RE: Crosspost: Does anybody have this?

[Guest guest]

My family sounds nasally and we recently discovered it because our

tonsils and/or adenoids are too large and our bones in our noses tend

to be too narrow or have extra bone growth. We have had several

members of the family just in the last year have tonsils and/or

adnoids removed and/or nose surgery to correct these problems and we

ahve all seen a decrease in " allergies " " asthma " " ear

infections " " nasal sounding voices " and other similar things. Maybe

specifically ask an ENT to check these things out if they havent

already.

[Guest guest]

wow, I'd be quite happy if cody only sounded 'congested'

may be he should go to an allergist.

On Fri, Oct 24, 2008 at 11:05 PM, Janice <jscott@...> wrote:

> Hi,

>

> My son is pretty much recovered but..... he is extremely sensitive to

> different foods.... days like today really get me down!

>

> He went to a friends house speaking clearly, don't know what he ate....

> some fries and a root beer (grrr....) " Mother was soooo nice " , he said that

> he simply couldn't refuse and didn't want to appear rude. I picked him up

> this evening and he sounds as though he has a clothespin hitched to his

> nose.

>

> Actually.... he has that 'stuffed' up nasal sound perpetually but we tone

> it down by degrees. Does anyone else have this? Does anyone else have

> regressions that come in the form of 'extreme' congestion to the nose?

>

> Has anyone found ANYTHING that helps with this.... at all? I HATE it so

> much and I just want to scream! I just want my son to have a normal life and

> he is so close but everytime his nose gets congested like this..... his

> speech goes completely sideways.

>

> I long to actually hear what my son's true voice 'really' sounds like

> without any type of congestion at all! Of course, when he was younger, I

> didn't realize it was congestion, I thought it was apraxia of speech. Now

> that we have gotten rid of the apraxia and the auditory processing

> disorder..... we still have this horrid nasal sound that is indicative of

> permanently inflamed nasal passages.

>

> The ENT's just brush me off saying that there is nothing really wrong but

> give me either Nasonex or Flavonex which does nothing.

>

> Whew! That felt good... sorry for venting. I'm just so darn frustrated with

> this!

>

> Janice

> Mother of Mark, 13

>

>

[Guest guest]

Jancie,

Vent all you want. Charlie is progressing well, especially with the

Piracetam. But I did change him from Piracetam liquid (which rocked!) to the

pill form (which is fine I guess). And it is frustrating to see that he does

not want to say pa for pajamas on the pill form.

As for the food, I know that is the devil I need to get to know better. For

example, I decided to give him a treat and gave him an apple with a tad bit

of carmel on it. Sure enough it had, corn syrup and milk in it. Just after,

he went out to ride his big wheel and in the middle of the cul-de-sac turned

it on its side and started to spin the wheel. Worst feeling ever. Totally

food related.

So dont feel alone, I bet with Mark's age there is just so much beginning to

happen hormone wise, that it doesnt help. Seems so darn silly just a tad bit

of food or beverage can turn these kids into a different form.

We are headed to the park for a Halloween Festival. Perhaps I can find a

good witch with a GFCF and Corn Syrup potion? God Help me!

Keep up the good race!

[ ] Crosspost: Does anybody have this?

Hi,

My son is pretty much recovered but..... he is extremely sensitive to

different foods.... days like today really get me down!

He went to a friends house speaking clearly, don't know what he ate.... some

fries and a root beer (grrr....) " Mother was soooo nice " , he said that he

simply couldn't refuse and didn't want to appear rude. I picked him up this

evening and he sounds as though he has a clothespin hitched to his nose.

Actually.... he has that 'stuffed' up nasal sound perpetually but we tone it

down by degrees. Does anyone else have this? Does anyone else have

regressions that come in the form of 'extreme' congestion to the nose?

Has anyone found ANYTHING that helps with this.... at all? I HATE it so much

and I just want to scream! I just want my son to have a normal life and he

is so close but everytime his nose gets congested like this..... his speech

goes completely sideways.

I long to actually hear what my son's true voice 'really' sounds like

without any type of congestion at all! Of course, when he was younger, I

didn't realize it was congestion, I thought it was apraxia of speech. Now

that we have gotten rid of the apraxia and the auditory processing

disorder..... we still have this horrid nasal sound that is indicative of

permanently inflamed nasal passages.

