issues

[Guest guest]

Well, smartbansters has not canned me yet, but I took a bashing over

there from members and moderators so I found y'all. Much happier now !

Hello to all. I am Amie. I was banded in jan of this year. Thought I

might intro myself while posting. Hello Sandy. I replied to your email

from the Mexican list, thanks again for your kindness.

Amie

> Which " she " is doing that now? Private reply is fine.

>

> The original, and actual, owner is of the male persuasion.

>

> I used to be a moderator there, but they canned me from that after I

permitted a few " critical of the group " posts through. Then not long

after, they canned me totally and permanently. I'm tempted sometime

to join up under a different ID, but that's too much trouble and

I just don't care that much.

>

> dan

[Guest guest]

Well said GLORIA

There are two things the world cannot take away from you, and that is your FAITH and your IntelligenceBLESSINGSAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Well said GLORIA

Huh?? What did I say? LOL! I don't remember. But thanks!

Gloria

************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

WElcome Amie! Gald you found us!! :-)

Sandy r

>

> Well, smartbansters has not canned me yet, but I took a bashing over

> there from members and moderators so I found y'all. Much happier

now !

> Hello to all. I am Amie. I was banded in jan of this year. Thought I

> might intro myself while posting. Hello Sandy. I replied to your email

> from the Mexican list, thanks again for your kindness.

>

> Amie

>

[Guest guest]

Misty,

i like your spirit.

i must admit, i'm getting accustomed to the feeling of " running on

empty " . it doesn't yet feel normal (what the heck is that,

anyway?). but it lets me experience eating. my commitment is to

stop using my mouth like a vacuum cleaner where food is involved.

with my band, i can now experience the feeling of fullness, or even

better, satisfaction, without stuffing myself. a huge difference

versus the past.

with respect to the 'love affair " with food, if it were a

relationship with another human, it would be called abuse. LOL.

and everyone would ask why we stay in face of such a damaging

past.

so now, you're a day away from your surgery. too late to get

nervous. just hang tight and commit to " feeling " everything you do

with respect to eating. it will be remarkable, if you do it, how the

observations of our natural tendencies, damaging as they have been,

can be controlled if we want to. with the band as a partner, that

job becomes easier.

best of luck tomorrow,

>

>

> You are so right. Feeling hunger these last 9 days has been very

> humbling for me. I //

[Guest guest]

You might want to try them again...

I am a member of SmartBandsters and am set not to recieve

emails...neither individual or digests; I read all the posts (or those

I choose to online) and have never had a problem with my membership.

All the best,

11/16/06

302/256/175ish

NWWLS

[Guest guest]

//But unless they've recently changed the rules, SmartBandsters will

NOT allow you to digest and will NOT allow you to be web only message

reading. //

Don't know when/if the rules have changed... I've been a member for 8

months and have been web only since I joined

11/16/06

NWWLS

[Guest guest]

Hi Amie

Sorry that you felt 'bashed' on the other board...

You asked for peoples opinions and didn't hear what you wanted when it

came to replies. I actually found your question interesting and

thought that people made some good and valid points in their replies

to you.

I'm a firm believer in being able to ask any questions we might have,

that's why we join these boards, but I'm also a believer that when we

ask a question we shouldn't be upset or defensive when we are told

things we don't want to hear

All the best in your journey...

11/16/06

[Guest guest]

Dan,

i joined smartbandsters to get an idea of what they're up to. rules

galore, but they allow the digest now. Can't see so far that its doing

anything real valuable. i've put in my 2 cents a few times and am

waiting for the response/retribution. LOL

george

>

> Well, yes, it is a he. I mentioned " she " since there are, or at //

[Guest guest]

Hey ,

I am an official bandster!! Things went wonderful in Mexico, much

better than anticipated. I feel great, have no nausea, liquids are

going down fine, and very little pain. I have some discomfort

getting in the car, but nothing that I can't handle. In fact, I had

my surgery yesterday and could have easily done the 7 hour drive

home this morning, but I prepaid the hotel and hate to waste $75.

So, I have been hanging out at the hotel, getting some walking in

and will leave early in the morning to head back home. I miss my

kids terribly.

My doctor was wonderful, better than wonderful. He was caring,

considerate and just a great person and fantastic physician. I

showed him a picture of my kids so he would know how careful he has

to be, those little guys depend on me! Then I showed him a picture

of my 6'6 " former left tackle of a husband...just so he would know

who to look out for should anything happen to me! I would do this

again in a heartbeat. It went very, very well.

I will write more when I get back home on Saturday. Thanks for

everyones support!!

Your sister bandster,

Misty

> >

> >

> > You are so right. Feeling hunger these last 9 days has been very

> > humbling for me. I //

>

[Guest guest]

Lesa,

I'm sorry that the coordination of sequenced events has been less than optimum. (in the local vernacular - it "sucks").

