New to list

December 14, 2003

I do not believe there are ever any absolutes in developmental characteristics

of kids on the spectrum or those who have dyspraxia...anyone that tells you

otherwise I would be leary of.

December 15, 2003

Just want to second Tammy's opinion on this ........ dyspraxia not only

seems multi-variable per child but seems to have varying definitions per

county, per state or country too. I have a verbal/oral dyspraxic child

with some fine & some gross motor issues - elsewhere in the world she'd be

described 'global' dyspraxic.

She's now nearly six & in the last 2/3 months I've had semantic/pragmatic

disorder ( an Aspergers trait) thrown into the mix plus CAPD to also

consider. Both vaguely suggested - both not proven nor unproven at time of

writing. I know very well if I lived in another part of the country/ the

world I may well be recieving more definite opinions/ no suggestions at

all/ something else altogether ( and yes I have had autistic traits

discussed with me as well).

All over the place ??? Yeah .....guess so..... but go over past posts in

the archives & you'll read about many kids who've been diagnosed dyspraxic

this & dyspraxic that at one age & then a year later something else & then

ongoing something else again as the years roll on.

I agree - we are in a 'spectrum' that for some kids ( & I speak for mine

specifically here) can have 'shifting sands' feel about it. I feel

sometimes that that dx of PDD vs. Dyspraxia by some medics is muddied by a

child atypical developmental growth anyway especially with OT/PT

improvements. Dyspraxia by it's very nature - I have found- consistently

inconsistent !

I think I have an almost primevil need for a label for all the time cos

I panic that without it I'll never get the appropriate therapy for all her

issues if I don't. But this need is also a Catch -22. A label is also, at

the same time, a box, that will limit the therapies that I need to look into

for her outside the realm of the accepted medical/paediatric establishment.

EFAs is an absolute classic example of this.

At the expense of sounding like a saddo Hippy I've recently been viewing

's issues - or how we're trying to tackle them - like a Rainbow. By

that I mean I know I have to look all around the box & outside it & behind

it and in front of it & pull at the various strands to attempt to unlock

this multi-facted disorder. OT / PT/ ST / sequencing / social / diet. All

mental, physical, psychological & biological approaches have to researched.

No wonder this group list is so active!

Love all

Gin & 5.11 (verb & oral Dysprax + motor + residual dsi)

Barnet, UK

December 16, 2003

Hi, I don't know much about dyspraxia but would like to know more. Would you

kindly offer a description of it please?

Best,

Gin Cameron <homesick@...> wrote: Just want to second Tammy's

opinion on this ........ dyspraxia not only

seems multi-variable per child but seems to have varying definitions per

county, per state or country too. I have a verbal/oral dyspraxic child

with some fine & some gross motor issues - elsewhere in the world she'd be

described 'global' dyspraxic.

She's now nearly six & in the last 2/3 months I've had semantic/pragmatic

disorder ( an Aspergers trait) thrown into the mix plus CAPD to also

consider. Both vaguely suggested - both not proven nor unproven at time of

writing. I know very well if I lived in another part of the country/ the

world I may well be recieving more definite opinions/ no suggestions at

all/ something else altogether ( and yes I have had autistic traits

discussed with me as well).

All over the place ??? Yeah .....guess so..... but go over past posts in

the archives & you'll read about many kids who've been diagnosed dyspraxic

this & dyspraxic that at one age & then a year later something else & then

ongoing something else again as the years roll on.

I agree - we are in a 'spectrum' that for some kids ( & I speak for mine

specifically here) can have 'shifting sands' feel about it. I feel

sometimes that that dx of PDD vs. Dyspraxia by some medics is muddied by a

child atypical developmental growth anyway especially with OT/PT

improvements. Dyspraxia by it's very nature - I have found- consistently

inconsistent !

I think I have an almost primevil need for a label for all the time cos

I panic that without it I'll never get the appropriate therapy for all her

issues if I don't. But this need is also a Catch -22. A label is also, at

the same time, a box, that will limit the therapies that I need to look into

for her outside the realm of the accepted medical/paediatric establishment.

EFAs is an absolute classic example of this.

At the expense of sounding like a saddo Hippy I've recently been viewing

's issues - or how we're trying to tackle them - like a Rainbow. By

that I mean I know I have to look all around the box & outside it & behind

it and in front of it & pull at the various strands to attempt to unlock

this multi-facted disorder. OT / PT/ ST / sequencing / social / diet. All

mental, physical, psychological & biological approaches have to researched.

