New to Group

[Guest guest]

Hi, and welcome to the group! You'll find great RA information courtesy of

our moderators, and a. And as a bonus you'll meet some of the most

wonderful friends around. Anytime you're flaring or having a tough day of

any sort, you can vent here and we can all relate.

Love and hugs,

Carol

[ ] New to group

My name is and I am a 29 year old who has recently been

diagnosed with RA. I have had on going and various levels of pain

for 2 years now. I was repeatedly told that I did not have RA and I

became more and more frustrated with drs. After a year of foot and

leg pain...the pain disappeared for almost a year to return these

past 6 months in my hands and arms.

The pain is excruciating and to top it off I am a full-time student

with no health insurance. I am graduating college this December and

I am managing my classes while trying to manage the pain of everyday

activities.

I am looking for information that anyone may be able to offer on non-

traditional treatments or on RA studies in the Dallas/Fort Worth

area. Thank you in advance for the support and help that I know you

are going to be able to offer.

My thoughts are with everyone.

: )

[Guest guest]

Hi ,

Welcome to the group. Have you tried Reiki therapy. Some places that offer

massage therapy also offer this type of energy transfer treatments. I have

had it a couple of times and it was effective with pain. Problem is that

most insurances don't cover it even if they have heard of it. Just a

thought.

Love and Hugs

Stacey

[Guest guest]

Welcome, Carolyn. I will surely keep you in my prayers. You have found

a wonderful place with the most dear people. I'm glad you've found, but

so sorry you had a reason to.

With Love & Hope...

Tess in NW Oregon

[Guest guest]

Carolyn,

I may be alone in this, but yes, there are times (except for all of the drugs I

take) that I feel perfectly normal, of course then I get a reality check

occassionally. I started to feel normal a few weeks after I was put on all my

meds. The pain was almost non-existent, I could wear rings, I could get up off

the floor in less than 10 minutes (getting on the floor took less time) and I

was sleeping almost all night. I lead an active life. I work 40+ hours a week,

go to school part/full time and raise my daughter.

That lost, helpless feeling, we all have it. I guess it's just how we deal with

it that matters. Sometimes I just go with it and have a private pity party

(just me and God), other times, I count my blessings, say my prayers and press

on with life.

Just know, you're not in this alone. The one thing about this site, is that

it's quite probable that someone has been through the same things you have and

understands how you are feeling. I think that knowledge really helps.

Welcome to the group.

[ ] New to Group

Hi everyone,

I have been reading the postings to the group for a couple of days

to try and get a feel for what a group like this is all about. I am

very impressed with the information, compassion, and understanding

that are displayed.

I awoke about 3 months ago with hands and feet terribly swollen and

painful to move. I called my internal medicine doctor and got an

appointment the next week. That was a long week. Does everyone have

problems with their doctors being so busy that it takes a while to

get an appointment? I took aspirin and an antihistamine til then.

I was put on prednisone at that appointment and referred to a RA

specialist. Their office had no appointments for 4 months. I

returned to my int. med. a month later and she said 4 months not

acceptable and got me in 3 wks later and took me off the prednisone

and on ibuprofen in huge doses. I have not tested positive for RA

yet but feel sure that is just a technicality. The Rheumatologist

put me on celebrex for 2 months, which helped me a little but still

tremendous trouble with feet stiffness and pain. Now on

methotrexate and celebrex. I do not know what to expect with this

disease. Does anyone ever feel normal again?? There is such a

horribly lost feeling that exists right now. It is like being in a

dark room and feeling one's way around, not knowing what one will

bump into next. I gather from all the postings, that there is much

worse yet to come. Can anyone post a chronology of how their

disease progressed?

I have always been very active physically and through many hardships

found the courage to face most difficulties with lots of hard work

and prayer but am finding I can't use hard work this time to help me.

This fear of the unknown is hard to handle.

Has anyone taken a poll of what has caused people to have " flares " ?

Have any questionaires addressed the environmental (ie. foods,

pesticides, insecticides, etc) encounters prior to the disease?

I have no family hx anywhere so just wonder if precipitating factors

are being researched by any group or foundation.

I usually have intense itching in feet and hands, and sometimes

total body as the pain starts. Is this experienced by anyone else?

My doctor didn't connect that with anything.

I hope with time I will get to know each of you in the group. There

are a lot of names that I need to put with circumstances but hope to

start a small journal to identify each of you. My heart goes out to

each as I read the posts. My prayers have already increased by

leaps and bounds.

Hugs to each,

Carolyn in KY

[Guest guest]

Hi, Carolyn,

Yes, I am also a new member who is quite impressed with this group.

Knowing that there is someone else who knows the frustrations of finding out

about the disorder in the first place helped me to be less upset with my

doctor for not figuring it all out sooner.

On the other hand, like you, I am running into the frustration of

not being able to get in to see my doctor when I need to see him. I plan to

have a talk with him about that tomorrow. There is no point in talking to

the front office staff -- none of them " gets it " .

I am taking Celebrex at the maximum dose and have done pretty well

with it. I should add that I am also dealing with Osteoarthritis in the

most painful joints, so I do not rely only on the knee pain to tell me which

one is acting up. If I have pain and feel the fatigue, general all-over

" sick " feeling, then it is probably RA. If I have that lovely pink

" butterfly " across my face, then it is the Lupus. ly, I don't care

which one it is. I want relief and I want it badly.

The itching you described could be Peripheral Neuropathy, but the

doctor will have to determine if that is it or not.