Please be assured that when Dr. Dempsey does his operation, whenever that might be, Ed will be in the best of hands, and the bottom line is, that is what is most important.

PS: I have seen both Richter and Dempsey at Temple.

In a message dated 3/21/2007 6:03:11 P.M. Eastern Daylight Time, lesa_myracle@... writes:

Ok, so we're confident Ed's got the best doctor (Richter) and surgeon (Dempsey), but the hospital they work at is TERRIBLE. When he went to have the endoscope and manometry tests done, as scheduled, he gets to the hospital and magically, he's not on their schedule...things that make you go hmmmmm....Then, while we, and Dr. Dempsey, believed the surgery to be set for tomorrow at 0730, magically, once again, it's not on the hospital's schedule.....SO, Ed now has yet another day of this clear liquid diet as the surgery is now scheduled for Friday at noon....who knows what happened....??? Moral of the story is: if you go to Temple, double, triple and quadruple check that the hospital is aware of what's going on....oh yeah, to make matters worse, he went for pre-admissions already, so somebody obviously knew something....someone dropped the ball and it's unfortunate.......

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

I agree Steve, the doctors are going to have to learn

that this is a new day. They are use to playing God,

and what they say goes...no explanation needed.

I too am one who wants to involved in the decisions

for my health care and am stubborn enough to have

it no other way. Not sure if that's good or bad in

my case, but that's the way it is.

Maggie

Alabama

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

So what is it that these doctors have expertise in?

I now go to MN Gastroenterology--which I was told is very good. I

don't know. I've been fighting for months just to get a colonoscopy.

For advanced achalasia, they don't seem to know anything. Just like

ALL the other Mn doctors i've seen. And if they expected me to

decide to get an esophagectomy after just 10 minutes with a surgeon,

who had NO records of my funduplocations or any of all the other

procedures I've had that would make that esophagectomy a worthwhile

endeavor, they are grossly mistaken.

I can be a " pain " as patient. Mainly because I want to be involved

in the decision-making process of the treatment approaches that are

available to me. So many doctors give lip-service to that patient-

participation relationship, yet few rarely, if ever, let their

patients have any meaningful say in THEIR health-care.

Until that issue is addressed, there's no way ANY quality of care

will be received.

>

>

> Lesa,

>

> I'm sorry that the coordination of sequenced events has been

less than

> optimum. (in the local vernacular - it " sucks " ).

>

> Please be assured that when Dr. Dempsey does his operation,

whenever

> that might be, Ed will be in the best of hands, and the bottom

line is, that is

> what is most important.

>

>

>

> PS: I have seen both Richter and Dempsey at Temple.

>

> In a message dated 3/21/2007 6:03:11 P.M. Eastern Daylight Time,

> lesa_myracle@... writes:

>

> Ok, so we're confident Ed's got the best doctor (Richter) and

surgeon

> (Dempsey), but the hospital they work at is TERRIBLE. When he went

to

> have the endoscope and manometry tests done, as scheduled, he gets

to

> the hospital and magically, he's not on their schedule...things

that

> make you go hmmmmm....

>

> Then, while we, and Dr. Dempsey, believed the surgery to be set

for

> tomorrow at 0730, magically, once again, it's not on the

hospital's

> schedule....schedule....<WBR>.SO, Ed now has yet another day of

this c

> as the surgery is now scheduled for Friday at noon....who knows

what

> happened....happened....<WBR>??? Moral of the story is: if you go

to

> triple and quadruple check that the hospital is aware of what's

going

> on....oh yeah, to make matters worse, he went for pre-admissions

> already, so somebody obviously knew something...already, so

somebody

> ball and it's unfortunate.ball a

>

>

>

>

>

>

>

>

> ************************************** AOL now offers free email

to everyone.

> Find out more about what's free from AOL at http://www.aol.com.

>

[Guest guest]

In a message dated 12/16/2007 2:55:14 P.M. Eastern Standard Time,

oldworldtile@... writes:

Find a good DAN practitioner.

This may sound like a silly question, but are DAN practitioners recognized

as Dr's who can make an official diagnoses from the INSURANCE Companies?

Becky

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Find a good DAN practitioner.

>

> Hello Everyone-

>

> My 3 1/2 yr old son has had a huge regression in the last two

days. (he

> woke up Thursday morning with it being physically evident)

>

> We already have an SLP who has diagnosed him with Apraxia,

Oral Motor

> weakness, etc, but we also know that he has Global Apraxia

(of Developmental

> Dyspraxia I guess, depending on where you're located)

>

> We really need to find a LOCAL Expert on Apraxia who is able

to help us with

> the MEDICAL issues that he's facing. We have our private SLP,

a 2nd SLP, OT

> and PT that we're dealing with at Valley CCD, in combination

with a

> Physiatrist, and an Orthopedic Md. We've also been to a

regular neurologist

> (was NOT

> impressed with him AT ALL) and a Neurological Developmental

Pediatrician, but

> it seems that while they're all experts in what they do, they

don't seem to

> know much about APRAXIA, and how his physical issues will be

affected with the

> neurological sometimes.

