New here!

[Guest guest]

Hello ,

Welcome to the gorup

On Mon, 5 Feb 2001 nmorri3924@... wrote:

> posts singly. I would like to be in a digest mode. Can someone tell me how to

> do this?

I've fixed it for you.

Chris.

[Guest guest]

>One thing I might suggest, as much as I hate labels, you will need one to

get any kind of services for your son. So try to pin the doctor down on a

label. In some areas, autism will be given greater credence than PDD-NOS

as far as getting services goes. I would definately look into metals, but

would also look into diet, and don't overlook behavioral therapy. I could

give you more info on this if you want to write to me personally. It just

seems weird to me that he might be toxic if he hasn't been exposed to

mercury through vaccines, althought there are other environmental factors.

Also, others on the list may know if anything that you did prenatally, like

shots, or fillings could cause toxicity.

Randee,

yes, mercury is passed from moms to babies both in gestation and

breasfeeding. Mom could be toxic from any number of sources,

including amalgam dental fillings, eating fish, Rhogam shots, other

shots such as flu shots, etc.

Moria

[Guest guest]

Hello Kat,

Welcome. Your quest to find answers and help for your son sounds good.

>I don't think my son has mercury poisoning -- he's only had one

>vaccine and that was thimerosal free. However, I just found out

>about aluminum toxicity. I think that could be a possibility. I was

>wondering what the symptoms of aluminum toxicity are? Also, I would

>like to get a hair analysis done. Can I order this direct, or does a

>physician have to order it? And how much does it cost?

You will find quite detailed info on how to get a hair test here:

/files/HOW_TO_hair_test

This will include aluminum along with many other toxic metals.

best wishes,

Moria

[Guest guest]

Oops, I forgot to give you my e-mail:

Randee@...

[ ] New here!

I just found this group and I'm desperate to find answers for my 24

month old son who has severe expressive and receptive language

delays. Also does not imitate behavior. Otherwise, he is a very

affectionate child with a good sense of humor and learns well in non-

language based areas. I believe whatever is going on with him is

connected to autism, although he does not really fit on the specturm,

unless you say mild PDD-NOS. He has no formal diagnosis yet. We

will be taking him into a pediatric neurologist in about a month to

try to find answers and maybe get a diagnosis at that time. I really

could care less about labels, I just want to find a way to help him.

I don't think my son has mercury poisoning -- he's only had one

vaccine and that was thimerosal free. However, I just found out

about aluminum toxicity. I think that could be a possibility. I was

wondering what the symptoms of aluminum toxicity are? Also, I would

like to get a hair analysis done. Can I order this direct, or does a

physician have to order it? And how much does it cost?

I'm convinced I can help my son, I just need to figure out what is

wrong.

Thanks in advance for your help.

Kat

[Guest guest]

Kat,

One thing I might suggest, as much as I hate labels, you will need one to get

any kind of services for your son. So try to pin the doctor down on a label.

In some areas, autism will be given greater credence than PDD-NOS as far as

getting services goes. I would definately look into metals, but would also look

into diet, and don't overlook behavioral therapy. I could give you more info on

this if you want to write to me personally. It just seems weird to me that he

might be toxic if he hasn't been exposed to mercury through vaccines, althought

there are other environmental factors. Also, others on the list may know if

anything that you did prenatally, like shots, or fillings could cause toxicity.

Good luck with this, I know excactly how you feel. We got a dx of PDD-NOS when

our son was 23 months old. Like you, I had already researched the autism

connection and knew what I wanted to do for my son, regardless of what the

neurologist told me. He was awful, with some very bad advice. Just remember,

you are mom, and you know your child better than anyone.

Take care,

Randee

[ ] New here!

I just found this group and I'm desperate to find answers for my 24

month old son who has severe expressive and receptive language

delays. Also does not imitate behavior. Otherwise, he is a very

affectionate child with a good sense of humor and learns well in non-

language based areas. I believe whatever is going on with him is

connected to autism, although he does not really fit on the specturm,

unless you say mild PDD-NOS. He has no formal diagnosis yet. We

will be taking him into a pediatric neurologist in about a month to

try to find answers and maybe get a diagnosis at that time. I really

could care less about labels, I just want to find a way to help him.

I don't think my son has mercury poisoning -- he's only had one

vaccine and that was thimerosal free. However, I just found out

about aluminum toxicity. I think that could be a possibility. I was

wondering what the symptoms of aluminum toxicity are? Also, I would

like to get a hair analysis done. Can I order this direct, or does a

physician have to order it? And how much does it cost?

I'm convinced I can help my son, I just need to figure out what is

wrong.

Thanks in advance for your help.

Kat

[Guest guest]

Hi . My name is Kim. I live in Stuart, Florida. There is a Florida

Apraxia group that just started at Florida_Apraxia in case

you're interested. I was wondering, what doctor did you see that diagnosed your

son with apraxia?

[ ] New here!

Hi there, I'm mom to (3.1). He was diagnosed with

Apraxia about 6 months ago. I'm still not sure I completely

understand this disorder and somedays it does seem hopeless! I still

want to learn on different ways to help my son and educate myself on

what is out there.

Boca Raton, FL

[Guest guest]

> Hi . My name is Kim. I live in Stuart, Florida. There is a

Florida Apraxia group that just started at

Florida_Apraxia in case you're interested. I was

wondering, what doctor did you see that diagnosed your son with

apraxia?

>

It was actually a speech therapist that diagnosed him with this.

Thanks for the info on the Florida group.

[Guest guest]

Dear ette,

Here are the doctors we have listed in California. Dr. Franco in

Riverside, CA, is one of the most experienced rheumatologists in the

world with antibiotic therapy. These diseases are usually misdiagnosed

and there is often a crossover between the symptoms. Dr. Brown believed

that several of these diseases are all manifestations of the same

problem and treated all alike. So antibiotic therapy can be used

whether you have JRA, RA, SD.

I guess we in this group would say that you don't need a good

rheumatologist - you need a doctor who will give you antibiotics. There

are now 900 people in this group and so you've found many people who

are very happy to help you and be your friend, me being one Hope to

hear back from you soon

Chris.

Murray R. Susser, MD (FP)

2211 Corinth Ave. – Suite 204

Los Angeles, CA 90064

P : 310-966-9194

Ellen Blanton, M.D. – RHU -not on AMA list

Desert Orthopedic Center phone directory shows: Mirage

Medical Group

39000 Bob Hope Dr. F1 2

One Hawkeye Park

Rancho Mirage 92270

69-844 Hwy 111 – Ste A

P: 760-568-2684

Rancho Mirage, CA 92270

P: 760-770-4166

F: 760-770-4048

Herbert M. Fisher, M.D. (RHU-IM) 1964

Burlingame Pacifica Medical Group

1828 El Camino Real, Suite 807

Burlingame, California 94010 (near San Francisco),

P: 650- 697-4195.

A. Franco, M.D. (rheumatologist - IV and oral)

Andre P. Lallande, D.O. (June 2000)

Arthritis Center of Riverside

4000 14th Street - Suite 511

Riverside, CA 92501

P : 909-788-0850

F : 909-788-4966

n Whitaker, M.D.

Svetlana Stivi M.D.