With me, the pain can start anywhere at all, but I notice it first

in my knees, ankles, hands, feet, and shoulders. Typically, my shoulders do

not get really sore -- only with movement. Moving slower helps with that,

but there is little to nothing that really helps with the pain in the legs,

ankles, and feet. My hands will generally be okay so long as I move the

fingers and loosen the wrists before trying to do any kind of gripping,

pulling, or such.

Flares, so far as I can tell, just occur whenever they occur. There

is some mention of stress or sun exposure flaring Lupus SLE, but I do not

think that a true connection has been made. However, I tend to agree with

the theory, as I have had flares after being in the sun too long or too

often. Oddly enough, I live in the desert southwest. Duh?

Dianne

> ----- Original Message -----

> From: Wri44

>

> Hi everyone,

>

> I have been reading the postings to the group for a couple of days

> to try and get a feel for what a group like this is all about. I am

> very impressed with the information, compassion, and understanding

> that are displayed.

>

> I awoke about 3 months ago with hands and feet terribly swollen and

> painful to move. I called my internal medicine doctor and got an

> appointment the next week. That was a long week. Does everyone have

> problems with their doctors being so busy that it takes a while to

> get an appointment? I took aspirin and an antihistamine til then.

> I was put on prednisone at that appointment and referred to a RA

> specialist. Their office had no appointments for 4 months. I

> returned to my int. med. a month later and she said 4 months not

> acceptable and got me in 3 wks later and took me off the prednisone

> and on ibuprofen in huge doses. I have not tested positive for RA

> yet but feel sure that is just a technicality. The Rheumatologist

> put me on celebrex for 2 months, which helped me a little but still

> tremendous trouble with feet stiffness and pain. Now on

> methotrexate and celebrex. I do not know what to expect with this

> disease. Does anyone ever feel normal again?? There is such a

> horribly lost feeling that exists right now. It is like being in a

> dark room and feeling one's way around, not knowing what one will

> bump into next. I gather from all the postings, that there is much

> worse yet to come. Can anyone post a chronology of how their

> disease progressed?

>

> I have always been very active physically and through many hardships

> found the courage to face most difficulties with lots of hard work

> and prayer but am finding I can't use hard work this time to help me.

> This fear of the unknown is hard to handle.

>

> Has anyone taken a poll of what has caused people to have " flares " ?

> Have any questionaires addressed the environmental (ie. foods,

> pesticides, insecticides, etc) encounters prior to the disease?

> I have no family hx anywhere so just wonder if precipitating factors

> are being researched by any group or foundation.

>

> I usually have intense itching in feet and hands, and sometimes

> total body as the pain starts. Is this experienced by anyone else?

> My doctor didn't connect that with anything.

>

> I hope with time I will get to know each of you in the group. There

> are a lot of names that I need to put with circumstances but hope to

> start a small journal to identify each of you. My heart goes out to

> each as I read the posts. My prayers have already increased by

> leaps and bounds.

>

> Hugs to each,

> Carolyn in KY

>

>

>

[Guest guest]

Welcome Carolyn. This really is the best group of people on the web. I

hope you feel normal again very soon. With the right meds, it is very

possible. Sometimes it takes time to find the right meds. We¹re blessed

with a new generation of RA drugs that are giving much relief to many of us.

I¹m an Enbrel lover. I¹ve been on it since shortly after it was approved.

It¹s given me more ³normal² days. I¹m 48 and was diagnosed in my early

20¹s. I went into remission after my first child and stayed in remission

until my second pregnancy 3 years later. Everyone is different, so you

can¹t go by what has happened to others. Some have mild disease which is

an annoyance but doesn¹t stop them from working or leading a full life.

Some have severe disease that is disabling in just a few months. We can¹t

predict how it will affect anyone. I hope you are one of the lucky ones. I

have no family history either. We¹ve had many discussions about what causes

flares. I think I have to say that stress is on top of the list.

a

> Hi everyone,

>

> I have been reading the postings to the group for a couple of days

> to try and get a feel for what a group like this is all about. I am

> very impressed with the information, compassion, and understanding

> that are displayed.

>

> I awoke about 3 months ago with hands and feet terribly swollen and

> painful to move. I called my internal medicine doctor and got an

> appointment the next week. That was a long week. Does everyone have

> problems with their doctors being so busy that it takes a while to

> get an appointment? I took aspirin and an antihistamine til then.

> I was put on prednisone at that appointment and referred to a RA

> specialist. Their office had no appointments for 4 months. I

> returned to my int. med. a month later and she said 4 months not

> acceptable and got me in 3 wks later and took me off the prednisone

> and on ibuprofen in huge doses. I have not tested positive for RA

> yet but feel sure that is just a technicality. The Rheumatologist

> put me on celebrex for 2 months, which helped me a little but still

> tremendous trouble with feet stiffness and pain. Now on

> methotrexate and celebrex. I do not know what to expect with this

> disease. Does anyone ever feel normal again?? There is such a

> horribly lost feeling that exists right now. It is like being in a

> dark room and feeling one's way around, not knowing what one will

> bump into next. I gather from all the postings, that there is much

> worse yet to come. Can anyone post a chronology of how their

> disease progressed?

>

> I have always been very active physically and through many hardships

> found the courage to face most difficulties with lots of hard work

> and prayer but am finding I can't use hard work this time to help me.

> This fear of the unknown is hard to handle.

>

> Has anyone taken a poll of what has caused people to have " flares " ?

