Blair <mom2twoinaz>

Subject: OT- help with baby's diagnosis

jgblaircox (DOT) net

Date: Wednesday, June 10, 2009, 1:03 PM

I am kind of at a loss right now....

The baby has been having issues with EXCESSIVE drooling for over a year now. 

Recently, his sounds of his words have changed & he is having difficulty

chewing.

He also seems to have tone issues ( " W " sits etc).

 We just got home from the ENT - where I thought it would be an easy diagnosis

of adenoids (remove them) & be done with it.

But that is not the case.

 The ENT dr. stated he had never seen a child drool this much & even kids with

huge adenoids don't drool this much.

 He stated that he wanted to do a adenoid scope on him.

 He did, they were fine (not swollen) & tonsils were good too. 

He also did a very thorough throat, pallate, tongue, & oral cavity check with

the scope & his tools/hands.

He said he hated to be the barer of bad news, but that he feels this is not a

physical problem, but a neurological issue.

And that neurological issue that is causing him to not swallow properly or

enough.

He also stated he felt he had a sensory issue (just like our Developmental

Pediatrician stated -she saw him Monday & stated he had mild sensory issues,

poor coordination, fine motor issues, & needed a sensory profile).

We were referred to PCH for a modified swallow study.

He stated during this swallow study he wants to see him have multiple types of

liquids, solids & thicker liquids.

He also stated he needed swallowing therapy, feeding therapy & occupational

therapy.

HERE ARE MY QUESTIONS FOR YOU : 

1) I am not sure what to think of all this & am wondering if this sounds like

a red flag for mito (like my older son -his brother who is 3 & 1/2 is suspected

mito- we go to Cleveland Clinic to see Dr. Cohen for further work up in August).

2) I am also wondering if anyone has dealt with this problem before & can email

me privately (I am on digest on most listserves & it will be a while before I

get it otherwise) with ideas, suggestions, therapies etc.  mom2twoinaz@

Thanks everyone in advance for your help.

B.

[Guest guest]

I can understand that but basic safety is what is important right now. So

answering the questions that I have posed would be the place to start to prevent

harm. See if the ENT or your PCP will give you the referral to OT ASAP to get

those things started. Whether it is Neuro or Mito or whatever is not as

important but knowing whether he is choking and causing damage is very

important. And your knowing how to prevent that needs to be your first line of

focus. Knowlege and Prevention is very powerful!!! It may be that he is not a

great risk but you need to know that and be armed with how to help him. Just ask

the questions so that you can have more peace of mind.

BARBIE  

From: Blair <mom2twoinaz>

Subject: OT- help with baby's diagnosis

jgblaircox (DOT) net

Date: Wednesday, June 10, 2009, 1:03 PM

I am kind of at a loss right now....

The baby has been having issues with EXCESSIVE drooling for over a year now. 

Recently, his sounds of his words have changed & he is having difficulty

chewing.

He also seems to have tone issues ( " W " sits etc).

 We just got home from the ENT - where I thought it would be an easy diagnosis

of adenoids (remove them) & be done with it.

But that is not the case.

 The ENT dr. stated he had never seen a child drool this much & even kids with

huge adenoids don't drool this much.

 He stated that he wanted to do a adenoid scope on him.

 He did, they were fine (not swollen) & tonsils were good too. 

He also did a very thorough throat, pallate, tongue, & oral cavity check with

the scope & his tools/hands.

He said he hated to be the barer of bad news, but that he feels this is not a

physical problem, but a neurological issue.

And that neurological issue that is causing him to not swallow properly or

enough.

He also stated he felt he had a sensory issue (just like our Developmental

Pediatrician stated -she saw him Monday & stated he had mild sensory issues,

poor coordination, fine motor issues, & needed a sensory profile).

We were referred to PCH for a modified swallow study.

He stated during this swallow study he wants to see him have multiple types of

liquids, solids & thicker liquids.

He also stated he needed swallowing therapy, feeding therapy & occupational

therapy.

