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Dear ,

Here is our list of Florida doctors - you'll see there are a couple in

Tampa. I know that Dr. Todd has treated some of this group and we

hear good things about him.

Baca, M.D., (rheumatologist, IV and oral)

950 N. Federal Highway Suite 115

Pompano Beach, FL 33062

305-781-3300

J. Borgmeier, M.D.

1600 36th Street

Vero Beach, FL 32960-4851

407-569-5773

Burks, M.D.,

Center for Integrative Medicine,

420 Nokomis Ave., South,

Venice, FL 34285.

941-488-8112.

S. Carson, M.D.

3913 Pine Limb Court

Tampa, FL 33614

813-882-4906

Chang, M.D., P.A.

923 Del Prado Blvd. - Suite 105

Cape Coral, FL 33990

813-772-2422

Dr. Harold W. Ph.D.,

Mycoplasma Research Institute,

P.O. Box 640040,

Beverly Hills, FL 34464.

email hwcmri@...

Dayton, D.O.,

Medical Center, Sunny Isles,

18600 Ave.,

Miami, FL 33160.

305-931-8484.

Grimes, (orthopedic physician/surgeon)

Flagler Hospital Doctors' Building,

US 1 South,

St. Augustine (near ville),

Florida.

Mayer, D.O., (IV and oral)

ph Di Stefano, NC,

8085 38th Ave.,

St. sburg, FL.

727-572-6745 or 727-344-3134

also at

4543 S. Manhattan Ave.,

Suite 103,

Tampa, FL 33611.

813-831-8888

E. Moreland, M.D.

333 W. Miami Ave.

Venice, FL 34285

Guillermo Oynick, M.D.

209 Palermo Pl.

Venice, FL 34285

Jay G.

5642 W. Atlantic Blvd.

Margate, FL 33063

305-974-3535

Harold G. , M.D. (FP)

& S. Todd (son), (IV and oral)

4406 S. Florida Ave. Suite 27

Lakeland, FL 33803

941-646-5088

fax 941-646-7534

Shearer,

Florida.

H. Sikes, M.D.

38135 Market Square

Zephrhills, FL 33540-2505

813-782-1234

D. Sladek (oral plus oral clindamycin)

2501 N. Orange Ave.

Suite 538

Orlando, FL 32804

407-896-8696

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  • 5 months later...
Guest guest

Hi a,

I have also had arthritis since my 20's and i am also 46! I have seen Dr

Whitman in N.J. and he is one of the best . He has been using the

antibiotics a long time and it would bewell worth your two and a half hour

drive. I live in Alabama and I'm thinking about going back to see him.I have

been on the AP for 10 years and they have helped me regain my life. I'm

still working on building up my immune system and I still haveoccasional

flares but nothing compared to the way I was. This group will be a great

support and source of info. Glad to have you with us1

susan c.

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Guest guest

In a message dated 08/07/2000 7:28:56 AM Pacific Daylight Time,

Sbcona@... writes:

<< I'm

still working on building up my immune system >>

Hi I was thinking about this in light of them finding at the Mayo clinic

that our T cells are aging prematurely. So how are you building up your

immune system? anyone out there who knows the answer to this I am listening

:-D

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Guest guest

, I am also a patient of Dr. Whitmans for 3 months now. I have Ra ,

Lupus and Myositis . I am doing much better now since seeing him. Luckily I

am only about 20 min from his Watchung office. He took me off the MTX and put

me on Arava. I am off all sleep meds now . I am on Minocin 50mgs MWF for the

last 3 months. He hopes to increase to 100mgs MWF in the fall when it cools

off a little. He said that sometimes the hot weather can be a problem with an

increase in the Minocin. I work outside giving riding lessons so maybe this

comes into play for me. I am doing so much better that I really have nothing

to complain about except trying to cut down the Prednisone has been the only

hard thing. I agree that he is a good and compassionate Doctor. Patti

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  • 9 months later...
Guest guest

hello and welcome!

rheumatic new to the group

Hello Everybody! I am new to the group and have been on antibiotic therapy for almost 6 months! Most of which has been one big herx. I am starting to feel much better switching from an every day dose of Minoocycline to intermittent dosing. I applaud anybody that can take Mino every day! I can't wait to start feeling the full effect and I am grateful to have found this treatment. I have had RA sero-negative for 3 1/2 years now. My doc also suspects early Fibromyalgia but has not diagnosed it yet. Hopefully because of the Min, he will never get to! I just wanted to say hello and I am so grateful to have found a group where the people are so friendly and supportive! I've been lurking for a while now. Thought I would start jumping in =0)

~Roseanne~To unsubscribe, email: rheumatic-unsubscribeegroups

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Guest guest

Roseanne,

Welcome to the group!! I think we all start out lurking I know I did!! I hope you find what you need here and please feel free to add to the discussions or ask questions people on here are great about digging up information if they don't have the answer, we are a family here. Glad you joined us!!!

