Re: encopresis

[Guest guest]

Hey , fellow encopresis mom!

We hope we are through that. I gave my younger son a little metamucil

to help unclog anything in his system. It worked in a big, messy,

carpet-cleaning way. Now we are back to more solid stools and I hope

to keep him from the constipation again. I read that it can take up

to 6 months or more of a diligent routine to re-train him.

Fortunately he is feeling better. I will try the tea. We went back to

Culturelle twice a day and I am cutting back on the magnesium because

it is causing too much runs now.

As regards the unpleasant behavior, I just updated the document on

Troubleshooting and Side-effects in the Files section. Read through

that and see if something in there might explain what is happening.

Here is the but but it is one two lines that you will have to connect:

/files/Problems%20with%

20Enzymes%20and%20Troubleshooting/

Dana has a great explanation on what kids may experience when they

are " getting better. " I can personally vouch that this is what happen

to me and my older son. Please keep posting on how it goes.

BTW, where do you get the tea? HFS? On-line?

Thanks.

.

> Thank you so much for the info on encopresis. We had dealt

with

> that without knowing what was going on.

>

> In our case we had been on the GFCF diet for about 5 months when it

> started. My 7 y.o. Aspie has always had a problem with constipation

for

> as long as I can remember. I started using Ojibwa tea (a detoxifier)

> which didn't effect the encopresis (but seemed to help in other

areas),

> then we added probiotics in and the problem went away. I assumed the

> probiotics were what did it, but we just went on a trip where my

son had

> a major regression as soon as we landed and two days later the

> encopresis started again. No infractions that I'm aware of. He was

Mr.

> A-hole (as someone so eloquently put it earlier) for several days.

The

> only thing different was that I had stopped giving the tea (didn't

think

> it was doing any good). I started the tea back up and the encopresis

> went away. Must have been some sort of synergistic effect between

the two.

>

> We only started peptizyde 7 days ago by mixing it in OJ for lunch

and

> sometimes dinner as well (GFCF). I tried to teach my son to swallow

> capsules, but was unsuccessful. We saw the wetting problem (I'm not

sure

> it's done yet) and his behavior has been pretty bad. We've been

GFCF and

> soy-free for 9 months with only one infraction that I know of in all

> that time, so I'm surprised if this is a withdrawal reaction.

>

> Was it the combination of Peptizyde and Zyme Prime that gave

you 'happy

> kid syndrome'? Lord knows I need it. In addition to my 7 y.o. being

a

> real pain, my 3.5 y.o. NT daughter is becoming intolerable as well.

> (Someone told me NT kids go through major development struggles at

the

> half year point, 1.5, 2.5, 3.5 and don't become human until about

age 4

> or 5, especially girls.)

>

> I hope I can teach my son to swallow capsules soon, the mixing in

juice

> is pretty inconvenient if we're not at home and I'd like to cut

down on

> all that juice. The enzymes don't mix real well and my son would

freak

> out if he saw specks of the enzyme in the drink. Doesn't seem to

notice

> the taste difference with OJ and lemonade. I should probably tell

him

> what I'm doing, but he might resist after that point and I want to

see

> if it will really work before going through that battle.

>

> Thanks to everyone on this list for their input on the subject. It

is

> incredibly valuable and it is astonishing to see just how much our

kids

> have in common.

>

> -

[Guest guest]

My quick and simple reply to this problem:

a) don't force the toileting issue. If it is a sensory problem, which it

usually is, the child will not use the toilet

successfully until he/she is physically able to do so.

My daughter was dx'd about 6 months ago. We have been on a mineral oil

regimen ever since. It was a complete

success.....UNTIL - there were disturbances in her routine. ie; vacation (will

not use strange toilets), major

interruptions in routine at home, etc. So while yes, the mineral oil regimen

worked wonders (she is almost 7, btw, the

" life upsets " seem to take over.

I am waiting for school to start next week and will see if things return a

little bit back to normal.

We will also be going back to the doctor for a follow-up.

There does not seem to be an easy answer to this one, but we keep trying.

BTW, my daughter takes both Peptizyde and Zyme-Prime

Penny

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

" Just remember this: Plenty of Horsepower, No Traction " - R. S. on

" If a man does not keep pace with his companions, perhaps it is because he hears

a different drummer.

Let him step to the music he hears, however measured or far away. "

--Henry Thoreau

[Guest guest]

>> a) don't force the toileting issue. If it is a sensory problem,

which it usually is, the child will not use the toilet

> successfully until he/she is physically able to do so.

My younger son is also starting the 6th month of the encopresis

program and he can now " feel " when he needs to go, where before he

could not. He has not had messy underwear in a while. We are using

extra Peptizyde in-between meals and magnesium instead of the mineral

oil....however, the mineral oil is very commonly recommended.

.

[Guest guest]

Has anyone had a child who has apraxia and also has encopresis? (chronic

constipation, holding until fecal soiling occurs) My four year old has been

struggling with toileting and I can't seem to wonder since he has apraxia and

hyptonia, if that contributes to his inability to sense when he needs to have a

bowel movement. This may be unrelated since my older child has apraxia also but

no trouble with bowel movements. Just wondering...

[Guest guest]

Yes, my daughter had trouble with toileting. ( it lasted until she was about

11 ..she is now 12). We still have to remind/encourage her to go. Once her

language started to develop she told me... " mommy, I just don't know when I have

to go " We have worked very hard to get her to recognize the beginning feelings

of having to go, and then doing something about it before it's too late. When

she was little the big issue was swimming. As soon as she got in the water

and started to relax, she would have a BM. BIG ISSUE in swimming pools.