HERE ARE MY QUESTIONS FOR YOU : 

1) I am not sure what to think of all this & am wondering if this sounds like

a red flag for mito (like my older son -his brother who is 3 & 1/2 is suspected

mito- we go to Cleveland Clinic to see Dr. Cohen for further work up in August).

2) I am also wondering if anyone has dealt with this problem before & can email

me privately (I am on digest on most listserves & it will be a while before I

get it otherwise) with ideas, suggestions, therapies etc.  mom2twoinaz@

Thanks everyone in advance for your help.

B.

[Guest guest]

Hi Barbie,

Sorry, I did not read this all the way & see all the questions.

He has never been evaluated for sleep study or apnea

He has only had pnumonia one time.

I do already elevate his bed due to the drooling at night. 

He does not seem to have chocking issues but I will keep a much closer eye on

him

Thanks for your concern

 

________________________________

From: Barbara Jimenez <mother5590@...>

Sent: Wednesday, June 10, 2009 11:54:19 AM

Subject: Re: OT- help with baby's diagnosis

I can understand that but basic safety is what is important right now. So

answering the questions that I have posed would be the place to start to prevent

harm. See if the ENT or your PCP will give you the referral to OT ASAP to get

those things started. Whether it is Neuro or Mito or whatever is not as

important but knowing whether he is choking and causing damage is very

important. And your knowing how to prevent that needs to be your first line of

focus. Knowlege and Prevention is very powerful!!! It may be that he is not a

great risk but you need to know that and be armed with how to help him. Just ask

the questions so that you can have more peace of mind.

BARBIE  

From: Blair <mom2twoinaz>

Subject: OT- help with baby's diagnosis

jgblaircox (DOT) net

Date: Wednesday, June 10, 2009, 1:03 PM

I am kind of at a loss right now....

The baby has been having issues with EXCESSIVE drooling for over a year now. 

Recently, his sounds of his words have changed & he is having difficulty

chewing.

He also seems to have tone issues ( " W " sits etc).

 We just got home from the ENT - where I thought it would be an easy diagnosis

of adenoids (remove them) & be done with it.

But that is not the case.

 The ENT dr. stated he had never seen a child drool this much & even kids with

huge adenoids don't drool this much.

 He stated that he wanted to do a adenoid scope on him.

 He did, they were fine (not swollen) & tonsils were good too. 

He also did a very thorough throat, pallate, tongue, & oral cavity check with

the scope & his tools/hands.

He said he hated to be the barer of bad news, but that he feels this is not a

physical problem, but a neurological issue.

And that neurological issue that is causing him to not swallow properly or

enough.

He also stated he felt he had a sensory issue (just like our Developmental

Pediatrician stated -she saw him Monday & stated he had mild sensory issues,

poor coordination, fine motor issues, & needed a sensory profile).

We were referred to PCH for a modified swallow study.

He stated during this swallow study he wants to see him have multiple types of

liquids, solids & thicker liquids.

He also stated he needed swallowing therapy, feeding therapy & occupational

therapy.

HERE ARE MY QUESTIONS FOR YOU : 

1) I am not sure what to think of all this & am wondering if this sounds like

a red flag for mito (like my older son -his brother who is 3 & 1/2 is suspected

mito- we go to Cleveland Clinic to see Dr. Cohen for further work up in August).

2) I am also wondering if anyone has dealt with this problem before & can email

me privately (I am on digest on most listserves & it will be a while before I

get it otherwise) with ideas, suggestions, therapies etc.  mom2twoinaz@

Thanks everyone in advance for your help.

B.

[Guest guest]

Hi Barbie,

Sorry, I did not read this all the way & see all the questions.

He has never been evaluated for sleep study or apnea

He has only had pnumonia one time.

I do already elevate his bed due to the drooling at night. 