>

> I have no idea what caused this regression/set-back, but we

definitely feel

> that we need to find a local Apraxia Expert that would be

able to help us out

> with all of this. Bergen or Passaic Counties are ideal, but

County is

> also a possibility if we can't find one in the other counties.

> We have an appt on Monday to see the Orthopedic, but I KNOW

this isn't an

> Ortho issue, his PT knows this, his OT knows it, the

Chiropractor knows this,

> but we just have to find someone that DOES know what they are

doing.

>

> Anyone know where to send me?

>

> Thanks in advance

>

> Becky<~ a mom who's at the end of her rope

>

>

>

> **************************************See AOL's top rated

recipes

> (http://food.aol.com/top-rated-recipes?

NCID=aoltop00030000000004)

>

>

>

[Guest guest]

Someone went to see Podell in Springfield and said he was good.

> >

> > Hello Everyone-

> >

> > My 3 1/2 yr old son has had a huge regression in the last

two

> days. (he

> > woke up Thursday morning with it being physically evident)

> >

> > We already have an SLP who has diagnosed him with Apraxia,

> Oral Motor

> > weakness, etc, but we also know that he has Global Apraxia

> (of Developmental

> > Dyspraxia I guess, depending on where you're located)

> >

> > We really need to find a LOCAL Expert on Apraxia who is

able

> to help us with

> > the MEDICAL issues that he's facing. We have our private

SLP,

> a 2nd SLP, OT

> > and PT that we're dealing with at Valley CCD, in

combination

> with a

> > Physiatrist, and an Orthopedic Md. We've also been to a

> regular neurologist

> > (was NOT

> > impressed with him AT ALL) and a Neurological Developmental

> Pediatrician, but

> > it seems that while they're all experts in what they do,

they

> don't seem to

> > know much about APRAXIA, and how his physical issues will

be

> affected with the

> > neurological sometimes.

> >

> > I have no idea what caused this regression/set-back, but we

> definitely feel

> > that we need to find a local Apraxia Expert that would be

> able to help us out

> > with all of this. Bergen or Passaic Counties are ideal, but

> County is

> > also a possibility if we can't find one in the other

counties.

> > We have an appt on Monday to see the Orthopedic, but I KNOW

> this isn't an

> > Ortho issue, his PT knows this, his OT knows it, the

> Chiropractor knows this,

> > but we just have to find someone that DOES know what they

are

> doing.

> >

> > Anyone know where to send me?

> >

> > Thanks in advance

> >

> > Becky<~ a mom who's at the end of her rope

> >

> >

> >

> > **************************************See AOL's top rated

> recipes

> > (http://food.aol.com/top-rated-recipes?

> NCID=aoltop00030000000004)

> >

> >

> >

[Guest guest]

I agree. When all else fails, (which is usually does) find a good DAN!

[ ] Re: issues

Someone went to see Podell in Springfield and said he was good.

> >

> > Hello Everyone-

> >

> > My 3 1/2 yr old son has had a huge regression in the last

two

> days. (he

> > woke up Thursday morning with it being physically evident)

> >

> > We already have an SLP who has diagnosed him with Apraxia,

> Oral Motor

> > weakness, etc, but we also know that he has Global Apraxia

> (of Developmental

> > Dyspraxia I guess, depending on where you're located)

> >

> > We really need to find a LOCAL Expert on Apraxia who is

able

> to help us with

> > the MEDICAL issues that he's facing. We have our private

SLP,

> a 2nd SLP, OT

> > and PT that we're dealing with at Valley CCD, in

combination

> with a

> > Physiatrist, and an Orthopedic Md. We've also been to a

> regular neurologist

> > (was NOT

> > impressed with him AT ALL) and a Neurological Developmental

> Pediatrician, but

> > it seems that while they're all experts in what they do,

they

> don't seem to

> > know much about APRAXIA, and how his physical issues will

be

> affected with the

> > neurological sometimes.

> >

> > I have no idea what caused this regression/set-back, but we

> definitely feel

> > that we need to find a local Apraxia Expert that would be

> able to help us out

> > with all of this. Bergen or Passaic Counties are ideal, but

> County is

> > also a possibility if we can't find one in the other

counties.

> > We have an appt on Monday to see the Orthopedic, but I KNOW

> this isn't an

> > Ortho issue, his PT knows this, his OT knows it, the

> Chiropractor knows this,

> > but we just have to find someone that DOES know what they

are

> doing.