I really believe their has to be some maturation of the nervous system and a

degree of body awareness. We saw a big improvement after starting EFA's ( yet

one more thing to add to the benefits)

hope this helps, n

[Guest guest]

I was wondering the same thing. My daughter has been potty trained

since before she was 2yrs (she is 4 ½ now). But she continues to

have accidents! She will go weeks without a problem and then she

will have several accidents in a row. We are currently going

through " the back slide " right now. I have also been told that when

there is a gain in one area a child might regress in another area.

SO each time it happens I look for more speech! But it is hard to

tell....

Sorry I don't have an answer for you.

Dena

> Has anyone had a child who has apraxia and also has encopresis?

(chronic constipation, holding until fecal soiling occurs) My four

year old has been struggling with toileting and I can't seem to

wonder since he has apraxia and hyptonia, if that contributes to his

inability to sense when he needs to have a bowel movement. This may

be unrelated since my older child has apraxia also but no trouble

with bowel movements. Just wondering...

>

>

[Guest guest]

Hello -

It absolutely can affect potty training. If you add sensory issues,

hypotonia, motor planning delay AND the frustration generally

associated with apraxia, you can certainly wind up with a kid with

problems! I'd go ask your doc about it and see what s/he has to

say. Perhaps adding more fiber to the diet would help (I know some

people use the frosted shredded wheat as cookies) and certainly

taking the pressure off. Good luck!

Marina

> Has anyone had a child who has apraxia and also has encopresis?

(chronic constipation, holding until fecal soiling occurs) My four

year old has been struggling with toileting and I can't seem to

wonder since he has apraxia and hyptonia, if that contributes to his

inability to sense when he needs to have a bowel movement. This may

be unrelated since my older child has apraxia also but no trouble

with bowel movements. Just wondering...

>

>

[Guest guest]

Hi Marina and ,

My son Tanner who has mild hypotonia (also known as benign congenital

hypotonia when it's mild) has experienced the more talked about

toileting signs of hypotonia such as being late to potty train -and

now he has problems with constipation. To be honest -this subject

is probably the most frustrating for us as a family -because it

appears to be the one area that is resistant to " treat " therapy and

strategy wise -and not one that most, including me, feel comfortable

discussing.

Many children with low tone -even mild low tone - " will not have the

sensory or muscle control for early potty training, so don't push

the issue and give him time " I was advised by Dr. Ava Gozo -Tanner and Dakota's

neurologist/special needs

pediatricians out of Children's Specialized Hospital in

Mountainside, NJ. (who we

miss very much!! For those in NJ with a " special needs " child -

such as one with apraxia etc. -it's called " Pediatric Practice " and

it's worth the drive. They are special needs pediatricians who do

this for the love of special needs children) At four years old Tanner

potty trained and we thought that was it...nope -next came 'more'

potty problems -constipation.

Children with hypotonia, in addition to later potty training due to

not having the muscle control, do frequently also experience

constipation.

This is another area where diet does help -but again is not the total answer.

Tanner loves raw carrots and celery -stuff like that -plus he takes fish oil

(!!) and

yet we still deal with the constipation -which again if frustrating -

and not easy to talk about. In addition to lots of veggies and

fruits and fiber in the diet (which helped a bit) we even just

started the fiber tablets for Tanner to see if they will help. For

this one -I to wish there was an answer. When you have a child who

becomes one of the first to raise public awareness about oral and

verbal apraxia and all that comes with it, each stage is a new page. I'll

continue to share with all of you. Sharing may not always have answers- but at

least you'll know that you are not alone.

(And we can only hope that with The Late Talker book -more will

understand and learn what we live -and do research already!!)

" Based on our experience at the encopresis clinic at the University

of Iowa Hospitals and Clinics, functional, or idiopathic,

constipation is the cause of fecal incontinence in 95 percent of

affected children. Anatomic or neurologic causes account for up to 5

percent of cases (Table 1) "

http://www.myotonicdystrophy.org/Encopresis%20Bowel%20Delay.htm

Pediatric Constipation

http://www.fpnotebook.com/GI154.htm

-does your older apraxic child also have hypotonia?

=====

[Guest guest]

Just a thought, but PLEASE ask your doctor about this before giving it to your

child. I know this is a 100% SAFE fiber product, excellent for constipation and

Irritable Bowel Syndrome, as I used to detail it, (I'm a retired pharmaceutical

sales rep)but PLEASE.....ALWAYS ASK DOC FIRST......

I worked for Novartis Consumer Health for 3 years, and detailed a product called

BENEFIBER. Its a tasteless, odorless powder that can be mixed COMPLETELY in

soft food or any beverage that's not carbonated. IT'S COMPLETELY

undetectable....no smell, no taste, NOTHING. It was used for years in feeding

tubes in hospitals and nursing homes. It's nothing more than GUAR GUM....which

is used in ice cream....100% natural, no sugars, dyes, etc. It's an absolutely

EXCELLENT product for anyone with IBS or constipation. If anyone would like

some samples (I still have PLENTY around), please email me privately at

KissmeKaate@..., I'll be happy to send you a few along.

This has the indication from the FDA of safety for children 2 years and older.

There are NO CHOKING HAZARDS with this fiber, as many of them have warning of

that. It's recommended in pregnancy for constipation, as well, so its 100%

NATURAL and safe...

Anyone needs anymore info, or samples, don't hesitate to ask!

Boy, you guys are sure turnin on the lights for me...I'm realizing how REALLY

BAD my pediatrician is, although I've sensed that for YEARS. I phoned yesterday

to ask him about apraxia...his response was " what's that?.....and what makes you

think he has it? " Oh boy.....Thanks for everyone's sharing here..you're all very

special parents and wonderful people. God bless all of you!

Karyn

[ ] Re: encopresis

Hi Marina and ,

My son Tanner who has mild hypotonia (also known as benign congenital

hypotonia when it's mild) has experienced the more talked about

toileting signs of hypotonia such as being late to potty train -and

now he has problems with constipation. To be honest -this subject

is probably the most frustrating for us as a family -because it

appears to be the one area that is resistant to " treat " therapy and

strategy wise -and not one that most, including me, feel comfortable

discussing.

