hello

[Guest guest]

Hi Patty:

Welcome to the group. You have come to group of very

supportive people, and our moderators find us medical

and drug information, studies, and new research. I

have been a member for several years now and have

found it to be a wonderful place to come because we

all truly understand what each other is going through.

As the saying goes " whine and cheese served here

everyday " , so feel free to vent when you need to.

I am 51, have been diagnosed with RA for 6 years, and

also have Raynaud's and Fibromyalgia. I am married

and have two children, a son 21 and a daughter 18. My

family is great, but it took them a while to

understand what I go through (although never as well

as the people in this group do), and do help me quite

a lot. We have a small farm with horses, chickens,

ducks, geese, and dogs, and love it.

I take Enbrel, Methotrexate, Ultracet, Mobic, Folic

Acid, Milk Thistle, and Glucosamine for the RA, and

for the Fibro I am on Skelaxin and Trazadone. I also

take an anti-depressant, blood pressure med, and

asthma med. Whew - never did I think in a million

years I would have to take so much meds.

You have a very busy job - are you able to keep

working? I hope that your doctors have started you on

medication - I am sure you know how important it is to

treat this disease aggressively from the start. Best

of luck to you and keep coming back -

Kathe in CA

--- pattyk630 <babies1@...> wrote:

> I am new to the group, and I thought I would tell

> you a little about

> myself. I am a 49 year old female that feels 100.

> I am a nurse in a

> very busy pediatric practice. I have hypothyroidism

> and started

> having a lot of problems, so I went to the doctor,

> and more doctors,

> and then more doctors. My blood test were off the

> wall for RA, but

> then came a additional problem - hemachromatosis, or

> better called

> iron overload. This also causes a different type of

> arthritis, and

> joint pain. I am looking forward to talking to

> others with RA and

> venting every now and then. My family, husband, two

> daughters, and

> four grandchildren are wonderful and supportive, but

> they only see the

> outside and can't understand all that is happening

> on the inside. I am

> really looking forward to this group.

>

>

>

>

>

>

Kathe in CA

__________________________________________________

[Guest guest]

Welcome! I'm looking forward to getting to know you. I'm married to

a great guy, I'm 51, live in Florida and have

4 grown children and 4 grandchildren, all back in NJ

I've had RA since my 20's.

a

On Sep 4, 2005, at 9:17 AM, pattyk630 wrote:

> I am new to the group, and I thought I would tell you a little about

> myself. I am a 49 year old female that feels 100. I am a nurse in a

> very busy pediatric practice. I have hypothyroidism and started

> having a lot of problems, so I went to the doctor, and more doctors,

> and then more doctors. My blood test were off the wall for RA, but

> then came a additional problem - hemachromatosis, or better called

> iron overload. This also causes a different type of arthritis, and

> joint pain. I am looking forward to talking to others with RA and

> venting every now and then. My family, husband, two daughters, and

> four grandchildren are wonderful and supportive, but they only see the

> outside and can't understand all that is happening on the inside. I am

> really looking forward to this group.

>

>

>

>

>

>

>

>

[Guest guest]

Patty,

A member of a diabetes list I am on was recently diagnosed with

hemachromatosis. The doctor who runs that list suspected she had it

after she posted her lab results. He was correct. Do they have to take

blood from you every so often as the treatment for this? If this causes

joint pain and you also have RA, you will have a heck of a time keeping

all the pains straight, won't you? Anyway, welcome to the group. I hope

you will be getting some relief soon. Sue

On Sunday, September 4, 2005, at 09:17 AM, pattyk630 wrote:

> I am new to the group, and I thought I would tell you a little about

> myself. I am a 49 year old female that feels 100. I am a nurse in a

> very busy pediatric practice. I have hypothyroidism and started

> having a lot of problems, so I went to the doctor, and more doctors,

> and then more doctors. My blood test were off the wall for RA, but

> then came a additional problem - hemachromatosis, or better called

> iron overload. This also causes a different type of arthritis, and

> joint pain. I am looking forward to talking to others with RA and

> venting every now and then. My family, husband, two daughters, and

> four grandchildren are wonderful and supportive, but they only see the

> outside and can't understand all that is happening on the inside. I am

> really looking forward to this group.

