? for

[Guest guest]

Hi - sorry to take so long to get back to you...it has been

crazy here. One of our kids is special needs and he has been going

to a medication change - wow! So, patience is really a virtue right

now.

Anyway, to answer your question, I meant that I was answering the

postings on the site - and our bedroom door (where the computer is)

is like one of those revolving doors in a big department store ...

one child after another coming in " mom " " mom " " mom " ... just when

one leaves, another one appears. Sometimes I think that they are

like hangers in the closet - if left unattended for any length of

time, there are more of them!! Or at least it seems that way!

Hope that you are having a great weekend...

in AZ

> Hi ,

> Glad you got moved and are so happy. Things must be going very well

because

> you sound great! Keep it up. I, too, was an only child and so were

both my

> parents and I just have the one boy. I do have the best

stepdaughter in the

> world though. I used to live on a military base and ALWAYS had tons

of kids

> around. I loved every minute of it. Couldn't do it now though

because of the

> darned RA and FMS.

> Finally my question; what is an answering post? Never heard of it.

Sorry to

> babble so but am lonely this morning. Have a great day.

> in NC

[Guest guest]

Hi ,

I've posted these health sites before, but in case you or anyone else

who is interested in nutrition missed it:

http://www.mercola.com/

http://www.garynull.com/

http://drbenkim.com/

http://www.patrickholford.com/content.asp?id_Content=1

('s new book sounds good: " New Optimum nutrition for the Mind " )

http://www.leaflady.org/

All these doctors and nutritionists are very much aware of the drug

cartels' dangers and the importance of nutrition.

www.emofree.com

Is also very interesting regarding the mind/body connection.

I agree, News Target is great.

Steph

> > >

> >

> > , can you give the link to this forun called dangerous drugs?

> >

> > Peggy

>

> http://www.dangerousmedicine.com/index.php

>

> It's also worth looking around the NewsTarget site. Lots of health and

> anti-drugs info.

>

> Best,

> .

>

[Guest guest]

Stepth, thanks for these links. Was aware of Mercola but not the rest;

I've bookmarked them and will have a good look at each. The Leaf Lady

looks like it's really my sort of thing, LOL.

[Guest guest]

You're very welcome .

>

> Stepth, thanks for these links. Was aware of Mercola but not the rest;

> I've bookmarked them and will have a good look at each. The Leaf Lady

> looks like it's really my sort of thing, LOL.

>

>

>

[Guest guest]

Hi ,

 

My daughter was verbal until 32mths of age when she began regressing.....she was

dx with regressive autism.  We do believe autism is correct but also suspect

apraxia, as her brother has that dx.  She is currently 4 years old.

 

Our doctor recommend putting our daughter on Nordic Naturals Pro Omega.....which

we are doing. I am also considering adding some Vitamin E....but am unclear as

to what the status is with Vitamin E......a year ago that was all I read on this

post. 

 

Any info/suggestions you have regarding Vitamin E and Fish Oil are greatly

appreciated. Feel free to e-mail me directly if you have specific questions.  I

so desperately want to hear my daughter speak again.

 

Thank you.

Hildy

[Guest guest]

Hildy I am hearing that more children today are being diagnosed with both autism

and apraxia. The Omega formula your doctor recommended I don't believe is the

correct formula. You want one that is higher in EPA than DHA (both Omega 3)

with a small amount of GLA (the Omega 6) I would NOT recommend starting vitamin

E unless you try the fish oils alone first as they are added to the fish oils

and we had a number of children including mine who regressed dramatically (or

had seizures etc.) on higher levels of vitamin E. Not to say that theory

doesn't hold merit -but there are to many unknowns for us as parents to

experiment with our children based on what appeared to be the higher level of

negative consequences. In fact " WHY?! " when the doctor who was even behind the

whole vitamin E thing had a child that responded remarkably to the ProEFA/ProEPA

mix prior to him ever being on any vitamin E (check the archives -they are all

there)

Here's more on what happened to some on mega vitamin E etc.

/links/Pharma_Omega_Spea\

k_reports_from_group_001224703760/

So as always stick with the basics to start. Below is a huge " new member "

archive which has much information on the fish oils as well:

Below is a new member archive that keeps it simple on what to know to

start.

Re: Hi! New and wondering about apraxia.

Hi Mrs Laurie and welcome!

Your son sounds like he has some oral apraxia which would of course

need to be confirmed by professionals. If oral apraxia is present

together with your child's delay he should at least be diagnosed

as " suspected apraxia " and appropriate therapy should be provided.

He is entitled by federal law to a free and appropriate public

education (FAPE) in the least restrictive environment (LRE) which

means that if 5 days of one on one speech therapy is appropriate for

him then that's what he should receive. What type of speech therapy

is he receiving from the school right now when you say " some " ?

Below is a very long archive to help -please know that you don't have

to understand it all at once -we're here as a group to help!

Thanks for sharing. This group has from the start been a group

that's made up of parents and professionals who care for children

with many types of speech and/or language delays and/or disorders.

There are parents here for example with undiagnosed " late talkers "

and we just have not heard from them in awhile. It's actually a

really good thing when there is a mix of us to share because we all

learn from each other as many diagnoses can overlap -or down the road

we learn that our child does have co diagnosis.

While this group is open to parents of all children with

communication impairments -including hearing impaired, autistic etc.

it wasn't that all that posted recently had a child with autism, or

autism and apraxia -but because of society focus on autism -many here

started following an autism approach -including ABA in some cases!

That's understandable if the much more basic approach to apraxia -ST

and OT and EFAs were tried first and didn't work -but some were

trying that to start.

The overwhelming majority (if you check the archives) have success

with the basic approach to apraxia.