Many children with low tone -even mild low tone - " will not have the

sensory or muscle control for early potty training, so don't push

the issue and give him time " I was advised by Dr. Ava Gozo -Tanner and

Dakota's neurologist/special needs

pediatricians out of Children's Specialized Hospital in

Mountainside, NJ. (who we

miss very much!! For those in NJ with a " special needs " child -

such as one with apraxia etc. -it's called " Pediatric Practice " and

it's worth the drive. They are special needs pediatricians who do

this for the love of special needs children) At four years old Tanner

potty trained and we thought that was it...nope -next came 'more'

potty problems -constipation.

Children with hypotonia, in addition to later potty training due to

not having the muscle control, do frequently also experience

constipation.

This is another area where diet does help -but again is not the total answer.

Tanner loves raw carrots and celery -stuff like that -plus he takes fish oil

(!!) and

yet we still deal with the constipation -which again if frustrating -

and not easy to talk about. In addition to lots of veggies and

fruits and fiber in the diet (which helped a bit) we even just

started the fiber tablets for Tanner to see if they will help. For

this one -I to wish there was an answer. When you have a child who

becomes one of the first to raise public awareness about oral and

verbal apraxia and all that comes with it, each stage is a new page. I'll

continue to share with all of you. Sharing may not always have answers- but at

least you'll know that you are not alone.

(And we can only hope that with The Late Talker book -more will

understand and learn what we live -and do research already!!)

" Based on our experience at the encopresis clinic at the University

of Iowa Hospitals and Clinics, functional, or idiopathic,

constipation is the cause of fecal incontinence in 95 percent of

affected children. Anatomic or neurologic causes account for up to 5

percent of cases (Table 1) "

http://www.myotonicdystrophy.org/Encopresis%20Bowel%20Delay.htm

Pediatric Constipation

http://www.fpnotebook.com/GI154.htm

-does your older apraxic child also have hypotonia?

=====

[Guest guest]

I thought that I jump in, on the subject. I am from CT, and my son's

pediatrician actually recommended Benefiber for him (he is 4 yo). It's very

easy to mix it in anything, and like Karyn was saying is tasteless and

odorless. I am giving him a teaspoon every other day and he is all set. No

constipation problems. I have to add, my son, being autistic, is a very

picky eater (no fruit or vegetables).

Happy 4th of July, everybody!

Luana

Re: [ ] Re: encopresis

Just a thought, but PLEASE ask your doctor about this before giving it to

your child. I know this is a 100% SAFE fiber product, excellent for

constipation and Irritable Bowel Syndrome, as I used to detail it, (I'm a

retired pharmaceutical sales rep)but PLEASE.....ALWAYS ASK DOC FIRST......

I worked for Novartis Consumer Health for 3 years, and detailed a product

called BENEFIBER. Its a tasteless, odorless powder that can be mixed

COMPLETELY in soft food or any beverage that's not carbonated. IT'S

COMPLETELY undetectable....no smell, no taste, NOTHING. It was used for

years in feeding tubes in hospitals and nursing homes. It's nothing more

than GUAR GUM....which is used in ice cream....100% natural, no sugars,

dyes, etc. It's an absolutely EXCELLENT product for anyone with IBS or

constipation. If anyone would like some samples (I still have PLENTY

around), please email me privately at KissmeKaate@..., I'll be happy

to send you a few along.

This has the indication from the FDA of safety for children 2 years and

older. There are NO CHOKING HAZARDS with this fiber, as many of them have

warning of that. It's recommended in pregnancy for constipation, as well,

so its 100% NATURAL and safe...

Anyone needs anymore info, or samples, don't hesitate to ask!

Boy, you guys are sure turnin on the lights for me...I'm realizing how

REALLY BAD my pediatrician is, although I've sensed that for YEARS. I

phoned yesterday to ask him about apraxia...his response was " what's

that?.....and what makes you think he has it? " Oh boy.....Thanks for

everyone's sharing here..you're all very special parents and wonderful

people. God bless all of you!

Karyn

[ ] Re: encopresis

Hi Marina and ,

My son Tanner who has mild hypotonia (also known as benign congenital

hypotonia when it's mild) has experienced the more talked about

toileting signs of hypotonia such as being late to potty train -and

now he has problems with constipation. To be honest -this subject

is probably the most frustrating for us as a family -because it

appears to be the one area that is resistant to " treat " therapy and

strategy wise -and not one that most, including me, feel comfortable

discussing.

[Guest guest]

yeap, we have it here too. But Lindsey rarely gets it on her underware. She will

run to the bathroom,holding her behind all day on those days and it just won't

come out, It really hurts her.Thankfully she doesnt get completly impacted. Her

pediatrition said it is a low tone thing along with a diet thing.

This is what we were instucted to do for Lindsey.First you clean them out using

an adult fleets MINERAL OIL enema-orange label

then to keep them regular. you mix together 1 cup Kretschmer wheat germ.1 cup

any flavor applesauce,3/4 cup prune juice. refrigerate and give 1-2 tablespoons

per day.

if this doesnt work we have other options to do.

Jennie

[Guest guest]

Thank you so much !!

Tanner's doctors have advised Citrucel and similar over the counter

products like this for Tanner (on the bottles they have the child's

dosage) The powder I have -the Citrucel -clumps if Tanner doesn't

drink it fast -and he hates the taste - so he doesn't drink it fast -he doesn't

want to drink it at all. (this is the same child that will swallow fish oil each

day -go figure) Then he

won't drink the yucky clump of course. Does the BENEFIBER clump if

not drunk quickly? I remember last time I was at the store I was

going to try that one next -but instead I just bought the Fiber

Choice (4 grams per dose) chewable orange tablets. One a day and so

far not much help yet. I'm hoping the BENEFIBER will be better.