> Have any questionaires addressed the environmental (ie. foods,

> pesticides, insecticides, etc) encounters prior to the disease?

> I have no family hx anywhere so just wonder if precipitating factors

> are being researched by any group or foundation.

>

> I usually have intense itching in feet and hands, and sometimes

> total body as the pain starts. Is this experienced by anyone else?

> My doctor didn't connect that with anything.

>

> I hope with time I will get to know each of you in the group. There

> are a lot of names that I need to put with circumstances but hope to

> start a small journal to identify each of you. My heart goes out to

> each as I read the posts. My prayers have already increased by

> leaps and bounds.

>

> Hugs to each,

> Carolyn in KY

>

>

>

>

>

[Guest guest]

> Does anyone have experience where mercury caused a speech/language

> disorder, such as apraxia?

It did for my son, he has more problems than just apraxia tho.

>

> 2. If mercury is the culprit, how do I even begin to chelate?

My general info page

http://www.danasview.net/chelate.htm

> 3. Would chelation really help my son's apraxia?

It is helping my son with his.

>

> 4. BIG ONE.....what is the connection to yeast and mercury?

Metals in the body make a favorable environment for the growth of

yeast. As chelation is progressing, my son is having fewer and fewer

yeast issues. Currently has not had any yeast for 3-4 months, except

for one instance which went away in 2-3 days.

I have

> heard that there is a hyper reaction that kids can have if they are

> on the " right " supplement....which means that there is a yeast

> problem. I am clue-less about this yeast thing.....help?

Yeast can cause hyper. So can other supplements. Hyper is not

generally a good sign. If your child is hyper, discontinue whatever

it was that may have caused it

http://www.danasview.net/yeast.htm

http://www.danasview.net/phenol.htm

Dana

http://www.danasview.net/

[Guest guest]

Chelation has helped son's apraxia (also autistic), and his fine motor

dyspraxia. His language has become more expressive, and he rarely gropes for

the words. His fine motor skills have been the biggest jump.

Prior to chelation he couldn't write (5 yrs. at the time), nor could he zip,

button or tie his shoes. He now only has problems with consistency in writing,

but can finally write all letters and numbers, legibly.

I'm a firm believer that Apraxia and mercury poisoning are linked. It's also no

coincidence that many, many Autistic children are also Apraxic. I've been

chastised for speaking my mind about the mercury on an Apraxia board that I

belong to. I still try to spread the word, privately.....

I live in Northern Illinois, and I do not use a doctor for chelation. It is an

option for you. I merely waited until I was informed enough, and comfortable

enough to do it.

It's interesting to note, that I've also chelated my Dyslexic child, and he is

no longer having any difficulties in school. He no longer reverses letters, or

numbers and his hand writing is finally beautiful.

a - Peoria Illinois

a, mom to Alec 8.4 (Dyslexia), 6.7 (Asperger's), and 4.10

[Guest guest]

I would agree with Dana to discontinue something that is making a

child hyper, BUT, I would say then to reintroduce it again but in

VERY TEENY TINY amounts. There are a lot of things that initially

made Ethan hyper, but by doing this, I have been able to reintroduce

and he does OK on them. Another suggestion is to discontinue, but

reintroduce in a tiny amount, but also NOT every day at first... try

every few days, and work up slowly.

The reason why I say this is because I have an email from a

neuroscience researcher that talks about how when the cells are VERY

depleted, that this type of hyperness could be an indication of just

how very depleted their system was. BUT, I also think that when you

have an unexpected hyper reaction with something that is supposed to

bring out one effect (such as calmness with magnesium), then also

suspect yeast problems. Also, depending on what it was that brought

about the hyperness, you could suspect an allergic reaction...

example: some kids get hyper on enzymes. It could be a sign of how

depleted they were, it could be a sign of yeast, but it could also be

a sign that they are allergic to something in the enzyme mix. But

contrast this with Ethan getting hyper on Taurine. Chances are it

was not an allergen problem, because it was a hypoallergenic brand.

So, it was either a sign of how depleted he was, or a sign of yeast.

I don't give it to him daily yet, but I do give it to him in small

amounts every couple of days, and he does fine on it. Now that we

have been doing this for a while, I *D0* see that on the days he has

Taurine, he is better organized and calmer. Same thing goes for

B12... gave him some B12 today and his hands look relaxed and he

looks more organized.

W

--- In , " danaatty <danaatty@y...> "

<> I have

> > heard that there is a hyper reaction that kids can have if they

are

> > on the " right " supplement....which means that there is a yeast

> > problem. I am clue-less about this yeast thing.....help?

>

>

> Yeast can cause hyper. So can other supplements. Hyper is not

> generally a good sign. If your child is hyper, discontinue

whatever

> it was that may have caused it

>

[Guest guest]

---Most treatments I have used on my son, havethis effect on him

initially...seems like it is making him worse, but it usually soon

smooths out and I begin to see improvement.

Lindy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In , " merrywbee <maryandphilip@a...> "

<maryandphilip@a...> wrote:

> I would agree with Dana to discontinue something that is making a

> child hyper, BUT, I would say then to reintroduce it again but in

> VERY TEENY TINY amounts. There are a lot of things that initially

> made Ethan hyper, but by doing this, I have been able to

reintroduce

> and he does OK on them. Another suggestion is to discontinue, but

> reintroduce in a tiny amount, but also NOT every day at first...

try

> every few days, and work up slowly.