He does not seem to have chocking issues but I will keep a much closer eye on

him

Thanks for your concern

 

________________________________

From: Barbara Jimenez <mother5590@...>

Sent: Wednesday, June 10, 2009 11:54:19 AM

Subject: Re: OT- help with baby's diagnosis

I can understand that but basic safety is what is important right now. So

answering the questions that I have posed would be the place to start to prevent

harm. See if the ENT or your PCP will give you the referral to OT ASAP to get

those things started. Whether it is Neuro or Mito or whatever is not as

important but knowing whether he is choking and causing damage is very

important. And your knowing how to prevent that needs to be your first line of

focus. Knowlege and Prevention is very powerful!!! It may be that he is not a

great risk but you need to know that and be armed with how to help him. Just ask

the questions so that you can have more peace of mind.

BARBIE  

From: Blair <mom2twoinaz>

Subject: OT- help with baby's diagnosis

jgblaircox (DOT) net

Date: Wednesday, June 10, 2009, 1:03 PM

I am kind of at a loss right now....

The baby has been having issues with EXCESSIVE drooling for over a year now. 

Recently, his sounds of his words have changed & he is having difficulty

chewing.

He also seems to have tone issues ( " W " sits etc).

 We just got home from the ENT - where I thought it would be an easy diagnosis

of adenoids (remove them) & be done with it.

But that is not the case.

 The ENT dr. stated he had never seen a child drool this much & even kids with

huge adenoids don't drool this much.

 He stated that he wanted to do a adenoid scope on him.

 He did, they were fine (not swollen) & tonsils were good too. 

He also did a very thorough throat, pallate, tongue, & oral cavity check with

the scope & his tools/hands.

He said he hated to be the barer of bad news, but that he feels this is not a

physical problem, but a neurological issue.

And that neurological issue that is causing him to not swallow properly or

enough.

He also stated he felt he had a sensory issue (just like our Developmental

Pediatrician stated -she saw him Monday & stated he had mild sensory issues,

poor coordination, fine motor issues, & needed a sensory profile).

We were referred to PCH for a modified swallow study.

He stated during this swallow study he wants to see him have multiple types of

liquids, solids & thicker liquids.

He also stated he needed swallowing therapy, feeding therapy & occupational

therapy.

HERE ARE MY QUESTIONS FOR YOU : 

1) I am not sure what to think of all this & am wondering if this sounds like

a red flag for mito (like my older son -his brother who is 3 & 1/2 is suspected

mito- we go to Cleveland Clinic to see Dr. Cohen for further work up in August).

2) I am also wondering if anyone has dealt with this problem before & can email

me privately (I am on digest on most listserves & it will be a while before I

get it otherwise) with ideas, suggestions, therapies etc.  mom2twoinaz@

Thanks everyone in advance for your help.

B.

[Guest guest]

How old is the baby & has he ever been treated for Reflux. Blake had reflux so

bad it idid effect his speech and hedrooled excessively. When he had the Nissen

Fundplication done, the drooling stopped

Good luck

Mom to Blake 17

SCID with Complete T-Cell Dysfunction, Autism Factor V Leiden,

Sebnsory Intergration Motor Skills Delays NOW a Junior in HS!!!

http://www.caringbridge.org/sc/blakester

Come & see just WHY I call Blake

" The Greatest Adventure of MY Lifetime!!!! "

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: Blair <mom2twoinaz@...>

Subject: OT- help with baby's diagnosis

jgblair@...

Date: Wednesday, June 10, 2009, 2:03 PM

I am kind of at a loss right now....

The baby has been having issues with EXCESSIVE drooling for over a year now. 

Recently, his sounds of his words have changed & he is having difficulty

chewing.

He also seems to have tone issues ( " W " sits etc).

 We just got home from the ENT - where I thought it would be an easy diagnosis

of adenoids (remove them) & be done with it.

But that is not the case.

 The ENT dr. stated he had never seen a child drool this much & even kids with

huge adenoids don't drool this much.

 He stated that he wanted to do a adenoid scope on him.

 He did, they were fine (not swollen) & tonsils were good too. 

He also did a very thorough throat, pallate, tongue, & oral cavity check with

the scope & his tools/hands.

He said he hated to be the barer of bad news, but that he feels this is not a

physical problem, but a neurological issue.