> >

> > Anyone know where to send me?

> >

> > Thanks in advance

> >

> > Becky<~ a mom who's at the end of her rope

> >

> >

> >

> > **************************************See AOL's top rated

> recipes

> > (http://food. <http://food.aol.com/top-rated-recipes?>

aol.com/top-rated-recipes?

> NCID=aoltop00030000000004)

> >

> >

> >

[Guest guest]

Depends on the DAN. You are looking for an MD or DO. Some take

insurance and some do not. A DAN I do not believe, has any business

diagnosing apraxia, you need a neuro or neurodevelopmental

pediatrician to do that. The value of a DAN is a role similar to the

others in your team, to help with symptom anagement, rule in or out

metal as either a root cause or an aggravator, supervise any dietary

and supplementation. Good DAN will work in conjunction with the rest

of your team.

>

>

> In a message dated 12/16/2007 2:55:14 P.M. Eastern Standard Time,

> oldworldtile@... writes:

>

>

>

>

> Find a good DAN practitioner.

>

>

>

>

>

>

>

>

> This may sound like a silly question, but are DAN practitioners

recognized

> as Dr's who can make an official diagnoses from the INSURANCE

Companies?

>

> Becky

>

>

>

> **************************************See AOL's top rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

>

>

[Guest guest]

Sure - many are MDs or NDs. Some work with insurance companies, some

are just fed up with them and won't even file the paperwork! (aren't

we all?) I haven't heard of people having problems with coverage for

office visits -- but the LABS are another story. The good labs --

Like Great Smokies, Immunosciences, Metametrix tend to not be covered

by insurance. Exception is Blue Cross/Shield --theys seem to cover

more labs.

Here's the link to the list of DAN Drs

http://www.autism.com/dan/danusdis.htm

WARNING -- A Dr makes this list by attending a DAN conference and

allowing his/her name to be included. You have to further " qualify "

them with expert questions or contact a Autism Biomedical group in

your area for references.

>

>

> In a message dated 12/16/2007 2:55:14 P.M. Eastern Standard Time,

> oldworldtile@... writes:

>

>

>

>

> Find a good DAN practitioner.

>

>

>

>

>

>

>

>

> This may sound like a silly question, but are DAN practitioners

recognized

> as Dr's who can make an official diagnoses from the INSURANCE

Companies?

>

> Becky

>

>

>

> **************************************See AOL's top rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

>

>

[Guest guest]

One reassuring thing we have found is that the set-backs are all

reversible, at least in ph.

Causes of set-backs/regressions in my experience:

1. Fish oil gone bad. If old, left out of the fridge, top off the

liquid or heated (ie left in hot closet...even the pills)...the fish

oil oxidizes and is pretty much toxic, depleting your body of

antioxidants (particularly vit E)...to detoxify it.

Start a fresh bottle.

2. Illnesses - simple colds and otherwise benign viruses seem to

induce regression that is temporary. (suspect that like triggering

asthma...the viral illnesses are triggering enough inflammation to

effect the apraxia symptoms).

3. Not getting in or taking the supplements...like when he is sick or

with stomach flu...vomiting and not keeping anything down. No

supplements = regressions in our house. Or if doses were skipped for

some reason (ie babysitter forgot etc).

4. Exposures to allergens - eating the foods he is allergic to. We

have seen this so many times that I am now 100% sure it is a trigger

for neurological symptoms...at least in my boys. In addition to

gluten and milk, ph has a now documented yeast/mold allergy (skin

test positive, confirms his penacillin allergy that we knew about

from an antibiotic reaction too, but also tested positive to baker's

yeast (so no baked goods with yeast or fermented items)...but also

some supplements like selenium, and vit B complex are made from

yeast...so if you have a true yeast allergy...you will react. Lipase

is made from aspergillus (a mold)...again will induce an allergic

reaction in those allergic to aspergillus. Yeast ingestion was the

cause of the regression back in Sept...not only did he have a cold,

but I started baking bread with the new bread-maker that had a gluten-

free cycle. We did not regain the losses until he was started on

nystatin (an antifungal - started for thrush he had from his inhaled

steroid asthma medicines). (But I was continuing to give him bread

and expose him to yeast). The antifungal was not treating " toxic

yeast " as much as it was helping decrease the burden of an allergen

in a truly yeast-allergic child. Unfortunately mold and yeast is

everywhere. But it can be avoided in foods, and that has make a huge

difference.

5. Starting supplements that are made from molds or yeast : lipase,

selenium - induced BAD regressions that I only now understand after

figuring out the yeast allergy, and then investigating the

manufacturing of every supplement he had an adverse reaction to.

