New to List

[Guest guest]

----- Original Message -----

From: Carolyn Gullifer

> Hi, Nina. I am new to the group, too. I have scleroderma, sjorgrens,

pulmonary hypertension. I was diagnosis about 5 years ago. I have ulcers on

my fingers and i also had to have the tip of my middle right hand finger cut

off. I am 59 years old, married 40 years this year with 4 children and 5

grandchildren. Does anyone in this group have scleroderma. Carolyn

Thanks for the warm welcome from you and everyone! Scleroderma is one AI I have

missed (so far). I am half Cherokee/Choctaw and I have read there are more

cases of schleroderma in Choctaw women than any other group. So I'm always

waiting for that other shoe to drop.

Nina

[Guest guest]

Whoops. Posted this to the wrong list - I had joined a second RA list and

clicked on the wrong address!

Sorry. I'm not new here .. *LOL*

[Guest guest]

...You did not say what dosage you are on now with your antibiotic??

Martha

[Guest guest]

Lawana welcome. I have gotten behind on here and am getting caught

up. I was wondering if anyone contacted you about web sites you can

research on? If not please write me and I will be glad to help you

with information I have gotten from others on this group. I also have

AIH since '96 and am still going.lol

I hope you have gotten some answers and again welcome

the WV hillbilly

[Guest guest]

ayurvedaonline/message/7269

ayurvedaonline/message/7272

>

> Morning. I am new to the list and wanted to introduce myself.

>

> I was dx with Breast Cancer in April 2006, had a lumpectomy and SNB to

> remove the tumor.

[Guest guest]

--: I too was diagnosis with breast cancer last year 12-05 and

refused a mastectomy with chemo as the first choice by my surgeon. I

have also gone organic and have been using high doses of Vita C IV and

loads of supplements. The mushrooms you are referring to have been

suggested to me and I would go online and do some research and you

will probably find your dosage and location to purchase there. You

have so many options, just remember that not just one thing will do it

for you. I am a prayerful person and trust God to lead me to what I

need to be doing next. Good luck to you, Frann

wrote:

>I am new to the list and wanted to introduce myself.

>I was dx with Breast Cancer in April 2006

>Has anyone tried Maitake mushrooms for your cancer and if you have,

do you think it helped?

>

[Guest guest]

Dear

You have a very extensive answer to your querry by a great ayurvedist

and reference book also at

ayurvedaonline/messages/7275

ayurvedaonline/messages/7276

Dr Bhate

>

> Has anyone tried Maitake mushrooms for your cancer and if you have, do

> you think it helped?

[Guest guest]

Hi Pattie,

I'm sort of new to this list too, but not to apraxia and I can tell you there's

a lot to learn here. You're doing a lot of the right things, keeping an open

mind about therapies and treatments. All neurological dysfunctions in children

especially need to be understood in the larger metabolic context --regardless

of their actual cause--unless a known brain accident has occurred, and even then

you still want to maximize neurological functioning. And that means stepping

outside the box and the " traditional " medical dogmas which refuse to accept the

gut/brain/immune system connection.

Anyway, what I will tell you based on my personal experience with Early Start is

that they offered my severely speech apraxic child way too little and not the

right type of therapy . Sure they suggested a private investigation, but not

until she was about to reach 3 and transition on to the school district. That's

because they would have had to offer the appropriate treatment for apraxia and

preferred not to. Granted it is difficult to properly diagnose apraxia of speech

in a child prior to 3 yrs, but when the delay is so severe, the assumption

should be that it is there and if amazing progress is made then the therapy is

decreased etc.

Ok, long winded answer, but my point is--please be sure your child is getting

speech therapy from a therapist who is well trained in motor planning

techniques. Yes, you can and should ask, it's your right to know and their

obligation to make that clear to you so you can make informed decisions about

your child's treatment. Don't be embarrassed like I was.

Apraxic children make no or very little progress with regular artic methods and

early intervention is critical, everyone agrees on that, but then when it's time

to deliver the services they all try to get out of it by saying the diagnosis is

not certain, etc etc.

I have since learned that my current PROMPT certified therapist who works really

well with my daughter (not all therapists do--PROMPT or no PROMPT) could have

actually treated her prior to age 3 under Early Start had I known enough about

it to request it. I did not know at the time that there were different

techniques of doing speech therapy and what this motor planning was all about.

So just be sure you know more about the qualifications of the current therapist

and if she has motor planning training, especially if your child is not making

adequate progress. PROMPT is only one of the methods, but it is one that has

been known to produce good results in kids who have no clue what to do with

their speech apparatus to produce the right sounds for syllables, words, and

sentances. It has really helped my daughter a LOT and I only wish I had known

about it sooner.