On the other hand- most of us are dealing with more than verbal

apraxia.we just don't know that when our child is 2 -and we learn

through professionals and observations as they continue to grow and

more and more is expected of them. This is also why it's important

to take your child for a neurodevelopmental medical exam when your

child is suspected of apraxia to confirm or rule out other diagnosis

such as sensory integration dysfunction etc. The earlier you know -

the sooner to start appropriate therapies to get them up to speed by

kindergarten.

Don't let it overwhelm you -perhaps we aren't meant to know more

than what we have to know at each stage. We'll be here to help along

the way. It's OK to have any type of emotion when we find out our

child has more than a simple delay -or " more " than " just " verbal

apraxia. And it's OK to be completely overwhelmed and saddened to

find out your child has apraxia. And as I was one of those parents

it's never " just " apraxia when you find out!!!

It's OK to be upset " just " because your child is a " late talker " too!

Please know that I too believed Tanner to just have apraxia and have

my first message posted to a grouplist about that below.but down the

road found out he had a few other things we needed to help him

address. The incredible news is that the majority of our children if

you check history are up to speed to be mainstreamed by kindergarten-

and of course many have learned with communication impaired children

that it's best to start kindergarten at 6 vs. 5 to give them that one

extra year of therapy and developmental time.

If you have questions after reading the following please share them.

This group has always been a wealth of information for all of us, no

matter how long we've been here.

Below is a new member archived message to hopefully answer more of

your questions for now (did you read The Late Talker yet?) For updated

information on fish oils and vitamin E and more - please visit the

links section here

/links

What type of apraxic like speech behaviors are you seeing that makes

you and the SLP suspect your child has apraxia vs. a simple delay in

speech? Is your child talking at all yet? At your child's age -

without speech, it's difficult to diagnose verbal apraxia -they

could " suspect " verbal apraxia and begin treatment just in case,

which wouldn't hurt your child if he ended up just having a simple

delay. Just a few questions before we could provide more accurate

answers:

Does your child have signs of oral apraxia? (for example, can he on

command smile, imitate funny faces, blow bubbles...if you put peanut

butter anywhere around his mouth can he lick it off no matter where

it is?)

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

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

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

Who else evaluated your child? Was it only the SLP through your

town school or was he also in Early Intervention through the state?

(birth to three) Was he evaluated by both a speech pathologist as

well as an occupational therapist? Was/were they knowledgeable

about apraxia? (If your child wasn't diagnosed by an occupational

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " -when silence isn't golden

Not all children with delayed speech are " little Einsteins " or garden

variety " late bloomers. " Some have a speech-language disorder that

will persist unless warning signs are recognized and intervention

comes early. Includes a Guide for Parents. "

Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

http://contemporarypediatrics.modernmedicine.com/radio_peds4

Actual article (where you can read it for free)

http://opsc.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

There are also many activities parents can do at home with their

child to

promote the development of speech. These are detailed in the Guide

for Parents

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=1363\

\

15.

This guide was written by

[Guest guest]

Hi

 

Thank you for getting back to me so quickly......

 

As mentioned our daughter is taking Pro Omega from Nordic Natural, this was

determined based on bloodwork our DAN doctor ran.  Apparently this is the best

fish oil for her?

I did look up some of the other nordic natural products regarding the amount of

EPA/DHA.......I didn't see a huge difference.

 

Pro Omega provides 813mg of EPA,  563mg DHA and Other Omega-3a's 225mg.

 

What product do you recommend and what mg should the EPA/DHA be?  This stuff is

not only super expensive but also yucky!  I really want to make sure I give the

right amount and the right stuff.  Sorry for all these questions, but what

questions do you suggest I ask our doctor regarding what he has recommended?  No

one is perfect, so I do not fault him if he is wrong but I don't want to keep

giving her the wrong stuff.

 

Thanks

Hildy

From: kiddietalk <kiddietalk@...>

Subject: [ ] Re: ? for

Date: Sunday, March 8, 2009, 6:25 PM

Hildy I am hearing that more children today are being diagnosed with both autism

and apraxia. The Omega formula your doctor recommended I don't believe is the

correct formula. You want one that is higher in EPA than DHA (both Omega 3) with

a small amount of GLA (the Omega 6) I would NOT recommend starting vitamin E

unless you try the fish oils alone first as they are added to the fish oils and

we had a number of children including mine who regressed dramatically (or had

seizures etc.) on higher levels of vitamin E. Not to say that theory doesn't

hold merit -but there are to many unknowns for us as parents to experiment with

our children based on what appeared to be the higher level of negative

consequences. In fact " WHY?! " when the doctor who was even behind the whole

vitamin E thing had a child that responded remarkably to the ProEFA/ProEPA mix

prior to him ever being on any vitamin E (check the archives -they are all

there)

Here's more on what happened to some on mega vitamin E etc.

http://health. groups.. com/group/ childrensapraxia net/links/

Pharma_Omega_ Speak_reports_ from_group_ 001224703760/

So as always stick with the basics to start. Below is a huge " new member "

archive which has much information on the fish oils as well:

Below is a new member archive that keeps it simple on what to know to

start.

Re: Hi! New and wondering about apraxia.

Hi Mrs Laurie and welcome!

Your son sounds like he has some oral apraxia which would of course

need to be confirmed by professionals. If oral apraxia is present

together with your child's delay he should at least be diagnosed

as " suspected apraxia " and appropriate therapy should be provided.

He is entitled by federal law to a free and appropriate public

education (FAPE) in the least restrictive environment (LRE) which

means that if 5 days of one on one speech therapy is appropriate for

him then that's what he should receive. What type of speech therapy

is he receiving from the school right now when you say " some " ?

Below is a very long archive to help -please know that you don't have

to understand it all at once -we're here as a group to help!