Peace,

Sherry

Hello Everybody! I am new to the group and have been on antibiotic therapy for almost 6 months! Most of which has been one big herx. I am starting to feel much better switching from an every day dose of Minoocycline to intermittent dosing. I applaud anybody that can take Mino every day! I can't wait to start feeling the full effect and I am grateful to have found this treatment. I have had RA sero-negative for 3 1/2 years now. My doc also suspects early Fibromyalgia but has not diagnosed it yet. Hopefully because of the Min, he will never get to! I just wanted to say hello and I am so grateful to have found a group where the people are so friendly and supportive! I've been lurking for a while now. Thought I would start jumping in =0)

~Roseanne~

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  • 2 months later...

Welcome I am sharing my story as it resembles yours in a few ways.

I was diagnosed three years ago. I am 36 years old and also have three

little kids. my RA hit like a blizzard after a traumatic incident 6 months

earlier. I had it brewing for years, but the trauma pushed me over. I had a

titer of 646 RA. ANA of 360? or 300 something. Both have dropped to nearly

normal! something the doctor said was impossible. I knew instinctively I

had a serious infection. I refused all the traditional meds. I starved and

ate salad and fish for months and tried many different herbs. Finally 6

months after the diagnosis of RA (which I do have) my environmental md

discovered I had lyme disease. Although we had begun the AP Roadback

protocal a month before knowing I had lyme and other tick born infections.

I could not tolerate even the tiniest dose of minocin without nearly dying

(thats what it felt like) We tried most all the macrolides (biaxin, zith,

cipro, erythromycin) all were intolerable. Then we tried bicillin

(penicillin derrivative) injections that are traditionally used for

syphillis which is very similar to Lyme bacteria. After one week I was much

better. We did those injections for approx two months and then I was able

to step off from the penicillin to the tetracyclines or other macrolides. I

bounced back and forth with dose and drugs for a year or year and a half.

now I am trying to stay consistant with the Doxy which is a generic form of

minocycline.

What has helped me in determining to use Doxy (tetracycline family of drugs)

and the dose is 1. this group, 2. the Lyme disease groups, many of which use

doxy 3. the institute for molecular medicine and Garth Nicholson (gulf war

people) 4. the Biomeridian machine which is a machine that two of my doctors

use to help determine what drug, herb or other balance my body and what

organisms or metal etc are causing my body to be stressed. My kids have the

lyme bacteria from me via in utero. my husband has lyme (and a + RA titer)

from me sexually. I do not know when I was bitten or if I inheirted the lyme

from my mother. BUT when I use the Biomeridian machine and my joints are

very active and stressed, the machine can zone into the joint meridian to

find out what is the cause of the stress....IT SAYS BORELLIA BORGDORFERI

(LYME). It says this for my son who is 9 also and the machine says that

doxy and tetracycline balance that joint. (forgive me for rambling this

morning).

The long and short of my sermon is not that everyone has the same organisms

(but there is a lot of lyme out there). But that the tetracyclines are a

good choice because they can act on some many idfferent organisms like lyme,

mycoplasms (that you will often find with lyme), amebias etc. And when our

immune systems are challenged we get worn down to the point that we pick up

a variety of pathogens. Many organisms replicate slowly, so a turtle

approach may be more effective and easier on the system, ie mon. weds and

fri. small dose. lastly, it takes a long time to get better. stay with it.

YOu are on the right track. good luck, kathy meyer ps if you get lyme

testing, the results are very inaccurate which means a positive is positive,

but a negative may actually be a positive.

rheumatic New to the group

> Hi there to you all...