Actually some medications were talked about just for knowledge, not

to try at this point yet at his young age. Like potty training -we

were advised to continue adding the extra fiber (which again

Tanner's neuromedical MD's not only OK'd -they brought up to me and

recommended it even) -and hopefully this too shall pass (sorry -I

don't mean that as a pun -just meant Tanner will be helped to

overcome much of this too!!)

=====

[Guest guest]

Hi Everyone

Benefiber DOES NOT clump, get thick, or change the consistency of ANYTHING you

eat or drink. I've left it in ice water for hours only to come back and still

find it crystal clear. Completely non detectable. It's an excellent product.

Again, if anyone would like some FREE, lol, samples, I'm happy to send you as

many as you need. I've got a lot...please, don't be shy. The wonderful thing

about Benefiber is there's no stimulant in this product....so....doesn't make

anyone have to RUSH to the bathroom.

Hope that helps......email me anytime

~Karyn

[ ] Re: encopresis

Does the BENEFIBER clump if not drunk quickly?

[Guest guest]

Hi ,

My son is 4.5 years old has verbal apraxia and often is

constipated. I have never heard of encopresis. My son struggled with toilet

training as well. He will have a BM on the toilet but he has many episodes

where he will sit on the ground and hold his knees and push but nothing

comes out, except for discharge and therefore soiling his underwear. We can

have this happen many times before he finally has a HUGE BM. When he pushes

he'll sometimes ask me if there is a bm in his underwear. It seems like he

feels something (which I guess is the discharge from pushing) but then other

times he'll just ask me to change him because he knows he has soiled his

underwear.

I guess I am confused because there are times that he will go

right to the toilet (after running around the house fighting the urge) but

then there are these episodes where I will have to change him many times

before he goes and that could be a day or two. He does not have any other

issues other than apraxia and this constipation issue. Do you think I

should be looking for other things going on?

Thank you to anyone who has any input. I am constantly

learning things from everyone in this group. Thank you for all the great

information!

>From: M Watters-Burke <vwatters@...>

>Reply-

>

>Subject: [ ] Re: encopresis

>Date: Thu, 03 Jul 2003 00:53:17 -0500

>

>Has anyone had a child who has apraxia and also has encopresis? (chronic

>constipation, holding until fecal soiling occurs) My four year old has

>been struggling with toileting and I can't seem to wonder since he has

>apraxia and hyptonia, if that contributes to his inability to sense when he

>needs to have a bowel movement. This may be unrelated since my older child

>has apraxia also but no trouble with bowel movements. Just wondering...

>

>

[Guest guest]

Yes my daughter who is 5 and soon will be 6yrs old has apraxia and is

constipated and usually is incontinent of her bowel movements.

the pediatrician put her on Mrylax but I only give her this when she has not

gone for 4 days or so. Otherwise I use pear juice which works the best or

applesause.

I wonder to if this has anything to do with apraxia?

What is hyptonia?

Lynn

[ ] Re: encopresis

> Has anyone had a child who has apraxia and also has encopresis? (chronic

constipation, holding until fecal soiling occurs) My four year old has been

struggling with toileting and I can't seem to wonder since he has apraxia

and hyptonia, if that contributes to his inability to sense when he needs to

have a bowel movement. This may be unrelated since my older child has

apraxia also but no trouble with bowel movements. Just wondering...

>

>

>

>

>

>

>

[Guest guest]

Marina,

My older son with apraxia does not have hyptonia. For him, even though we

signed (Non-verbal until 33 months) during potty training (potty-trained at 26mo

in one week), he was very easy to train and never seemed to have any accidents.

My younger son received the diagnosis of apraxia at 14 months, since we already

knew what we were dealing with the older sibling diagnosis and due to all the

sucking/feeding problems at birth and infancy of the youngest. Potty-training

has been a nightmare for the last year for my youngest, and now the constipation

issues. My pediatrician has him on daily prescription laxatives and

suppositories, and all he has is liquid soiling - no solid bowel moments for

over 4 weeks. It has really put a stress on our family, especially my son with

the problem since he tries to hide the accidents or doesn't tell his teachers

and by the time I get there to pick him up he has rashes from accidents. Not to

mention the screaming during the suppository sessions. My

pediatrician wants him to sit on the toilet for 10 min after he eats once a day

to get him in a routine which may be the issue with typical children but mine

just does not want to sit there and I end up holding him on the potty for the

10 minutes unitil the timer goes off. He eats lots of dried cherries, prunes,

etc. and I have tried to increase his water consumption but I really don't know

what else to do. I know this subject is not the most pleasant, but I do

appreciate the responses. Thanks to all. .

[Guest guest]

,

My pediatrician gave me samples of a prescription laxative called Miralax, which

after reading the pachage insert is not indicated for children. It is a

tasteless, odorless powder that I mix in 1/2 apple/ prune juice. It states to

use only for 2 weeks, but we are heading into more than 5 weeks now without a

solid BM, when I called back to say it wasn't working, I was told to begin the

suppositories.

[Guest guest]

,

The term encopresis is the medical term for the passage of feces into

inappropriate places at any age after bowel control ahould be established. So

since my child soils his underwear, therefore the diagnosis. There is primary

and secondary encopresis.

[Guest guest]

,

I can sympathize with what your going through. We were there throughout

Daisy's childhood. Some of the things that really helped us were:

Eliminating Dairy and Wheat from her diet. (we also got rid of

corn,especially high fructose corn syruup)

Using Probiotics (like the good bacteria found in yogurts)

Using Flax in as many of our foods as humanly possible

Really, really limiting the sugars.