Whitaker Wellness Clinic

4321 Birch St.

Newport Beach, CA 92660

P : 949-851-1550 or 800826-1550

P : 949-851-1550

Accepts Medicare but no other private insurance

Joanne S. Garofalo, M.D. – not on AMA list

122 S. Ave.

Santa Barbara, CA 93111

P: 805-964-3541

Hans Gruenn, M.D. - not listed with AMA

bell Medical Group,

12732 Washington Bl., Suite D,

Los Angeles, CA 90066-4104.

P: 310-822-4614

J. Joy Boggess, MD (IM)

4 South Forest Road – Suite 2A

Sonora, CA 95370

P: 209-533-0333 -no medicare

Jung, MD -using AP

21700 West Golden Triangle Rd. – Suite 105

Saugus, CA 91350

P: 661-259-9800

Harmon M.D, - 1962

M.E.A. Health Care, Allergy Center

41800 Washington St., Suite 110

Bermuda Dunes, CA 92201. Indio

P: 760-345-2696.

Craig Jace, PAC, L Ac, and Dennis Schults, D.O.

Jace Medical Inc.,

6399 Wilshire Blvd., Suite 501,

Los Angeles CA 90048.

P: 323-782-8510

, D.O.

Western University

360 E. Mason Blvd.

.

Pomona, CA

P: 909-865-2565

Dr. Kanwal Khanna, M.D. (RHU) 1984

1429 College Ave. – Ste M

Modesto, CA. 95350 (S. of Sacramento, N. of Fresno)

P: 209 524 1666.

F: 209-524-1558

Krishan S. Khurana, M.D. (IM-RHU) - 1971

2220 East Fruit Street - Suite 216

Santa Ana, CA 92701

P: 714-547-0969

Leonard Klepp, M.D., - not listed on AMA directory

16311 Ventura Blvd, Suite 845,

Encino, CA 91436.

P: 818-981-5511

Edwin H. Krick, M.D. (RHU) 1961

Dept. of Medicine

11370 St.,

Suite 3100,

Loma CA 92354.

P: 909-796-4860

Stresses diet, exercise, stress reduction & prevention

A. Kunin, M.D., GP - 1955

2698 Pacific Ave.,

San Francisco, CA 94115.

P: 415-346-2500.

En Ling, M.D. – IM - 1986

West Valley Clinic or maybe Camino Medical Group

7225 Rainbow Drive,

San , CA 95129.

P : 408 366 0595

Maher Musharbash, M.D. (Diplomate of the American Board of Internal

Medicine)

41593 Winchester Rd. Ste. 101

Temecula, CA 92587

909 719 1111

Hitendra H. Sha, M.D. – not on AMA list

San Jacinto Medical Clinic

229 W. 7th St.,

P.O. Box 417,

San Jacinto, CA 92581.

P: 909-487-2550.

Jo Schulman, M.D. RHU - 1988

Scripps Institute,

San Diego, CA. 92121

Spiegel, M.D. – RHU - 1973

Sansum Medical Clinic,

317 W. Pueblo St.

Santa Barbara, CA 93102

P: 805-682-2621.

C. Wakefield, Jr., M.D. 1964

18988 Ave., Suite D,

Saratoga, CA 95070.

P: 408-366-0660

F: 408-366-0665.

Mark Drucker, M.D. contacted us 12-7-99 - FP – 12 years

Center for Advanced Medicine

4403 Manchester Ave. #107

Encinitas, CA 92024

P: 760-632-9042

F: 760-632-0574

760-729-4777

http://www.ctradvmed.com – RiSoTriene for diabetes

Member of American Academy of Anti-Aging

Diane E. Tjornhom, M.D. RHU – 1989

Bellflower Kaiser Permanente

Arthritis & Rheumatology Dept.

9400 East Rosecrans Ave.

Bellflower, CA 90706

P: 562-461-6308

1-800-823-4040

F: 562-461-5739

L. Strayer,, M.D. – oral and IV

2699 Atlantic Ave.

Long Beach, CA 90806

Cannot locate phone number

Dawn Hnat, M.D. (RHU) oral and IV

1401 Avocado Ave, Suite #403

Newport Beach, CA 92660

P: 949-721-6788

F: 949-721-1780

Harvey Heinrichs, M.D. – plastic surgery - 1968

1441 Avocado Ave. Ste 601

Newport Beach, CA 92660

P: 949-640-8576

F: 949-644-8763

Raphael Stricker, M.D. – 1978 IM/hemotology

450 Sutter ST

San Francisco. CA 94108

P: 415-751-7997

P: 415-399-1035

F: 415-399-1957

Cimock – not in AMA or phone directories

R. Ziegenbein, MD – infectious diseases - 1988

100 Pacifica – Ste 100

Irvine, CA 92618

P: 949-753-0670

Centre for Special Immunology

11190 Warner Ave. Suite 411

Fountain Valley, CA 92708

P – 714-751-5800

F – 714-751-5860

Jay Chung, M.D. – RHU - oral only and only if asked

Eureka Internal Medicine

2280 on Ave.

Eureka, CA 95501

P: 707-443-4866

Boniske, M.D. – RHU – will prescribe antibiotic under O’Dell

study parameters only.

5315 W. Hillsdale Patient must be able to

articulate position effectively

Visalia, CA 93291

P : 559-732-7877

F : 559-732-8524

J. , M.D. – FACAM - OB/GYN-GP – significant portion of

practice is

360 S. Clovis Ave. chelation – Position on IV and oral

antibiotics unknown. May be

Fresno, CA 93727 open

P: 559-251-5066

Dr. Green, M.D. Dr. Green does oral

& IV clindamycin and is very

Center of Optimum Health reasonable $60-$65 per

IV.

18153 Brookhurst Street

Fountain Valley, California 92708

P: 714-378-5656

F: 714-378-5650

M. Lesko, D.O. – FP – oral & IV

13983 Mango Dr. Suite 103

Delmar, CA 92014

P: 858-259-2444

J. Saccoman, M.D. – FP 1960 – oral & IV

505 N. Mollison Ave. Suite 103

El Cajon, CA 92021

P: 619-440-3838

Howe, M.D. (related someway to Dr. Saccoman)

Same address

Privitera, M.D. – oral and possibly IV

105 N. Grandview Ave.

Covina, CA 91723

P: 626-966-1618

Gordon MD – FP (oral & IV)

175 Airport Blvd.

Santa , CA 95403

P: 707-524-9640

Attended 99 RBF dr conf.

Wiskocil, MD

Kaiser Hospital Dept. of Medicine

1425 So. Main St.

Walnut Creek, CA 94596

On Saturday, August 30, 2003, at 10:52 AM, ette wrote:

> Hi everyone! I have had JRA since the age of three! Now they told me

> four months ago I have SD. Is this possible? Could they have missed

> dignosed me back them? It's funny because I always knew when I saw or

> met people who said they have RA that I looked nothing like they did

> or do. LOL

>

> I have no parents or relatives here. My parents have passed away and

> all I have now is two wonderful children to take care of since my now

> ex left us when I had breast cancer( about two years ago). I am 47

> now and soon to be 48. I am very short. does SD affect ones height? I

> have soooooooo many questions. I still have to find a good

> Rhumathologist(sp). We have only one out where I live in CA. It's a

> long way to LA. I can't drive that far anyway. LOL

>

> I would love to make some friends.

>

> Hugs,

>

> ette

>

>

>

[Guest guest]

Hi ette,

Welcome! You'll get lots of support here. There are several with SD, (I'm RA)

and lots of invaluable information to be found here. Tell us more about yourself

and I'm sure there are plenty here that will relate. You're not alone! Glad you

found us,

rheumatic New here!