The ENT's just brush me off saying that there is nothing really wrong but

give me either Nasonex or Flavonex which does nothing.

Whew! That felt good... sorry for venting. I'm just so darn frustrated with

this!

Janice

Mother of Mark, 13

[Guest guest]

Janice,

I don't have an answer for you, but I did have a student the past 2

years that always sounded " nasaly " . He used Nasonex too, but I really

never heard him not sound like that. He almost always had his mouth

open (sleeps w/ it open too), I just assumed that he was so congested

that he's become a mouth breather instead of using his nose. He's had

several sets of tubes, regularly saw the ENT and audiologist. I worked

with his parents, introduced them to The Late Talker (we already knew

he had apraxia)and fish oils. If I find soemthing that I think can help

him, I still pass info on to his family (he's no longer in my class).

Bonnie

[Guest guest]

Colleen,

We are fortunate that most of the sugars used in Alberta are cane sugars but

still have quite a bit of high fructose corn syrup in 'everything' just like you

do in the States.

I only discovered this summer that High Fructose Corn syrup takes Mark's good

speech out in about 20 minutes! It is just as bad if not worse then casien.

Like you, I am dreading Halloween because now that Mark is older, he want to go

'partying' with his buddies round to all of the houses. Last year, it took me

about a month to get him recovered from Halloween. I can hardly wait until he's

too old for this.... I'd far prefer him at a Halloween Dance!

Last year, all of the old muscle fatigue came back and his ADD returned full

force.... all because of Halloween! It seemed like 'forever' before I could get

him cleaned out and functioning as he should. All of his teachers complained

about his 'with-it-ness'. Tough to tell them..... " It was the Halloween Candy

...... like they would ever get it ..... it has taken me 13 years to 'get it'

and he's MY child!

sigh.

I am so ready for all of this to end. I'm getting tired of the daily battle of

dyspraxia.....

Janice

Mother of Mark, 13

[ ] Crosspost: Does anybody have this?

Hi,

My son is pretty much recovered but..... he is extremely sensitive to

different foods.... days like today really get me down!

He went to a friends house speaking clearly, don't know what he ate.... some

fries and a root beer (grrr....) " Mother was soooo nice " , he said that he

simply couldn't refuse and didn't want to appear rude. I picked him up this

evening and he sounds as though he has a clothespin hitched to his nose.

Actually.... he has that 'stuffed' up nasal sound perpetually but we tone it

down by degrees. Does anyone else have this? Does anyone else have

regressions that come in the form of 'extreme' congestion to the nose?

Has anyone found ANYTHING that helps with this.... at all? I HATE it so much

and I just want to scream! I just want my son to have a normal life and he

is so close but everytime his nose gets congested like this..... his speech

goes completely sideways.

I long to actually hear what my son's true voice 'really' sounds like

without any type of congestion at all! Of course, when he was younger, I

didn't realize it was congestion, I thought it was apraxia of speech. Now

that we have gotten rid of the apraxia and the auditory processing

disorder..... we still have this horrid nasal sound that is indicative of

permanently inflamed nasal passages.

The ENT's just brush me off saying that there is nothing really wrong but

give me either Nasonex or Flavonex which does nothing.

Whew! That felt good... sorry for venting. I'm just so darn frustrated with

this!

Janice

Mother of Mark, 13

[Guest guest]

Janice,

What are your thougths on earlier intervention on the food allergies. I

wonder if they will one day be able to tolerate these things. Thank goodness

for whole foods.

RE: [ ] Crosspost: Does anybody have this?

Colleen,

We are fortunate that most of the sugars used in Alberta are cane sugars but

still have quite a bit of high fructose corn syrup in 'everything' just like

you do in the States.

I only discovered this summer that High Fructose Corn syrup takes Mark's

good speech out in about 20 minutes! It is just as bad if not worse then

casien. Like you, I am dreading Halloween because now that Mark is older, he

want to go 'partying' with his buddies round to all of the houses. Last

year, it took me about a month to get him recovered from Halloween. I can

hardly wait until he's too old for this.... I'd far prefer him at a

Halloween Dance!