[Guest guest]

Hello Sue,

Nice to meet you. Yes, I was being bleed every other week for months until my

ferritin level was down to 42. Now it is just once in a while - 6 to 8 weeks.

My younger brother also has it and his was so high he was being bleed twice a

week for months. I had an older brother who was a severe diabetic - renal

failure. My doctor really feels that he also had it, but it was never found.

He had all the signs. We lost him at 47 years old. I am so happy that they

found it in you - now you can control it with the diabetes. I have two more

brothers who need tested for it. Yes, the pain can be very bad at time and the

amount of medications is terrible. I just entered a clinical study for Humira

injections. Third shot today, its every other week and it seems to be helping

alot. Only time will tell. I don't know how your doctor is, but mine is

fantastic for the hemachromatosis. One thing I can say is do research, know

your blood levels and push your doctor if you have to. One thing

I found is not many doctors know much about it - yes, they know what it is, but

thats about it. The first doctor I saw told me not to worry about the iron

level being so high - " it's ok " I changed doctors real fast, I knew something

was wrong, just didn't know what. I hope to hear from you again and I do wish

you all the luck. Patty

Sue <marysue@...> wrote:

Patty,

A member of a diabetes list I am on was recently diagnosed with

hemachromatosis. The doctor who runs that list suspected she had it

after she posted her lab results. He was correct. Do they have to take

blood from you every so often as the treatment for this? If this causes

joint pain and you also have RA, you will have a heck of a time keeping

all the pains straight, won't you? Anyway, welcome to the group. I hope

you will be getting some relief soon. Sue

On Sunday, September 4, 2005, at 09:17 AM, pattyk630 wrote:

> I am new to the group, and I thought I would tell you a little about

> myself. I am a 49 year old female that feels 100. I am a nurse in a

> very busy pediatric practice. I have hypothyroidism and started

> having a lot of problems, so I went to the doctor, and more doctors,

> and then more doctors. My blood test were off the wall for RA, but

> then came a additional problem - hemachromatosis, or better called

> iron overload. This also causes a different type of arthritis, and

> joint pain. I am looking forward to talking to others with RA and

> venting every now and then. My family, husband, two daughters, and

> four grandchildren are wonderful and supportive, but they only see the

> outside and can't understand all that is happening on the inside. I am

> really looking forward to this group.

[Guest guest]

Hello

Nice to meet you! Yes, I take a ton of medication. I was dx almost two years

ago, but have suffered in silence for about 5 years. I would go to doctors and

it was always something else. I finally couldn't take it anymore and changed

doctors. Soon as I showed him a few knuckles on my hands and feet it was off to

an RA doctor. I just entered a clinical study for humira, I am considered a

methotrexate failure and have been removed from that. I got my third shot today

for the Humira and it seems to be helping - at least I'm walking now instead of

hanging on to everything and everyone and dragging myself along. I have a

friend I work with who take Enbrel and is doing pretty good. I am on light duty

at work - been doing that for over a year. I don't know how much longer they

will let me do this. The practice has over 20,000 patients total and new ones

all the time. The doctors are on staff at hospital and see all newborns, so we

get most of them. Only time will tell. It is so

nice to talk to people who understand, I just hope I can answer all the emails

Patty

Kathe Sabetzadeh <lv2ryd@...> wrote:

Hi Patty:

Welcome to the group. You have come to group of very

supportive people, and our moderators find us medical

and drug information, studies, and new research. I

have been a member for several years now and have

found it to be a wonderful place to come because we

all truly understand what each other is going through.

As the saying goes " whine and cheese served here

everyday " , so feel free to vent when you need to.

I am 51, have been diagnosed with RA for 6 years, and

also have Raynaud's and Fibromyalgia. I am married

and have two children, a son 21 and a daughter 18. My

family is great, but it took them a while to

understand what I go through (although never as well

as the people in this group do), and do help me quite

a lot. We have a small farm with horses, chickens,

ducks, geese, and dogs, and love it.