> My name is Kerry and on July 4th, I was told that I have Rheumatoid

> Arthritis. I'am 31 years old and I live in Canada. I'am married

> with

> 3 children and when I heard of the news I was devastated... I have

> done some research on Rheumatoid Arthritis and have a general idea of

> what is going on, but still am unsure that I in fact have this

> disease. The doctor told me that my Rheumatoid Factor was sitting at

> 126 and that it was extremely high, and though I do have some joint

> stiffness and feel pretty rough on some days, the majority of the

> time

> I feel not too bad. I'am waiting to hear from the nuclear sciences

> department of the local University for a bone scan, but am unsure

> about this sort of testing. I'am taking Naproxen for swelling of the

> joints...which I take 500mg 3 times a day and 6 extra strength

> tylenol

> a day....I'am not sure if this is doing any good either...maybe this

> is why I'am not as sore as I should be. The Rheumatologist said that

> when she first saw me, Clinically, she would never have guessed that

> I

> had RA, and actually initially diagnosed me with Fibromyalgia...she

> then ran more tests and found out that her diagnosis was wrong and

> that my Rheumatoid Factor was 4 times the normal and suggested the

> bone scan... When I read about this group, I thought this would be

> great to get involved in...because anything I have read so far over

> the internet has scared the daylights out of me....and am not sure

> what to expect with this disease....Does the RF at 126 mean that I

> actually have RA? Should I get this bone scan done? All these

> anti-inflamatory drugs are upsetting me...should I ask about the

> antibiotic treatment at this point? I'am scared and unsure what to

> do....If anybody can give me some information...or help...I would

> greatly appreciate it....

> Thank you

> Kerry

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

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Hi Kerry

Get on those antibiotics as soon as possible. They are what will make the

difference.

Personally I would take only the level of NSAIDS that you actually need.

Work out the level for yourself, though they do help stop joint damage. I

was given huge dosages at the start and thought I was cured until I vomited

them all up and resolved not to have any more. Then I rediscovered how much

pain was actually there and went on Celebrex.

Gail

> From: kandy@...

> Date: Mon, 20 Aug 2001 13:09:40 -0000

> rheumatic

> Subject: rheumatic New to the group

>

> Hi there to you all...

> My name is Kerry and on July 4th, I was told that I have Rheumatoid

> Arthritis. I'am 31 years old and I live in Canada. I'am married

> with

> 3 children and when I heard of the news I was devastated... I have

> done some research on Rheumatoid Arthritis and have a general idea of

> what is going on, but still am unsure that I in fact have this

> disease. The doctor told me that my Rheumatoid Factor was sitting at

> 126 and that it was extremely high, and though I do have some joint

> stiffness and feel pretty rough on some days, the majority of the

> time

> I feel not too bad. I'am waiting to hear from the nuclear sciences

> department of the local University for a bone scan, but am unsure

> about this sort of testing. I'am taking Naproxen for swelling of the

> joints...which I take 500mg 3 times a day and 6 extra strength

> tylenol

> a day....I'am not sure if this is doing any good either...maybe this

> is why I'am not as sore as I should be. The Rheumatologist said that

> when she first saw me, Clinically, she would never have guessed that

> I

> had RA, and actually initially diagnosed me with Fibromyalgia...she

> then ran more tests and found out that her diagnosis was wrong and

> that my Rheumatoid Factor was 4 times the normal and suggested the

> bone scan... When I read about this group, I thought this would be

> great to get involved in...because anything I have read so far over

> the internet has scared the daylights out of me....and am not sure

> what to expect with this disease....Does the RF at 126 mean that I

> actually have RA? Should I get this bone scan done? All these

> anti-inflamatory drugs are upsetting me...should I ask about the

> antibiotic treatment at this point? I'am scared and unsure what to

> do....If anybody can give me some information...or help...I would

> greatly appreciate it....

> Thank you

> Kerry

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

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Hi Kerry! Geoff Crenshaw here.

Pleased, but also saddened to make your acquaintance.

>> Date: Mon, 20 Aug 2001 13:09:40 -0000

From: kandy@...

Subject: New to the group

(snip) about this sort of testing. I'am taking Naproxen for swelling of

the

joints...which I take 500mg 3 times a day and 6 extra strength tylenol a

day....I'am not sure if this is doing any good either...maybe this <<

Long story short: You're in serious trouble and the road your

physician(s) have already started you on, and are likely to take you

down, will probably make you much worse, not better. Attacking symptoms

is not without it's cost.

If you can, before they take you any further, try getting off the

Naproxen & Tylenol using instead the herbal RheuMax and get started with

the Antibiotic Protocol (Minocin or doxycycline) as quickly as you can.

Rheumatic.org http://www.rheumatic.org has a list of treating physicians

all over the world, and we have many list members in Canada.