>

> The reason why I say this is because I have an email from a

> neuroscience researcher that talks about how when the cells are

VERY

> depleted, that this type of hyperness could be an indication of

just

> how very depleted their system was. BUT, I also think that when

you

> have an unexpected hyper reaction with something that is supposed

to

> bring out one effect (such as calmness with magnesium), then also

> suspect yeast problems. Also, depending on what it was that

brought

> about the hyperness, you could suspect an allergic reaction...

> example: some kids get hyper on enzymes. It could be a sign of

how

> depleted they were, it could be a sign of yeast, but it could also

be

> a sign that they are allergic to something in the enzyme mix. But

> contrast this with Ethan getting hyper on Taurine. Chances are it

> was not an allergen problem, because it was a hypoallergenic

brand.

> So, it was either a sign of how depleted he was, or a sign of

yeast.

> I don't give it to him daily yet, but I do give it to him in small

> amounts every couple of days, and he does fine on it. Now that we

> have been doing this for a while, I *D0* see that on the days he

has

> Taurine, he is better organized and calmer. Same thing goes for

> B12... gave him some B12 today and his hands look relaxed and he

> looks more organized.

>

> W

>

>

> --- In , " danaatty <danaatty@y...> "

> <> I have

> > > heard that there is a hyper reaction that kids can have if they

> are

> > > on the " right " supplement....which means that there is a yeast

> > > problem. I am clue-less about this yeast thing.....help?

> >

> >

> > Yeast can cause hyper. So can other supplements. Hyper is not

> > generally a good sign. If your child is hyper, discontinue

> whatever

> > it was that may have caused it

> >

[Guest guest]

---Most treatments I have used on my son, havethis effect on him

initially...seems like it is making him worse, but it usually soon

smooths out and I begin to see improvement.

Lindy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In , " merrywbee <maryandphilip@a...> "

<maryandphilip@a...> wrote:

> I would agree with Dana to discontinue something that is making a

> child hyper, BUT, I would say then to reintroduce it again but in

> VERY TEENY TINY amounts. There are a lot of things that initially

> made Ethan hyper, but by doing this, I have been able to

reintroduce

> and he does OK on them. Another suggestion is to discontinue, but

> reintroduce in a tiny amount, but also NOT every day at first...

try

> every few days, and work up slowly.

>

> The reason why I say this is because I have an email from a

> neuroscience researcher that talks about how when the cells are

VERY

> depleted, that this type of hyperness could be an indication of

just

> how very depleted their system was. BUT, I also think that when

you

> have an unexpected hyper reaction with something that is supposed

to

> bring out one effect (such as calmness with magnesium), then also

> suspect yeast problems. Also, depending on what it was that

brought

> about the hyperness, you could suspect an allergic reaction...

> example: some kids get hyper on enzymes. It could be a sign of

how

> depleted they were, it could be a sign of yeast, but it could also

be

> a sign that they are allergic to something in the enzyme mix. But

> contrast this with Ethan getting hyper on Taurine. Chances are it

> was not an allergen problem, because it was a hypoallergenic

brand.

> So, it was either a sign of how depleted he was, or a sign of

yeast.

> I don't give it to him daily yet, but I do give it to him in small

> amounts every couple of days, and he does fine on it. Now that we

> have been doing this for a while, I *D0* see that on the days he

has

> Taurine, he is better organized and calmer. Same thing goes for

> B12... gave him some B12 today and his hands look relaxed and he

> looks more organized.

>

> W

>

>

> --- In , " danaatty <danaatty@y...> "

> <> I have

> > > heard that there is a hyper reaction that kids can have if they

> are

> > > on the " right " supplement....which means that there is a yeast

> > > problem. I am clue-less about this yeast thing.....help?

> >

> >

> > Yeast can cause hyper. So can other supplements. Hyper is not

> > generally a good sign. If your child is hyper, discontinue

> whatever

> > it was that may have caused it

> >

[Guest guest]

Hello Kim,

> I have been referred to this group through another mom and SLP on

> another board which discusses apraxia.

good.

> I have some basic questions, if anyone has answers/guidance, I would

> truly appreciate it.

>

> 1. I read recently that mercury overload can cause speech/language

> disorders.....I am trying to find out if that is the case in my son.

> Does anyone have experience where mercury caused a speech/language

> disorder, such as apraxia?

well, I don't mean to sound stupid here, but do you consider

autism to BE a speech/language disorder, in cases of children

who do not speak?

If so, then you could consider that there are some or many kids

with ASD who have started to speak and/or improved their speech

ability with chelation (mercury detox).

I'm sure there are also kids with " apraxia " and NOT ASD who

have also benefitted from chelation.

I consider all of the DX's to be " a range " and " related " and

" overlapping " . This is just my opinion, of course.

Also, I am much more prone to be interested in what HELPS

rather than being sure of the cause. I think the hair test

(which you have done) is the best step I know of in that

regard..... If your son is metal toxic, then it is likely

that detox will help, although the only way to really know

is to do it.

You can read many posts about kids' progress using chelation,

here:

/files/LOVE_LETTERS

If you want, you can search the page for " apraxia " and " speech " .

Many many of the posts involve increases and improvements in

speech, so there should be lots of good inspirational reading

there, if you wish.

Moria

>

> 2. If mercury is the culprit, how do I even begin to chelate?

> Anyone know of a chelation doctor in Northern Illiois? I have heard

> of the Pheiffer group in Naperville, anyone with experience with

them?

>

> 3. Would chelation really help my son's apraxia?