Hi everyone! I have had JRA since the age of three! Now they told me

four months ago I have SD. Is this possible? Could they have missed

dignosed me back them? It's funny because I always knew when I saw or

met people who said they have RA that I looked nothing like they did

or do. LOL

I have no parents or relatives here. My parents have passed away and

all I have now is two wonderful children to take care of since my now

ex left us when I had breast cancer( about two years ago). I am 47

now and soon to be 48. I am very short. does SD affect ones height? I

have soooooooo many questions. I still have to find a good

Rhumathologist(sp). We have only one out where I live in CA. It's a

long way to LA. I can't drive that far anyway. LOL

I would love to make some friends.

Hugs,

ette

[Guest guest]

Hi, ette-

I'm so sorry to hear about your situation and being newly diagnosed with SD.

I, too, have SD(diagnosed in August of 2000).

Perhaps you were misdiagnosed with JRA as a child. You should speak with

others at this site who have RA. They will be able to help you with your

questions about that particular disease. I'm sure you'll get many responses to

your letter--It sure touched me.

I have had tremendous relief from the SD since starting the AP. If you are

interested in it, please find a rheumatologist willing to start you on it.

Maybe the veterans at this site know of a doctor in your area of California.

*Ethel, Chris- Can you help?*

Good luck to you, ette!

Patti

rheumatic New here!

Hi everyone! I have had JRA since the age of three! Now they told me

four months ago I have SD. Is this possible? Could they have missed

dignosed me back them? It's funny because I always knew when I saw or

met people who said they have RA that I looked nothing like they did

or do. LOL

I have no parents or relatives here. My parents have passed away and

all I have now is two wonderful children to take care of since my now

ex left us when I had breast cancer( about two years ago). I am 47

now and soon to be 48. I am very short. does SD affect ones height? I

have soooooooo many questions. I still have to find a good

Rhumathologist(sp). We have only one out where I live in CA. It's a

long way to LA. I can't drive that far anyway. LOL

I would love to make some friends.

Hugs,

ette

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Sorry, Chris. I posted my note to ette before reading your note to her.

Thanks for proving me right--There are a lot of us out there who care!

Patti

Re: rheumatic New here!

Dear ette,

Here are the doctors we have listed in California. Dr. Franco in

Riverside, CA, is one of the most experienced rheumatologists in the

world with antibiotic therapy. These diseases are usually misdiagnosed

and there is often a crossover between the symptoms. Dr. Brown believed

that several of these diseases are all manifestations of the same

problem and treated all alike. So antibiotic therapy can be used

whether you have JRA, RA, SD.

I guess we in this group would say that you don't need a good

rheumatologist - you need a doctor who will give you antibiotics. There

are now 900 people in this group and so you've found many people who

are very happy to help you and be your friend, me being one Hope to

hear back from you soon

Chris.

Murray R. Susser, MD (FP)

2211 Corinth Ave. - Suite 204

Los Angeles, CA 90064

P : 310-966-9194

Ellen Blanton, M.D. - RHU -not on AMA list

Desert Orthopedic Center phone directory shows: Mirage

Medical Group

39000 Bob Hope Dr. F1 2

One Hawkeye Park

Rancho Mirage 92270

69-844 Hwy 111 - Ste A

P: 760-568-2684

Rancho Mirage, CA 92270

P: 760-770-4166

F: 760-770-4048

Herbert M. Fisher, M.D. (RHU-IM) 1964

Burlingame Pacifica Medical Group

1828 El Camino Real, Suite 807

Burlingame, California 94010 (near San Francisco),

P: 650- 697-4195.

A. Franco, M.D. (rheumatologist - IV and oral)

Andre P. Lallande, D.O. (June 2000)

Arthritis Center of Riverside

4000 14th Street - Suite 511

Riverside, CA 92501

P : 909-788-0850

F : 909-788-4966

n Whitaker, M.D.

Svetlana Stivi M.D.

Whitaker Wellness Clinic

4321 Birch St.

Newport Beach, CA 92660

P : 949-851-1550 or 800826-1550

P : 949-851-1550

Accepts Medicare but no other private insurance

Joanne S. Garofalo, M.D. - not on AMA list

122 S. Ave.

Santa Barbara, CA 93111

P: 805-964-3541

Hans Gruenn, M.D. - not listed with AMA

bell Medical Group,

12732 Washington Bl., Suite D,

Los Angeles, CA 90066-4104.

P: 310-822-4614

J. Joy Boggess, MD (IM)

4 South Forest Road - Suite 2A

Sonora, CA 95370

P: 209-533-0333 -no medicare

Jung, MD -using AP

21700 West Golden Triangle Rd. - Suite 105

Saugus, CA 91350

P: 661-259-9800

Harmon M.D, - 1962

M.E.A. Health Care, Allergy Center

41800 Washington St., Suite 110

Bermuda Dunes, CA 92201. Indio

P: 760-345-2696.

Craig Jace, PAC, L Ac, and Dennis Schults, D.O.

Jace Medical Inc.,

6399 Wilshire Blvd., Suite 501,

Los Angeles CA 90048.

P: 323-782-8510

, D.O.

Western University

360 E. Mason Blvd.

.

Pomona, CA

P: 909-865-2565

Dr. Kanwal Khanna, M.D. (RHU) 1984

1429 College Ave. - Ste M

Modesto, CA. 95350 (S. of Sacramento, N. of Fresno)

P: 209 524 1666.

F: 209-524-1558

Krishan S. Khurana, M.D. (IM-RHU) - 1971

2220 East Fruit Street - Suite 216

Santa Ana, CA 92701

P: 714-547-0969

Leonard Klepp, M.D., - not listed on AMA directory

16311 Ventura Blvd, Suite 845,

Encino, CA 91436.

P: 818-981-5511

Edwin H. Krick, M.D. (RHU) 1961

Dept. of Medicine

11370 St.,

Suite 3100,

Loma CA 92354.

P: 909-796-4860

Stresses diet, exercise, stress reduction & prevention

A. Kunin, M.D., GP - 1955

2698 Pacific Ave.,

San Francisco, CA 94115.

P: 415-346-2500.

En Ling, M.D. - IM - 1986

West Valley Clinic or maybe Camino Medical Group

7225 Rainbow Drive,

San , CA 95129.

P : 408 366 0595

Maher Musharbash, M.D. (Diplomate of the American Board of Internal

Medicine)

41593 Winchester Rd. Ste. 101

Temecula, CA 92587

909 719 1111

Hitendra H. Sha, M.D. - not on AMA list

San Jacinto Medical Clinic

229 W. 7th St.,

P.O. Box 417,

San Jacinto, CA 92581.

P: 909-487-2550.

Jo Schulman, M.D. RHU - 1988

Scripps Institute,

San Diego, CA. 92121

Spiegel, M.D. - RHU - 1973

Sansum Medical Clinic,

317 W. Pueblo St.

Santa Barbara, CA 93102

P: 805-682-2621.

C. Wakefield, Jr., M.D. 1964

18988 Ave., Suite D,

Saratoga, CA 95070.

P: 408-366-0660

F: 408-366-0665.

Mark Drucker, M.D. contacted us 12-7-99 - FP - 12 years

Center for Advanced Medicine

4403 Manchester Ave. #107

Encinitas, CA 92024

P: 760-632-9042

F: 760-632-0574

760-729-4777

http://www.ctradvmed.com - RiSoTriene for diabetes

Member of American Academy of Anti-Aging

Diane E. Tjornhom, M.D. RHU - 1989

Bellflower Kaiser Permanente

Arthritis & Rheumatology Dept.