Thanks for sharing. This group has from the start been a group

that's made up of parents and professionals who care for children

with many types of speech and/or language delays and/or disorders.

There are parents here for example with undiagnosed " late talkers "

and we just have not heard from them in awhile. It's actually a

really good thing when there is a mix of us to share because we all

learn from each other as many diagnoses can overlap -or down the road

we learn that our child does have co diagnosis.

While this group is open to parents of all children with

communication impairments -including hearing impaired, autistic etc.

it wasn't that all that posted recently had a child with autism, or

autism and apraxia -but because of society focus on autism -many here

started following an autism approach -including ABA in some cases!

That's understandable if the much more basic approach to apraxia -ST

and OT and EFAs were tried first and didn't work -but some were

trying that to start.

The overwhelming majority (if you check the archives) have success

with the basic approach to apraxia.

On the other hand- most of us are dealing with more than verbal

apraxia.we just don't know that when our child is 2 -and we learn

through professionals and observations as they continue to grow and

more and more is expected of them. This is also why it's important

to take your child for a neurodevelopmental medical exam when your

child is suspected of apraxia to confirm or rule out other diagnosis

such as sensory integration dysfunction etc. The earlier you know -

the sooner to start appropriate therapies to get them up to speed by

kindergarten.

Don't let it overwhelm you -perhaps we aren't meant to know more

than what we have to know at each stage. We'll be here to help along

the way. It's OK to have any type of emotion when we find out our

child has more than a simple delay -or " more " than " just " verbal

apraxia. And it's OK to be completely overwhelmed and saddened to

find out your child has apraxia. And as I was one of those parents

it's never " just " apraxia when you find out!!!

It's OK to be upset " just " because your child is a " late talker " too!

Please know that I too believed Tanner to just have apraxia and have

my first message posted to a grouplist about that below.but down the

road found out he had a few other things we needed to help him

address. The incredible news is that the majority of our children if

you check history are up to speed to be mainstreamed by kindergarten-

and of course many have learned with communication impaired children

that it's best to start kindergarten at 6 vs. 5 to give them that one

extra year of therapy and developmental time.

If you have questions after reading the following please share them.

This group has always been a wealth of information for all of us, no

matter how long we've been here.

Below is a new member archived message to hopefully answer more of

your questions for now (did you read The Late Talker yet?) For updated

information on fish oils and vitamin E and more - please visit the

links section here

http://health. groups.. com/group/ childrensapraxia net/links

What type of apraxic like speech behaviors are you seeing that makes

you and the SLP suspect your child has apraxia vs. a simple delay in

speech? Is your child talking at all yet? At your child's age -

without speech, it's difficult to diagnose verbal apraxia -they

could " suspect " verbal apraxia and begin treatment just in case,

which wouldn't hurt your child if he ended up just having a simple

delay. Just a few questions before we could provide more accurate

answers:

Does your child have signs of oral apraxia? (for example, can he on

command smile, imitate funny faces, blow bubbles...if you put peanut

butter anywhere around his mouth can he lick it off no matter where

it is?)

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

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

http://www.cherab. org/information/ speechlanguage/ parentfriendlyso

ftsigns.html

Who else evaluated your child? Was it only the SLP through your

town school or was he also in Early Intervention through the state?

(birth to three) Was he evaluated by both a speech pathologist as

well as an occupational therapist? Was/were they knowledgeable

about apraxia? (If your child wasn't diagnosed by an occupational

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " -when silence isn't golden

Not all children with delayed speech are " little Einsteins " or garden

variety " late bloomers. " Some have a speech-language disorder that

will persist unless warning signs are recognized and intervention

comes early. Includes a Guide for Parents. "

Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

http://contemporary pediatrics. modernmedicine. com/radio_ peds4

Actual article (where you can read it for free)

http://opsc. mediwire. com/main/ Default.aspx? P=Content & ArticleID= 132720

There are also many activities parents can do at home with their

child to

promote the development of speech. These are detailed in the Guide

for Parents

http://www.contempo rarypediatrics. com/contpeds/ article/articleD etail.jsp?

id=1363\

15.

This guide was written by

[Guest guest]

Hildy all I can say is don't underestimate the advice you'll get here for free.

Check the archives for how many times I've had people stop the wrong formula

(typically CLO) which they were giving their child with or without the right

formula -and saw surges. We don't know enough about PUFAs and apraxia to know

why one formula works better than another -but what this group has is stronger

than just about any other source out there -previous to the past few months due

to some extreme biomedical posts -uncensored feedback on what formula works and

which don't. For almost all for a decade with thousands the same formula works

time and time again and I just let you know what that is. It is accepted by

most that apraxia is a neurologically based condition -so we need to know what

crosses the blood brain barrier (if anything)which may or may not be accessible

via lipid testing. I can't tell you for sure and neither can anyone on this

planet at this point why one Omega 3/6 formula works another doesn't -but I can

share an archive which may have more to say than I can right now.

My friend Suzanne who was the former VP of CHERAB prior to Cheryl

pursued the testing route for her daughter as what we were all doing

(just giving fish oils that worked) seemed " too simple " She wanted

" facts " ...and in this archive you'll also read Dr. AJ 's opinion on

should you do blood testing prior to starting fish oil (in short -no). All I

can say is if you ever decide to stop the formula that doesn't work for most and

start the one that does -let us know. Others have and I know you'll probably

see success as well. Suzanne did again once she switched back.

Oh and PS there are many neuro MDs that recommend the formula I shared here due

to what they have seen in their practice.

So I'm not saying don't go by what your doctor says -I'm saying you may not have

the right doctor.