I take Enbrel, Methotrexate, Ultracet, Mobic, Folic

Acid, Milk Thistle, and Glucosamine for the RA, and

for the Fibro I am on Skelaxin and Trazadone. I also

take an anti-depressant, blood pressure med, and

asthma med. Whew - never did I think in a million

years I would have to take so much meds.

You have a very busy job - are you able to keep

working? I hope that your doctors have started you on

medication - I am sure you know how important it is to

treat this disease aggressively from the start. Best

of luck to you and keep coming back -

Kathe in CA

--- pattyk630 <babies1@...> wrote:

> I am new to the group, and I thought I would tell

> you a little about

> myself. I am a 49 year old female that feels 100.

> I am a nurse in a

> very busy pediatric practice. I have hypothyroidism

> and started

> having a lot of problems, so I went to the doctor,

> and more doctors,

> and then more doctors. My blood test were off the

> wall for RA, but

> then came a additional problem - hemachromatosis, or

> better called

> iron overload. This also causes a different type of

> arthritis, and

> joint pain. I am looking forward to talking to

> others with RA and

> venting every now and then. My family, husband, two

> daughters, and

> four grandchildren are wonderful and supportive, but

> they only see the

> outside and can't understand all that is happening

> on the inside. I am

> really looking forward to this group.

>

>

>

>

>

>

Kathe in CA

__________________________________________________

[Guest guest]

Hello

Nice to meet you - Thanks in advance, it so nice to have people to talk to that

understand. Patty

tdianaok <tdianaok@...> wrote:

Welcome!

I am glad you found the group. There is great support and information.

I just want you to know that I am here if you need a shoulder. Can't

wait to know you, hugs Tawny

> I am new to the group, and I thought I would tell you a little about

> myself. I am a 49 year old female that feels 100. I am a nurse in

a

> very busy pediatric practice. I have hypothyroidism and started

> having a lot of problems, so I went to the doctor, and more doctors,

> and then more doctors. My blood test were off the wall for RA, but

> then came a additional problem - hemachromatosis, or better called

> iron overload. This also causes a different type of arthritis, and

> joint pain. I am looking forward to talking to others with RA and

> venting every now and then. My family, husband, two daughters, and

> four grandchildren are wonderful and supportive, but they only see

the

> outside and can't understand all that is happening on the inside. I

am

> really looking forward to this group.

[Guest guest]

In a message dated 15/09/2005 00:34:06 GMT Daylight Time,

destinydow@... writes:

THIS LITTLE REMEDY TYPE THING OFF THE INTERNET AND IN THE MAIL OFF OF

EBAY AND I GET IT AND AM SO EXCITED AND READY TO TRY THE " ALA " THING

AND SHE HAS 4 SILVER FILLINGS AND TWO SILVER CROWNS!! SHE IS ONLY 6

AND THEY ARE ALL ON HER MOLARS. SO I FEEL LIKE I DON'T HAVE ANYMORE

OPTIONS. WHAT I NEED IS SOME OPINIONS AND SUGGESTIONS ON WHAT ACTIONS

I SHOULD TAKE. MY HUSBAND THINKS WE SHOULD GET THEM ALL REMOVED AND

DONE OVER AND THEN TRY THIS BUT YOU CAN ALMOST IMAGINE THE COST THAT

>>>>Your husband is correct - it is very dnagerous to use ALA if your

daughter has silver fillings. Go to this site and read for a week LOL

_http://home.earthlink.net/~moriam/_ (http://home.earthlink.net/~moriam/)

Mandi in UK

[Guest guest]

I'm sure others will say the same, but you absolutely cannot use ALA or any

other chelator unless and until all of the mercury and metal fillings in your

daughter's mouth are gone. Regardless of expense, it has to be done first. My

daughter is also one of the " PDD, Autistic Tendencies, Auditory Processing,

etc. " children...falls right into the category of " We don't know what the heck

is wrong with her, but she's not right. " Treating her for straight-up Autism (if

there is such a thing) has been the smartest thing we have ever done, and led us

to this group and others. We are chelating her using DMSA and ALA on Andy

Cutler's protocol with tremendous success.

Good luck!