And even if a child ends up not having the diagnosis of speech apraxia later,

what matters is that severe speech disorders should all be treated by

experienced SLPs with good motor planning techniques under their belt. You will

hear a lot of debate about is it really apraxia or not apraxia at this age

especially if other neurological issues are clearly in the mix. It doesn't

matter what else the child has, if the speech deficit is severe, even if it

isn't apraxia as defined now by ASHA, the " big guns " --meaning good, proven motor

planning techniques need to be tried sooner rather than later.

Good luck!

-Elena --mom to Ziana -age 3.8 severely apraxic still but progressing well with

proper therapy and diet/supplements

pslocali <pslocali@...> wrote: hello everyone,

i hope you all had a good start to the week. i have just recently

joined this list as my almost 22 month old daughter is having pretty

severe delays. she has motor planning issues (doesn't wave, clap,

point and doesn't really do any gesturing), walked late, doesn't

speak and has huge spd issues. she has already been tested for

rett's (came out negative), celiac disease, had the xy karyotype

(both normal), and is currently receiving antiviral, antifungal, 1/8

dose of SSRI, super nu thera, udo's oil (for omega 3-6-9), and she

is GF but takes goat's milk. we were gfcf and introduced goat's

milk with out any set backs. she is only receiving an hour of the

following therapies: OT, PT, Speech, early intervention and

behavioral, in addition to do the brushing technique and therapeutic

listening.

anyhow, since apraxia is very new to me (i just saw the

developemental ped today), i was looking for some advice and

support. are there any fun things you all think we could do at home

for the motor planning issues (gesturing)? is there anything you

think we should be including in our protocol? do you think SCD is

something we should consider? have any of you used the interactive

metronome with any success?

i'm sorry for the long winded email and so many questions. i just

don't know where to start and really want to give my daughter the

best possible outcome.

thank you in advance!

pattie

[Guest guest]

Hi Pattie and Elena and welcome! I can tell you guys are new if you

think your messages are long and rambling! The following archive is

super long because I never know what information is most important

and what to cut (which is why I needed Malcolm Nicholl when we wrote

The Late Talker!!)

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

or

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

My parent guide still works (for free)

http://www.contemporarypediatrics.com/contpeds/data/articlestandard/contpeds/492\

\

004/136315/article.pdf

I would also have at least one private " out of pocket " (if possible)

exam with a knowledgeable speech pathologist as well. This SLP can

coordinate with your child's MD, and school therapist and other

professionals, and again be there to assist in a therapeutic plan,

help set goals and oversee your child's development over the years

if needed.

Networking with parents of other speech-impaired children is also

possibly one of the best moves you could make in your child's

recovery. Others will steer you to the " right " professionals and

programs in your area -and you won't feel so alone. I would HIGHLY

recommend joining a whose goal is to unite parents and

professionals. This group

/ is through CHERAB

http://www.cherab.org

The speechville website also has message boards so that you can talk

to other parents on particular topics.

http://www.speech-express.com/boards/

Check your state resources at Speechville to find local support

groups and resources.

http://www.speech-express.com/regional-resources.html

http://www.speech-express.com/communication-station/regional-support-groups.html

(BTW -for anyone who is either running or starting a support group -

due to The Late Talker book and the many who will see your group,

please make sure your info is up at this website and accurate)

For all your other questions including what type of testing -just

read " The Late Talker " . (Nike said 'Just Do It!' -I say 'Just Read

It!') At Amazon.com you can even start today and read sample pages

of the book online!

" The first book to show parents how to tell whether a child has a

speech delay -or a more serious speech disorder

Every parent eagerly awaits the day his or her child will speak for

the fist time. For millions of mothers and fathers, however,

anticipation

turns to anxiety when those initial, all-important words are a long

time

coming. Many worried parents are reassured that their child is " just

a late

talker, " but unfortunately, that is not always the case. Co-author

[Guest guest]

Wow! This is great! Thank you! There is so much great info. I

loved reading about Tanner's progress and only hope my little girl

will follow in his footsteps. She does have severe SI and motor

planning problems, but being that she is receiving quite a bit of

therapy, I'm hopeful she will have a promising future.

Elena, thank you also for your response. I appreciate all the

support. I'm going to check out the links and I am sure I will have a

million more questions for you all.

Thanks again!

Pattie

[Guest guest]

First, thanks to all in this group for just being here. I got saline implants 9

years ago. Within the next year I began getting diagnoses, along with incredible

fatigue, frequent illness and 90 lbs. weight gain. I never even considered it

having a thing to do with the implants. They had healed just fine after surgery.