9400 East Rosecrans Ave.

Bellflower, CA 90706

P: 562-461-6308

1-800-823-4040

F: 562-461-5739

L. Strayer,, M.D. - oral and IV

2699 Atlantic Ave.

Long Beach, CA 90806

Cannot locate phone number

Dawn Hnat, M.D. (RHU) oral and IV

1401 Avocado Ave, Suite #403

Newport Beach, CA 92660

P: 949-721-6788

F: 949-721-1780

Harvey Heinrichs, M.D. - plastic surgery - 1968

1441 Avocado Ave. Ste 601

Newport Beach, CA 92660

P: 949-640-8576

F: 949-644-8763

Raphael Stricker, M.D. - 1978 IM/hemotology

450 Sutter ST

San Francisco. CA 94108

P: 415-751-7997

P: 415-399-1035

F: 415-399-1957

Cimock - not in AMA or phone directories

R. Ziegenbein, MD - infectious diseases - 1988

100 Pacifica - Ste 100

Irvine, CA 92618

P: 949-753-0670

Centre for Special Immunology

11190 Warner Ave. Suite 411

Fountain Valley, CA 92708

P - 714-751-5800

F - 714-751-5860

Jay Chung, M.D. - RHU - oral only and only if asked

Eureka Internal Medicine

2280 on Ave.

Eureka, CA 95501

P: 707-443-4866

Boniske, M.D. - RHU - will prescribe antibiotic under O'Dell

study parameters only.

5315 W. Hillsdale Patient must be able to

articulate position effectively

Visalia, CA 93291

P : 559-732-7877

F : 559-732-8524

J. , M.D. - FACAM - OB/GYN-GP - significant portion of

practice is

360 S. Clovis Ave. chelation - Position on IV and oral

antibiotics unknown. May be

Fresno, CA 93727 open

P: 559-251-5066

Dr. Green, M.D. Dr. Green does oral

& IV clindamycin and is very

Center of Optimum Health reasonable $60-$65 per

IV.

18153 Brookhurst Street

Fountain Valley, California 92708

P: 714-378-5656

F: 714-378-5650

M. Lesko, D.O. - FP - oral & IV

13983 Mango Dr. Suite 103

Delmar, CA 92014

P: 858-259-2444

J. Saccoman, M.D. - FP 1960 - oral & IV

505 N. Mollison Ave. Suite 103

El Cajon, CA 92021

P: 619-440-3838

Howe, M.D. (related someway to Dr. Saccoman)

Same address

Privitera, M.D. - oral and possibly IV

105 N. Grandview Ave.

Covina, CA 91723

P: 626-966-1618

Gordon MD - FP (oral & IV)

175 Airport Blvd.

Santa , CA 95403

P: 707-524-9640

Attended 99 RBF dr conf.

Wiskocil, MD

Kaiser Hospital Dept. of Medicine

1425 So. Main St.

Walnut Creek, CA 94596

On Saturday, August 30, 2003, at 10:52 AM, ette wrote:

> Hi everyone! I have had JRA since the age of three! Now they told me

> four months ago I have SD. Is this possible? Could they have missed

> dignosed me back them? It's funny because I always knew when I saw or

> met people who said they have RA that I looked nothing like they did

> or do. LOL

>

> I have no parents or relatives here. My parents have passed away and

> all I have now is two wonderful children to take care of since my now

> ex left us when I had breast cancer( about two years ago). I am 47

> now and soon to be 48. I am very short. does SD affect ones height? I

> have soooooooo many questions. I still have to find a good

> Rhumathologist(sp). We have only one out where I live in CA. It's a

> long way to LA. I can't drive that far anyway. LOL

>

> I would love to make some friends.

>

> Hugs,

>

> ette

>

>

>

[Guest guest]

In a message dated 8/30/2003 7:43:06 PM Pacific Daylight Time,

pmccool@... writes:

We have only one out where I live in CA. It's a

long way to LA. I can't drive that far anyway. LOL

Hi ette,

I am also in California. It is not a bad place to be, medication wise, I

have not had a hard time getting my GP's to prescribe Doxycycline for me. I have

AS. Having JA and then SA makes since as they are all from the same genetic

marker, HLAB-27 positive.

I am in Santa Barbara Where you at?

Ann Pritchard

" Deep in the center of our beings

is an infinite wealth of love "

http://www.rheumatic.org/medhist.htm < latest published work.

http://groups.msn.com/TyroMedia/pictures < latest photos

Melungeon Music < 's Web Site

Robyn's Law = Please write your elected officals

[Guest guest]

Hey, ette,

Welcome!

I see this group has already given you lots of advice and welcomed you with

open arms-'tis a good feeling, huh?

Anyway, maybe you could describe your symptoms to the group as we all have

some form of connective tissue disease and we could help with the

confusion....

Good luck & take care!

Sally in Little Rock

rheumatic New here!

> Hi everyone! I have had JRA since the age of three! Now they told me

> four months ago I have SD. Is this possible? Could they have missed

> dignosed me back them? It's funny because I always knew when I saw or

> met people who said they have RA that I looked nothing like they did

> or do. LOL

>

> I have no parents or relatives here. My parents have passed away and

> all I have now is two wonderful children to take care of since my now

> ex left us when I had breast cancer( about two years ago). I am 47

> now and soon to be 48. I am very short. does SD affect ones height? I

> have soooooooo many questions. I still have to find a good

> Rhumathologist(sp). We have only one out where I live in CA. It's a

> long way to LA. I can't drive that far anyway. LOL

>

> I would love to make some friends.

>

> Hugs,

>

> ette

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi !

Welcome new member! In short -EFAs = good!

But you probably want a bit more information.

(a small " Late Talker " book!)

We know the DHA, and EPA (Omega 3's) from fish are more than just

healthy for all of us -but in regards to our children we are seeing

amazing results as you read in The Late Talker book. Here are some

recent articles on this too:

" In 1996 Purdue University researchers found that boys with low

blood levels of essential omega-3 fatty acids have a greater

tendency to have problems with behaviour, learning and health

consistent with attention deficit hyperactivity disorder (ADHD).

And there is a wealth of exciting anecdotal evidence that omega-3

supplementation produces dramatic improvements in children and young

people with other problems, such as dyslexia, dyspraxia (co-

ordination problems) and autistic-type disorders. "

http://www.timesonline.co.uk/article/0,,8126-1075683,00.html

Recent studies found that youngsters with learning disabilities such

as dyslexia, dyspraxia and attention deficit disorder (ADD) all had

deficiencies of essential fats such as DHA.

http://www.canoe.ca/NewsStand/LondonFreePress/Today/2004/03/24/393212.html

But if we or our children eat too much fish, one of the best sources

of essential fatty acids -we have to be careful today due to mercury

and other toxins -and with the Bush/EPA guidelines on how long

industry has to clean up mercury (vs. smog which is in a few years)

the damage could be much worse in years to come as it continues to

pollute our precious planet.

" The EPA's proposed mercury rule pledges to reduce mercury emissions

from coal power plants by 70 percent by 2018. Mercury is produced by

the combustion of fossil fuels. While coal-fired power plants aren't

the only contributor of mercury to the environment, they are the

largest unregulated source of mercury in the nation.