>

> 4. BIG ONE.....what is the connection to yeast and mercury? I have

> heard that there is a hyper reaction that kids can have if they are

> on the " right " supplement....which means that there is a yeast

> problem. I am clue-less about this yeast thing.....help?

>

> THANKS to everyone who can answer these questions....

>

> Kim

[Guest guest]

Hi Kim,

oops, I blew it=== I sent a response to just one of your

questions, and meant to comment on more-- just tired, and

goofed.

> 2. If mercury is the culprit, how do I even begin to chelate?

Well, there are many answers to this. " Keep reading " is my

main answer. The process is really not that complex.

This does not mean there are not important risks and

considerations.

> Anyone know of a chelation doctor in Northern Illiois? I have heard

> of the Pheiffer group in Naperville, anyone with experience with

them?

Just that I read of them a great deal. No personal experience.

Here are general comments on looking for doctors:

/files/HOW_TO_find_doctor

> 3. Would chelation really help my son's apraxia?

um, I think I did already comment on this one--- if he is

toxic I think it is **likely** to help him. But the extent

and type of changes I would not at all want to predict.

I think you have to try it and see in order to know.

> 4. BIG ONE.....what is the connection to yeast and mercury?

mercury toxic people tend to have yeast problems, and tend

to have recurrant yeast problems. Among other things LOL.

People who are mercury toxic have a lot of problem areas

best wishes,

Moria

[Guest guest]

> HI MY NAME IS AMY. I AM NEW TO THE GROUP.

welcome amy.

I WAS SUGGESTED TO COME

> HERE TO FIND OUT MORE ABOUT THE GLUTEN FREE DIET.

on this list, there are parents whose kids are on a gluten free diet

AND are taking digestive enzymes, and also parents whose kids are not

on the gluten free diet but they are taking digestive enzymes. You

can learn more about either approach here.

I ALSO DON'T WANT TO WASTE $70+ IN THE PROCESS.

That is understandable. The gluten free diet is very important to be

strickt about if you are going to do it. This means to eliminate ALL

sources of gluten (and there are TONS of them, from hand creams,

toothpastes, soaps, touching pet foods, not to mention the obvious

ones of foods that you would eat). Many parents do feel that it is a

difficutl to task to eliminate ALL source of gluten. It means being

very vigilant, and even cooking with seperate utensils for things

such as gluten free pasta, then you would for the rest of the family

(if you all will not be on the gluten free diet). This is why many

families who do choose to do the gluten free diet will find it

eaasier if the whole family is gluten free.

It also means either learning to bake new things (such as cakesm,

cookies and breads) or with new ingredients, (eliminating foods such

as pasta that have gluten) OR buying (often very expensive) ready

made food items from either health food stores, or ordering online.

ALSO, gluten free diets can take several months of trying before you

can be sure you have given it a good try to see if you get positive

results. It can take several months after you stop getting ANY

gluten into your system for the effects to be eliminated. SO it can

be a longer process. Although some chidlren show positive results

within days of trying the gluten free diet.

BUT, one benefit from trying digestive enzymes is that it will take

about 3-4 weeks of taking them, that you will realize wether the

enzymes will have any effect for your daughter. This means ordering

one months worth of enzymes to get results. Most children taking

enzymes will show some type of results within days of trying them.

SHE HAS

> BEEN ON NUMEROUS DRUGS, SUPPLEMENTS, DIETS AND NOTHING BUT THE

DRUGS

> THAT SHE IS TAKING NOW HAVE STOPPED THE SEIZURES.

Is it the seizures you are most concerned with? can you tell us what

types of supplements she has taken (or is taking now) and what type

of diets you have tried in the past and what happened?

I READ SOME PAST MESSAGES TO BE CAUGHT UP TO

> SPEED (I THOUGHT), BUT I CAN NOT MAKE HEADS OR TAILS FROM THE LAST

> MESSAGES. CAN SOMEONE HELP.

what may be most helpful is to read the " files " section. It is

located on the left hand side of the screen, where the

words " home " , " messages " , " post " , " chat " , " files " , " photos " , links

etc. The files section has lots of folders on enzymes, enzyme use,

various supplements, and other interesting info.

I JUST WANT MY DAUGHTER BACK TO NORMAL

> (NOT A SMALL TASK TO ASK FOR).

>

> AMY

What also would be helpful, is if you can give some more detailed

information as to what types of behaviours, etc. that she displays,

and what you are hoping to achieve with her dietary changes. For

example, some can say they hope to see more verbal skills, less

sensory defensiveness, better transitions, increased social skills,

etc. etc.

is what you are hoping for is decrease in autism symptoms or better

control of the epilepsy?

welcome here amy, and hope that you will find information and support

here that you are looking for.

minna

[Guest guest]

a,

Would you mind sharing info about the Apraxia chat group. Thanks

rogerf@...

Also could you tell me how long you have been chelating and with what....

My son has the same problems.

Re:[ ] new to group

> Chelation has helped son's apraxia (also autistic), and his fine motor

dyspraxia. His language has become more expressive, and he rarely gropes

for the words. His fine motor skills have been the biggest jump.

>

> Prior to chelation he couldn't write (5 yrs. at the time), nor could he

zip, button or tie his shoes. He now only has problems with consistency in

writing, but can finally write all letters and numbers, legibly.

>

> I'm a firm believer that Apraxia and mercury poisoning are linked. It's

also no coincidence that many, many Autistic children are also Apraxic. I've

been chastised for speaking my mind about the mercury on an Apraxia board

that I belong to. I still try to spread the word, privately.....