No wonder this group list is so active!

Love all

Gin & 5.11 (verb & oral Dysprax + motor + residual dsi)

Barnet, UK

December 16, 2003

Hi and welcome!

We all want to know for sure -but since it's a chicken or egg

question - here is an archived answer that tries to answer best we

can to date:

" Children with a phonological disorder make sound substitutions

consistently and, when given auditory and visual cues, are able to

imitate correct sounds or words. Usually, they have normal oral

muscle tone. Children with apraxia and dysarthria are quite

different. It is common, however, to confuse apraxia and dysarthria,

says Dr. , chief of child development at the Chicago

College of Medicine. While experts are able to differentiate between

these two neurological disorders, he says, " These disorders are

poorly understood by physicians and by a lot of speech therapists as

well. " A further complication is the possibility of phonological

disorders, apraxia, and dysarthria occurring together in the same

child. Language disorders may also be present. And the severity of

each may vary. "

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

And for the person that asked about apraxia/dyspraxia. Yes in

theory there is a difference in what the names mean -which sounds

nice in theory -but doesn't work like that in reality which is where

we are all supposed to live (except in Disney) 's definition

and answer was excellent on this. Here is another archive that sums

it up:

" Deborah is right overall -however apraxia/dyspraxia in the US is the

reversible diagnosis -a child can be diagnosed with dyspraxia 'or'

apraxia, and to many professionals in the US it means the same

thing. In fact Tanner's first SLP diagnosis of apraxia was " I believe

Tanner has apraxia -or dyspraxia -they mean the same thing " and when

I asked her to spell that so I could look it up she wrote on a

little yellow stickie paper for me " dyspraxia apraxia "

I read all the " definitions " of apraxia or dyspraxia, including how

one means motor planning problems of the body -but can affect

speech " dyspraxia " and one means motor planning problems of speech

which can affect body movement " apraxia " which sounded the same to

me but I'm not an expert (and the craziness of those who then add

words like " of speech " after and/or " childhood " or " developmental "

in front of apraxia/dyspraxia, which makes it even more confusing

since it implies that once your child grows to become a teenager and

then an adult he will need to keep updating his diagnosis, and that

if it also affects the body you need to say CASAB childhood apraxia

of speech and of body, TASAB teenage apraxia of speech and of body,

and then of course your child's grows old enough for AASAB...well

you get the point!) (update -Look at

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

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

In short to know for sure what the diagnosis means -check with the

person that diagnosed your child and ask them to clarify! Once the

medical communities pick up the diagnosis of apraxia for once this

craziness will end! (and yes we are working hard at trying to make

this a reality!) "

=====

December 16, 2003

Hi , we haven't actually gotten a dx of dyspraxia or apraxia. I asked about

it at speech therapy and was told he does exhibit some of the characteristics

but don't know who actually dx's this. Is it a disorder? Is it treatable?

What are the symptoms/signs? Is there a checklist like autism has that

outlines/defines it?

Best,

kiddietalk@... wrote: Hi and welcome!

We all want to know for sure -but since it's a chicken or egg

question - here is an archived answer that tries to answer best we

can to date:

December 16, 2003

I love this Gin!

" At the expense of sounding like a saddo Hippy I've recently been

viewing 's issues - or how we're trying to tackle them - like a

Rainbow. By that I mean I know I have to look all around the box &

outside it & behind it and in front of it & pull at the various

strands to attempt to unlock this multi-facted disorder. OT / PT/

ST / sequencing / social / diet. All mental, physical, psychological

& biological approaches have to researched. No wonder this group

list is so active! "

I've had many conversations both on and off list about this -and

again...I don't think our kids fit into any one box. I really

believe that 'most' of our kids have something new -or a mutated

version of what was around before. There has been a dramatic rise

in our type of children -so the question is...why?

When I heard about -I didn't just cry for -I cried

because of -and I cried because I'm not sure what is going on

with any of our children and why they have these similar problems,

and why it's not researched and documented.

When I wrote Canaries in the coal mine I put a quote in there about

this " black ooze " that was rising from the soil of a stream in a

park that is now closed. Heard the black ooze still is rising and is

between one and four feet deep, nobody yet that lives in the area

knows for 'sure' what it's from - in a town not far from where we

lived...just one of many areas of Jersey where we had a pocket of

apraxic children.