A lot of what our kids go through looks like IBS (irritable bowel syndome) or

celiac like symptoms. I found when we modified our diet as if she had these

conditions there was tremendous improvement.

Hang in there. n

[Guest guest]

,

Thanks for your reply. They say you learn something new each day

and this has been something my son has been struggling with and I did not

know it had a name. Thank you for opening my eyes to this, maybe now I can

help my son more.

>From: M Watters-Burke <vwatters@...>

>Reply-

>

>Subject: Re: [ ] Re: encopresis

>Date: Fri, 04 Jul 2003 01:36:17 -0500

>

>,

>The term encopresis is the medical term for the passage of feces into

>inappropriate places at any age after bowel control ahould be established.

>So since my child soils his underwear, therefore the diagnosis. There is

>primary and secondary encopresis.

>

>

>

[Guest guest]

Yes, I admit I too can relate to this issue. My daughter's low tone

contributes to not only constipation but also breathing problems when she is

very

congested. I find mangoes are great for helping with it and also I think the

efa's. When I told my daughter's gastroenterologist (sp?) that I was giving her

proefa, he said it could only help with the constipation. The more oil, the

better. I find though that my daughter will hold it in because she is afraid of

the feeling. Also, she seems to need to go standing up to help it get out.

Sorry, I am being so grafic.

Thank you for the information on encopresis, I never knew it had a name; as

well as the group info.

But do try the mangoes, they work wonders.

Carolyn

[Guest guest]

Hi Lynn, Kim and everyone!

Wow this yucky topic (wish I couldn't relate to) ... appears to

be more common than we knew. I guess nobody talked about this for the

same reasons I didn't want to. But once someone got the nerve to

fess up those that relate can finally talk about it to try to find

answers-it is as I said a problem -and one that we have not found an

answer for yet. Kim -I don't know much about the oxygen

therapy/or " hyberbaric oxygen treatments " but the results you report

are very impressive.

Not that I gave it much thought before -but we do have this trendy

looking 'Oxygen Bar' by us here that I can try! This isn't the

website for the one near me -but here's one just about this

new " trend in Bars "

http://www.oxygenexperience.com/1/theExperience.shtml (if it falls

into my theory of doesn't hurt and may help -I'll try it for Tanner -

the one near me is way closer to get to than Canada now that I'm in

Florida)

I appreciate the established oxygen therapy is probably much more

than what the oxygen bar offers...but the bar is really cheap to

try -like the one by me is $1 a minute or something -and it's

supposed to be really nice to try. For example -this site

distributes it's supplies for therapy places as well as for bars

http://www.o2planet.com/ And here is a tanning salon in California

that offers " hyperbaric oxygen chamber treatments " -so these things

are probably all over if anyone is interested.

http://www.spectrumtan.com/hyperbaric.htm

I'll let you guys know after we try it! Has anyone else tried this?

Lynn -you brought up a good question -what is the cause of the late

potty training and then the constipation later on? Could it be from

the motor planning aspects of apraxia or is it from the mild low

tone (hypotonia) that is known to at times create these toileting

problems -or could it be a combo of both?

reported her son who has apraxia and hypotonia is the one

with the constipation/encopresis problem, while her older apraxic

son who does not have hypotonia does not have any

constipation/encopresis problems.

Many children with apraxia have low tone somewhere in their body.

The only way to know for sure your child does or does not have mild

hypotonia -like most of the children with apraxia have (anyone can

spot more severe hypotonia -like floppy baby -which represents only

some in this group) is to take your child to a pediatric

neurologist or a developmental pediatrician. Most can't just look

at a child and say " no they don't have hypotonia " because at a

preschool age -most of the children are intelligent to understand

what is expected of them -and push themselves enough to blend. In

addition -most of us who have children now diagnosed as having

hypotonia have children that we described by all (possibly even the

child's pediatrician) as being " totally normal -outside of being

just a late talker " It's not until the child is a bit older and more

and more is expected of them do they typically break down. This is

why I stress taking any child even just suspected of having apraxia

to a neurodevelopmental MD -Early Intervention is proven.

Lynn here are some hypotonia signs to look for from the CHERAB site:

" Here are some quick parent friendly signs of mild hypotonia:

A child with hypotonia will feel heavier than a child of the same

weight without hypotonia (kind of like the difference between

picking up your child when he's fast asleep vs. awake) Hypotonia can

be anywhere in the body. Does your child appear to tire faster than

other kids his age walking in the mall etc.? Will you and your wife

not dream of taking him anywhere without the stroller because you

know if you don't bring the stroller you will be stuck carrying him

because if you don't pick him up he will sit on the floor crying

with his arms in the air for you to pick him up again? And since

he's nonverbal -you will get looks from people passing by, or

perhaps even comments -that your child is acting spoiled. When you

pick him off the floor -it's not as easy as it looks for you -or

others that try! Most will say " wow he's solid! " when picking him

up. " Solid " is the word used by almost everyone to describe your

child when people pick him up come to think of it. His body may

look small and light -and many times both look like a cherub, and

feel a bit like a marshmallow -rounded and soft. He may sit in

the " W " position. If a child has severe hypotonia -he may look a

bit like a rag doll (those are the children however that are spotted

early however) -gravity just pulls them down. For a school age

child -look for the child who can't sit at the desk long before

leaning down on it. The child who when waiting on line will either

lean or sit down. The child (or adult) with rounded shoulders who

is always being told " stand up straight! " or " sit up! " etc. "

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

So the question is -out of those who have an apraxic child -how many

were late at potty training -and are now having problems with

constipation who have taken their child to a neurodevelopmental MD

and do " NOT " have hypotonia? (since we know so many with apraxia

and hypotonia that do have these issues -and again with hypotonia -

it is documented as written about in The Late Talker book

http://www.speech-express.com/late.talker.html under benign

congenital hypotonia (mild hypotonia)

Off to a Forth of July party -hope everyone's day is great, and I

hope that the oxygen bar works for Tanner -because that would just

be too cool -and almost too easy!