Critics of the proposal say it gives industry too much leeway and

time to reduce emissions. They say technology exists for a mercury

emissions reduction by 90 percent by 2008, which was mandated under

the Clinton Administration.

The proposal under the Bush Administration allows industries to swap

pollution credits to meet a national cap.

A March Los Angeles Times investigation found that parts of the

EPA's proposal under the Bush Administration contained paragraphs of

verbatim language supplied to the agency by utility lobbyists.

The letter Senate lawmakers sent to Leavitt on April 1 urged the

agency to think of the children and the environment.

" The Environmental Protection (Agency) current proposals on mercury

fall far short of what the law requires, and they fail to protect

the health of our children and our environment, " the letters

states. " According to many states, industry experts and past EPA

analyses, the technology to dramatically clean up these plants is

available and affordable. "

Deposited in water, mercury can be converted to methylmercury by

reacting with bacteria. In water, it's taken up by life through the

food chain. The concentration swells in larger predator fish, like

swordfish or king mackerel. "

http://www.naplesnews.com/npdn/news/article/0,2071,NPDN_14940_2798435,00.html

" New research in the United States and Japan now shows that mercury

concentrates in umbilical cord blood, meaning that babies receive a

higher exposure than their mothers, according to the EPA. If the

EPA's safety guidelines were adjusted to account for this

difference, nearly one in six pregnant women would be considered at

risk.

The most heartbreaking cases of mercury damage in children occurred

in the Japanese town of Minimata, where mercury waste contaminated

the fish that were the town's main food supply. The impact on

pregnant women themselves was slight, but their children were born

retarded, deaf, blind, unable to speak or with cerebral palsy.

But for most of the thousands of babies who have been exposed in the

womb, the effects are more subtle -- so subtle that they probably

will never be attributed to mercury. Although babies can be

routinely tested for lead poisoning, their blood is not checked for

mercury.

Dr. Gochfeld, a mercury specialist at the Environmental and

Occupational Health Sciences Institute in Piscataway, N.J., and a

professor at Wood Medical School, doesn't point to a

bassinet in the hospital nursery and say a child suffers

from " mercury poisoning. "

Instead, he points to a subtle loss of potential for thousands of

children. " It might reduce IQ by a few points, " says Gochfeld,

chairman of the state's mercury task force. " It might reduce motor

coordination, so that this child is someone we think of as a klutz.

It might make them unmusical. "

Studies have shown that children born to mothers with high mercury

levels were slower to talk, walk and develop fine motor skills. The

research, conducted in the Faroe Islands of the remote North

Atlantic, where fish and whale are dietary staples, found that

children exposed to more mercury had weaker memories and attention

spans. And the damage apparently is permanent. Follow-up studies

when the children turned 14 showed that their brains had not

recovered.

More worrisome, the damage was detected even at levels of exposure

previously thought safe.

New findings from the Seychelles, a fish-eating island nation in the

Indian Ocean, reveal a difference in brain activity for common

actions, such as moving a hand. Earlier research there had shown no

effects from mercury exposure. The latest results, presented at a

medical conference in Hawaii last month, startled Dr.

Lambert, head of New Jersey's Institute of Neurotoxicology and

Environmental Assessment in Piscataway, part of the University of

Medicine and Dentistry of New Jersey and Rutgers University.

A different side of the brain lit up in brain scans of children

exposed to higher mercury levels. " It's a rewiring of the brain, "

Lambert says. " These are things we're just beginning to understand. "

Mercury in the developing fetus causes permanent changes that depend

upon what Lambert calls " windows of susceptibility " : how great the

exposure, how long it lasts and what fetal development is taking

place at that instant.

Mercury's role in autism is also being explored in several studies

at the institute. Does prenatal exposure to mercury heighten

susceptibility? Does that lead to the regression seen in autism?

Animal studies at Lambert's institute have found that even low

levels of exposure harm brain cells -- they don't multiply as

frequently, and they don't form as many connections. " The exposure

can be at low levels and just for a short period of time, " Lambert

says. " It will have profound effects for the duration. "

The costs, when intelligence is lowered across a population, are

high: A drop of just five IQ points because of mercury contamination

doubles the number of children whose IQs fall below 70 and require

remedial help. True geniuses, on the other hand, become

merely " highly intelligent, " and society is deprived of the benefit

of their brilliance because of mercury.

The diminished lifetime earnings, when measured over an entire

society, amount to $2.3 billion a year, estimates McCalley,

a professor of community and preventative medicine at New York's

Mount Sinai School of Medicine.

McCalley, president of the advocacy group Physicians for Social

Responsibility, acknowledged that removing mercury from smokestacks

is costly, but he said: " There are numbers on the other side. There

are benefits.

" If the EPA proceeds with its mercury rule, " said McCalley, who

testified last month against Bush's mercury proposal, " we'll have

more children with lowered IQs who struggle to keep up in school,

who may require remedial classes or special education, and whose

lifelong earning capacity will be reduced. "

Mercury's dangers have been recorded ever since hat makers in the

mid-1800s used it as a felt stiffener, causing bizarre personality

changes in those who inhaled the fumes -- and inspiring the

expression " mad as a hatter. "

http://www.staugustine.com/stories/032704/new_2219109.shtml

Fortunately since mercury binds to protein -which is muscle of the

fish -high quality fish oil would be the safest way to ingest the

essential fatty acids without risk of mercury and other toxins -as

stated in numerous tests now. Below are links to support this

statement and more in an archive which may answer more questions!

" EFAs are now in baby formula and food, and EFAs come and are used in

a variety of formulas for children for various reasons. Mainly we

hear about the use of them for healthy brain development in regards

to children -but they are even proven to help prevent asthma

http://www.theage.com.au/articles/2004/02/20/1077072840758.html

And they may be coming to a school lunch near you -if you live in an

area of savvy parents

http://www.valleystar.com/localnews_more.php?id=51945_0_19_0_C

Regarding your specific question: (and to answer your question Chris)

ProEFA is an Omega 3 (DHA and higher EPA) formula with a small

amount of Omega 6 (GLA) The Omega 3 in the ProEFA is from fish oil -

not from the liver of the fish -so no vitamin A. Only fish oil made

from the

liver of the fish contain vitamin A.

Children's DHA is cod liver oil which since it's from the liver of

the cod fish, it naturally contains Vitamin A. Cod liver oil only

contains Omega 3 (DHA and EPA) about that point:

" Most of our experience is with one, 1.0 gram capsule of ProEFA

(Complete Omega) that contains 144 mg EPA, 99 mg DHA and 40 mg of

GLA. We know that this combination appeared to work well. There

were some other supplements used but we could not conclude anything

about them. I can only say that both EPA and DHA are important and

GLA appears to have an additional positive effect on speech.

ALA, linoleic and oleic acids in " The Total Omega " contribute very

little to the EPA, DHA, and GLA effect.

I see at least 2 possibilities that you could use if you decide to

make the transition from short-chain omega-3s in plants (flax seed

oil containing alpha-linolenic acid or ALA, C18:2n-3) to the long-

chain mixture of EPA (C20:5n-3) and DHA (C22:6n-3). These are DHA

Jr. (30 mg DHA and 20 mg EPA in a serving unit) and Coromega (350 mg

EPA and 230 mg DHA). Both of these have been anecdotally successful

in the past.

Coromega can be divided in two and taken one half in the morning the

other in the evening. If you choose this mode you will provide your

son with the equivalent EPA+DHA of 2 ProEFA capsules per day without

the GLA.