And PS to the following -Suzanne no longer attends medical school.

~~~~~~~~~~~~~~start of archive

Re: How do you know how much EFA and EPA to give

Kerri for apraxia the lipid testing last I checked was found to be

50% successful by those neuroMDs I know who 'used' to recommend it

prior to supplementation. Most parents just give their child fish

oil and see what happens -but some wanted to do blood analysis first

to I guess scientifically know what exactly their child needs. In

theory that probably seems like a great idea. Reality and theory

don't always agree and this is an example of that when the correct

formula of EFAs are used.

I'm sure in the other group they just don't know which " fish oil "

formula is better than another. Most people think fish oil is fish

oil, know I used to. Most people who come here from the autism

groups used to have their child on cod liver oil, and don't even

know the difference between cod liver oil and fish oil that's not

from the liver of the fish, no less fish oil formulas that have

Omega 6 added, or higher EPA, etc..

In this group where people have learned before they started their

child the right formula of EFAs from either this group or their

child's MD -just using that right formula has around an 85 to 95%

success rate in areas where there are lots of apraxic children (like

NJ, Ohio, Texas, etc.)

May want to keep an open mind regarding blood testing as the

way to know correct levels of Omegas at least.

(and to date still have not done blood testing on either of my boys)

The following archive may answer why*

*Dr. AJ who I speak of below is now behind

www.durhamtrial.org

From: " kiddietalk " <kiddietalk@...>

Date: Sat May 14, 2005 7:05 am

Subject: Re: Re-adding Pro-EFA kiddietalk

Hi Laurel,

When the MD diagnosed Evan as " Receptive-Expressive Language

Disorder " what methods were used for testing to know there

were " receptive " delays in addition to expressive delays? Does Evan

(on the oils at least) know how to follow 2 and 3 part commands

like " go get your teddy and bring him to me " or " grab your sneakers

and your sweater and hurry to the car or we are going to be late! "

I like to give children the benefit of the doubt and 'not' use the

word " receptive " or " cognitive " delayed -unless you seek second

opinions and know for sure. Those words easily change over the

years -and 'not' for the better. Know if they are correct to use

right from the start -and make sure that only nonverbal testing is

used for verbal disabled children or it's a violation of their civil

rights and can be filed as a complaint with the Office of Civil

Rights.

(Please let me know if any of you are at that point lisa@... )

Laurel once a child is up to two capsules of ProEFA, there are no

reasons I know of not to go back to the two capsules if you stop and

want to start again. Perhaps your child however has special dietary

needs you are following from an MD. Just curious too. Does your

child's MD know that each time he diagnosed your child it differed

depending upon whether he was on the oil therapy? That is what is

always posted here -a child on the oils will no longer present all

the symptoms of his or her diagnosis. Apraxic children for example

no longer fit the classic profile of apraxia....but doesn't mean

they no longer need speech therapy! The oils just help to

accelerate the progress.

One or two capsules of ProEFA (fish and borage oil with a 5/1 ratio

of Omega 3/DHA and EPA, over the Omega 6/GLA) are

considered " extremely conservative dosages of fish oils " by all the

professionals that spoke at the First Apraxia Conference

http://www.cherab.org/news/scientific.html

To give you an idea -one capsule of ProEFA is about equivalent to

the dosage the FDA approved for infant formula.

When we began fish oil therapy through CHERAB, we had hundreds of

members that all knew each other and knew each other's children.

Were there some that did blood analysis and waited to begin EFAs

until after a host of other complicated nutritional supplements were

given to the child? Yes. And in those cases there was a 50%

success rate of the other stuff working. For those of us however

that 'just gave the child fish oils " we had closer to a 90% success

rate.

One exception to this...If EFAs 'don't' work -which is the rare

situation from what we've seen anyway -then perhaps that child needs

other supplements to help digest the essential fatty acids properly.

There's a very old expression " The Proof Is In The Pudding " which I

love. If you try EFAs and they work...then that's all you need to

know unless they don't work, or work well enough.

As I posted once -I was standing next to Suzanne Smolyar who went

the blood analysis route for her 5 year old daughter 'after'

the ProEFA worked for her. Suzanne was talking to Dr. AJ

about her daughter's blood analysis results. I said excuse me to

both and asked " Dr. , if it was your child who is a child

like those of ours in this group with a speech impairment or ADHD or

whatever -and not for research, would you do blood analysis before

you supplemented with fish oil...or...would you just supplement your

child with the fish oils? " She (again) made a face like " you're

kidding, right? " squinting her eyes a bit with a smile and said " I'd

just give him the fish oils. "

Here's just one of many articles about the most recent study on EFAs

that Dr. AJ who spoke at the First Apraxia Conference was

behind

Can fish oil supplements really boost your brain power? Get the

lowdown:

http://www.gm.tv/index.cfm?articleid=14487

And...here's just one archive below as to why I'm not a huge

believer in blood analysis. It obviously has some major flaws due

to the blood brain barrier.

This story again was based on a time when we all knew each other in

person as a large group from mainly 1999 to 2003. When people post

here you don't know what's the reality for the group -you do when

you all know each other in person as a group.

~~~~~~~~~~~start of archive

Unless we understand what is going on in our children and can make

sure there is proper diagnosis/therapies for each -which we don't -

and we understand what all the many various supplements are doing to

help or not help, I'm not a huge believer of blood analysis for

neurological conditions. This is why I choose to stick to those

therapies/treatments/supplements I know are benign. I will add to

that -unless there are medical reasons.

My reasons on the blood analysis stem from EFAs due to another

scientist/mathematician/mom in our group -former CHERAB VP Suzanne

Smolyar who is now attending medical school to study EFAs due to her

daughter 's amazing reactions on EFAs.