The ooze was " Concentrations of polychlorinated biphenyls, or PCBs,

phenol, cadmium, chromium and lead " " They're (the substances) all

bad. I wouldn't choose to live there. I wouldn't choose to interact

there if I had a choice, " said Buckley, executive director of

the Environmental and Occupational Health Sciences Institute, part

of Rutgers University and the University of Medicine and Dentistry

in Newark.

" This is not a healthy place for kids to play. There's no doubt

about it, " said Buckley, who recommended examining and monitoring

some children for any effects. "

http://www.thnt.com/thnt/story/0,21282,596491,00.html

" Examining and monitoring our kids " ?!! Try they basically told us

to not put away the kites and balls and " come on down " to play some

more! (read below) They downplayed (and in spite of their lame

attempt to do so -this was never picked up by any large media who

won't be bullied -like Time) by saying the park was " only " closed

due to " high levels of asbestos " ...actually in the new article the

correct phrase is " Chunks of exposed asbestos " 10-12 feet high. The

first article I read -which was pretty much right before we moved -

was about dead birds found in the black ooze and how town officials

said " they didn't believe it (the ooze) was harmful " and I wrote

here " oh yeah it's every day that when a bird is ready to die they

fly around looking for some black ooze to drop dead in "

The town?...is the town we lived 10 minutes from. The town that

just moved from. The town that little grew up in. As

said to me today - " it was all around me " .

Why didn't we know..well when the birds were found dead there were

spin articles like this

" PMK will probably recommend removal of the black substance and

asbestos tiles and other remediation measures, ston told the

Borough Council.

ston gave the council an update yesterday on what his company is

doing and what it has found so far. Among the results:

The black ooze, which so far has mystified environmental officials,

is as shallow as six inches and as deep as four feet in different

parts of the park. An area found to contain " marginally high "

concentrations of polychlorinated biphenyls (PCBs) is an anomaly,

ston said, and does not pose a substantial health hazard.

While they do not know what the black substance is, tests have

determined that it is not hazardous waste.

A large quantity of stacked asbestos tiles extends underground about

10 feet to 12 feet into the park from the banks of the Bound Brook.

The park was closed in mid-July after Spiegel, president of

the Edison Wetlands Association, a nonprofit environmental group,

discovered the asbestos. The federal Environmental Protection Agency

told borough officials about the black substance late last year.

Although tests determined there was no imminent health hazard, the

borough decided to ask PMK Group to investigate and create a cleanup

plan. "

http://www.gsenet.org/library/11gsn/2002/gs020812.php

And even though the ooze is still there -are they warning any

parents today? Well let's just check more recent articles from the

area and see what they have to say:

" It's a clean, safe community that offers them everything that young

families need, " says English, a lifelong resident who has been

director for four years. " It's one of the reasons why people stay

here. "

The parks vary in size, from Willow Skate Park, the smallest at 2.18

acres, to Veterans Park, the largest with more than 30 acres.

But Veterans has been closed since last summer after officials began

investigating the discovery of asbestos tiles and a mysterious black

ooze surfacing at the park.

Borough officials, who have submitted a cleanup plan to the state

Department of Environmental Protection for its approval, hope to

open the park by the end of spring.

Because Veterans Park has the largest ball field, English had to

reduce the number of adult male teams in the softball league last

year, a popular activity among residents, he says.

But removing possibly hazardous materials is not the only work being

done at borough parks.

Putnam Park is the midst of a complete renovation, with the first

phase of the project to be completed by March.

The project will be adding a jogging path, off-site parking and a

volleyball court, English says. "

http://www.c-n.com/c-n/artman/publish/article_64.shtml

" clean, safe community " in one line and " mysterious black ooze " in

the next. (spin way to say " " Concentrations of polychlorinated

biphenyls, or PCBs, phenol, cadmium, chromium and lead rising out of

the water for some unknown reason and killing local wildlife " )

The way it's written now it's " ooohhh -let's pack a lunch and take

the kids to see the " mysterious black ooze "

Well pretty soon you will be able to do just this!

" In 60 days, our park will be reopened, our children will be back

playing, " Mayor Dan Gallagher said after the borough got $250,000

from the state Department of Environmental Protection last month. "

Oh -and the " not toxic " part they tried to tell us when they lied, I

mean spinned... "

" Used as a coolant in electrical equipment, PCBs have been linked to

cancer and developmental disabilities. Cornell-Dubilier, a former

electronics plant, has the highest concentrations of PCBs of any

site in New Jersey, according to state and federal environmental

officials.