Flax seed oil or freshly ground flax seeds are an excellent source

of the essential omega-3 alpha-linolenic acid (ALA or LNA) which is

the quintessential parent member of the omega-3 family of essential

fatty acids (EFAs). The body transforms it into EPA and the EPA

into DHA. This transformation is very inefficient (the yield is

about 10%) and is further inhibited by over consumption of omega-6

fatty acids from most vegetable oils or certain disease states.

Therefore, it is advisable to independently consume also ready made

EPA and DHA from good quality fish of from high quality fish oil

supplements. Some recommended intakes are listed on the

Introductory lecture on EFAs that I gave at the First Conference on

Therapy of Verbal Apraxia, July 23-24, 2001, town, NJ. (

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

The CHERAB Foundation's positive research results on potential

improvement in speech following EFA supplementation are based

on the use of ProEFA (Complete Omega) and that contains also

another essential fatty acid, GLA which is an omega-6 fatty acid.

The latter appears to be beneficial to children with apraxia. It is

not present in flax seed/flaxseed oil.

None of these materials present with any known side effects or

known toxicity in an otherwise healthy person. Nevertheless, we

advise every user of supplements to use them under medical

supervision. We don't know your child and we cannot provide you

with medical advice.

Sincerely,

Katz, Ph.D. "

About mercury and fish oil (vs. eating fish)

" Fish oils have been tested for various heavy metals like mercury

and there has been enough preliminary proof through studies, as well

as theory from reputable sources, that as I've posted many times

I've heard that the oils from fish may be the safest way to get the

benefits of the EFAs without the toxins due to the fact that mercury

etc. binds to the proteins/muscles of the fish.

" Measurement of mercury levels in concentrated over-the-counter fish

oil preparations: is fish oil healthier than fish? "

" CONCLUSIONS: Fish are rich in omega-3 fatty acids, and their

consumption is recommended to decrease the risk of coronary artery

disease. However, fish such as swordfish and shark are also a source

of exposure to the heavy metal toxin, mercury. The fish oil brands

examined in this manuscript have negligible amounts of mercury and

may provide a safer alternative to fish consumption. "

Division of Laboratory Medicine, Department of Pathology,

Massachusetts General Hospital and Harvard Medical School, Boston,

Mass 02114, USA.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\

ct & list_uids=14632570

And one other thing to keep in mind for those like me who do eat

both fish and take fish oil, there are toxins in the fish you eat

that won't be in the oil For example while mercury etc. binds to

the protein (muscle of the fish) so it's not in the oil of the

fish. From what I've read -the largest problem with fish oil itself

is rancidity. Oxygen and fish oil doesn't mix well.

Consumer Reports had this to say (most likely because toxins in

many cases bind to the protein and most oils are not tested for

rancidity)

" Consumer Reports tested 16 top-selling fish-oil pills which, like

other supplements, aren't closely regulated by the FDA.

Consumer Reports' Metcalf says the test results are

reassuring, " We found that all 16 brands that we tested had the

amount of Omega-3s that they said they did, which is good news. And,

we don't always find that with supplements. "

Since fish can contain toxins, Metcalf says Consumer Reports also

checked the supplements for purity, " We tested for three kinds of

toxins that often appear in fish — mercury, dioxin, and PCBs. "

Testers didn't find significant levels of toxins in any of the pills

tested, so you don't have to worry about contaminants. "

http://abclocal.go.com/kfsn/features/consumerwatch/consumer_070303_omega3.html

" The omega-3 fatty acids offer some unique benefits, should they

prove to be truly effective mood stabilizers. The advantages of the

omega-3 fatty acids as mood stabilizers include the apparent acute

efficacy in both the manic and depressive phases of bipolar

disorder, their lack of toxicity, as well as high patient

acceptance. In addition, omega-3 fatty acids confer some health

benefits during chronic use, such as possible reduction in the risk

of a fatal myocardial infarction. In addition, the omega-3 fatty

acids have no documented adverse drug interactions, and appear to be

safe (and possibly beneficial) in pregnancy and in children. "

http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html

" I had the wonderful opportunity to hear ph Hibbeln, M.D., Chief,

Outpatient Clinic National Institute of Alcoholism and Alcohol

Abuse, NIH, Bethesda, land at the First Apraxia Conference

http://www.cherab.org/news/scientific.htm lecture about the

importance of PUFA -especially during pregnancy when you are growing

a brain inside you. If you don't consume enough PUFAs while

pregnant -the babies body will pull it from the mother's body. It's

his theory and research as to why so many mom's experience post

partum depression. http://www.beachpsych.com/pages/cc46.html In

additionit is proven that the PUFAs are important for cognitive

ability.

http://neuroscience.nih.gov/Lab.asp?Org_ID=352

Here is a quote from the US Department of Agriculture,

Environmental Chemistry Laboratory, Agricultural Research Service,

20705, Beltsville, MD, USA

Brain-specific lipids from marine, lacustrine, or terrestrial food

resources: potential impact on early African Homo sapiens. The

polyunsaturated fatty acid (PUFA) composition of the mammalian

central nervous system is almost wholly composed of two long-chain

polyunsaturated fatty acids (LC-PUFA), docosahexaenoic acid (DHA)

and arachidonic acid (AA). PUFA are dietarily essential, thus normal

infant/neonatal brain, intellectual growth and development cannot be

accomplished if they are deficient during pregnancy and lactation.

Uniquely in the human species, the fetal brain consumes 70% of the

energy delivered to it by mother. DHA and AA are needed to construct

placental and fetal tissues for cell membrane growth, structure and

function. Contemporary evidence shows that the maternal circulation

is depleted of AA and DHA during fetal growth. Sustaining normal

adult human brain function also requires LC-PUFA.Homo sapiens is

unlikely to have evolved a large, complex, metabolically expensive

brain in an environment which did not provide abundant dietary LC-

PUFA.

http://www.unl.ac.uk/ibchn/e_Link/cbpbbmb2002.htm

" The omega-3 fatty acids offer some unique benefits, should they

prove to be truly effective mood stabilizers. The advantages of the

omega-3 fatty acids as mood stabilizers include the apparent acute

efficacy in both the manic and depressive phases of bipolar

disorder, their lack of toxicity, as well as high patient

acceptance. In addition, omega-3 fatty acids confer some health

benefits during chronic use, such as possible reduction in the risk

of a fatal myocardial infarction. In addition, the omega-3 fatty

acids have no documented adverse drug interactions, and appear to be

safe (and possibly beneficial) in pregnancy and in children. "

http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html

Here is an archive answer to answer more on EFAs:

" I will use the following examples with the brand name ProEFA since

that's the formula/dosage that seems to work the best for most of us

(Efalex and EyeQ are similar Omega 3/6 formulas that also have good

reports) For any brand name of Omega 3/6 formula -you could make

the same formula by mixing together fish oil and either primrose or

borage seed oil if you prefer -or as found -another brand

name with a similar formula (and I hope also a good quality)

If you mix two fish oils together which is fine if you know why you

are doing that: Look at the amount of DHA, EPA (Omega 3) and the

amount of GLA (Omega 6) and then add them all together to see what

formula and dosage you now have is. So for those of you that ask -

you can mix any brand names together you would like -however what

you could change is the three things above (dosage, formula and

*quality (*if one of the companies you start using has rancid oils

which is not uncommon when it comes to fish oils -so make sure all

brands you use are pure) Keep in mind in anecdotal feedback done by

parents from all over through CHERAB -that pure Omega 3 or pure

Omega 6 either showed no results -or very little results in almost

all cases. Pure Omega 3 would include pure cod liver oil, fish oil,

flax seed oil without any Omega 6. So even though there is only a

small amount of GLA (Omega 6) in the formulas we found to be

successful -GLA appears to be important to be there for some

reason. GLA has anti-inflammatory properties which perhaps enable

to DHA and EPA to get to where it's needed in the brain?