" From: Suzanne Smolyar

Date: Wed Mar 21, 2001 2:36 pm

Subject: RE: [ ] progress

Hi Gloria,

I wanted to say that I know exactly how you feel. Last night at the

table, 's brother (Ari 6.8) began to speak while was

trying to say something, so she looked at Ari and said in a loud and

affirmative tone " Shut up Ari, Shut up " . We were so excited and

overjoyed at her using that phrase - we forgot to explain to her

that it was inappropriate to use at the table and to her family

members. We just thought it was golden -just like you did.

Here is some background from one of my previous posts that will tell

you why this is so exciting .

" I am a mother of a beautiful 5-year-old girl, . Since the

time she was about 11 mo old - I had a feeling that something was

wrong with fine motor, gross motor and of course speech. Through

the past 4 years, I have gone to numerous neurologists, best in the

field, I must add. We have gone non-stop to therapy with ,

but the progress was painfully slow. did not speak- making

it nearly impossible for us to communicate with her. Everyday at

night I would kiss , and standing over her head I would

say, " please start talking tomorrow " - subliminal messages - hoping

they'd work.

To no avail, my child was just not talking. Therapy helped, but

progress was limited. I don't want to continue with this sob-story,

as you probably all understand the fear and frustration in parents

and the child as well.

After becoming involved with

[Guest guest]

,

I know that the biologics like Enbrel make you more prone to

infection. But does this include something like a vaginal yeast

infection? I called Enbrel and spoke to a nurse, who read to me what

it says on the information sheet that comes with the Enbrel. Aside

from that, she really couldn't give me a definitive answer, although

she was very nice.

She did ask me questions, so I think that this might be included in

the possible side effects. She also made note of the lot number of the

Enbrel that I have.

I have had these yeast infections before, but this is the worst one

I've ever had, most of them years ago. I bought the OTC stuff and used

it, but on Monday went to my PCP, as it wasn't getting any better. She

prescribed one 150 mg tablet of Diflucan, which I took yesterday.

Today it still doesn't seem any better.

She did take a culture, she said to see if it was a kind resistant to

the usual medications, and should get the results back on Friday. I'm

thinking that it must be resistant, but I wonder what can be done if

it is.

In the meantime, I am in agony.

Any help would be appreciated.

Sue

[Guest guest]

Hi Sue, just chiming in with my yeast $0.02. YIs aren't really " infections " per

se, there isn't a bacteria involved. Rather it's an imbalance of normal vaginal

flora in which there is an overgrowth of naturally occurring yeasts, so it's

more of an imbalance rather than an infection. That said, YIs can be made worse

or more frequent by immune system problems/changes which I could see the Enbrel

playing a role in. However I find that my PCOS is a much bigger problem than RA

in that dept. When my androgens are high I get really uncomfy, so I stay on the

Pill and take metformin at night. For a YI I find Diflucan pretty useless. The

best cream for me is the Terconazole which your doc can order for you. Multiple

docs have told me that Diflucan isn't for everyone, and really, why use a

systemic drug for a regional problem. It also can't hurt to eat more low-sugar

yogurt and even some acidophillus supplements. Kate F

________________________________

From: marysue <marysue@...>

RA < >

Sent: Tuesday, June 16, 2009 9:10:44 PM

Subject: [ ] ? for

,

I know that the biologics like Enbrel make you more prone to

infection. But does this include something like a vaginal yeast

infection? I called Enbrel and spoke to a nurse, who read to me what

it says on the information sheet that comes with the Enbrel. Aside

from that, she really couldn't give me a definitive answer, although

she was very nice.

She did ask me questions, so I think that this might be included in

the possible side effects. She also made note of the lot number of the

Enbrel that I have.

I have had these yeast infections before, but this is the worst one

I've ever had, most of them years ago. I bought the OTC stuff and used

it, but on Monday went to my PCP, as it wasn't getting any better. She

prescribed one 150 mg tablet of Diflucan, which I took yesterday.

Today it still doesn't seem any better.

She did take a culture, she said to see if it was a kind resistant to

the usual medications, and should get the results back on Friday. I'm

thinking that it must be resistant, but I wonder what can be done if

it is.

In the meantime, I am in agony.

Any help would be appreciated.

Sue

[Guest guest]

Thanks for your input, Kate. I am using Monistat still, and it's not

doing any good, either. I am really getting desperate. I've been

swabbing on vinegar, which burns like fire, and tonight I tried baking

soda dissolved in water. I've been taking a sleeping pill at night;

otherwise, I'd get no sleep at all. Even then, I've been waking up

early, unable to go back to sleep.

I already eat yogurt just about every day. Maybe I'll get some

acidophillus and try that.

Sue

On Jun 16, 2009, at 10:17 PM, Fair wrote:

> Hi Sue, just chiming in with my yeast $0.02. YIs aren't really

> " infections " per se, there isn't a bacteria involved. Rather it's

> an imbalance of normal vaginal flora in which there is an overgrowth

> of naturally occurring yeasts, so it's more of an imbalance rather

> than an infection. That said, YIs can be made worse or more

> frequent by immune system problems/changes which I could see the

> Enbrel playing a role in. However I find that my PCOS is a much

> bigger problem than RA in that dept. When my androgens are high I

> get really uncomfy, so I stay on the Pill and take metformin at

> night. For a YI I find Diflucan pretty useless. The best cream for

> me is the Terconazole which your doc can order for you. Multiple

> docs have told me that Diflucan isn't for everyone, and really, why

> use a systemic drug for a regional problem. It also can't hurt to

> eat more low-sugar yogurt and even some acidophillus supplements.