Only recently I typed in several of my diagnoses (you'd think I was a

collector!) into my search engine. All this info about symptoms after implants

came up!!!!! I'm just floored.

Can anyone here tell me...do some women regain their former cognitive abilities?

My thinking hasbeen foggy for years now. I just thought it was thyroid trouble

(one of my Dx). I've now doubled my weight from what it was at the time of

implants. Does anyone ever regain their ability to lose weight? I may not be one

of those women, but I hope I have a shot at it. This, after EXPLANT of course.

Now I am awaiting explant. I can't get them out too soon! My boobs will look

like a trainwreck (my skin is just that way), but I just don't care. I just want

my health and vitality back. I figure I'll do reps for my chest muscles after

healing from explant, thereby doing my own breast lift.

Please tell me what I should really do after surgery to aid in healing. I read

in our file about colonics. But I wonder if I should talk to my regular doc

about this...or is he likely to push antibiotics??? Opinions welcome, either to

the list or to me by personal email.

Truly,

[Guest guest]

Hi ,

Welcome....I'm so glad you wrote.

I'm sorry to hear of your frequent illnesses and weight gain....can you

tell me what kind of diagnoses you are getting? I can take a guess...

mostly autoimmune in nature, I suspect. For many women, they have many

of the symptoms of autoimmune disease, but never have abnormal

bloodwork, or a definitive diagnosis.

I can answer your question about cognitive abilities coming back. The

answer, from my experience is YES, you can get your thinking clearer

again! I know all about that brain fog, cognitive dysfunction, the

cloudy thinking, the inability to find the right words, the almost drunk

feeling, the sluggishness in the head.....all of that is what I

struggled with when I got sick.

It did not come back right away, and that is the point I want to stress

for anyone getting explanted and hoping to get better. You CAN get

better, but it takes time....sometimes much time.....it takes patience

and tenacity and calm hope. It doesn't happen overnight, but it does

happen little by little, sometimes a few steps forward and a few steps

back. The immune system is a complex thing and it has it's own mind.

It just needs to find its way back to that homeostatic balance it had

before implants were part of the picture.

Weight gain is another story. I know that many women gain weight with

implants and continue to struggle to get it off. Some are successful by

following a strict diet that battles candida and thyroid issues. I

myself have an autoimmune thyroid disease thanks to implants, and I have

struggled with weight gain for the past 3 or 4 years. I have been

explanted for 11 years now.

With a good plastic surgeon, your explant can be very successful,

leaving you both looking good and feeling great about your explant as

well as allowing you to heal IF and this is a very big IF.....you get

explanted CORRECTLY! You must, must, must, discuss getting an explant

that includes a total capsulectomy with drains if possible. If the

capsules are removed along with the implants without cutting into them,

it is called an en bloc removal. If they cut into the capsule, then

remove the implants and then also remove the entire scar capsules that

are in your chest as well, you will have a proper removal.

The basic bottom line goal is that you remove the implants and all of

the tissue that your body has made to surround these foreign objects.

The reason behind this is that the implants shed particles, and there

are silicone degradation products, oils, chemicals, and bacteria and

fungus that will be a part of those capsules from mechanical abrasion of

being inside your moving body. ALL of this must go, so that your immune

system will not continue to react to the presence of any of it.

The things you can do to aid in your healing after explant include

detoxing. Of course, antibiotics are going to be part of the explant

surgery itself, but you will most likely not be given an Rx for

antibiotics to take following the surgery.

Please be aware that most doctors are not knowledgeable about the

healing process in terms of your systemic illnesses following explant.

They just dont' know how to help us get better successfully, mostly

because they rely on drugs, drugs and more drugs. Drugs are toxic to

the body in the long run. The real path required for healing is a drug

free path, using alternative medicine, according to our experiences.

Keep asking questions..we're here to help.

Who is doing your explant?

Patty

--- In , " " <classycaregivers@...>

wrote:

>

> First, thanks to all in this group for just being here. I got saline

implants 9 years ago. Within the next year I began getting diagnoses,

along with incredible fatigue, frequent illness and 90 lbs. weight gain.

I never even considered it having a thing to do with the implants. They

had healed just fine after surgery. Only recently I typed in several of

my diagnoses (you'd think I was a collector!) into my search engine. All

this info about symptoms after implants came up!!!!! I'm just floored.

>

> Can anyone here tell me...do some women regain their former cognitive

abilities? My thinking hasbeen foggy for years now. I just thought it

was thyroid trouble (one of my Dx). I've now doubled my weight from what

it was at the time of implants. Does anyone ever regain their ability to

lose weight? I may not be one of those women, but I hope I have a shot

at it. This, after EXPLANT of course.