While PCBs usually are immobile in soil, those at Cornell-Dubilier

have been dissolved by other chemicals dumped there and are

pervasive in soil, groundwater and dust. "

http://sierraactivist.org/article.php?sid=33550

One of the substances found in the oozing toxins was phenol. In

medicine -they use a phenol block to basically create an apraxic

situation -a motor planning block that strips the myelin. EFAs have

remyelinating properties...is this one possible reason why they

work? Since the mixture of chemicals changed the PCBs...it's

logical to ask -what did the mixture do to the lead, or phenol...or

the other toxins? (don't put turtles down the sewer in Jersey to

try to make Ninja Turtles -that is just a cartoon)

I'm not writing this to scare anyone...just be aware that there

could be more than meets the eye not just in diagnosis -but for

cause -and treatment. Watch for spin -and research. There is a

rise in our kids -and we don't know why -and nobody knows for sure.

We have found as a group that like Gin said -multisensory works -out

of the box works. (and starting 'most' of our kids in kindergarten

at 6)

Toxins do change the body -and our kids may present as having this

diagnosis or that...but years ago I bet they didn't have the exact

mixture of toxins -and the amount -they have today.

This is why I hope that the diagnosis for is wrong -just like

some have been wrong for other points I've raised in the past. I'm

not looking to be a rebel to disagree -I just see things different

at times and as an inventor my mind just goes.

And I hope now you all know why hearing about poor little

...one child...is praying for one child that could represent

hundreds more. It's for all the canaries in the coal mine - our

children who don't have a voice for themselves.

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

And the way the

local press took a spin angle -makes you wonder who's behind the

cover up. One of my MD friends doesn't like when I write this

stuff -is afraid someone will try to shut me up. But all of you

know now too.

=====

December 16, 2003

Hi ,

Boy " New to the List " as a subject covers just about everything!

Have you read The Late Talker?

If not there are a number of sites you could explore -CHERAB,

Speechville -and just the other day from the group posted this

link

http://www.superduperinc.com/newsletters/50-dev.ApraxSpeech.pdf

And just because I have to get to bed early tonight because I have

to be at the school for the cookie event for all the cookies I baked

by 7 AM (I am morning person, I am morning person, I am morning

person...nope doesn't work -I hate the alarm)

Anyway -here is an archive:

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)

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

December 17, 2003

Thanks for the phonological disorder vs the apraxia

differences. I am now almost convinced that never had

apraxia. I think she just had/has a phonological disorder. Her

mistakes were/are always consistent. She never says things

differently. She still doesn't have her " r " , but she always says it

the wrong way. has never had any other problems.

on the other hand is still soooooo inconsistent (but much

better than she was). also has other motor planning issues in

other parts of her body.

When I read the differences I just said: Oh that sounds just like

and that sounds just like . It is so obvious when I look

at the two of them.

Having identical twins with speech problems is interesting.

I'm going to start looking into going back to school to become a

speech therapist in the spring. I figure I have a good head start

over most other college students. Thanks to this group, I also

have all sorts of ideas for a thesis (the affects of alternative

treatments on speech apraxia, non-verbal testing, apraxia vs

phonological disorder).

August 11, 2004

Welcome to the list, Marina. Many kids do have adjustment periods to

antivirals of up to 21 days. Symptoms people have reported range from lethargy,

abdominal discomfort and other viral-like illnesses, emotional mood

swings/tantrums, cloudy headedness, increased motor problems, increased stimming

along with

other temporary worsening of symptoms. It's usually a good sign that you're

hitting something if you see these. However, if they last longer, then Dr. G

might switch a child to another antiviral. When my son originally started

Valtrex, he showed improvement but some hyperness and mouthy behaviors lasted

longer than 21 days. Dr. G switched him to Famvir and the improvements grew,

while the negatives disappeared. About a year later, he switched back to

Valtrex

and only had improvements, with none of the earlier negatives.

Most supplements typically used with autistic children are eliminated with

the protocol. Dr. G is ok with a few specific ones being left in on a case

by case basis if the child doesn't seem to be negatively reacting to them

(allergy/intolerance). He also recommends a few in some cases (a low-dose

multivitamin, a specific protien supplement). His opinion is that the kids

often

negatively react to many of the supplements, which stresses the immune system,

making it harder to " cool it down " so it can work against various pathogens.

He's also concerned about possible negative effects from high-dose supplements.

Gaylen

August 11, 2004

I have read other parents say that their children did

have die off from antivirals for even up to 2 weeks.

These reactions could include behavior changes, along

with fever and malaise--flutype symptoms. My kids

never had such symptoms. Barb

--- Marina Siddoway <tsidd@...> wrote:

> Hello!