> Kate F

>

[Guest guest]

Poor thing. There is nothing like it and once that tissue gets irritated

sometimes there's nothing that seems to help. Sorry guys, you might want to

avert your eyes or delete now

.. . . try putting some chilled, plain yogurt in a tampon applicator. That is

very soothing. Monistat and Clotrimazole do nothing for me either and I think I

developed a sensitivity to both of them b/c they BURN like nobody's business now

(same thing happened to my poor gfriend who used one of those single-treament

pearls and called me in tears wondering how to get the stuff out of there). The

terconazole is heaven in a tube and I try to keep some on hand at all times. Be

sure to avoid anything harsh on your nether regions, try store brand cetaphil

for cleansing and of course, RUN away from anything latex like a diaphram or

condom (as if that's what you feel like now anyway!). I know it's worse at

night, when I was trying to get pregnant and the PCOS wasn't diagnosed, it

seemed like I had one for MONTHS. The doc put me on 2 rounds of Diflucan before

the PA downstairs from me said that some women just needed the goo. Oh and ask

for the 7 day, rather

than the 3 day course. It's a pain, but you want more days of treament rather

than less. There are other treatments recommended on the internet like a clove

of garlic. It can't hurt, mash it a bit and throw it in with the yogurt. It

will be like a Greek restaurant in there. I joke, but I know it's crummy, feel

better honey, Kate F

________________________________

From: marysue <marysue@...>

Sent: Tuesday, June 16, 2009 9:43:58 PM

Subject: Re: [ ] ? for

Thanks for your input, Kate. I am using Monistat still, and it's not

doing any good, either. I am really getting desperate. I've been

swabbing on vinegar, which burns like fire, and tonight I tried baking

soda dissolved in water. I've been taking a sleeping pill at night;

otherwise, I'd get no sleep at all. Even then, I've been waking up

early, unable to go back to sleep.

I already eat yogurt just about every day. Maybe I'll get some

acidophillus and try that.

Sue

[Guest guest]

Sue-

Are you on prednisone?

*~ Kami ~*

[ ] ? for

,

I know that the biologics like Enbrel make you more prone to

infection. But does this include something like a vaginal yeast

infection? I called Enbrel and spoke to a nurse, who read to me what

it says on the information sheet that comes with the Enbrel. Aside

from that, she really couldn't give me a definitive answer, although

she was very nice.

She did ask me questions, so I think that this might be included in

the possible side effects. She also made note of the lot number of the

Enbrel that I have.

I have had these yeast infections before, but this is the worst one

I've ever had, most of them years ago. I bought the OTC stuff and used

it, but on Monday went to my PCP, as it wasn't getting any better. She

prescribed one 150 mg tablet of Diflucan, which I took yesterday.

Today it still doesn't seem any better.

She did take a culture, she said to see if it was a kind resistant to

the usual medications, and should get the results back on Friday. I'm

thinking that it must be resistant, but I wonder what can be done if

it is.

In the meantime, I am in agony.

Any help would be appreciated.

Sue

[Guest guest]

Oh good point! That can mess up sugar -> yeast!

Sent from my iPhone

On Jun 16, 2009, at 10:05 PM, " ~Kami~ " <kamilleon@...> wrote:

Sue-

Are you on prednisone?

*~ Kami ~*

[ ] ? for

,

I know that the biologics like Enbrel make you more prone to

infection. But does this include something like a vaginal yeast

infection? I called Enbrel and spoke to a nurse, who read to me what

it says on the information sheet that comes with the Enbrel. Aside

from that, she really couldn't give me a definitive answer, although

she was very nice.

She did ask me questions, so I think that this might be included in

the possible side effects. She also made note of the lot number of the

Enbrel that I have.

I have had these yeast infections before, but this is the worst one

I've ever had, most of them years ago. I bought the OTC stuff and used

it, but on Monday went to my PCP, as it wasn't getting any better. She

prescribed one 150 mg tablet of Diflucan, which I took yesterday.

Today it still doesn't seem any better.

She did take a culture, she said to see if it was a kind resistant to

the usual medications, and should get the results back on Friday. I'm

thinking that it must be resistant, but I wonder what can be done if

it is.

In the meantime, I am in agony.

Any help would be appreciated.

Sue

[Guest guest]

No, I'm not.

Sue

On Jun 16, 2009, at 11:05 PM, ~Kami~ wrote:

> Sue-

>

> Are you on prednisone?

>

[Guest guest]

Well, Kate, at least you accomplished something: you got me to laugh

about the whole thing, even though it's not a laughing matter. A Greek

restaurant, indeed.

I have been using the 7-day Monistat, and still have a few days to go.

But it just seems to be getting worse instead of better. Are you

talking about something different? I'll try some cetaphil.

I'm so desperate I'll try anything. I hope they have some plain yogurt

at our dinky little grocery store.

I didn't get a head start on the thing because I had to go out of town

for my sister's husband's funeral. So it did indeed get ahead of me.

Thanks so much for your suggestions.

Sue

On Jun 16, 2009, at 10:52 PM, Fair wrote:

> Poor thing. There is nothing like it and once that tissue gets

> irritated sometimes there's nothing that seems to help. Sorry guys,

> you might want to avert your eyes or delete now

> . . . try putting some chilled, plain yogurt in a tampon

> applicator. That is very soothing. Monistat and Clotrimazole do

> nothing for me either and I think I developed a sensitivity to both

> of them b/c they BURN like nobody's business now (same thing

> happened to my poor gfriend who used one of those single-treament

> pearls and called me in tears wondering how to get the stuff out of

> there). The terconazole is heaven in a tube and I try to keep some

> on hand at all times. Be sure to avoid anything harsh on your

> nether regions, try store brand cetaphil for cleansing and of

> course, RUN away from anything latex like a diaphram or condom (as

> if that's what you feel like now anyway!). I know it's worse at

> night, when I was trying to get pregnant and the PCOS wasn't

> diagnosed, it seemed like I had one for MONTHS. The doc put me on 2

> rounds of Diflucan before the PA downstairs from me said that some

> women just needed the goo. Oh and ask for the 7 day, rather

> than the 3 day course. It's a pain, but you want more days of

> treament rather than less. There are other treatments recommended

> on the internet like a clove of garlic. It can't hurt, mash it a

> bit and throw it in with the yogurt. It will be like a Greek

> restaurant in there. I joke, but I know it's crummy, feel better

> honey, Kate F

>

[Guest guest]

The reason I asked is.... I had chronic yeast infections while on it. Since

going off, it has been better.