6. Weaning his asthma medicines caused regressions. So seems that

the anti-inflammatory effects of Jospeh's asthma medicines were

helping his apraxia. Makes sense if there is an allergic link to the

cascade of inflammation in kids like ph. ph lost significant

amount of speech when we took him off his inhaled steroids...regained

losses and had a huge surge when we started him on singulaire...a

different form of asthma med. Fish oil also has anti-inflammatory

effects. Perhaps this is one way it is helping our kids. Vit E is a

potent antioxidant. At least in our case...the root of the apraxia

keeps pointing back to allergic disease and inflammation of the gut.

In children with multiple food allergies...would make sense that a

casein-gluten free diet would help.

Every child is different...but if there is a regression in an apraxic

child, there is likely an explanation. Have you changed brands of

vitamins/fish oil or vit E? Not all are the same, even if the labels

look like they should be the same. You need to be a detective to

figure it out.

-

> Hello Everyone-

>

> My 3 1/2 yr old son has had a huge regression in the last two

days. (he

> woke up Thursday morning with it being physically evident)

>

> We already have an SLP who has diagnosed him with Apraxia,

Oral Motor

> weakness, etc, but we also know that he has Global Apraxia

(of Developmental

> Dyspraxia I guess, depending on where you're located)

>

> We really need to find a LOCAL Expert on Apraxia who is able

to help us with

> the MEDICAL issues that he's facing. We have our private SLP,

a 2nd SLP, OT

> and PT that we're dealing with at Valley CCD, in combination

with a

> Physiatrist, and an Orthopedic Md. We've also been to a

regular neurologist

> (was NOT

> impressed with him AT ALL) and a Neurological Developmental

Pediatrician, but

> it seems that while they're all experts in what they do, they

don't seem to

> know much about APRAXIA, and how his physical issues will be

affected with the

> neurological sometimes.

>

> I have no idea what caused this regression/set-back, but we

definitely feel

> that we need to find a local Apraxia Expert that would be

able to help us out

> with all of this. Bergen or Passaic Counties are ideal, but

County is

> also a possibility if we can't find one in the other counties.

> We have an appt on Monday to see the Orthopedic, but I KNOW

this isn't an

> Ortho issue, his PT knows this, his OT knows it, the

Chiropractor knows this,

> but we just have to find someone that DOES know what they are

doing.

>

> Anyone know where to send me?

>

> Thanks in advance

>

> Becky<~ a mom who's at the end of her rope

>

>

>

> **************************************See AOL's top rated

recipes

> (http://food.aol.com/top-rated-recipes?

NCID=aoltop00030000000004)

>

>

>

[Guest guest]

Are you folks refrigerating even the capsules?

Interesting about the mold/yeast allerfy. I am allergic to

pennicilin. What do you do for B vitamins with this? Just rely on

veggies?

This is hopeful. Lots of checking to be done in this house.

>

> One reassuring thing we have found is that the set-backs are all

> reversible, at least in ph.

>

> Causes of set-backs/regressions in my experience:

>

> 1. Fish oil gone bad. If old, left out of the fridge, top off the

> liquid or heated (ie left in hot closet...even the pills)...the

fish

> oil oxidizes and is pretty much toxic, depleting your body of

> antioxidants (particularly vit E)...to detoxify it.

>

> Start a fresh bottle.

>

> 2. Illnesses - simple colds and otherwise benign viruses seem to

> induce regression that is temporary. (suspect that like triggering

> asthma...the viral illnesses are triggering enough inflammation to

> effect the apraxia symptoms).

>

> 3. Not getting in or taking the supplements...like when he is sick

or

> with stomach flu...vomiting and not keeping anything down. No

> supplements = regressions in our house. Or if doses were skipped

for

> some reason (ie babysitter forgot etc).

>

> 4. Exposures to allergens - eating the foods he is allergic to. We

> have seen this so many times that I am now 100% sure it is a

trigger

> for neurological symptoms...at least in my boys. In addition to

> gluten and milk, ph has a now documented yeast/mold allergy

(skin

> test positive, confirms his penacillin allergy that we knew about

> from an antibiotic reaction too, but also tested positive to

baker's

> yeast (so no baked goods with yeast or fermented items)...but also

> some supplements like selenium, and vit B complex are made from

> yeast...so if you have a true yeast allergy...you will react.

Lipase

> is made from aspergillus (a mold)...again will induce an allergic

> reaction in those allergic to aspergillus. Yeast ingestion was the

> cause of the regression back in Sept...not only did he have a cold,

> but I started baking bread with the new bread-maker that had a

gluten-

> free cycle. We did not regain the losses until he was started on

> nystatin (an antifungal - started for thrush he had from his

inhaled

> steroid asthma medicines). (But I was continuing to give him bread

> and expose him to yeast). The antifungal was not treating " toxic

> yeast " as much as it was helping decrease the burden of an allergen

> in a truly yeast-allergic child. Unfortunately mold and yeast is

> everywhere. But it can be avoided in foods, and that has make a

huge

> difference.