Dosage of one capsule a day ProEFA that at the lowest dosage appears

to be the best -

148 mg EPA

99 mg DHA

40 mg GLA

Here is what many of us have found to be the best plan

anecdotally:

....start with the basic formula, one ProEFA a day, we

saw surges in a few days to three weeks which continued for months -

we then reached a plateau after around 6 months.

At this point we raised the dosage to two capsules of ProEFA a day

and once again had those surges which lasted again for months.

When we reached the next plateau after around a year, instead of

going to three a day - we squeezed 1/2 to one capsule of ProEPA into

the 2 capsules of ProEFA and for almost all of us that try -that

created another surge.

Over time -you may raise the dosage up higher -and you may slightly

change the formula to raise the Omega 3 over the Omega 6 ratio.

Most found raising the EPA vs. the DHA or GLA to be best -but

you need to know your own child, keep track of his progress through

both your own observations and that of the professionals -with the

advice of your child's doctor -to know what is best for him/her.

There is much more in the archives both here -as well as more

information at

http://www.cherab.org/information/indexinformation.html#diet

http://www.speechville.com

Since I receive lots of calls about this -I wanted to list the most

common changes in an apraxic or other speech disordered child on

EFAs from what I've read and heard and seen.

1. Increase in babbling or attempts at sounds.

2. Increase in imitation.

Changes also can be looked for in (what you see as positive or

negative)

sleep

attention

appetite

focus

behavior

stools

Next will come a breakthrough of something you were probably working

on for a bit -so you will be excited but will think " Well -I don't

want to get my hopes up we were working on that for awhile now -

maybe it's just a coincidence " However after the second or third

surge in a short period of time -and then another - you are pretty

sure things are different and it's at this point the professionals

and the rest of the family and your friends are noticing it too -

maybe about two to three weeks now.

OK -the next stage is pure elation and hope -you see the light and

no longer feel as desperate and want to share this new information

with everyone and anyone. As the months go by and your child

continues to progress at a much more rapid rate -you may even start

to doubt the original diagnosis -especially if you started EFA

supplementation at two -and perhaps the SLP that diagnosed the

apraxia who also was at first excited is starting to second guess if

the original diagnosis was correct as well.

Unless you have to stop the ProEFA (or other Essential Fatty Acids)

and literally have the chance to see the regression of acquired

speech and language skills, attempts, and changes in behavior like

we did with Tanner (and/or have a chance to again witness the second

surge when your child is put back on the EFAs) -that doubt will

probably remain somewhere in your mind and in others around your

child. So the " I told you that he would start talking when he was

ready " comments should be expected of course.

Up to this point is understandable to me -it's the point after this

that is confusing to me, and perhaps not the best stage for our

children and for raising awareness or having research done to find

out what is happening to our children and why. Perhaps because we

have truly hit a paradigm shift...

As Dr. Agin states the EFAs actually appear to be in some

ways " curing " the apraxic child -even those diagnosed with severe

oral and verbal apraxia, hypotonia, sensory and behavioral issues.

Especially those started at younger ages.

The child on ProEFA or some other EFA formula's like it no longer

fits the criteria of the classic definition of apraxia -and yet

doesn't fit the classic perception of what a late talker is either...

Some of the parents become more focused on other everyday activities

with their child and start to drift away from the support sources.

Problem with this attitude is that unless your child is really up to

speed on all aspects of speech and language, the support sources

that helped in the beginning will still benefit your child today.

ProEFA alone is not the only answer and until we know how and why it

works (or why in a handful of children it doesn't) we can't improve

on it "

And if your doctor says no to fish oil -there's always baby formula, food

http://www.beechnut.com/Our%20Baby%20Food/Article_First_Advantage.asp

=====

[Guest guest]

I'm sure many chuckled when you asked if we used EFAs! I am a big

fan of ProEFA but have not tried Efalex. I've had my 37 month old

on EFAs since he was 19 months old. I am sure they greatly assisted

his development. He is currently undiagnosed, but has overcome

truncal tone issues, oral motor awareness (mostly overcome) and is

physically sound.

It wasn't until I introduced ProEFA that Ian started 'talking'. He

went from a handful of words and TONS of babbling to 100 words and

attempted words in less than a few days. It was truly amazing. I

cannot explain it, nor do I feel the need to. I'm just happy it

happened. Ian is still far from typical, but he has turned the

first major corner to developing useful language.

Good luck to you. And, of course, welcome!

Pam

mom to Noah (7), Olivia (5.10) and Ian (37 months, undiagnosed with

motor planning problems, delayed speech and possible apraxia).

> Hi,

>

> I found this site from the Cherab web page (which I found by

reading

> The Late Talker). I have a 2 1/2 y.o. dd who is the light of my

life.

> She has mild CP and hypotonia. I'm increasingly concerned about

her

> speech and came here for support. We get speech services weekly

> through EI and are beginning private sessions as well. She has

about

> 5-10 'words' and many signs (some invented). She also loses words

> which is of concern.

>

> I'm curious if any of you have used Elafex or Pro EFA and had good

> results. I'm going to talk to the pedi this week.

>

> I'm looking forward to getting to know you. Thanks for reading.

>

> B>

[Guest guest]

Hi ,

Welcome to the group! WOW! You're on the right road, already reading " The

Late Talker " book! And now you're here! Your Daughter is great hands!!!

I can personally tell you that my son is progressing quite well on Complete

Omega (A.K.A . ProEFA) now that we have eliminated obsticles that inhibited

the EFA's from properly working (e.g. Reglan (metoclopramide) for the tx of

GERD). Since I took Chase off Reglan in Nov. 2003, his vocab has more than

quadrupled and he is consistantly putting 3 to 5 word sentances together

(still needs a lot of work on articulation, BUT he is trying, which is more

than I say prior to EFA's and stopping Reglan).

Kris

[ ] New Here!

> Hi,

>

> I found this site from the Cherab web page (which I found by reading

> The Late Talker). I have a 2 1/2 y.o. dd who is the light of my life.

> She has mild CP and hypotonia. I'm increasingly concerned about her

> speech and came here for support. We get speech services weekly

> through EI and are beginning private sessions as well. She has about

> 5-10 'words' and many signs (some invented). She also loses words

> which is of concern.

>

> I'm curious if any of you have used Elafex or Pro EFA and had good

> results. I'm going to talk to the pedi this week.

>

> I'm looking forward to getting to know you. Thanks for reading.

>

> B>

>

[Guest guest]

Welcome !

I have a 27 month old daughter with apraxia, Sensory intergration issues, and

difficulties with auditory learning (unknown etiology). She has been

receiving Early Intervention services since 18 months old. My daughter now has

about

20 word approximations and over 85 signs (some invented, some backwards!)

She has been on Pro Efa's since about 20 months old. We increased to 2 capsules

a day at age 2. They have made a tremendous difference for my daughter- she

had almost no words or signs prior to beginning the Pro efa's.

This is a great group- very knowledgable and supportive- I am glad you are

here! Welcome, welcome!