=====

[Guest guest]

Oxygen? Do any of these kids have undx sleep apnea?

I have just been dx with sleep apnea (high blood pressure was the marker..., I

don't snore, so it was not obvious)...wondering here if the need for oxygen...is

there a correlation? Jordan has apnea..snores terribly...having the horrid

tonsil/adenoid surgery...

Just a thought why oxygen may improve someone's condition?

~K

[ ] Re: encopresis

Hi Lynn, Kim and everyone!

Wow this yucky topic (wish I couldn't relate to) ... appears to

be more common than we knew. I guess nobody talked about this for the

same reasons I didn't want to. But once someone got the nerve to

fess up those that relate can finally talk about it to try to find

answers-it is as I said a problem -and one that we have not found an

answer for yet. Kim -I don't know much about the oxygen

therapy/or " hyberbaric oxygen treatments " but the results you report

are very impressive.

Not that I gave it much thought before -but we do have this trendy

looking 'Oxygen Bar' by us here that I can try! This isn't the

website for the one near me -but here's one just about this

new " trend in Bars "

http://www.oxygenexperience.com/1/theExperience.shtml (if it falls

into my theory of doesn't hurt and may help -I'll try it for Tanner -

the one near me is way closer to get to than Canada now that I'm in

Florida)

I appreciate the established oxygen therapy is probably much more

than what the oxygen bar offers...but the bar is really cheap to

try -like the one by me is $1 a minute or something -and it's

supposed to be really nice to try. For example -this site

distributes it's supplies for therapy places as well as for bars

http://www.o2planet.com/ And here is a tanning salon in California

that offers " hyperbaric oxygen chamber treatments " -so these things

are probably all over if anyone is interested.

http://www.spectrumtan.com/hyperbaric.htm

I'll let you guys know after we try it! Has anyone else tried this?

[Guest guest]

Hi K,

Sleep -funny you should bring this up. We were supposed to leave

for a party for the forth to be there already -and both Tanner and

Dakota fell asleep! (would you call that party poopers or what?!)

So since I'm the only one that never sleeps here -I looked up more about the

oxygen bar/therapy and it appears that it is all over. These are

just a few links -there are way more out there. Read some of what I found

from the NIH to India -to a recent news article: (and how the " Hyperbaric Oxygen

(HBO) Chamber...is imported from Florida " ...yay!)

" AP's first oxygen bar opens

Jayashankar Menon - Hyderabad

Orange Oxygen Centre. The new oxygen bar in Hyderabad only indicates

how well the trend has caught up. And that, there is a market for

such ventures.

Speaking about Orange, Dr Sunil Bhandari, orthopedic surgeon and the

brain behind the Centre says, " A feature that I saw about Hyperbaric

Oxygen Therapy (HBOT) on the Internet prompted me to set up an

oxygen centre in Hyderabad. I was shocked to learn that the oxygen

level in the atmosphere has depleted to an alarmingly low level of

about 19 per cent due to the increasing pollution and the burgeoning

population. "

The Centre is the first oxygen bar in the state and it offers two

kinds of therapies. One type of therapy is through Hyperbaric Oxygen

(HBO) Chamber, which is imported from Florida in which the person is

seated in the chamber alone and the other one is through the Moskh

Chamber (MC), where six persons are seated together. Once inside the

chamber, the persons inhale 100 per cent pure oxygen.

Most people are known to show incredible effects including increased

stamina, stronger immunity, improved digestion and respiration,

clearer thinking and visibility and of course, reduced mental

fatigue. The Centre charges Rs 750 per hour for the HBO therapy and

Rs 300 per hour for the MC therapy. Speaking about the cost, Dr

Bhandari says that the charges are definitely affordable since

oxygen centres in metropolitan cities like Delhi and Bangalore

charge Rs 2000 per hour.

The response is pretty good and many people are utilising this

opportunity, says Dr Bhandari, who is planning to open more centres

in the twin-cities of Hyderabad and Secunderabad. " In fact even Sri

Sri Ravi Shankarji, the Guru who is guiding millions of people

through his Art of Living breathing techniques, stresses the need of

inhaling maximum amount of oxygen which is the cure of all

ailments. " he adds.

The Sudarshan Kriya followed by many of his disciples, is nothing

but the right technique of breathing and inhaling the right amount

of oxygen. For people who don't find time to practice the guru's

techniques, may be, Centres like Dr Bhandari's would do the trick.

http://www.expresshealthcaremgmt.com/20011130/hospinews1.htm

U.S. Food and Drug Administration

FDA Consumer magazine

November-December 2002

Oxygen Bars: Is a Breath of Fresh Air Worth It?

By Bren

Peppermint, bayberry, cranberry, wintergreen. Breath mints? Scented

candles? No--they're " flavors " of oxygen offered at your local

oxygen bar. Since oxygen bars were introduced in the United States

in the late 1990s, the trend has caught on, and customers are

bellying up to bars around the country to sniff oxygen through a

plastic hose (cannula) inserted into their nostrils. And many

patrons opt for the " flavored " oxygen produced by pumping oxygen

through an aroma en route to the nose.

The oxygen experience in a bar can last from a few minutes to about

20 minutes, depending on customers' preferences and the size of

their wallets. The price of about a dollar a minute could leave you

gasping for air, but frequent inhalers may get a discount.