-------------- Original message --------------

MY DAUGHTER HAS NOT BEEN DIAGNOSED WITH ANY ONE THING YET, BUT I HAVE

BEEN TOLD THAT SHE MIGHT HAVE PDD, OR DISPRAXIA, OR AN AUDITORY

PROCESSING DISORDER, OR JUST PLAIN BEEN TOLD SHE HAS AUTISTIC

CHARACTERISTICS. SO I DON'T EVEN KNOW WHAT TO THINK ANYMORE, BUT I GOT

THIS LITTLE REMEDY TYPE THING OFF THE INTERNET AND IN THE MAIL OFF OF

EBAY AND I GET IT AND AM SO EXCITED AND READY TO TRY THE " ALA " THING

AND SHE HAS 4 SILVER FILLINGS AND TWO SILVER CROWNS!! SHE IS ONLY 6

AND THEY ARE ALL ON HER MOLARS. SO I FEEL LIKE I DON'T HAVE ANYMORE

OPTIONS. WHAT I NEED IS SOME OPINIONS AND SUGGESTIONS ON WHAT ACTIONS

I SHOULD TAKE. MY HUSBAND THINKS WE SHOULD GET THEM ALL REMOVED AND

DONE OVER AND THEN TRY THIS BUT YOU CAN ALMOST IMAGINE THE COST THAT

WILL BE FOR US. I AM VERY DISCOURAGED AND I NEED SOME ADVICE AND

SUGGESTIONS, SO PLEASE ANYONE, ANYTHING!!!!!

THANKS ,

HEATHER

=======================================================

[Guest guest]

,

You absolutely can't chelate until the fillings are out. I know that's a

LOT of money, but you can pull mercury out of the fillings otherwise and

make her sicker yet. Please be sure to use a dentist that knows how to keep

her safe from the mercury exposure as she has them extracted. My husband had

all of his removed, so we've been through this.

Barb

[ ] HELLO

> MY DAUGHTER HAS NOT BEEN DIAGNOSED WITH ANY ONE THING YET, BUT I HAVE

> BEEN TOLD THAT SHE MIGHT HAVE PDD, OR DISPRAXIA, OR AN AUDITORY

> PROCESSING DISORDER, OR JUST PLAIN BEEN TOLD SHE HAS AUTISTIC

> CHARACTERISTICS. SO I DON'T EVEN KNOW WHAT TO THINK ANYMORE, BUT I GOT

> THIS LITTLE REMEDY TYPE THING OFF THE INTERNET AND IN THE MAIL OFF OF

> EBAY AND I GET IT AND AM SO EXCITED AND READY TO TRY THE " ALA " THING

> AND SHE HAS 4 SILVER FILLINGS AND TWO SILVER CROWNS!! SHE IS ONLY 6

> AND THEY ARE ALL ON HER MOLARS. SO I FEEL LIKE I DON'T HAVE ANYMORE

> OPTIONS. WHAT I NEED IS SOME OPINIONS AND SUGGESTIONS ON WHAT ACTIONS

> I SHOULD TAKE. MY HUSBAND THINKS WE SHOULD GET THEM ALL REMOVED AND

> DONE OVER AND THEN TRY THIS BUT YOU CAN ALMOST IMAGINE THE COST THAT

> WILL BE FOR US. I AM VERY DISCOURAGED AND I NEED SOME ADVICE AND

> SUGGESTIONS, SO PLEASE ANYONE, ANYTHING!!!!!

>

> THANKS ,

> HEATHER

>

>

>

>

>

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

>

[Guest guest]

I was diagnosed this year at age 41. I actually use to do yoga all the time but

since my wrists were so bad, I had to stop. NOw that I feel better from taking

Humira injections I recently started lifting weights again but I'm afraid to do

yoga because of my wrists. As far as the diet goes, who knows.

august_born <august_born@...> wrote:

Hi,

I'm 32 and found out that I have RA about 9 months ago. Being this

young with arthritis is really fustrating. I'm trying to find out a few

things that may help me out.

Besides medication does anyone do anything like practice yoga or

changed your diet that seemed to have made some(even if small)

improvement in your condition?

Does anyone know of a good rheumatologist in New York City? The one I'm

using is OK, but I just get the feeling all he wants to do is push

drugs down my throat.