>

> 5. Starting supplements that are made from molds or yeast : lipase,

> selenium - induced BAD regressions that I only now understand after

> figuring out the yeast allergy, and then investigating the

> manufacturing of every supplement he had an adverse reaction to.

>

> 6. Weaning his asthma medicines caused regressions. So seems that

> the anti-inflammatory effects of Jospeh's asthma medicines were

> helping his apraxia. Makes sense if there is an allergic link to

the

> cascade of inflammation in kids like ph. ph lost

significant

> amount of speech when we took him off his inhaled

steroids...regained

> losses and had a huge surge when we started him on singulaire...a

> different form of asthma med. Fish oil also has anti-inflammatory

> effects. Perhaps this is one way it is helping our kids. Vit E is a

> potent antioxidant. At least in our case...the root of the apraxia

> keeps pointing back to allergic disease and inflammation of the

gut.

> In children with multiple food allergies...would make sense that a

> casein-gluten free diet would help.

>

> Every child is different...but if there is a regression in an

apraxic

> child, there is likely an explanation. Have you changed brands of

> vitamins/fish oil or vit E? Not all are the same, even if the

labels

> look like they should be the same. You need to be a detective to

> figure it out.

>

> -

> > Hello Everyone-

> >

> > My 3 1/2 yr old son has had a huge regression in the last

two

> days. (he

> > woke up Thursday morning with it being physically evident)

> >

> > We already have an SLP who has diagnosed him with Apraxia,

> Oral Motor

> > weakness, etc, but we also know that he has Global Apraxia

> (of Developmental

> > Dyspraxia I guess, depending on where you're located)

> >

> > We really need to find a LOCAL Expert on Apraxia who is

able

> to help us with

> > the MEDICAL issues that he's facing. We have our private

SLP,

> a 2nd SLP, OT

> > and PT that we're dealing with at Valley CCD, in

combination

> with a

> > Physiatrist, and an Orthopedic Md. We've also been to a

> regular neurologist

> > (was NOT

> > impressed with him AT ALL) and a Neurological Developmental

> Pediatrician, but

> > it seems that while they're all experts in what they do,

they

> don't seem to

> > know much about APRAXIA, and how his physical issues will

be

> affected with the

> > neurological sometimes.

> >

> > I have no idea what caused this regression/set-back, but we

> definitely feel

> > that we need to find a local Apraxia Expert that would be

> able to help us out

> > with all of this. Bergen or Passaic Counties are ideal, but

> County is

> > also a possibility if we can't find one in the other

counties.

> > We have an appt on Monday to see the Orthopedic, but I KNOW

> this isn't an

> > Ortho issue, his PT knows this, his OT knows it, the

> Chiropractor knows this,

> > but we just have to find someone that DOES know what they

are

> doing.

> >

> > Anyone know where to send me?

> >

> > Thanks in advance

> >

> > Becky<~ a mom who's at the end of her rope

> >

> >

> >

> > **************************************See AOL's top rated

> recipes

> > (http://food.aol.com/top-rated-recipes?

> NCID=aoltop00030000000004)

> >

> >

> >

[Guest guest]

In a message dated 12/17/2007 12:10:47 P.M. Eastern Standard Time,

claudia.morris@... writes:

One reassuring thing we have found is that the set-backs are all

reversible,

But here's the part that's frustrating to me-- I don't think we can call it

a " set-back " or really even a " regression " because both of those really

would mean that he's Stalled out or has taken a few steps backwards from the

progress he's already made.

Asa's been dealing with orthopedic issues on top of the Apraxia, and he's

always had a very severe in-toeing, but when I say he had a regression-- it's

not quite accurate, because he woke up on Thursday WORSE than he's ever

actually been physically speaking. So it's not as though he's made progress and

then

had a set-back and things stalled out, but rather, he totally WORSENED

overall.

I'm not sure if my wording is making sense, but in a nutshell, he's always

had the in-toeing and has had that " clumsy " walk due to that, but now he's not

only walking that way, but WORSE than he ever was, and his foot is literally

dragging and " lazy " . Almost like you would see with a person who has had a

stroke.

Becky

**************************************See AOL's top rated recipes

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[Guest guest]

My own doctor strongly recommends Coromega because of how it's packaged

(individual foil packets). When I told him that I refused to switch

brands, he said to definitely keep fish oil in the fridge or even the

freezer. I keep the capsules in the freezer, and the kids actually

prefer them that way now. If I take them out and they warm up, the

kids complain that now they are " too squishy " . FYI -- they do not

freeze to rock solid.

in NJ

>

[Guest guest]

I have learned the hard way got some regression mostly sensory with fish oil

that I transported to and from FLA over THanksgiving. Then I rememebered

's post from Sept. when she mentioned bad fish oil. So I threw out

the bottle and got a new one. Back on track. So DONT Forget to keep it in

the frig.