And that neurological issue that is causing him to not swallow properly or

enough.

He also stated he felt he had a sensory issue (just like our Developmental

Pediatrician stated -she saw him Monday & stated he had mild sensory issues,

poor coordination, fine motor issues, & needed a sensory profile).

We were referred to PCH for a modified swallow study.

He stated during this swallow study he wants to see him have multiple types of

liquids, solids & thicker liquids.

He also stated he needed swallowing therapy, feeding therapy & occupational

therapy.

HERE ARE MY QUESTIONS FOR YOU : 

1) I am not sure what to think of all this & am wondering if this sounds like

a red flag for mito (like my older son -his brother who is 3 & 1/2 is suspected

mito- we go to Cleveland Clinic to see Dr. Cohen for further work up in August).

2) I am also wondering if anyone has dealt with this problem before & can email

me privately (I am on digest on most listserves & it will be a while before I

get it otherwise) with ideas, suggestions, therapies etc.  mom2twoinaz@

Thanks everyone in advance for your help.

B.

[Guest guest]

Macey does this. She has tried several meds to decrease it but to no avail.

She has to be reminded repeatedly thru the day to swallow. She has a history of

reflux and aspiration pneumonia. they think it is all neuro related but have

ruled out any mito problems. She was in speech therapy for 4 years and OT for 4

years as a toddler/preschooler.

Ursula Holleman

mom to (16) and Macey (14)

www.caringbridge.org/visit/maceyholleman

[Guest guest]

Macey does this. She has tried several meds to decrease it but to no avail.

She has to be reminded repeatedly thru the day to swallow. She has a history of

reflux and aspiration pneumonia. they think it is all neuro related but have

ruled out any mito problems. She was in speech therapy for 4 years and OT for 4

years as a toddler/preschooler.

Ursula Holleman

mom to (16) and Macey (14)

www.caringbridge.org/visit/maceyholleman

[Guest guest]

Thanks Ursula

I am definetly bringing it up to Cohen when we are at Cleveland Clinic with my

other son this summer...

Appreciate your thougths & email.

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Wednesday, June 10, 2009 1:59:19 PM

Subject: RE: OT- help with baby's diagnosis

Macey does this. She has tried several meds to decrease it but to no avail. She

has to be reminded repeatedly thru the day to swallow. She has a history of

reflux and aspiration pneumonia. they think it is all neuro related but have

ruled out any mito problems. She was in speech therapy for 4 years and OT for 4

years as a toddler/preschooler .

Ursula Holleman

mom to (16) and Macey (14)

www.caringbridge. org/visit/ maceyholleman

[Guest guest]

Thanks

He is 20 months old & we are waiting fo rGI work up until after the Swallow

study

If it shows issues he will be seen by GI then

________________________________

From: s <momtoboywholoveshisgoats@...>

Sent: Wednesday, June 10, 2009 1:49:29 PM

Subject: Re: OT- help with baby's diagnosis

How old is the baby & has he ever been treated for Reflux. Blake had reflux so

bad it idid effect his speech and hedrooled excessively. When he had the Nissen

Fundplication done, the drooling stopped

Good luck

Mom to Blake 17

SCID with Complete T-Cell Dysfunction, Autism Factor V Leiden,

Sebnsory Intergration Motor Skills Delays NOW a Junior in HS!!!

http://www.caringbridge.org/sc/blakester

Come & see just WHY I call Blake

" The Greatest Adventure of MY Lifetime!!!! "

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: Blair <mom2twoinaz>

Subject: OT- help with baby's diagnosis

jgblaircox (DOT) net

Date: Wednesday, June 10, 2009, 2:03 PM

I am kind of at a loss right now....

The baby has been having issues with EXCESSIVE drooling for over a year now. 

Recently, his sounds of his words have changed & he is having difficulty

chewing.

He also seems to have tone issues ( " W " sits etc).

 We just got home from the ENT - where I thought it would be an easy diagnosis

of adenoids (remove them) & be done with it.

But that is not the case.

 The ENT dr. stated he had never seen a child drool this much & even kids with

huge adenoids don't drool this much.