Regards, -----------------------

Geoff ** Usual Disclaimers **

-----------------------

The Formula of Life:

Ge12.2+2Sa7.12.13(1Ch17.12.14)+(Ps2+69.4\72/78.2+107.9)+

Is2.3/7.14\11.1-5/35.4-6(42.1-4+45.21+50.6+52.13)53+59.16+

Je31.15+Mi5:2=HaMoshiach

http://www.healingyou.org/ Nonprofit: Herbs, Homeopathics & supp's.

http://www.800-800-cruise.com/index-aff.html Make money & travel!

http://www.800-800-cruise.com/ Over a MILLION travel deals!

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  • 3 months later...

Welcome, Tricia!

To answer your question: YES! LOL. We feel this way. So upset that my

son, 5.3, has a LONG road ahead of him. He is not putting two words

together yet, and right now we're in our second day of intense

potty-training! He's a stubborn one!

Good luck to you with Madison. Have you read some of the previous posts?

Look into the ProEFA - you may want to try this with her.

~~

in PA

[ ] New to the group

> Hi all! Am new to the group and just wanted to get acquainted!

>

> My daughter, Madison, just turned 2 on Nov.5 and has just been

> diagnosed with apraxia. She has been in speech therapy for a little

> over a month. Originally the therapist said she had a " severe

> articulation disorder " , however after working with her these few

> weeks, she said she really believes it is apraxia. Madison tries so

> hard to say the words, they just don't come out right. She is very

> intelligent in all other areas and is a wonderful child (yes, I am a

> very proud Mother!)

>

> I am just starting to research this disorder and get info. Honestly,

> I am scared to death! I thought we would be in therapy a few months,

> and she would be talking, but it looks like we are in this for

> years. And I have to admit, it breaks my heart that I don't have

> a " perfect " child. Don't get me wrong, I love my baby with all my

> heart & am so thankful to have her, no matter if she never talks! -

> am just so sad of the struggles that she will have to face. Anyone

> else feel this way?

>

> Anyway, am looking forward to getting to know everyone, and hoping to

> find good info./advice!

>

> Tricia

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Hi Tricia!

I am fairly new to the group too. My son is about 31 mos and says

just a few words. We don't have an official diagnosis yet tho (not

sure WHY NOT) I have just caught up on all the posts, and have

several people to thank and reply to. You can't hardly miss a day

here! Just wanted to say that you have found a great board and group

of people! I have been just overwhelmed at the friendliness and

offers of help that I have received so far. I'm so very glad I found

it!

Paige

> Hi all! Am new to the group and just wanted to get acquainted!

>

> My daughter, Madison, just turned 2 on Nov.5 and has just been

> diagnosed with apraxia. She has been in speech therapy for a

little

> over a month. Originally the therapist said she had a " severe

> articulation disorder " , however after working with her these few

> weeks, she said she really believes it is apraxia. Madison tries

so

> hard to say the words, they just don't come out right. She is very

> intelligent in all other areas and is a wonderful child (yes, I am

a

> very proud Mother!)

>

> I am just starting to research this disorder and get info.

Honestly,

> I am scared to death! I thought we would be in therapy a few

months,

> and she would be talking, but it looks like we are in this for

> years. And I have to admit, it breaks my heart that I don't have

> a " perfect " child. Don't get me wrong, I love my baby with all my

> heart & am so thankful to have her, no matter if she never talks! -

> am just so sad of the struggles that she will have to face. Anyone

> else feel this way?

>

> Anyway, am looking forward to getting to know everyone, and hoping

to

> find good info./advice!

>

> Tricia

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hi tricia..welcome!!!....i have a 3 year old son who

is apraxic and i felt exactly the way you do when i

first found out...it is heartbreaking but i also feel

blessed to have him...like with any disability, no

matter how severe, it is a long, sometimes lifelong,

journey but you learn to deal with it and your

daughter will benefit from your perseverence...you are

doing the right thing by reading and educating

yourself about apraxia ...you learn as you go along

and the support you will get from this group is

amazing!..good luck and hope to talk soon!!

joann from nj

--- trimadsco@... wrote:

> Hi all! Am new to the group and just wanted to get

> acquainted!

>

> My daughter, Madison, just turned 2 on Nov.5 and has

> just been

> diagnosed with apraxia. She has been in speech

> therapy for a little

> over a month. Originally the therapist said she had

> a " severe

> articulation disorder " , however after working with

> her these few

> weeks, she said she really believes it is apraxia.

> Madison tries so

> hard to say the words, they just don't come out

> right. She is very

> intelligent in all other areas and is a wonderful

> child (yes, I am a

> very proud Mother!)