[Guest guest]

I've done a lot of yoga in my life, but had to replace it with the

gentler Qigong, which I highly recommend!

When I was first diagnosed with RA I went on an elimination diet (you

can find info. on the web) to help determine food sensitivities. I

learned that I was sensitive to dairy, wheat, and coffee.

Swimming has been a terrific help, and so has acupuncture

and massage.

Herbal remedies and homeopathy were no help at all.

While I have lots of alternative things going, my best help has come

from the meds.

Sierra

>

> Hi,

>

> I'm 32 and found out that I have RA about 9 months ago. Being this

> young with arthritis is really fustrating. I'm trying to find out a

few

> things that may help me out.

>

> Besides medication does anyone do anything like practice yoga or

> changed your diet that seemed to have made some(even if small)

> improvement in your condition?

>

> Does anyone know of a good rheumatologist in New York City? The one

I'm

> using is OK, but I just get the feeling all he wants to do is push

> drugs down my throat.

>

[Guest guest]

How did you and your doctor decide it was time for a biological med?

Sierra

> Hi,

>

> I'm 32 and found out that I have RA about 9 months ago. Being this

> young with arthritis is really fustrating. I'm trying to find out a

few

> things that may help me out.

>

> Besides medication does anyone do anything like practice yoga or

> changed your diet that seemed to have made some(even if small)

> improvement in your condition?

>

> Does anyone know of a good rheumatologist in New York City? The one

I'm

> using is OK, but I just get the feeling all he wants to do is push

> drugs down my throat.

>

>

>

>

>

>

>

[Guest guest]

hi

i know of one great rheumatologist in nyc , her name is dr. paula marchetta 36th

and park ave

my; hip plan doesn't cover her, my own rheum is a dr. lipshitz, on 79th btwn 2nd

and 3rd, i like him, but he too is an rx dealer. i think they all are because

there is no remedy , only an offering of pain relief. i'm very depressed about

that situation, and looking for alternatives.

i do know if money were no object, i would probably go to marchetta.

august_born <august_born@...> wrote:

Hi,

I'm 32 and found out that I have RA about 9 months ago. Being this

young with arthritis is really fustrating. I'm trying to find out a few

things that may help me out.

Besides medication does anyone do anything like practice yoga or

changed your diet that seemed to have made some(even if small)

improvement in your condition?

Does anyone know of a good rheumatologist in New York City? The one I'm

using is OK, but I just get the feeling all he wants to do is push

drugs down my throat.

[Guest guest]

Welcome. Sorry about your diagnosis. I was diagnosed when in my early

20's and I'm now 51. I know how it feels to

be so young and get this diagnosis. I've had the best relief with

water therapy. Swimming keeps my joints mobile and

strong. It also reduces pain and inflammation. I've changed my diet

by eliminating meat, which has changed my digestive

system for the better. I've eliminated most sugar from my diet and

the main foods I eat are fruits, veggies, and fish.

There are many foods and herbs that fight inflammation, which I

incorporate into my diet.

Any rheumatologist is going to try to put you on meds. Research shows

that the earlier treatment is started, the less

damage done. My drug of choice is Enbrel. I was wheelchair bound

before starting Enbrel. I tried alternative treatments

for several years, and all I got for it is eroded joints, so I

combine alternative and traditional.

a

On Oct 6, 2005, at 3:35 PM, august_born wrote:

> Hi,

>

> I'm 32 and found out that I have RA about 9 months ago. Being this

> young with arthritis is really fustrating. I'm trying to find out a

> few

> things that may help me out.

>

> Besides medication does anyone do anything like practice yoga or

> changed your diet that seemed to have made some(even if small)

> improvement in your condition?

>

> Does anyone know of a good rheumatologist in New York City? The one

> I'm

> using is OK, but I just get the feeling all he wants to do is push

> drugs down my throat.

[Guest guest]

Hi,

I just signed in a couple of days ago. I am 34 and was diagnosed in

July. So, I know your frustration. I have been so healthy all of

my life that this is very overwhelming. I would have to be dying to

go to a Dr. in the past. Which explains why I didn't go to one for

3 full months of pain and agony. I figured it would go away on its

own. I tried heat, cherries and cherry juice, eliminating

aspartame, shoe inserts for my feet, accupuncture, anything I could

find. Nothing helped.