> I am new here, though not new to autism. My

> daughter is , 13

> yrs. old, and has been autistic

> from birth, though not diagnosed ‘til she was almost

> 2.5 yrs. at my

> insistence. I had EBV the year

> before she was conceived, though I was feeling

> really good when we

> decided to go ahead and have

> another baby. I had some dental work done, (a tooth

> cracked and broke

> off) during the pregnancy,

> and I also had all my amalgam filling taken out when

> she was still

> breastfeeding, so I have always felt

> mercury was part of her problem. She had tons of

> fevers during her

> first year of life, almost every other

> week, and some ear infections, which never responded

> to antibiotics,

> though we didn’t do lots of antibiotics,

> thank goodness. My “gut” told me antibiotics were

> not the answer for

> her.

>

> I also always questioned a possible connection to my

> EBV, but couldn’t

> get a doctor to do any testing,

> their belief being that it wouldn’t make any

> difference if she had been

> exposed. Finally, we have a

> DAN doc who did the Immunosciences Labs Autism

> Premier panel of tests

> done. Her titers to Varicella,

> Herpes 2, EBV and CMV were all high, especially EBV

> and CMV. But not

> HVV-6 (?). Also, the IgG

> counts were normal for all of these. (I think it

> was IgG.)

>

> Currently, I am unable to take her to Tarzana. We

> have two other

> special needs children who I cannot

> leave for very long. We are also broke, on the

> verge of bankruptcy.

> I am hoping to glean enough information to work with

> my DAN doc to put

> together a protocol that will

> help .

>

> We started her on Valtrex last week, half dose (250

> mgs.) and she seemed

> to react terribly to it, but

> after only three doses, I stopped, and the bad

> self-injurious behaviors

> are continuing, so I feel it is

> something else, not the Valtrex, that is causing

> this. She is on

> supplements, and I removed them

> because of an ongoing child abuse case against me

> (because of her

> restrictive diet and her supplements)

> and I believe that the loss of her supplements has

> caused the decline.

>

> Does going on anti-virals cause bad reactions, like

> yeast die-off? What

> types of reactions do you see,

> besides fever and general malaise?

>

> Are supplements NOT a part of the protocol?

>

> I read through the diet last night, and am

> struggling with the concept

> that more processed is better,though

> I understand the basis for it, just such a great

> paradigm shift for me.

> I will have many, many questions. Please bear with

> me. This is my last

> hurrah! for my daughter. Her

> behaviors as so terrible that she will need to be

> institutionalized if

> we can’t get her turned around somewhat.

> As it is, this child abuse case may be enough for me

> to lose her and I

> won’t get the chance to address

> her viral issues. What a heartbreak. She is such a

> huge joy (as well

> as pain) for us, I cannot imagine life

> without her.

>

> Marina

>

> ---

> Outgoing mail is certified Virus Free.

> Checked by AVG anti-virus system

> (http://www.grisoft.com).

> Version: 6.0.735 / Virus Database: 489 - Release

> Date: 8/6/2004

>

> [Non-text portions of this message have been

> removed]

>

December 4, 2006

Hi Everyone,

I am new to this list but not new to RA...I was diagnosed 18 years ago with RA

and Sjogren's Syndrome. In the early years I struggled, tried different meds and

didn't have much luck. I would go into remissions eventually and have lived

fairly well, with too many major upheavals due to the RA/SS until just recently.

I work in a medical office, the front desk, and due to that fact was told I

should have a flu shot to keep from getting sick. I did and I believe that

opened the door to lowering my resistance and I ended up contracting some awful

bacterial infection that triggered the worst " flare " I have ever known. My body

was very, very angry. I had pain and swelling in my joints, tissue and was told

even my blood vessels and cells. My head felt as if it would explode. I missed

two weeks of work and only could return because I had access to my PCP at work

who was able to administer pain meds via injection a couple times that first

week back. My ankles were triple their normal size and I could barely walk. It

took a long course of antibiotics and I am now back on prednisone. My labs are a

bit of a mess too. My doctor encourages me to follow up with the rheumatologist

that I saw about 9 months ago that I was not happy with. He just doesn't listen.

It is hard to change providers in this town and I have been told that I cannot

see any other doctor in that Arthritis Group. Sometimes specialists suck, they

are so bloody arrogant. I am sticking with my PCP for now. So, what has been

proposed is DMARDs. Arava is the one she wants me to try. I am unconvinced that

I want to take this route. I have always had issues with meds and am curious,

have any of you tried alternative treatments?