>

> I am just starting to research this disorder and get

> info. Honestly,

> I am scared to death! I thought we would be in

> therapy a few months,

> and she would be talking, but it looks like we are

> in this for

> years. And I have to admit, it breaks my heart that

> I don't have

> a " perfect " child. Don't get me wrong, I love my

> baby with all my

> heart & am so thankful to have her, no matter if she

> never talks! -

> am just so sad of the struggles that she will have

> to face. Anyone

> else feel this way?

>

> Anyway, am looking forward to getting to know

> everyone, and hoping to

> find good info./advice!

>

> Tricia

>

>

>

>

__________________________________________________

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Hello, and first of all I would like to say Welcome and I am fairly new here

myself but, I love this site and all of the support from other parents.

Second, I felt just like you, and I still do at times, but then I remind

myself that everything happens for a reason. There is a reason that our

children are this way and someday hopefully we will find out what it is.

Maybe they are to do something spectacular with what they are learning do to

by having this, I don't know. I am finding that rather than feeling sorry

for my daughter, I am learning to admire her in many ways. Living life day

to day knowing what you want to say and not being able to verbalize it would

be devastating to me, but she handles it so incredibly well. I just look at

her and see that she does not pitty herself, she just feels like an ordinary

little girl, who is very much a tomboy. She loves to make people laugh and

she just enjoys life. I am learning a lot from her. I admire all of these

children, they have the patience of saints!!!

Third, perhaps you should try the ProEFA read the information about it and

decide for yourself, I have started it recently and I am hoping it makes

great improvements for my daughter.

Welcome once again,

Sheila

>From: trimadsco@...

>Reply-

>

>Subject: [ ] New to the group

>Date: Sat, 24 Nov 2001 10:21:43 -0000

>

>Hi all! Am new to the group and just wanted to get acquainted!

>

>My daughter, Madison, just turned 2 on Nov.5 and has just been

>diagnosed with apraxia. She has been in speech therapy for a little

>over a month. Originally the therapist said she had a " severe

>articulation disorder " , however after working with her these few

>weeks, she said she really believes it is apraxia. Madison tries so

>hard to say the words, they just don't come out right. She is very

>intelligent in all other areas and is a wonderful child (yes, I am a

>very proud Mother!)

>

>I am just starting to research this disorder and get info. Honestly,

>I am scared to death! I thought we would be in therapy a few months,

>and she would be talking, but it looks like we are in this for

>years. And I have to admit, it breaks my heart that I don't have

>a " perfect " child. Don't get me wrong, I love my baby with all my

>heart & am so thankful to have her, no matter if she never talks! -

>am just so sad of the struggles that she will have to face. Anyone

>else feel this way?

>

>Anyway, am looking forward to getting to know everyone, and hoping to

>find good info./advice!

>

>Tricia

>

>

>

_________________________________________________________________

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Hi Tricia and Welcome to the group!!

I am Carnell and the Executive Director of Global Support for the CHERAB

Foundation. In other words, I am helping people start support groups and get

connected with others in their area who are also dealing with this disorder -

and I want to network these support groups and individuals to others world wide.

Can you imagine the amount of information that can be spread, and the support

will be incredible!!

Where do you live?? I will send you a list of others in your area you can

contact, and any support groups that are in your area!! My son, , is 4

years old and was diagnosed with apraxia (dyspraxia) at the age of 2 1/2. I so

understand where you are and how scared you are...I have been there. Although I

still get scared at times, as well as angry, sad, depressed, etc. I can now see

the light at the end of the tunnel. I know that light has always been there, it

was just hidden for a LONG time. You can read my son's story at

www.verbalDyspraxia.com and see where he was when he started (non-verbal) and

where he is now (talking all the time, but major articulation issues and motor

planning issues). It helps to read about other children who are like your own,

you won't feel so alone.

Once again, welcome, we all look forward to hearing more from you - and we are

all here to listen and offer " mom " advice as well as " professional " advice.

Looking forward to hearing from you as to where you are!!

Carnell

North Carolina

CHERAB Support

www.verbalDyspraxia.com

[ ] New to the group

Hi all! Am new to the group and just wanted to get acquainted!

My daughter, Madison, just turned 2 on Nov.5 and has just been

diagnosed with apraxia. She has been in speech therapy for a little

over a month. Originally the therapist said she had a " severe

articulation disorder " , however after working with her these few

weeks, she said she really believes it is apraxia. Madison tries so

hard to say the words, they just don't come out right. She is very

intelligent in all other areas and is a wonderful child (yes, I am a

very proud Mother!)