Most oxygen bar proprietors are careful not to make medical claims

for their product, and state that their oxygen is not a medical gas--

it's made and offered strictly for recreational use. But under the

Federal Food, Drug, and Cosmetic Act, any type of oxygen used by

people for breathing and administered by another person is a

prescription drug. " It doesn't matter what they label it, " says

Melvin Szymanski, a consumer safety officer in the Food and Drug

Administration's Center for Drug Evaluation and Research (CDER). " At

the other end of the hose is oxygen, and the individual that

provides you with the nasal cannula and turns on the canister for

your 20-minute supply is actually dispensing the prescription drug

oxygen to you. "

Although oxygen bars that dispense oxygen without a prescription

violate FDA regulations, the agency applies regulatory discretion to

permit the individual state boards of licensing to enforce the

requirements pertaining to the dispensing of oxygen, says Szymanski.

Many states choose to allow oxygen bars; others discourage the

businesses by requiring strict compliance with the law. However,

serious health claims made for oxygen, such as curing cancer or

AIDS, or helping ease arthritis pain, would be investigated by the

FDA, adds Szymanski.

Healthy or Just Hype?

Oxygen fans tout the benefits of oxygen as reducing stress,

increasing energy and alertness, lessening the effects of hangovers,

headaches, and sinus problems, and generally relaxing the body. But

there are no long-term, well-controlled scientific studies that

support these claims for oxygen in healthy people. And people with

healthy lungs don't need additional oxygen, says Purucker,

M.D., Ph.D., a pulmonary specialist in CDER. " We've evolved for

millions of years in an atmosphere of about 21 percent oxygen. "

The American Lung Association says that inhaling oxygen at oxygen

bars is unlikely to have a beneficial physiological effect, but

adds " there is no evidence that oxygen at the low flow levels used

in bars can be dangerous to a normal person's health. "

People with certain medical conditions are another matter. Some need

supplemental oxygen, but should not go to oxygen bars, says

Purucker. People with some types of heart disease, asthma,

congestive heart failure, pulmonary hypertension, and chronic

obstructive pulmonary diseases, such as emphysema, need to have

their medical oxygen regulated carefully to oxygenate their blood

properly, says Purucker. " If they inhale too much oxygen, they can

stop breathing. "

People who have received bleomycin, a chemotherapy used to treat

some types of cancer, are in danger if they are exposed to high

levels of oxygen for too long, adds Purucker. " People think oxygen

is good, but more is not necessarily better. "

One of the FDA's biggest concerns about oxygen bars is the use

of " flavored " oxygen, says Purucker. The flavor is produced by

bubbling oxygen through bottles containing aromatic solutions and

then pumping the vaporized scent through the hose and into the

nostrils. Some bars use oil-free, food-grade particles to produce

the aroma, but others may use aroma oils. Inhaling oily substances

can lead to a serious inflammation of the lungs, known as lipoid

pneumonia. Even if an oil-free medium is used, the purity or

sterility of the aerosol that is generated cannot be guaranteed.

Susceptible customers run the risk of inhaling allergens or

irritants that may cause them to wheeze. Inhalation of live

contaminants such as bacteria or other pathogens may lead to

infection.

Other Oxygen Hazards

Although oxygen doesn't burn, it does fuel the combustion

process. " Smoking anywhere near oxygen, even in the same room, can

be extremely dangerous, " says Duane Sylvia, a consumer safety

officer in CDER. While some oxygen bars are located in health spas

or other facilities that don't allow smoking, others are found in

nightclubs or casinos where smoking is common. Another fire hazard

is the addition of substances, such as oils, in an oxygen-enriched

environment.

Improper maintenance of oxygen equipment presents a potential

danger. Some oxygen concentrators use clay filters, which can start

growing pathogenic microorganisms that can cause infection if they

are not changed regularly.

And oxygen cylinders can be very hazardous if they are stored on

their sides or not kept in a well-ventilated area, says Sylvia.

Pumping Oxygen

Most oxygen bars use either " aviators breathing oxygen " or oxygen

extracted out of the air in the bar. Aviators breathing oxygen (ABO)

is a medical-grade oxygen, not less than 99.0 percent pure, intended

for commercial or private aircraft use. ABO should not be used for

recreational inhalation or medical therapeutic treatment of humans

or animals.

Many oxygen bars use a concentrator, which filters out the nitrogen

and other gases in the air circulating in the room, and then

delivers the concentrated oxygen, about 95 percent pure, through a

hose at a continuous flow rate. But oxygen users inhale the

surrounding air along with the oxygen pumped through the nose hose,

which decreases the concentration. The concentration is further

decreased when oxygen is pumped through an aroma. According to one

oxygen bar supplier, the customer gets less than 50 percent pure

oxygen.

Although breathing these low levels of oxygen may not hurt a healthy

person, " people have nothing to gain by frequenting oxygen bars, and

subject themselves to unnecessary risk, " says Purucker.

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

Oxygen and Sports

We've all seen it on TV--a football player runs off the field after

a play and dons an oxygen mask. " They don't need it, " says Conrad

Earnest, Ph.D., director of exercise physiology at the

Institute in Dallas. " It's one of the biggest placebo effects

going, " he adds. " It's a combative activity, so yes, the players are

going to be out of breath, but it's because of massive exertion--not

because of lack of oxygen. " The exception, says Earnest, might be

athletes who play at higher elevations than they are used to, and

don't have time to acclimate. " If the New York Giants go to play the

Washington Redskins, the benefit of oxygen--if any--would be so

small it wouldn't be measurable. But if they go to play the Denver

Broncos--going from sea level to a mile-high altitude--they may be

helped by oxygen while recovering from a play. "

And products with added oxygen, such as oxygenated water, sports

drinks, and skin sprays don't impress Earnest, who refers to their

suppliers as putting " sales before science. " " If you drink

oxygenated water, either the water passes through the gut and has no

effect, or the acid in the stomach reacts with it and the only

effect of the oxygen is that it will cause you to burp more, " he

says.

--L.B.