 He stated that he wanted to do a adenoid scope on him.

 He did, they were fine (not swollen) & tonsils were good too. 

He also did a very thorough throat, pallate, tongue, & oral cavity check with

the scope & his tools/hands.

He said he hated to be the barer of bad news, but that he feels this is not a

physical problem, but a neurological issue.

And that neurological issue that is causing him to not swallow properly or

enough.

He also stated he felt he had a sensory issue (just like our Developmental

Pediatrician stated -she saw him Monday & stated he had mild sensory issues,

poor coordination, fine motor issues, & needed a sensory profile).

We were referred to PCH for a modified swallow study.

He stated during this swallow study he wants to see him have multiple types of

liquids, solids & thicker liquids.

He also stated he needed swallowing therapy, feeding therapy & occupational

therapy.

HERE ARE MY QUESTIONS FOR YOU : 

1) I am not sure what to think of all this & am wondering if this sounds like

a red flag for mito (like my older son -his brother who is 3 & 1/2 is suspected

mito- we go to Cleveland Clinic to see Dr. Cohen for further work up in August).

2) I am also wondering if anyone has dealt with this problem before & can email

me privately (I am on digest on most listserves & it will be a while before I

get it otherwise) with ideas, suggestions, therapies etc.  mom2twoinaz@

Thanks everyone in advance for your help.

B.

[Guest guest]

Thanks

He is 20 months old & we are waiting fo rGI work up until after the Swallow

study

If it shows issues he will be seen by GI then

________________________________

From: s <momtoboywholoveshisgoats@...>

Sent: Wednesday, June 10, 2009 1:49:29 PM

Subject: Re: OT- help with baby's diagnosis

How old is the baby & has he ever been treated for Reflux. Blake had reflux so

bad it idid effect his speech and hedrooled excessively. When he had the Nissen

Fundplication done, the drooling stopped

Good luck

Mom to Blake 17

SCID with Complete T-Cell Dysfunction, Autism Factor V Leiden,

Sebnsory Intergration Motor Skills Delays NOW a Junior in HS!!!

http://www.caringbridge.org/sc/blakester

Come & see just WHY I call Blake

" The Greatest Adventure of MY Lifetime!!!! "

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: Blair <mom2twoinaz>

Subject: OT- help with baby's diagnosis

jgblaircox (DOT) net

Date: Wednesday, June 10, 2009, 2:03 PM

I am kind of at a loss right now....

The baby has been having issues with EXCESSIVE drooling for over a year now. 

Recently, his sounds of his words have changed & he is having difficulty

chewing.

He also seems to have tone issues ( " W " sits etc).

 We just got home from the ENT - where I thought it would be an easy diagnosis

of adenoids (remove them) & be done with it.

But that is not the case.

 The ENT dr. stated he had never seen a child drool this much & even kids with

huge adenoids don't drool this much.

 He stated that he wanted to do a adenoid scope on him.

 He did, they were fine (not swollen) & tonsils were good too. 

He also did a very thorough throat, pallate, tongue, & oral cavity check with

the scope & his tools/hands.

He said he hated to be the barer of bad news, but that he feels this is not a

physical problem, but a neurological issue.

And that neurological issue that is causing him to not swallow properly or

enough.

He also stated he felt he had a sensory issue (just like our Developmental

Pediatrician stated -she saw him Monday & stated he had mild sensory issues,

poor coordination, fine motor issues, & needed a sensory profile).

We were referred to PCH for a modified swallow study.

He stated during this swallow study he wants to see him have multiple types of

liquids, solids & thicker liquids.

He also stated he needed swallowing therapy, feeding therapy & occupational

therapy.

HERE ARE MY QUESTIONS FOR YOU : 

1) I am not sure what to think of all this & am wondering if this sounds like

a red flag for mito (like my older son -his brother who is 3 & 1/2 is suspected

mito- we go to Cleveland Clinic to see Dr. Cohen for further work up in August).