>

> I live in Northern Illinois, and I do not use a doctor for chelation. It

is an option for you. I merely waited until I was informed enough, and

comfortable enough to do it.

>

> It's interesting to note, that I've also chelated my Dyslexic child, and

he is no longer having any difficulties in school. He no longer reverses

letters, or numbers and his hand writing is finally beautiful.

>

> a - Peoria Illinois

>

>

>

>

>

>

>

> a, mom to Alec 8.4 (Dyslexia), 6.7 (Asperger's), and 4.10

>

>

> =======================================================

>

[Guest guest]

> I have started reading thru the

> files but there are so many, i dont know what to read first.

> Any help is appreciated.

Hi Tracie,

Welcome

Definitely, my favorite is

/files/ANDY_INDEX

Be sure that you will get your brain fried first It happened to most of us

Good luck!

Valentina

[Guest guest]

> Hello All,

> New to Group. Was hoping that someone can lead me in the right

> direction as to where the best place to start for my 6 yo son or

even

> to know if this would work for him.

/files/HOW_TO_hair_test

>I have started reading thru the

> files but there are so many, i dont know what to read first.

/files/Love_Letters

if you need inspiration

/files/Andy_Index

if you need information on chelation and related subjects . . .. . .

> Any help is appreciated.

> Traci

[Guest guest]

Hi Janine & welcome to our group!

Thank you for such a great introduction. I think Hanger Orthotics

does use the STARband, it sounds like the decoration on it, is one

that Orthomerica uses on their STARbands. Do you see a star design

imprinted somewhere on the outside of the band?

Great to hear your ins. covered the band with NO hassles! That's

pretty unusual around here, so it's nice to hear for a change.

You probably have seen improvment already, hope so anyway!Especially

if she's hit a growth spurt. Does she mind the band?

Glad things are going pretty well for you. Please keep us posted on

Isabella's (LOVE that name!) progress.

Welcome again

Debbie Abby's mom DOCgrad

MI

> Hi there

> I am new to the group and wanted to share my story with you all. We

> first noticed that my daughter had a strong preference for looking

to

> one side when she was 2 months old. At that point I started doing

> research and learned all about torticollis and the resulting

> condition of plagiocephaly. Well of course we rushed her to the

> pediatrician ASAP. All we were told was to start putting things of

> interest to her less preferred side and to vary her position in her

> crib and that her head would " round out on it's own " . Maybe we were

> in denial but we were so relieved that the ped did not prescribe a

> helmet that we took this advice. After two months of repositioning

> and my sneaking into her room at night to turn her head, we were

told

> pretty much the same thing at the 4 month appointment. At this

point

> her torticollis had really improved and since her head control was

> very good, the ped assured us that we would really start to see the

> head round out on its own. At the 6 month appointment the ped

finally

> agreed that the flat spot on the back left of her head

> was " impressive " however she still insisted it would round out on

> it's own, but to appease me said I could see a plastic surgeon to

> make myself feel better. The plastic surgeon we were referred to is

> affiliated with Children's Hospital in Boston, one of the best and

> busiest hospitals in the country, so unfortunately by the time he

was

> able to see us for an appointment my daughter was 7 1/2 months old.

I

> think we were expecting the doctor to tell us we were crazy, her

head

> was fine, so of course when he told us her plagio was in the

moderate

> range and definitely a candidate for treatment we were

disappointed -

> but at least we were no longer in denial! We were given a

> prescription for a molding helmet to an affiliated orthotist,

however

> when we called the orthotist we were told we'd be better off

finding

> one in the network with our health plan - Cigna - which is what we

> did. My daughter was casted at Hanger Orthotics at 8 months of age

> and is now gradually getting acclimated to wearing the helmet.

Maybe

> I am crazy again, but she's only been in it for a week and I think

I

> already see some rounding! On one of the few positive notes of this

> whole ordeal, our insurance covered the costs, no hassle and no

> questions asked, 100%.

> Anyway I just wondering, has anyone on this list used Hanger

> Orthotics? Our orthotist told us the helmet they manufacture works

on

> the same principles as the DOC and STARBand so I guess I am

assuming

> that means it's active, but I didn't know enough to ask him this at

> the time. The helmet itself looks like the DOC band, opening on the

> top with a velcro strip on one side of it that fastens it together.

> It came pre-decorated with our choice of decals and actually I

think

> my sweetie looks pretty cute in it - a mini pink NHL player! We

have

> even started calling her " Crash " for short as she barrels around

the

> room fearlessly butting things with it ;-)

> This list is a great resource for worried parents dealing with all

> the uncertainties and self-inflicted guilt trips that this

condition

> brings with it ;-)

> Thanks to all!

> Janine & Isabella (8 months)

[Guest guest]

Hi Janine,

Welcome to the group. Thank you for sharing Isabella's story with us.

It's so good to hear that Cigna paid 100%!

I'm sure we have parents here that use Hanger. They'll chime in here

and let you know.

Please keep us updated on Isabella.