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

The Air Up There

Atmospheric pressure decreases as altitude increases, making it more

difficult to breathe. But people living at high altitudes do adapt

to their environment without using additional oxygen, says

Purucker, M.D., Ph.D., a Food and Drug Administration pulmonary

specialist. " The blood becomes more efficient at transporting oxygen

to tissues. "

Healthy people traveling from lower to higher elevations don't

usually need extra oxygen either, says Mazzeo, Ph.D., an

exercise physiologist at the University of Colorado in Boulder. But

if people who live at low elevations try to exercise at higher

elevations, such as the mile-high city of Boulder, they should be

aware that exercise will be more taxing. " Maximum capacity declines

as altitude increases, " says Mazzeo. " If you're used to running two

miles a day, you can still run two miles, but not at the same speed. "

--L.B.

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

http://www.fda.gov/fdac/features/2002/602_air.html

Fresh air

Oxygen bars claim to offer a quick, clean boost to the tired and

weary

By KATE GURNETT, Staff writer

First published: Tuesday, June 24, 2003

Oxygen changed Fred Leonardi's life.

Kearsing, left, of Colonie, and Westfalo of

Guilderland, sample scented oxygen at the Oasis Tanning,

Hydrotherapy, Oxygen Bar in Colonie. ( Goolsby / Times Union)

He was slumped in his booth at an Internet convention last summer in

Las Vegas, tired after a 16-hour day, when his wife, , bound

into the booth.

We're going out to dinner, she whooped.

What got into you? he asked.

Oxygen, she said. She was bright-eyed. She'd inhaled some at a

nearby booth. Fred was skeptical. Then he tried it himself. It

cleared his head and gave him a boost, similar to a cup of coffee,

he said.

Today, Leonardi runs the Capital Region's first oxygen bar. The

Oasis Tanning, Hydrotherapy, Oxygen Bar at 1869 Central Ave. in

Colonie, opened in April.

His tanning salon customers are hesitant about trying the

oxygen. " We're educating them as they come in, " Leonardi said.

Like many trends, this comes relatively late to upstate New York.

Spawned in smog-filled metropolises like Tokyo in the 1980s, oxygen

bars cropped up in Los Angeles in the 1990s and have since spread to

cities and towns across the country.

A good feeling

As anyone who's ever had one knows, a face mask full of oxygen sure

feels good. Working off that premise, oxy-bars offer 15-minute

sessions (at about $1 a minute) in smaller, scented doses to tired,

hung-over or headache-ridden customers. Clients slip twin tubes in

their nostrils and sniff the oxygen.

Doctors are skeptical about the claims.

" Does it do anything beneficial? Probably not. Does it do any harm? "

Probably not, said Rosen, associate professor of medicine

at Albany Medical College, who specializes in high-altitude

physiology.

Even pro football players who sniff oxygen on the sidelines do so

without physiological proof that it improves athletic performance,

Rosen said.

Certainly, intense activity can create an " oxygen debt. " But once

the body is at rest, it restores its balance within a few breaths,

Rosen said. The exception is high altitude stadiums. There, a hit of

O can bring quick relief.

Doctors do use oxygen to treat heart disease, lung disease, injury-

related stress and migraine headaches. In the NASCAR world, drivers

like Rick Mast suck down bottles of oxygen after a race to combat

carbon monoxide exposure. And at a very high level, pressurized

oxygen -- in bags or a large, hyperbaric chamber -- heals injuries

from burns to deep cuts. There, oxygen is applied directly, rather

than carried through blood vessels to heal wounds.

Such doses are more intense, and are monitored because too much

oxygen can be toxic, Rosen said.

Jet-lag remedy

Since 2000, the wellness spa OraOxygen has offered 15-minute oxygen

treatments at airports, now available in Detroit, Calgary, and

Amsterdam, Holland.

Owner Suzanne Letourneau, a former flight attendant, felt passengers

needed a remedy for fatigue, dehydration and other jet-lag symptoms.

And a little fresh air after breathing commercial airplane air,

which is pressurized to an altitude of 7,000 to 9,000 feet, is

recirculated and often poorly filtered.

Oxygen can ease those symptoms, Rosen said.

Aromas range from OraOxygen's complex offerings like " Pre-flight

Safety Focus " or " Slow Decompression " to the Oasis' strawberry wine

or Jamaican rum.

On a recent, stressful morning as an account manager for the

American Red Cross, Dixie Goguen stopped at the Oasis Oxygen Bar in

Colonie for a 20-minute hydrotherapy massage ($20) and 15-minute

oxygen boost ($18).

" I'm ready for round two, " said Goguen, 31, who was looking to

recharge her day.

At her left elbow, a generator filtered oxygen out of the room air

(which contains 21 percent oxygen). The machine combined the

odorless element with a margarita-menthol scent.

It's hard to feel the oxygen entering the lungs, Goguen said. " It's

not like someone blowing up your nose. "

But she could feel the effects. " The whole experience left me

feeling very (alert) and light on my feet. The rest of the day was a

heck of lot better than the beginning. I'm definitely going to do it

again. "

http://www.timesunion.com/AspStories/story.asp?storyID=145516

=====

[Guest guest]

Well...

I'll be sleeping with CPAP for the rest of my life after my test confirms this,

so I'll let you know first hand on this one. I do have to admit, ever since

I've had this (I noticed this begin when I was pregnant...I carried him very

high, and the obg thought it would subside once he was born, obviously not),

I've had horrible difficulty concentrating (yes I do have ADHD, however it's

gotton MEASURABLY WORSE), and had numerous other " mysterious " things going on.

I'm not looking forward to sleeping with a mask on my face, but if my life goes

back to the way it was, it will be a HUGE relief to me. So......I guess I'll

have some first hand advice to share here . We shall see

~Karyn