I am just starting to research this disorder and get info. Honestly,

I am scared to death! I thought we would be in therapy a few months,

and she would be talking, but it looks like we are in this for

years. And I have to admit, it breaks my heart that I don't have

a " perfect " child. Don't get me wrong, I love my baby with all my

heart & am so thankful to have her, no matter if she never talks! -

am just so sad of the struggles that she will have to face. Anyone

else feel this way?

Anyway, am looking forward to getting to know everyone, and hoping to

find good info./advice!

Tricia

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Welcome to the group.

My insurance pays for therapy, but my son has the diagnosis of mild

Cerebral Palsy. I have been told that this is the norm; that he can

have the Apraxia as secondary.

Angi

[ ] New to the group

My daughter Hannah is 2, 10 mos and has recently been diagnose with

apraxia /

dyspraxia (I'm not sure of the difference and they aren't sure of the

right

" label " yet). She's been in EI since July and has made good progress,

with a

good vocab just its unintelligable, muddled and she has problems

responding

to questions with the correct response. Cognatively she measures bright

though. We are just in transition to the school system and hope to get

a

place at the speech disorders unit which happen to be at our local

school.

If any one knows any tips to get insurance to pay for therapy I would

love

them, mine won't pay out as they say all toddlers have bad speech bring

her

back at 4.

bel Cowley

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Hi bel and welcome!

Insurance is a tough one. From my experience never use a diagnosis

that indicates a " delay " . This is a red flag that goes off!

Check out the http://www.apraxia.cc WEB page. There is a section for

insurance tips. It also references an old post which lists the codes

which are good to use.

If you can't find it, please write again and I'll check the archives.

Good luck.

> My daughter Hannah is 2, 10 mos and has recently been diagnose with

apraxia /

> dyspraxia (I'm not sure of the difference and they aren't sure of

the right

> " label " yet). She's been in EI since July and has made good

progress, with a

> good vocab just its unintelligable, muddled and she has problems

responding

> to questions with the correct response. Cognatively she measures

bright

> though. We are just in transition to the school system and hope to

get a

> place at the speech disorders unit which happen to be at our local

school.

> If any one knows any tips to get insurance to pay for therapy I

would love

> them, mine won't pay out as they say all toddlers have bad speech

bring her

> back at 4.

>

> bel Cowley

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  • 3 weeks later...

Hi and welcome to the group. How wonderful Owen is doing. Sounds

like the pre-school program and therapy really helped him. You didn't

mention if he was taking any EFA supplements. They may help with the

attention issues.

My son sounds like at that age. He started Early

Intervention at 2 yrs 3 mo. Like he maybe had 20 intelligible

words and lots of pointing and grunting. He was social in comfortable

surroundings shy around new people and situations. He was diagnosed

with apraxia in June and started the Pre-school program in July. We

also increase his therapy to 2X a week privately along with 3X

individual at school.

He began the EFA supplementation on October 14th. His expressive

language took off right away and he definitely seemed more focused

with more energy. His coordination has improved somewhat but he also

started OT. I give him 1 capsule 1X a day. I mix it in vanilla yogurt

or applesauce. When you mix it in juice, sometimes it separates.

In terms of the receptive stuff I can totally relate. I too sometimes feel it is

a crap shoot when asking him to do something. We are keeping an eye on auditory

processing issues. Although with his expressive speech improving, receptive

seems to be improving as well.

I guess I can say that 6 months ago I was feeling like you not

knowing what the future would hold. Now after 6 months of almost

daily therapy he can put 3 words together. He now tries to repeat new

words and his articulation has improved. His (and my) frustration

levels are reduced greatly with him expressing himself. His new thing

is Come here Mommy! Music to my ears.

You don't mention if is apraxic. There are different therapy

approaches if he is. Frequent one-on-one therapy is so important. I

posted some books yesterday that may be of some help to you if

is apraxic when writing his IEP. Check the HTTP://APRAXIA.CC web site

for more info.

Have patience and you know from Owen that hard work and appropriate

therapies are the road to follow. You did an awesome job with him and

I am sure that you will do an awesome job with .

Have a great holiday and please keep us posted on 's progress.

Mom to 3.6 (oral and verbal apraxia and low tone)

and 22 months (bundle of energy and a chit chatterer)

> i am a mother of two boys: Owen, who is almost 6yrs, and , who

is

> almost 3yrs. i feel compelled to tell my story so i hope you will

> indulge me. both boys were born premature (Owen @ 34 weeks and

> @ 31 weeks). Owen at 3 yrs had a good vocabulary but our doctor was

> concerned that she couldn't understand 75% of what he said; so, we

> had him evaluated, and found out that had a expressive/receptive

> speech delay with some characteristics similar to an autism

spectrum

> disorder. well with speech theraphy and an interventive preschool

> program, owen is now 5yr and in mainstream kindergarten with

> itinerate preschool services (ot and speech). he does not test with

> an expressive delay anymore but still has a receptive delay, fine

> motor struggles, and some attention issues by afternoon. the

> psychologist says that if he has PDD he is so high functioning that

> it is really a difficult call to make.