Last year, all of the old muscle fatigue came back and his ADD returned full

force.... all because of Halloween! It seemed like 'forever' before I could

get him cleaned out and functioning as he should. All of his teachers

complained about his 'with-it-ness'. Tough to tell them..... " It was the

Halloween Candy ..... like they would ever get it ..... it has taken me 13

years to 'get it' and he's MY child!

sigh.

I am so ready for all of this to end. I'm getting tired of the daily battle

of dyspraxia.....

Janice

Mother of Mark, 13

[ ] Crosspost: Does anybody have this?

Hi,

My son is pretty much recovered but..... he is extremely sensitive to

different foods.... days like today really get me down!

He went to a friends house speaking clearly, don't know what he ate.... some

fries and a root beer (grrr....) " Mother was soooo nice " , he said that he

simply couldn't refuse and didn't want to appear rude. I picked him up this

evening and he sounds as though he has a clothespin hitched to his nose.

Actually.... he has that 'stuffed' up nasal sound perpetually but we tone it

down by degrees. Does anyone else have this? Does anyone else have

regressions that come in the form of 'extreme' congestion to the nose?

Has anyone found ANYTHING that helps with this.... at all? I HATE it so much

and I just want to scream! I just want my son to have a normal life and he

is so close but everytime his nose gets congested like this..... his speech

goes completely sideways.

I long to actually hear what my son's true voice 'really' sounds like

without any type of congestion at all! Of course, when he was younger, I

didn't realize it was congestion, I thought it was apraxia of speech. Now

that we have gotten rid of the apraxia and the auditory processing

disorder..... we still have this horrid nasal sound that is indicative of

permanently inflamed nasal passages.

The ENT's just brush me off saying that there is nothing really wrong but

give me either Nasonex or Flavonex which does nothing.

Whew! That felt good... sorry for venting. I'm just so darn frustrated with

this!

Janice

Mother of Mark, 13

[Guest guest]

My son just turned 3 and was just diagnosed with apraxia a few weeks

ago.  His SLP has already recommended we see an ENT because she is concerned

about his heavy breathing and nasal congestion.  Shee feels like

his adenoids may be affecting his speech articulation.  I have no idea what to

think.  Can that effect his articulation?  I have never heard of such a thing. 

I don't feel like he talks through his nose, but maybe that's because he's

always talked that way.  We have an ENT appointment in mid November though.  I'm

eager to hear what he says.  I have started on the ProEFA fish oils. 

Still waiting on the EPA's in the mail.  He's definitely picking up more words

but his clarity is still muffled.  I am really debating whether to take him to a

doctor who can help us get his diet on track.  I'm also waiting for my " Late

Talker " book in the mail before I decide if Coop needs anything added or taken

away food/vitamin wise.

 

I'll report back!  And in the meantime, I love this group!  You gals have really

helped me through the last few weeks!  Thanks!

From: barbarabader <barbarabader@...>

Subject: [ ] Re: Crosspost: Does anybody have this?

Date: Saturday, October 25, 2008, 12:41 AM

My family sounds nasally and we recently discovered it because our

tonsils and/or adenoids are too large and our bones in our noses tend

to be too narrow or have extra bone growth. We have had several

members of the family just in the last year have tonsils and/or

adnoids removed and/or nose surgery to correct these problems and we

ahve all seen a decrease in " allergies " " asthma " " ear

infections " " nasal sounding voices " and other similar things.

Maybe

specifically ask an ENT to check these things out if they havent

already.

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

[Guest guest]

Gretchen,

I have 2 children, one dyspraxic and one NT. My NT daughter was a child who

refused to breast feed and even the lactation consultant that we saw indicated

that she would never take to the breast. (: When my NT child was young, she

began to drool excessively around the age of 2 and showed a lot of ear

infections and her speech was very slurred and unintelligeable. We took her to

the ENT and he indicated that her tonsils needed to come out.....ASAP before it

affected her development further. But, he also wanted to do an Xray to check

her nose. Her adenoids were HUGE! He felt that she was born with congenitally

large adenoids.

We yanked 'everything' out and put tubes in her ears. Still her speech was not

good because she had to compensate previously for her lack of good airflow and

in this learned some poor speech habits. We did about a year with a private SLP

and corrected this easily.

Today she is a completely NT, straight A student who participates heavily in

drama and sings in the choir and does a lot of musical theatre. You would never

discern that she ever had any type of speech issue, once upon a time.