>

> Now I am awaiting explant. I can't get them out too soon! My boobs

will look like a trainwreck (my skin is just that way), but I just don't

care. I just want my health and vitality back. I figure I'll do reps for

my chest muscles after healing from explant, thereby doing my own breast

lift.

>

> Please tell me what I should really do after surgery to aid in

healing. I read in our file about colonics. But I wonder if I should

talk to my regular doc about this...or is he likely to push

antibiotics??? Opinions welcome, either to the list or to me by personal

email.

>

> Truly,

>

[Guest guest]

Hi ,

It pains me to hear of all you have been through, without getting the answers

you truly needed to get better.

Thanks for sharing your story. I know most of the women on this group can

relate to the many symptoms you've described. Some are worse than others, but

most of us know what it feels like to be young and yet feel old, to have no

energy, to be unable to function normally or even continue to work. It's a

silent tragedy happening on a huge scale in this world.

I first want to encourage you on your healing. It is definitely possible to get

better. Alot depends on your explant surgery being performed correctly and

hopefully your doctor is telling you the truth and not trying to placate you by

telling you what you want to hear. We've had that happen, and then the woman

finds out after explant that the doctor really didn't do what he said he would

do. There is usually an excuse like it was too hard once he got inside the

chest, there was a problem, etc, etc, etc. So, it all boils down to how much

you trust your doctor to do the right thing.

Are you still on the prednisone? Prednisone is often given to quiet down an

overactive autoimmune response, but long term use of prednisone will result in

the moon face and buffalo hump you describe. Doctors who don't know how to

treat our particular disease process that arises from breast implants typically

just hand out different drugs to put bandaids on all the symptoms. They never

cure the problem from the root cause, and the end result is that you remain ill

and never see any type of improvements at all.

The path to healing includes proper removal of implants, getting off all drugs,

eating a clean, healthy diet of fruits, vegetables and free range meats,

avoiding all junk foods and doing detoxing therapies that will help your body

purge the toxins that have built up in your body. The implants contribute

toward toxicity, but they also slow down other body functions that help remove

toxicity at a normal rate, thus allowing a toxic buildup overall. The liver

gets sluggish, the kidneys can be affected, viruses and fungus build up in the

body, and you just feel poisoned. Hormones get out of whack because the

endocrine system is affected by toxicity, and that beautiful orchestra of

hormonal balance becomes disharmony and everything gets off kilter.

I have autoimmune thyroid disease myself....and it has become evident through

our group that hundreds upon hundreds of women suffer from thyroid issues due to

implants. In fact, my endocrinologist admitted to me that he sees lots of women

with implants.

You've learned some very important lessons through this experience. Sexiness

comes from a healthy body and mind. When we learn to love ourselves the way we

were made and appreciate the health we've been given, the rest takes its

rightful place as " shallow " . Life is not about the size of our boobs, is it?

I am praying that your healing begins as soon as those implants are gone!

It takes many months of healing, sometimes many years of effort to start seeing

the light at the end of the tunnel. The secret is to keep positive about your

efforts and the payoff ahead. Discouragement can come easily when we don't see

progress. But stick to those therapies, try some new ones, and keep turning over

stones on your path to healing. We will be here to help point the way.

God bless,

Patty

> > >

> > > First, thanks to all in this group for just being here. I got saline

> > implants 9 years ago. Within the next year I began getting diagnoses,

> > along with incredible fatigue, frequent illness and 90 lbs. weight gain.

> > I never even considered it having a thing to do with the implants. They

> > had healed just fine after surgery. Only recently I typed in several of

> > my diagnoses (you'd think I was a collector!) into my search engine. All

> > this info about symptoms after implants came up!!!!! I'm just floored.

> > >

> > > Can anyone here tell me...do some women regain their former cognitive

> > abilities? My thinking hasbeen foggy for years now. I just thought it

> > was thyroid trouble (one of my Dx). I've now doubled my weight from what

> > it was at the time of implants. Does anyone ever regain their ability to

> > lose weight? I may not be one of those women, but I hope I have a shot

> > at it. This, after EXPLANT of course.

> > >

> > > Now I am awaiting explant. I can't get them out too soon! My boobs

> > will look like a trainwreck (my skin is just that way), but I just don't

> > care. I just want my health and vitality back. I figure I'll do reps for

> > my chest muscles after healing from explant, thereby doing my own breast

> > lift.

> > >

> > > Please tell me what I should really do after surgery to aid in

> > healing. I read in our file about colonics. But I wonder if I should

> > talk to my regular doc about this...or is he likely to push

> > antibiotics??? Opinions welcome, either to the list or to me by personal

> > email.

> > >

> > > Truly,

> > >

> >

>