The amount of drugs (not to mention the expense) is amazing.

However, my life seemed unlivable for about 3 months. I just

started to get pain in March, about 6 weeks after the birth of my

son. If I didn't get the meds I don't know how I would have

survived. My Dr. is suggesting that I learn to accept this disease

and fight it as agressively as it is attacking me. Their plan is to

all but stop the RA and prevent any damage and disgurement. I

already have a small amount of joint damage in just about 16 weeks,

pretty scary. I figure I have about 60 years to live and want to be

as active and healthy as possible. If that requires meds, so be

it. I figure I can be in pain and depressed while not taking the

meds. Or take them and get on with my life as much as possible.

She put me on Arava immediately and Enberel within 2 weeks.

Sometimes I feel like a loser and still imagine myself at about 16

years old never even imagining this as a part of my life. But the

meds have given me my life back. I am basically back to normal with

just a little pain in my elbows and wrists. I feel blessed to have a

Dr. that didn't make me " wait and see " . She just hit the ground

running. I guess I am saying, if you are in pain, take what they

offer. I am greatful for all the people out there working on meds

and cures. This disease sucks at our age but we have long lives

ahead of us to fight it. Good luck. Abby

>

> Hi,

>

> I'm 32 and found out that I have RA about 9 months ago. Being this

> young with arthritis is really fustrating. I'm trying to find out

a few

> things that may help me out.

>

> Besides medication does anyone do anything like practice yoga or

> changed your diet that seemed to have made some(even if small)

> improvement in your condition?

>

> Does anyone know of a good rheumatologist in New York City? The

one I'm

> using is OK, but I just get the feeling all he wants to do is push

> drugs down my throat.

>

[Guest guest]

Hi, .

There are many yoga poses you can do without causing stress to your

wrists.

I've taught yoga for many years. If you'd like, you're very welcome to

tell me which poses you're worried about; and I'll let you know if

they'll strain your wrists. Of course, you'll want to be careful with

all your joints; but gentle yoga, tai chi, qigong--whichever you

enjoy--can be very helpful.

Prakasha

On Oct 6, 2005, at 4:46 PM, Mathews wrote:

> I was diagnosed this year at age 41.  I actually use to do yoga all

> the time but since my wrists were so bad, I had to stop.  NOw that I

> feel better from taking Humira injections I recently started lifting

> weights again but I'm afraid to do yoga because of my wrists.  As far

> as the diet goes, who knows. 

>

[Guest guest]

Hi Kristi, I have two sons both diagnosed on the Autism Spectrum. My older

son has Asperger's and my younger son is diagnosed PDD-NOS and Anxiety

Disorder. They are very different. Pam

[Guest guest]

Hey Dana, im from County too !!

Michele

>

> Hello everyone, I was just reading some messages and as always all of

> you are so informative. Just to let you know that I have an almost 4

> year old son with severe apraxia, mild hypotonia,and now presently

> being screened for Sensory Integration Disorder (very orally sensory

> seeking and whole body sensory seeking). Anyway my son was diagnosed

> when he was 2 1/2 and has been in therapy since then. He is currently

> in Preschool disabled in our district, but this year we fought to have

> him placed in preschool inclusion. He is doing well in this setting.

> Also just wanted to ellaborate more about

[Guest guest]

My son actually had this same problem, and I started giving him acidophilus,

and he now goes regularly, but like , I have to tell him to go sit, he

can sit and read a book, but he always goes now, he used to not go for days,

sometimes weeks. The acidophilus takes a few months (about 2-3 months) but it

works, I know lots of kids ,some apraxic and some not. I originally started

giving my son the banana flavored chewable kind from shoprite for like $8.