I would encourage you to go to a GYN. They are more skilled to deal with this

than a PCP. It could be something directly related to having an autoimmune

disorder.

Hope you feel better soon.

*~ Kami ~*

Re: [ ] ? for

No, I'm not.

Sue

On Jun 16, 2009, at 11:05 PM, ~Kami~ wrote:

> Sue-

>

> Are you on prednisone?

>

[Guest guest]

Yep,

Cetaphil is for washing

Ditch the monistat and ask to try terconaZole

If u have odor have them do a culture for bv, doubt u have it tho

The cold yogurt should help u sleep tonight

Sent from my iPhone

On Jun 16, 2009, at 10:26 PM, marysue <marysue@...> wrote:

Well, Kate, at least you accomplished something: you got me to laugh

about the whole thing, even though it's not a laughing matter. A Greek

restaurant, indeed.

I have been using the 7-day Monistat, and still have a few days to go.

But it just seems to be getting worse instead of better. Are you

talking about something different? I'll try some cetaphil.

I'm so desperate I'll try anything. I hope they have some plain yogurt

at our dinky little grocery store.

I didn't get a head start on the thing because I had to go out of town

for my sister's husband's funeral. So it did indeed get ahead of me.

Thanks so much for your suggestions.

Sue

On Jun 16, 2009, at 10:52 PM, Fair wrote:

> Poor thing. There is nothing like it and once that tissue gets

> irritated sometimes there's nothing that seems to help. Sorry guys,

> you might want to avert your eyes or delete now

> . . . try putting some chilled, plain yogurt in a tampon

> applicator. That is very soothing. Monistat and Clotrimazole do

> nothing for me either and I think I developed a sensitivity to both

> of them b/c they BURN like nobody's business now (same thing

> happened to my poor gfriend who used one of those single-treament

> pearls and called me in tears wondering how to get the stuff out of

> there). The terconazole is heaven in a tube and I try to keep some

> on hand at all times. Be sure to avoid anything harsh on your

> nether regions, try store brand cetaphil for cleansing and of

> course, RUN away from anything latex like a diaphram or condom (as

> if that's what you feel like now anyway!). I know it's worse at

> night, when I was trying to get pregnant and the PCOS wasn't

> diagnosed, it seemed like I had one for MONTHS. The doc put me on 2

> rounds of Diflucan before the PA downstairs from me said that some

> women just needed the goo. Oh and ask for the 7 day, rather

> than the 3 day course. It's a pain, but you want more days of

> treament rather than less. There are other treatments recommended

> on the internet like a clove of garlic. It can't hurt, mash it a

> bit and throw it in with the yogurt. It will be like a Greek

> restaurant in there. I joke, but I know it's crummy, feel better

> honey, Kate F

>

[Guest guest]

Sue,

I am so sorry to hear this!

You could be more susceptible to vaginal candidiasis because you are on

Enbrel, but I'm not sure. I know candidiasis is a possible side

effect/association, but it's not listed specifically as vaginal candidiasis.

I would call back for some help. You can go on like this until Friday.

http://emedicine.medscape.com/article/257141-overview

Not an MD

On Tue, Jun 16, 2009 at 9:10 PM, marysue <marysue@...> wrote:

> ,

>

> I know that the biologics like Enbrel make you more prone to

> infection. But does this include something like a vaginal yeast

> infection? I called Enbrel and spoke to a nurse, who read to me what

> it says on the information sheet that comes with the Enbrel. Aside

> from that, she really couldn't give me a definitive answer, although

> she was very nice.

>

> She did ask me questions, so I think that this might be included in

> the possible side effects. She also made note of the lot number of the

> Enbrel that I have.

>

> I have had these yeast infections before, but this is the worst one

> I've ever had, most of them years ago. I bought the OTC stuff and used

> it, but on Monday went to my PCP, as it wasn't getting any better. She

> prescribed one 150 mg tablet of Diflucan, which I took yesterday.

> Today it still doesn't seem any better.

>

> She did take a culture, she said to see if it was a kind resistant to

> the usual medications, and should get the results back on Friday. I'm

> thinking that it must be resistant, but I wonder what can be done if

> it is.

>

> In the meantime, I am in agony.

>

> Any help would be appreciated.

>

> Sue

>

[Guest guest]

I like the yogurt idea, Kate.

Not an MD

On Tue, Jun 16, 2009 at 10:39 PM, Kate Fair <kalfoley@...> wrote:

> Yep,

> Cetaphil is for washing

> Ditch the monistat and ask to try terconaZole

> If u have odor have them do a culture for bv, doubt u have it tho

> The cold yogurt should help u sleep tonight

>

>

[Guest guest]

oh my, when I was on enbrel I had this every 6 weeks drove me crazy. the first

time ended up at the docs office and he told me after that go get over the

counter cream for it. It helped for a bit but the only way for me to actually

cure from getting it anymore was to stop enbrel. I'm sorry you are getting this

and hope you can cure it soon.

Re: [ ] ? for

Sue,

I am so sorry to hear this!

You could be more susceptible to vaginal candidiasis because you are on

Enbrel, but I'm not sure. I know candidiasis is a possible side

effect/association, but it's not listed specifically as vaginal candidiasis.