> well this brings me to my two year old. he seems more social

to

> his family than owen had been but he is just not talking to us. he

> has some " real " words but mainly has a language of his own. he

> pushes/pulls/points but on his evaluation he was shown to have a

> significant delay in his receptive/expressive skills and also

> appeared to the team @ OSU to have Autism like issues. The team

gave

> him " a tenative diagnosis of autism to be re-evaluated in two

years " .

> I just don't see Autism in but I'll be the first one to admit

> that he is not where he should be developmentally. I have a friend

> who got started on the ProEFA. we put one capsule in his

morning

> juice (either orange or lemonade) and he doesn't even seem to know

it

> is there. I'm really concerned about where 's communication

> skills are at (at 3yrs they're suppose to have 500 words and

answering

> where, who, etc type questions), we are lucky to have 20 words and

> it's a hit or miss as to whether he will " go get the ball/book,

etc " .

> He seems intellegent to us but there's this big communication gap!

>

> Am i giving him the correct amount of ProEFA (he's been on one

> capsule for the last 5 days). How long before we will see the

results

> (he has speech and OT once a week since september).

>

> Does anyone have any similar histories that might give us some

> encouragement. i just need some hope that eric will talk to us and

> have conversations at some point (hopefully by the time he'd go to

> kindergarten)

>

> Long-winded and concerned

> lisaspiper

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  • 1 month later...

It took me eight months to decide to chelate my son

and I have not looked back. He is doing wonderfully

with chelation. It is hard, rough and at times scary

but nothing like what has happened to our kids from

vaccines. Vicky

--- rcaj_2000a <rcaj_2000@...> wrote:

> Hello. I have a 5.5 yr old son, Adam. He has been

> recently

> diagnosed with Asperger's syndrome. We have looked

> into the

> chelation therapy on and off for the last few

> months. A friend told

> us that the risks are far greater than the benefits

> -- have any of

> you found that to be true? What are the risks? How

> much does this

> type of thing cost? And can you do it on your own

> or do you have to

> work with a doctor? Also, does it help with high

> funtioning autism or

> aspergers just as well as with classic autism? Any

> information would

> be helpful. Thanks. Christie

>

>

__________________________________________________

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Hello Mellisa,

You mentioned yeast treatment in your post.

What treatment did you use?

There are soo many things out there for yeast.

A person can get pretty confused at times.

Thanks,

.

At 10:03 15/02/2002 -0800, you wrote:

>Hi, I'm new to the group. Been reading the posts for

>a few weeks now. I have a five year old, PDD-NOS, and

>a two year old, that we suspected may be on the

>spectrum(plus two NT kids). I've had my two boys gfcf

>for six months. I gradually added various

>supplements, then treated for yeast with nystastin.We

>saw some very nice results in both boys. My two year

>old began to talk within days of the diet, then as

>supplements and yeast treatment began, his eye contact

>returned,he stopped stimming, and toe walking, and he

>began to speak in small sentences.His social skills

>are age appropriate. I consider the two year old very

>much a typical child now.

>

>My five year old, also improved significantly,

>especially after the yeast treatment. His attention

>span increased dramatically, his conversational skills

>improved, the repetitive language ceased, stimmimg is

>reduced(he likes to walk and run around the room), He

>learned to read, write and spell, more or less on his

>own. All his teachers and therapists noticed a change

>as well. I had not mentioned anything that we were

>doing, at the time. I have been experimenting with

>enzymes and electrolytes. We have the Houston

>enzymes, and have been using them for about a week

>now. I haven't really noticed much of anything,

>except more normal BM's. My son has pretty much had

>diahrrea his whole life. It improved with the diet,

>but it is pretty much normal with enzymes. The

>electrolytes, are helping too, I think. My son always

>seemed to be dehydrated. If anyone is interested, I

>use the e-lyte concentrate for electrolytes. He still

>has a long way to go, but we are optimistic he's on

>his way back.

>

>Great group, lots of great info.!

>

>

>__________________________________________________

>

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  • 1 month later...
Guest guest

Hi,

Valtrex is an antiviral medication.