-Beth

[Guest guest]

My daughter is 7 1/2 and also has mild CP. This is a great site.

You'll get lots of good information. We tried the ProEFA and we saw

a speech surge. was 5 when we tried it.

Good luck!

Suzi

> Hi,

>

> I found this site from the Cherab web page (which I found by

reading

> The Late Talker). I have a 2 1/2 y.o. dd who is the light of my

life.

> She has mild CP and hypotonia. I'm increasingly concerned about

her

> speech and came here for support. We get speech services weekly

> through EI and are beginning private sessions as well. She has

about

> 5-10 'words' and many signs (some invented). She also loses words

> which is of concern.

>

> I'm curious if any of you have used Elafex or Pro EFA and had good

> results. I'm going to talk to the pedi this week.

>

> I'm looking forward to getting to know you. Thanks for reading.

>

> B>

[Guest guest]

HiJenn,

Welcome to the group! You will be in great hands with Cranial Tech.

Which location are you going to?

Sometimes the insurance is fine. Mine paid quite well with no hassle

at all but I was very lucky! Check out our database section and see

if your insurance carrier is listed.

Natasha

--- In Plagiocephaly , " jenandryantoo " <AKT30@C...>

wrote:

> Hi! I was so happy to find this group. My son will be 5

> months old next week and I " ve been worrying about him. His head is

> quite flat in the back.I've been repo'ing him since he was 2

> months. I don't really see a change. I am going to Cranial

> technologies on Wed. for a consultation. Has anyone been there?

> What should I expect? I am really worrying about the cost. I

don't

> know how we will pay for the band, if he needs it. The insurance

> stuff sounds pretty hellish.

>

> Jenn

[Guest guest]

Hello Jen

Welcome to the group. Glad you found us. CT has an outstanding

reputation, and ususally will not recommend banding unless needed.

Insurance is a tough one, but can be faught. There are many

insurances that have paid after appeals. What kind do you have?

Maybe you should see about pre authorization. CT also has a package

to help with that. Let us know how the consult goes.

Sandy Willow's Mom

Torticollis resolved

Cranio Germany Grad 02/04

--- In Plagiocephaly , " jenandryantoo " <AKT30@C...>

wrote:

> Hi! I was so happy to find this group. My son will be 5

> months old next week and I " ve been worrying about him. His head

is

> quite flat in the back.I've been repo'ing him since he was 2

> months. I don't really see a change. I am going to Cranial

> technologies on Wed. for a consultation. Has anyone been there?

> What should I expect? I am really worrying about the cost. I

don't

> know how we will pay for the band, if he needs it. The insurance

> stuff sounds pretty hellish.

>

> Jenn

[Guest guest]

Hi Jenn,

Welcome to the group! You are in great hands with Cranial Tech. They

will provide superb treatment for your son and at such a young age he

should get terrific results.

As for insurance problems, not every company denies payment, or makes

you jump through a bunch of hoops. My HMO paid 80% with just a

letter of medical necessity from the orthotist.

Good luck and ask us as many questions as you can think of!

- mom to Aidan

--- In Plagiocephaly , " jenandryantoo " <AKT30@C...>

wrote:

> Hi! I was so happy to find this group. My son will be 5

> months old next week and I " ve been worrying about him. His head is

> quite flat in the back.I've been repo'ing him since he was 2

> months. I don't really see a change. I am going to Cranial

> technologies on Wed. for a consultation. Has anyone been there?

> What should I expect? I am really worrying about the cost. I

don't

> know how we will pay for the band, if he needs it. The insurance

> stuff sounds pretty hellish.

>

> Jenn

[Guest guest]

Thanks for the welcomes!

We are going to CT in Paramus, NJ. is covered under Healthnet

and Horizon BCBS. I'm keeping my fingers crossed!

jenn

--- In Plagiocephaly , " jenandryantoo " <AKT30@C...>

wrote:

> Hi! I was so happy to find this group. My son will be 5

> months old next week and I " ve been worrying about him. His head

is

> quite flat in the back.I've been repo'ing him since he was 2

> months. I don't really see a change. I am going to Cranial

> technologies on Wed. for a consultation. Has anyone been there?

> What should I expect? I am really worrying about the cost. I

don't

> know how we will pay for the band, if he needs it. The insurance

> stuff sounds pretty hellish.

>

> Jenn

[Guest guest]

Hi Jenn and welcome to the group!

Dustie

--- In Plagiocephaly , " jenandryantoo " <AKT30@C...>

wrote:

> Hi! I was so happy to find this group. My son will be 5

> months old next week and I " ve been worrying about him. His head

is

> quite flat in the back.I've been repo'ing him since he was 2

> months. I don't really see a change. I am going to Cranial

> technologies on Wed. for a consultation. Has anyone been there?

> What should I expect? I am really worrying about the cost. I

don't

> know how we will pay for the band, if he needs it. The insurance

> stuff sounds pretty hellish.

>

> Jenn

[Guest guest]

Hi Lauri,

Welcome to the group! You will find that we all started somewhere

and had the exact same concerns as you are facing. You will be

required to do a " break in " period, once you receive the band. One

hour on, one hour off, etc. and then eventually after about a week,

your baby will work his way up to 23 hours a day. He will not have

to sleep in it for a few days. My son, Shane, did not have any

problems (first helmet was at 6 months). You will find Brady should

adjust fine as long as the helmet is a good fit. Do you know what

type of helmet Brady will be getting? Please take pictures of his

head at all angles so you can compare them later. Best of luck to

you and keep us posted. Stay strong as you are doing the right

thing for Brady:)

Mama to Shane almost 12 months

STARband #2

South Carolina

>

> Hi Everyone! I am Lauri and my son is Brady. He is 4.5 months old

and

> we have an appt in Winston Salem, NC on April 25th for him to get

a

> helmet. What I understand, they will be using a scan to measure

his

> head instead of casting, which I think is better. I do not know

what

> kind of helmet he will get. The back of his head is flat. He loves

> his back and hates his tummy!! We have tried repostioning but he

ends

> up on his back in his crib...the car seat probably doesn't help

> either!

>

> He is such a happy baby and usually fusses only when he is hungry

or

> sleepy. I am worried if this will effect his sleeping habits or if

it

> will irritate him. Any advice for a newbie?

>

> Thanks! Lauri

[Guest guest]

Lauri,

Don't worry, babies are amazing at adjusting to things. My son was

banded at exactly 5 mo and he could have cared less that he had it

on. He actually misses it when we have it off for cleaning now. A

properly fitted band should not bother the baby in anyway after the

first few days and the younger the better. Does Brady have any tort

issues and this is why he hates tummy time so and ends up back in his

sleeping position? Let me know and welcome to the group. I am Carol,

mom to Dominick 6mo. plagio/tort.

>

> Hi Everyone! I am Lauri and my son is Brady. He is 4.5 months old

and

> we have an appt in Winston Salem, NC on April 25th for him to get a

> helmet. What I understand, they will be using a scan to measure his

> head instead of casting, which I think is better. I do not know

what

> kind of helmet he will get. The back of his head is flat. He loves

> his back and hates his tummy!! We have tried repostioning but he

ends

> up on his back in his crib...the car seat probably doesn't help

> either!

>

> He is such a happy baby and usually fusses only when he is hungry

or

> sleepy. I am worried if this will effect his sleeping habits or if

it

> will irritate him. Any advice for a newbie?

>

> Thanks! Lauri