[ ] Re: issues

Are you folks refrigerating even the capsules?

Interesting about the mold/yeast allerfy. I am allergic to

pennicilin. What do you do for B vitamins with this? Just rely on

veggies?

This is hopeful. Lots of checking to be done in this house.

>

> One reassuring thing we have found is that the set-backs are all

> reversible, at least in ph.

>

> Causes of set-backs/regressions in my experience:

>

> 1. Fish oil gone bad. If old, left out of the fridge, top off the

> liquid or heated (ie left in hot closet...even the pills)...the

fish

> oil oxidizes and is pretty much toxic, depleting your body of

> antioxidants (particularly vit E)...to detoxify it.

>

> Start a fresh bottle.

>

> 2. Illnesses - simple colds and otherwise benign viruses seem to

> induce regression that is temporary. (suspect that like triggering

> asthma...the viral illnesses are triggering enough inflammation to

> effect the apraxia symptoms).

>

> 3. Not getting in or taking the supplements...like when he is sick

or

> with stomach flu...vomiting and not keeping anything down. No

> supplements = regressions in our house. Or if doses were skipped

for

> some reason (ie babysitter forgot etc).

>

> 4. Exposures to allergens - eating the foods he is allergic to. We

> have seen this so many times that I am now 100% sure it is a

trigger

> for neurological symptoms...at least in my boys. In addition to

> gluten and milk, ph has a now documented yeast/mold allergy

(skin

> test positive, confirms his penacillin allergy that we knew about

> from an antibiotic reaction too, but also tested positive to

baker's

> yeast (so no baked goods with yeast or fermented items)...but also

> some supplements like selenium, and vit B complex are made from

> yeast...so if you have a true yeast allergy...you will react.

Lipase

> is made from aspergillus (a mold)...again will induce an allergic

> reaction in those allergic to aspergillus. Yeast ingestion was the

> cause of the regression back in Sept...not only did he have a cold,

> but I started baking bread with the new bread-maker that had a

gluten-

> free cycle. We did not regain the losses until he was started on

> nystatin (an antifungal - started for thrush he had from his

inhaled

> steroid asthma medicines). (But I was continuing to give him bread

> and expose him to yeast). The antifungal was not treating " toxic

> yeast " as much as it was helping decrease the burden of an allergen

> in a truly yeast-allergic child. Unfortunately mold and yeast is

> everywhere. But it can be avoided in foods, and that has make a

huge

> difference.

>

> 5. Starting supplements that are made from molds or yeast : lipase,

> selenium - induced BAD regressions that I only now understand after

> figuring out the yeast allergy, and then investigating the

> manufacturing of every supplement he had an adverse reaction to.

>

> 6. Weaning his asthma medicines caused regressions. So seems that

> the anti-inflammatory effects of Jospeh's asthma medicines were

> helping his apraxia. Makes sense if there is an allergic link to

the

> cascade of inflammation in kids like ph. ph lost

significant

> amount of speech when we took him off his inhaled

steroids...regained

> losses and had a huge surge when we started him on singulaire...a

> different form of asthma med. Fish oil also has anti-inflammatory

> effects. Perhaps this is one way it is helping our kids. Vit E is a

> potent antioxidant. At least in our case...the root of the apraxia

> keeps pointing back to allergic disease and inflammation of the

gut.

> In children with multiple food allergies...would make sense that a

> casein-gluten free diet would help.

>

> Every child is different...but if there is a regression in an

apraxic

> child, there is likely an explanation. Have you changed brands of

> vitamins/fish oil or vit E? Not all are the same, even if the

labels

> look like they should be the same. You need to be a detective to

> figure it out.

>

> -

> > Hello Everyone-

> >

> > My 3 1/2 yr old son has had a huge regression in the last

two

> days. (he

> > woke up Thursday morning with it being physically evident)

> >

> > We already have an SLP who has diagnosed him with Apraxia,

> Oral Motor

> > weakness, etc, but we also know that he has Global Apraxia

> (of Developmental

> > Dyspraxia I guess, depending on where you're located)

> >

> > We really need to find a LOCAL Expert on Apraxia who is

able

> to help us with

> > the MEDICAL issues that he's facing. We have our private

SLP,

> a 2nd SLP, OT

> > and PT that we're dealing with at Valley CCD, in

combination

> with a

> > Physiatrist, and an Orthopedic Md. We've also been to a

> regular neurologist

> > (was NOT

> > impressed with him AT ALL) and a Neurological Developmental

> Pediatrician, but

> > it seems that while they're all experts in what they do,

they

> don't seem to

> > know much about APRAXIA, and how his physical issues will

be

> affected with the

> > neurological sometimes.