So.... the moral of the story is.... sometimes it is not completely neurological

but very physical! DO get the tubes, DO pull the tonsils if necessary and DO

remove those adenoids if they are getting in the way!

This does not mean that your child is not apraxic but you may be surprised by

how much more your child can do and how much better he can thrive when his ears,

nose and throat are clear of congestion and he is able to 'think' better and

participate easier in life.

Watch the type of aneisthesia that they use since many of our kids react to

extremely badly Nitrous Oxide and if you do a search on this board, you will

find other options listed in a few posts (since I don't know them).

Take care and all my best to little !

Janice

Mother of Mark, 13

[ ] Re: Crosspost: Does anybody have this?

Date: Saturday, October 25, 2008, 12:41 AM

My family sounds nasally and we recently discovered it because our

tonsils and/or adenoids are too large and our bones in our noses tend

to be too narrow or have extra bone growth. We have had several

members of the family just in the last year have tonsils and/or

adnoids removed and/or nose surgery to correct these problems and we

ahve all seen a decrease in " allergies " " asthma " " ear

infections " " nasal sounding voices " and other similar things.

Maybe

specifically ask an ENT to check these things out if they havent

already.

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

[Guest guest]

Well,

I'm not sure if its' the SRT treatments working or if its the Difulcan and 'gut'

work that we are doing but Mark now seems to be presenting with " only " nasal

congestion in response to food allergies. The spaciness and loss of skills has

gone...... and he has been 'cheating' almost daily with his diet! He just came

back from his aunties house where he had some popcorn.... drat it! But he's

doing okay, just a 'bit' nasally. I'm going to try using a nettie pot (for

sinusitis) to give him a rinse tonight. He may not let me but I'm going to give

it a shot to see if this helps with that pesky nose.

We have cleared our gluten sensitivity and I tried him out last week with a

bread, puffed wheat day. He has failed this test many times in the past but

this time he did indeed pass! So, we have overcome our gluten sensitivity. Of

course, I'm going to use it extremely sparingly since we are still waging war on

the yeast and bacteria. Gluten is a definate yeast feeder.

Last week he had a simple 'handfull' of Lays salt and vinigar pototo chips and

was quite out of it.... the milk issue again or possibly a chemical issue in the

chips? He is okay with the regular Lays chips. But, he can tolerate hard

cheeses..... so it has got to be something with the chemicals that throws him

out of it.

Since Mark responds very quickly when having a food reaction, I'm getting pretty

good at discerning which foods are absolute 'no-no's'. It seems that most of

the chemicalized products with milk additives are still out of bounds for

him.... and may always be out of bounds.

I'm trying to keep him clean but since he's doing well neurodevelopmentally,

he's getting a bit experimental these days. He feels okay and thus isn't as

motivated as he once was.

So.... are we healing? Today, I'll say yes we are. The congestion really is a

pain but in truth its better then any other type of regression we've had in the

past where a loss of skills and extreme dopiness are involved.

I'm now using all of the antigen drops for the food allergies on a daily basis

and have ramped most of them (except dairy) up to 2 drops, 3 times daily. Time

will tell how it works!

So, that is where we are on the food front. I do believe that you can get

better from this if you stay the course and really work the body and all of the

issues. In addition, as the neurodevelopmental issues subside, the body and its

entire immune system seems to get stronger and stronger. I believe that this is

the true road to getting rid of the allergies/sensitivities. Build a really

strong body and immune system.... and get rid of all of the 'crap' from their

systems of course!

Janice

Mother of Mark, 13

[Guest guest]

Wow!  That is all so helpful!  Thanks a bunch!

From: barbarabader <barbarabader@...>

Subject: [ ] Re: Crosspost: Does anybody have this?

Date: Saturday, October 25, 2008, 12:41 AM

My family sounds nasally and we recently discovered it because our

tonsils and/or adenoids are too large and our bones in our noses tend

to be too narrow or have extra bone growth. We have had several

members of the family just in the last year have tonsils and/or

adnoids removed and/or nose surgery to correct these problems and we

ahve all seen a decrease in " allergies " " asthma "

" ear

infections " " nasal sounding voices " and other similar things.

Maybe

specifically ask an ENT to check these things out if they havent

already.

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