Dr. Goldbergs testimony and another paper I'll link should give you a basic

idea about what we are doing and why.

Cheryl

http://www.house.gov/reform/hearings/healthcare/00.06.04/goldberg.htm

Goldberg, M. Frontal and Temporal Lobe Dysfunction in autism and Other

Related Disorders: ADHD and OCD. Alasbimn Journal1(4): July 1999.

http://www.alasbimnjournal.cl/revistas/4/goldberg.htm

>From: " bella " <bellastip@...>

>Reply-

> " " < >

>Subject: New to the group

>Date: Mon, 18 Mar 2002 09:30:10 -0600

>

>Hi everybody!

>I am new to the group. For the past week I have been reading group's

>e-mail but still can not figure out some of the details. Can somebody

>explain to me what is protocol and what is it Dr.Goldberg recommends

>to do? I have a six years old autistic girl and we've tried just about

>everything (ABA, VBA, diet, vitamins...). I have read a discussion about

>Valtrex. What is it and how does it help? I posted a message in the

>section " Ask Doctor Goldberg " about a week ago but still did not receive an

>answer. I feel that the time is running out on us (she is going to the

>first grade in the Fall) and would like to get some answers as soon as

>possible so maybe we can start planning our trip to see Dr.Goldberg.

>

>Can somebody help with answers?

>

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

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Guest guest

Cheryl,

Thanks so much for the info and the link!!!

New to the group

>Date: Mon, 18 Mar 2002 09:30:10 -0600

>

>Hi everybody!

>I am new to the group. For the past week I have been reading group's

>e-mail but still can not figure out some of the details. Can somebody

>explain to me what is protocol and what is it Dr.Goldberg recommends

>to do? I have a six years old autistic girl and we've tried just about

>everything (ABA, VBA, diet, vitamins...). I have read a discussion about

>Valtrex. What is it and how does it help? I posted a message in the

>section " Ask Doctor Goldberg " about a week ago but still did not receive an

>answer. I feel that the time is running out on us (she is going to the

>first grade in the Fall) and would like to get some answers as soon as

>possible so maybe we can start planning our trip to see Dr.Goldberg.

>

>Can somebody help with answers?

>

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

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  • 3 months later...
Guest guest

Sassy:

Welcome to the group! Glad to hear that your symptoms

are under control - don't know if we are ever truly

painfree, seems with me even on a good day there is

some pain. This is a great group of people - we know

what you are going through and we help each other a

lot.

Kathe in CA

__________________________________________________

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Guest guest

Welcome, Sassy. My youngest daughter just got back from Iowa where her

fiance was born & raised!

I'm so glad you're doing well. I'm looking forward to getting to know

you.

With Hope...

Tess in NW Oregon

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Guest guest

Hi Sassy, and welcome to the group. I'm 36 and live in Orlando, FL. I work

from home and am finishing my degree in computer programming. I was

diagnosed with RA last Feb.

You'll find a lot of caring friends here, and great information on RA. Our

moderators, and a, do a great job sharing the latest RA research.

I'm glad your medication " cocktail " is working for you. As for other

autoimmune problems, I'm hypothyroid, but haven't been diagnosed with

autoimmune hypothyroidism. I think others in the group might have more than

one autoimmune diagnosis, though.

Hugs,

Carol

[ ] New to the group

Hi all I am new to your group, I go by Sassy. I found out about a year

ago now that I have RA. I think I really knew it about a year before that,

but I had to find the right Dr.!! I am taking Methotrexate, vioxx and

Enbrel. I guess I have had alot of luck with them, not sure what to expect.

Things are so much better then they were so I am happy with that just wish

better ment NO PAIN at all!! I also have someother wonderful autoimmune

disorders, and wonder if others have multi immune system problems?

Now a little about me... I am 40 years old, live just outside a small town

in Iowa, love being in the country!! I have been married for geeeezzzzzz 22

years in Oct.! My husband and I have 3 children Josh 17, 15, and

Haylie 9. Well thats about it for now! Hope to get to know some of you

soon.

Sassy

---------------------------------

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Guest guest

Hi and Welcome Sassy,

I hope you will enjoy it here as much as we will enjoy getting to know you.

Although, the reason that you had to join us saddens me.

It really doesn't seem right that we have to " settle " for some pain and can't

achieve or expect NO PAIN. Glad to see that at least you are getting some

relief. This disease is no fun at all.

Take care of YOU. Remember, you are never alone now with this disease and we

are all just an e-mail away.

Gentle, tender, getting to know you angel hugs,

Debs in FL

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