I would call back for some help. You can go on like this until Friday.

http://emedicine.medscape.com/article/257141-overview

Not an MD

On Tue, Jun 16, 2009 at 9:10 PM, marysue <marysue@...> wrote:

> ,

>

> I know that the biologics like Enbrel make you more prone to

> infection. But does this include something like a vaginal yeast

> infection? I called Enbrel and spoke to a nurse, who read to me what

> it says on the information sheet that comes with the Enbrel. Aside

> from that, she really couldn't give me a definitive answer, although

> she was very nice.

>

> She did ask me questions, so I think that this might be included in

> the possible side effects. She also made note of the lot number of the

> Enbrel that I have.

>

> I have had these yeast infections before, but this is the worst one

> I've ever had, most of them years ago. I bought the OTC stuff and used

> it, but on Monday went to my PCP, as it wasn't getting any better. She

> prescribed one 150 mg tablet of Diflucan, which I took yesterday.

> Today it still doesn't seem any better.

>

> She did take a culture, she said to see if it was a kind resistant to

> the usual medications, and should get the results back on Friday. I'm

> thinking that it must be resistant, but I wonder what can be done if

> it is.

>

> In the meantime, I am in agony.

>

> Any help would be appreciated.

>

> Sue

>

[Guest guest]

as for the garlic thing try mashing up garlic with a bit of salt and make a

paste out of it then put it on bread and eat it. Be sure to carry lots of mints

with you if you do this, you might end up with people who are close to you

running the other direction. as for monistat not working there are other brands

and other treatments you can try. One thing that does sooth me is a nice hot

bath, no bubbles, nothing in it. Sit back and relax until the water gets too

chilly to sit in and get out. Don't treat it like a regular bath where you

actually clean yourself with soap and water use it as a soak and it should help

some to relieve.

Re: [ ] ? for

Yep,

Cetaphil is for washing

Ditch the monistat and ask to try terconaZole

If u have odor have them do a culture for bv, doubt u have it tho

The cold yogurt should help u sleep tonight

Sent from my iPhone

On Jun 16, 2009, at 10:26 PM, marysue <marysue@...> wrote:

Well, Kate, at least you accomplished something: you got me to laugh

about the whole thing, even though it's not a laughing matter. A Greek

restaurant, indeed.

I have been using the 7-day Monistat, and still have a few days to go.

But it just seems to be getting worse instead of better. Are you

talking about something different? I'll try some cetaphil.

I'm so desperate I'll try anything. I hope they have some plain yogurt

at our dinky little grocery store.

I didn't get a head start on the thing because I had to go out of town

for my sister's husband's funeral. So it did indeed get ahead of me.

Thanks so much for your suggestions.

Sue

On Jun 16, 2009, at 10:52 PM, Fair wrote:

> Poor thing. There is nothing like it and once that tissue gets

> irritated sometimes there's nothing that seems to help. Sorry guys,

> you might want to avert your eyes or delete now

> . . . try putting some chilled, plain yogurt in a tampon

> applicator. That is very soothing. Monistat and Clotrimazole do

> nothing for me either and I think I developed a sensitivity to both

> of them b/c they BURN like nobody's business now (same thing

> happened to my poor gfriend who used one of those single-treament

> pearls and called me in tears wondering how to get the stuff out of

> there). The terconazole is heaven in a tube and I try to keep some

> on hand at all times. Be sure to avoid anything harsh on your

> nether regions, try store brand cetaphil for cleansing and of

> course, RUN away from anything latex like a diaphram or condom (as

> if that's what you feel like now anyway!). I know it's worse at

> night, when I was trying to get pregnant and the PCOS wasn't

> diagnosed, it seemed like I had one for MONTHS. The doc put me on 2

> rounds of Diflucan before the PA downstairs from me said that some

> women just needed the goo. Oh and ask for the 7 day, rather

> than the 3 day course. It's a pain, but you want more days of

> treament rather than less. There are other treatments recommended

> on the internet like a clove of garlic. It can't hurt, mash it a

> bit and throw it in with the yogurt. It will be like a Greek

> restaurant in there. I joke, but I know it's crummy, feel better

> honey, Kate F

>

[Guest guest]

Sue, I have and always have been prone to YI's. When I get one I don't

waste any time getting treatment. I use the 7 day cream (not the 1 or 3 day

cream it doesn't seem to work as well)and a dose or even two of Diflucan. I wish

you luck these fungal infections are pretty tough!! MicheleBB

>

> The reason I asked is.... I had chronic yeast infections while on it. Since

going off, it has been better.

>

> I would encourage you to go to a GYN. They are more skilled to deal with this

than a PCP. It could be something directly related to having an autoimmune

disorder.

>

> Hope you feel better soon.

>

>

> *~ Kami ~*

>

[Guest guest]

I have heard of women putting plain yogurt in the fingers of a latex glove,

freezing it, and using it for a suppository. I worried about potential " freezer

burn " down there (!!!) so just used it as a douche, a good tablespoon mixed in

the water and shaken up real well.

It worked for me.

Jane

>

> > Yep,

> > Cetaphil is for washing

> > Ditch the monistat and ask to try terconaZole

> > If u have odor have them do a culture for bv, doubt u have it tho

> > The cold yogurt should help u sleep tonight

> >

> >

>

>

>

[Guest guest]

Jane,

I like that idea, too.

Not an MD

On Wed, Jun 17, 2009 at 2:04 PM, JANE <janeatregis@...> wrote:

> I have heard of women putting plain yogurt in the fingers of a latex glove,

> freezing it, and using it for a suppository. I worried about potential

> " freezer burn " down there (!!!) so just used it as a douche, a good

> tablespoon mixed in the water and shaken up real well.

> It worked for me.

> Jane