> Hi there

> I am new to the group and wanted to share my story with you all. We

> first noticed that my daughter had a strong preference for looking

to

> one side when she was 2 months old. At that point I started doing

> research and learned all about torticollis and the resulting

> condition of plagiocephaly. Well of course we rushed her to the

> pediatrician ASAP. All we were told was to start putting things of

> interest to her less preferred side and to vary her position in her

> crib and that her head would " round out on it's own " . Maybe we were

> in denial but we were so relieved that the ped did not prescribe a

> helmet that we took this advice. After two months of repositioning

> and my sneaking into her room at night to turn her head, we were

told

> pretty much the same thing at the 4 month appointment. At this

point

> her torticollis had really improved and since her head control was

> very good, the ped assured us that we would really start to see the

> head round out on its own. At the 6 month appointment the ped

finally

> agreed that the flat spot on the back left of her head

> was " impressive " however she still insisted it would round out on

> it's own, but to appease me said I could see a plastic surgeon to

> make myself feel better. The plastic surgeon we were referred to is

> affiliated with Children's Hospital in Boston, one of the best and

> busiest hospitals in the country, so unfortunately by the time he

was

> able to see us for an appointment my daughter was 7 1/2 months old.

I

> think we were expecting the doctor to tell us we were crazy, her

head

> was fine, so of course when he told us her plagio was in the

moderate

> range and definitely a candidate for treatment we were

disappointed -

> but at least we were no longer in denial! We were given a

> prescription for a molding helmet to an affiliated orthotist,

however

> when we called the orthotist we were told we'd be better off

finding

> one in the network with our health plan - Cigna - which is what we

> did. My daughter was casted at Hanger Orthotics at 8 months of age

> and is now gradually getting acclimated to wearing the helmet.

Maybe

> I am crazy again, but she's only been in it for a week and I think

I

> already see some rounding! On one of the few positive notes of this

> whole ordeal, our insurance covered the costs, no hassle and no

> questions asked, 100%.

> Anyway I just wondering, has anyone on this list used Hanger

> Orthotics? Our orthotist told us the helmet they manufacture works

on

> the same principles as the DOC and STARBand so I guess I am

assuming

> that means it's active, but I didn't know enough to ask him this at

> the time. The helmet itself looks like the DOC band, opening on the

> top with a velcro strip on one side of it that fastens it together.

> It came pre-decorated with our choice of decals and actually I

think

> my sweetie looks pretty cute in it - a mini pink NHL player! We

have

> even started calling her " Crash " for short as she barrels around

the

> room fearlessly butting things with it ;-)

> This list is a great resource for worried parents dealing with all

> the uncertainties and self-inflicted guilt trips that this

condition

> brings with it ;-)

> Thanks to all!

> Janine & Isabella (8 months)

[Guest guest]

We went through Hanger Orthotics in Independence Missouri. We had a great

orthotist with over 15 years experience with plagio. Jenna also had

improvement after week 1. We took weekly pictures and can see improvement

from week to week. Jenna started at 9 months and wore her STARband for

exactly 3 months. She received 80% correction. Although I think that

number is higher now because she has rounded more since graduation. We to

noticed the flat spot at a young age but didn't get her in her band until 9

months.

I am so happy your insurance covered everything. We are preparing our

second appeal. So that Hanger doesn't use the STARband? Jenna's StARband

had a star imprinted on the back of her helmet. Don't feel guilty you are

doing a great job. And Isabella is already rounding.

Angie and Jenna (STARband grad 1/21/03)

New to Group

> Hi there

> I am new to the group and wanted to share my story with you all. We

> first noticed that my daughter had a strong preference for looking to

> one side when she was 2 months old. At that point I started doing

> research and learned all about torticollis and the resulting

> condition of plagiocephaly. Well of course we rushed her to the

> pediatrician ASAP. All we were told was to start putting things of

> interest to her less preferred side and to vary her position in her

> crib and that her head would " round out on it's own " . Maybe we were

> in denial but we were so relieved that the ped did not prescribe a

> helmet that we took this advice. After two months of repositioning

> and my sneaking into her room at night to turn her head, we were told

> pretty much the same thing at the 4 month appointment. At this point

> her torticollis had really improved and since her head control was

> very good, the ped assured us that we would really start to see the

> head round out on its own. At the 6 month appointment the ped finally

> agreed that the flat spot on the back left of her head

> was " impressive " however she still insisted it would round out on

> it's own, but to appease me said I could see a plastic surgeon to

> make myself feel better. The plastic surgeon we were referred to is

> affiliated with Children's Hospital in Boston, one of the best and

> busiest hospitals in the country, so unfortunately by the time he was

> able to see us for an appointment my daughter was 7 1/2 months old. I

> think we were expecting the doctor to tell us we were crazy, her head

> was fine, so of course when he told us her plagio was in the moderate

> range and definitely a candidate for treatment we were disappointed -

> but at least we were no longer in denial! We were given a

> prescription for a molding helmet to an affiliated orthotist, however

> when we called the orthotist we were told we'd be better off finding

> one in the network with our health plan - Cigna - which is what we

> did. My daughter was casted at Hanger Orthotics at 8 months of age

> and is now gradually getting acclimated to wearing the helmet. Maybe

> I am crazy again, but she's only been in it for a week and I think I

> already see some rounding! On one of the few positive notes of this

> whole ordeal, our insurance covered the costs, no hassle and no

> questions asked, 100%.

> Anyway I just wondering, has anyone on this list used Hanger

> Orthotics? Our orthotist told us the helmet they manufacture works on

> the same principles as the DOC and STARBand so I guess I am assuming

> that means it's active, but I didn't know enough to ask him this at

> the time. The helmet itself looks like the DOC band, opening on the

> top with a velcro strip on one side of it that fastens it together.