As afraid as I am about the permanent damage of my flares, I just am unconviced

the risks of some of these meds are worth it. What are the feelings of this

group if I might ask?

Oh, BTW, I have only had one positve Rheumatoid factor or other RA test and

since have been sero-negative.

Blessings,

We are not human beings having a spiritual experience, we are spiritual beings

having a human experience.

-

March 27, 2009

Thanks Patty.

Dr. Ansari in Indiana is doing the surgery. I'm glad I told him I want the

complete capsulectomy, because he assumed I did not want. When I told him that,

he corrected me and told me that would not be necessary. When I repeated my wish

for this he stated that he would do whatever I wanted. The price he quoted me

did include this, so I feel that he will follow through.

Let's see...diagnoses...first thing I noticed about 6 months after implants was

extreme pain in my right foot. Went to doc, he called it tendinitis in my

achilles heel. Shortly after, vaginitis. Then came the depression, insomnia and

chronic fatigue syndrome. Meanwhile, I started putting on a lot of weight, 9-11

lbs a month, gaining 90 lbs in 9 months!!! Doc tested my tsh several times

before lab value showed low thyroid. No changes in diet, and I had always been

thin and very healthy. Gave me Synthroid. Tiredness continued, as did my

newfound propensity to get every flu bug and upper respiratory infection that

came my way. I started have intermittent allergic reactions without knowing why.

Started getting pimples on my upper arms after exposure to sunlight. At one

point my abdomen swelled up so much and became so painful that I couldn't roll

over in bed. Doc diagnosed me with IBS. I didn't even have any bowel sounds when

he listened through the stethescope. This was all within a couple year's time.

Then on December 4,2004, I got a migraine headache and went home from work

early. That migraine would last for several weeks. Finally, Prednisone treatment

knocked it out. As soon as it left my system the migraine was back. I was not a

functioning adult, yet I had a fulltime job and I started really struggling just

to get through the days. The doctor prescribed Inderal to prevent constant

migraines. Until recently I was on 120mg daily.

Back in December I went blind in my left eye. This, after 3 weeks of blotchy

vision in that eye that just eventually wiped out the whole field of vision. Doc

diagnosed this as an eye migraine. Raised Inderal to 160mg daily. I've noticed a

lot of my pain stems from an area just to the left of my occipitol point.

Sometimes just rubbing it with a brush triggers this pain.

Now I am almost doubled in weight from the time of implants. In the past few

years I've noticed swelling under my chin and my face is huge and round. Before,

I always had a rather long face. I don't even know what's happening to me. None

of this ever indicated a problem with my implants. Oh, back when doc diagnosed

my with low thyroid he said I had " a little autoimmune " .

I feel like a hypocondriac, like I'm always running late, extremely

forgetful...I hold back from making commitments to be someplace because I

usually can't make it either due to fatigue or migraine. I work and nowadays I

have to come home for a nap in the middle of the day, then return to work. I

sweat PROFUSELY, especially in my scalp, yet my toes are so cold that they

actually hurt. I have felt utterly ruined. Until I found out what saline

implants could be the culprit. The timeline completely adds up. Now, although I

am scared, I feel there's hope for me. There's some online conversations about

psychological trouble about body image after explant. I cannot relate to that.

At this point being flat chested doesn't bother me as much as the buffalo hump

at the back of my neck, my huge pan face and chin and being fat. True, some men

think large breasts are sexy. But I've learned from this that what MY husband

thinks is sexy is being energetic and healthy. Even better, I now know that's

what *I* think is sexy.

Anyway, it feels good to get this " off my chest " -- no pun intended! LOL!!

Truly,

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

>

> Patty

>

> 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,

> >

>

March 30, 2009

Hi ,

I had saline implants four years ago and I had them removed within six months

because I got sick right away, and brain fog was one of my main problems. For

me, getting better took a little time, but after six months I started noticing

improvements and over the last three years have noticed gradual improvement. I

already had a weak immune system so I knew it would take me a while to bounce

back. However, I've been able to work and attend college part time (on the

Deans List). I tried not to put too much pressure on myself to get well

immediately, because I think that just causes too much anxiety. I just wanted

the implants out and I was patient with my body to heal in it's own time. My

body has always been very sensitive to supplements, so I wasn't able to do any

real detoxing, but I try to eat a balanced diet and exercise. I am able to take

a probiotic every day and that helps quite a bit.

Sis

>

> 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,

>

March 30, 2009