> >

> > I have no idea what caused this regression/set-back, but we

> definitely feel

> > that we need to find a local Apraxia Expert that would be

> able to help us out

> > with all of this. Bergen or Passaic Counties are ideal, but

> County is

> > also a possibility if we can't find one in the other

counties.

> > We have an appt on Monday to see the Orthopedic, but I KNOW

> this isn't an

> > Ortho issue, his PT knows this, his OT knows it, the

> Chiropractor knows this,

> > but we just have to find someone that DOES know what they

are

> doing.

> >

> > Anyone know where to send me?

> >

> > Thanks in advance

> >

> > Becky<~ a mom who's at the end of her rope

> >

> >

> >

> > **************************************See AOL's top rated

> recipes

> > (http://food. <http://food.aol.com/top-rated-recipes?>

aol.com/top-rated-recipes?

> NCID=aoltop00030000000004)

> >

> >

> >

[Guest guest]

In a message dated 12/17/2007 11:51:51 P.M. Eastern Standard Time,

lizlaw@... writes:

As someone who had intoeing my entire life and at one point had that

foot dragging thing (for over a year)I say this: do not mess around!

Dairy elimination removed these obstacles for me at the ripe old age

of 40. That may or may not be your deal but I definitely think beyond

the ortho you really should talk to a neuro. Plus, has a stroke been

ruled out? We get so used to our kids having things that sometimes

bigger new things can be missed.

Lastly, this is part of apraxia is it not...just because it is not

speech it is a whole disorder.

Well, this is where it DOES get confusing for Asa.

He has an ORTHOPEDIC Disease called Blount's Disease, which is a severe

Bowing of the legs

(thighs) which, of course, will point those toes inward. But it's not a

slight in-toeing, but literally TOE OVER TOE when he walks.

That's always been 1 difficulty that is totally UN-related to the Apraxia.

He had full-leg braces that corrected the bowing, but I believe part of the

problems now is that because he's been walking toe-over-toe for his whole

life, his Neural pathways are trained that way. So even though we've gotten rid

of the **BIGGER** problem orthopedic-wise, there is a slight tibial torsion

resulting, but on TOP of that is the severe in-toeing that I believe is

consequential to the Apraxia and Neural issues. So unfortunately, for *HIM*

there's

no " RIGHT " answer at this point.

This is why I'm so frustrated.

The Apraxia part of it, wouldn't make the actual walking *WORSE* at this

point, unless there's some other issue going on, so we're trying to figure out

what that issue is. Nothing in his diet has changed. Nothing in daily

routine, etc.

When we went into this Apraxia " thing " , I knew it was what it was-- and that

was ok, because we just take it from what it was and it could only get

BETTER from there. But, this time, it's not like that, and it's scaring me a bit

making me wonder what else is out there lurking for him.

Right now this is who we have working with us: (just for THIS issue with him)

~2 Physical Therapists

~Chiropractor

~Regular Pediatrician

~Neural Developmental Pediatrician

~Physiatrist (which is a new one for most people-- she looks at things

Holistically-- Bone and muscle etc together

~2 Pediatric Orthopedic Speacialists

~Orthotics Specialist/Designer

and we have already had a consult with a regular Neurologist as well. (I did

NOT find him helpful at all)

So as you can see-- there's already a lot of people working at this, but I

still can't seem to get any ANSWERS as to what's going on that's newly

developed with him. It's a NEW and WORSENED walk that wasn't like before, so I

know

that there's SOMEthing happening, just don't know WHAT. <sigh>

I definitely know it's related to the Global Apraxia, but I also pray that

it's nothing else.

(the thoughts of a tumor hit me today <sigh> not probable thank GOD, but

it's there in the back of my head)

At the Ortho appt today--of course nothing showed up Orthopedicaly (knew it

wouldn't)

The normal NDP that we see and the Physiatrist, are both un-reachable til

Wed and the other on Fri, and they are the ones I know should be able to help us

a little with this.

I called the same office and spoke to the other NDP there, who someone here

referred me to, and she was going to try to help see him until she found out

that we were going to the Ortho today. I don't get it-- because she HAS to

know it's a Neural issue, and that the Ortho wouldn't be able to help, and she

also knew that the Ortho that we were going to was NOT covered under our

insurance, so it was going to be $200 CASH out of pocket, but still said to go

to him first.

ARrrrgh

I later spoke with the regular Ped, and the first thing he said when I

described how Asa woke up (like his feet were asleep) was that I needed a

Nuero!!

So if HE knows this, why can't the SPECIALISTS know it?

LOL

anyhoo-- it's not declining from this point, so whatever is going on is

something that will just wait til Wed when we can see the other gal.

Becky

**************************************See AOL's top rated recipes

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