> It came pre-decorated with our choice of decals and actually I think

> my sweetie looks pretty cute in it - a mini pink NHL player! We have

> even started calling her " Crash " for short as she barrels around the

> room fearlessly butting things with it ;-)

> This list is a great resource for worried parents dealing with all

> the uncertainties and self-inflicted guilt trips that this condition

> brings with it ;-)

> Thanks to all!

> Janine & Isabella (8 months)

>

>

> For more plagio info

[Guest guest]

Hmmmm I will have to check to see if there is a star on her helmet.

The orthotist told me it is FDA approved and manufactured in Arizona,

if I remember the state correctly, and I think the compare page on

the support site mentions the STARBand is made in Florida, but the

DOC band is made in Arizona, so now I am really conused!

We were *very* surprised that our insurance covered everything,

especially after reading the nightmares that others have to go

through. Good luck with your appeal!!!

So far Isabella doesn't mind the helmet, although she's already

figured out how to undo the velcro, NOTHING is safe from those

curious little fingers!

Are there any other parents from Massachusetts out there? I would be

curious to hear your experiences.

Thanks for all the words of welcome! :-)

Janine & Isabella

--- In Plagiocephaly , " Pope " <a.l.pope@w...>

wrote:

<snipped>

> I am so happy your insurance covered everything. We are preparing

our

> second appeal. So that Hanger doesn't use the STARband? Jenna's

StARband

<snipped>

[Guest guest]

Congratulations on getting Cigna to pay without any hassles. You are very blessed. In just 24 more days, it will be the 1 year anniversary of the first day of my battle with Cigna, and it's not over yet. We are on our 4th appeal and have spent 100's of hours fighting with them. I'm so relieved to hear that they are finally seeing the light and paying for medically necessary bands for these precious babies. Happy rounding Isabella!!!

Gail, Sam and Sara's mom, DOC grads

New to Group

Hi thereI am new to the group and wanted to share my story with you all. We first noticed that my daughter had a strong preference for looking to one side when she was 2 months old. At that point I started doing research and learned all about torticollis and the resulting condition of plagiocephaly. Well of course we rushed her to the pediatrician ASAP. All we were told was to start putting things of interest to her less preferred side and to vary her position in her crib and that her head would "round out on it's own". Maybe we were in denial but we were so relieved that the ped did not prescribe a helmet that we took this advice. After two months of repositioning and my sneaking into her room at night to turn her head, we were told pretty much the same thing at the 4 month appointment. At this point her torticollis had really improved and since her head control was very good, the ped assured us that we would really start to see the head round out on its own. At the 6 month appointment the ped finally agreed that the flat spot on the back left of her head was "impressive" however she still insisted it would round out on it's own, but to appease me said I could see a plastic surgeon to make myself feel better. The plastic surgeon we were referred to is affiliated with Children's Hospital in Boston, one of the best and busiest hospitals in the country, so unfortunately by the time he was able to see us for an appointment my daughter was 7 1/2 months old. I think we were expecting the doctor to tell us we were crazy, her head was fine, so of course when he told us her plagio was in the moderate range and definitely a candidate for treatment we were disappointed - but at least we were no longer in denial! We were given a prescription for a molding helmet to an affiliated orthotist, however when we called the orthotist we were told we'd be better off finding one in the network with our health plan - Cigna - which is what we did. My daughter was casted at Hanger Orthotics at 8 months of age and is now gradually getting acclimated to wearing the helmet. Maybe I am crazy again, but she's only been in it for a week and I think I already see some rounding! On one of the few positive notes of this whole ordeal, our insurance covered the costs, no hassle and no questions asked, 100%.Anyway I just wondering, has anyone on this list used Hanger Orthotics? Our orthotist told us the helmet they manufacture works on the same principles as the DOC and STARBand so I guess I am assuming that means it's active, but I didn't know enough to ask him this at the time. The helmet itself looks like the DOC band, opening on the top with a velcro strip on one side of it that fastens it together. It came pre-decorated with our choice of decals and actually I think my sweetie looks pretty cute in it - a mini pink NHL player! We have even started calling her "Crash" for short as she barrels around the room fearlessly butting things with it ;-)This list is a great resource for worried parents dealing with all the uncertainties and self-inflicted guilt trips that this condition brings with it ;-)Thanks to all!Janine & Isabella (8 months)For more plagio info

[Guest guest]

Janine,

Welcome to the group and thanks for sharing your story with us. It's great to hear that not only is the tort resolving, but the helmet is working its magic as well! Please keep us posted on your little pink "crash"! Too cute!

' Mom

[Guest guest]

: I hope you don't mind a quick question....and welcome to the group!

When you put your daughter on the Carn-aware...did you notice any negative

side-effects? I tried my son on carn-aware and he went nuts. No,

really...NUTS! He never stopped moving and moving. It was awful. I

took him off the supplement after only 3 days, and I wonder from time to

time if I didn't give him enough of a chance. What did you experience?

Kim

I was wondering if any of you have a child with Apraxia due to Landau

Kleffner Syndrome??

My daughter is 6 has LKS and Apraxia and her speech has improved with

Herbals and vitamins such

as Carn-aware. This is L- Carnotine, Zinc, and Vitamin E. This has improved

her speech and cognitive skills from a 1.4 level to a 3.4 level in 4

months.

We started to see results in 2 weeks.

[Guest guest]

I'm not , but my daughter has been taking

Carn-aware for several months with no bad side

effects. Her speech is really taking off--hard to say

if it is the Carn-aware or other supplements but we

think it is helping.

Yael