2) I am also wondering if anyone has dealt with this problem before & can email

me privately (I am on digest on most listserves & it will be a while before I

get it otherwise) with ideas, suggestions, therapies etc.  mom2twoinaz@

Thanks everyone in advance for your help.

B.

[Guest guest]

I will say this too that it seems to be motor-neuro not delayed-neuro. She is a

straight A student in 3 honors classes and plays in the band. It does seem to

interfere with her flute playing but she also has poor oral motor skills. Not

sure if it is congenital or acquired.

Ursula Holleman

mom to (16) and Macey (14)

www.caringbridge.org/visit/maceyholleman

________________________________

>

> From: mom2twoinaz@...

> Date: Wed, 10 Jun 2009 15:43:29 -0700

> Subject: Re: OT- help with baby's diagnosis

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> Thanks Ursula

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> I am definetly bringing it up to Cohen when we are at Cleveland Clinic with my

other son this summer...

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> Appreciate your thougths & email.

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> ________________________________

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> From: Ursula Holleman>

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> Sent: Wednesday, June 10, 2009 1:59:19 PM

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> Subject: RE: OT- help with baby's diagnosis

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> Macey does this. She has tried several meds to decrease it but to no avail.

She has to be reminded repeatedly thru the day to swallow. She has a history of

reflux and aspiration pneumonia. they think it is all neuro related but have

ruled out any mito problems. She was in speech therapy for 4 years and OT for 4

years as a toddler/preschooler .

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> Ursula Holleman

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> mom to (16) and Macey (14)

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> www.caringbridge. org/visit/ maceyholleman

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>

[Guest guest]

HI ,

My son is 3.2 yo and still drools excessively. We change his shirt a few times a

day. If his nose is slightly stuffy...OMG...waterworks for the day! He

overstuffs his mouth has low tone, etc, etc...

We blood tested for mito and it came back negative. He has been diagnosed with

severe verbal apraxia, dyspraxia (fine motor and gross motor issues), hypotonia

(sits in " w " position too, poor hip and core muscles, plus oral) and sensory

processing disorder. You can e-mail me privately for more tests/exams we have

done, or any other questions.

-Jenna Weil

>

> I am kind of at a loss right now....

> The baby has been having issues with EXCESSIVE drooling for over a year now. 

Recently, his sounds of his words have changed & he is having difficulty

chewing.

> He also seems to have tone issues ( " W " sits etc).

>

>

>  We just got home from the ENT - where I thought it would be an easy diagnosis

of adenoids (remove them) & be done with it.

> But that is not the case.

>

>  The ENT dr. stated he had never seen a child drool this much & even kids with

huge adenoids don't drool this much.

>  He stated that he wanted to do a adenoid scope on him.

>  He did, they were fine (not swollen) & tonsils were good too. 

> He also did a very thorough throat, pallate, tongue, & oral cavity check with

the scope & his tools/hands.

>

> He said he hated to be the barer of bad news, but that he feels this is not a

physical problem, but a neurological issue.

> And that neurological issue that is causing him to not swallow properly or

enough.

> He also stated he felt he had a sensory issue (just like our Developmental

Pediatrician stated -she saw him Monday & stated he had mild sensory issues,

poor coordination, fine motor issues, & needed a sensory profile).

>

> We were referred to PCH for a modified swallow study.

> He stated during this swallow study he wants to see him have multiple types of

liquids, solids & thicker liquids.

> He also stated he needed swallowing therapy, feeding therapy & occupational

therapy.

>

>

> HERE ARE MY QUESTIONS FOR YOU : 

> 1) I am not sure what to think of all this & am wondering if this sounds like

a red flag for mito (like my older son -his brother who is 3 & 1/2 is suspected

mito- we go to Cleveland Clinic to see Dr. Cohen for further work up in August).

>

> 2) I am also wondering if anyone has dealt with this problem before & can

email me privately (I am on digest on most listserves & it will be a while

before I get it otherwise) with ideas, suggestions, therapies etc. 

mom2twoinaz@...

>

>

> Thanks everyone in advance for your help.

>

> B.

>

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>