But now I give him a little bit stronger strain, its also good if your child

is on antibiotics or has ever been on antibiotics, works to restore the good

bacteria in the gut. You can get a good strain, specifically for children in

any healthfood store, or grocery store. Hope this helps

Michele

[Guest guest]

My theory is that our children are late to potty train as a group

due to low tone issues, but many deal with constipation due to motor

planning issues that create the initial problem of " going " on

command. Then they get constipated and when they do go it hurts -

lots. Then they not only are dealing with the physiological aspects

of motor planning, but they are compounded with the psychological

fears from the pain of going. Following this theory it would make

sense that your child prefers to have a diaper on because it

eliminates the pressure of the " on command " because no matter when

it comes out it doesn't matter. It's probably better to be dealing

with this than the constipation I can tell you that -but being aware

that the constipation typically starts when the potty training is

over perhaps you newbies can eliminate this stage by being aware.

(and teach to use the toilet in spite of motor planning issues)

My theory is based on my own son Tanner, as well as some very long

conversations with his pediatric gastroenterologist Dr. Lawrence

from Palm Beach Florida. Tanner I would say is " cured " at

this point of any constipation issues 2 years +! We only had to use Milk of

Magnesia one time when we flew to NJ/NY for the Holidays for a long

weekend over the Holidays and didn't give him any POM juice which he

drinks a small amount of each day now.

What I do find strange is that many times we have to tell Tanner to

sit on the toilet, and then he does " go " , rather than going

himself to the bathroom as most of us do. If that makes any sense -

because it doesn't to me! Not that he never goes on his own -but

I'd prefer if he always did.

My suggestion is to say the following which worked for Tanner if you

can get your child to try to sit on the potty to go to the bathroom

there instead.

" Take a deep breath, really really deep as deep as you can in "

(wait till they breathe in) " OK, now try really hard to blow the air out of

your belly button " One parent here said " My child is apraxic so

there is no way he would be able to understand how to do that " Just

remember apraxia doesn't always make sense and you at times have to

trick the brain. We don't want (God Forbid) your child to 'really'

blow air out of his or her belly button -but right now try to do

it. No matter how you try to do it -you will be using the right

muscles to push (without getting graphic if you know what I mean)

And my kid is as apraxic at the next and it worked for him! My

theory on that is that when you bring in that much air and apply any

amount of pressure it should work.

Below I have an archive on what initially worked for Tanner -but

again today all we use is Pom Wonderful http://www.pomwonderful.com

And once more I want to do a HUGE big THANK YOU to Dr. Lawrence

-thank you thank you thank you!!!!!

(unless you deal with the horror of constipation in a young child

you have no idea how bad it really is) Please feel free to share

this information with anyone that it may help:

From: " kiddietalk " <kiddietalk@...>

Date: Mon Apr 26, 2004 10:52 pm

Subject: Re: constipation - what kind of nectar?

Hi Tricia -sorry I missed your call and not sure if it's too late to

call you now.

We mainly use pear nectar and fruit cups, and papaya nectar and Dole

Fruit 'n Gels®, Reduced Sugar, Papaya in Peach Gel

Problem is even though they are still in our stores here in Florida -

I don't see them on the Dole website which means they may be

discontinued and soon to be missing from store shelves? (NO!)

http://www.dole.com/foodservice/products/pack.fruitngel.jsp

I had asked Tanner's doctor, Dr. why more MDs don't recommend

nutritional

interventions to the constipation and he said " And how long did I

just spend with you? " Yes it took a few hours! Anyway -you guys can

know all I do in a few minutes -(the time it takes to write a

prescription)

and just in case you are interested -

I have Dr. contact information below. I highly recommend him.

Lawrence MD (pediatric gastroenterologist MD)

5325 Greenwood Ave

West Palm Beach Florida

561 840 1960

Here are a few archives with more information on this.

From: " kiddietalk " <kiddietalk@...>

Date: Sat Feb 7, 2004 7:19 pm

Subject: Re: high fiber regression/constipation

Hi Joanne,

I first thought of aloe too, and then found the senna tea to work

for Tanner, but when I posted it here was told how bad senna is for

children and especially with long term use. (thank you!!)

The advice I heard here was confirmed by Tanner's pediatric

gastroenterologist Dr. from West Palm Beach Florida.

Dr. who told me that senna, and harsh stimulants like it

(which include aloe) are harsh on the body, and that they may work

for a bit, but you will gradually need more and more for it to

work.

Dr. advised me that the gentlest laxative is the Milk

of Magnesia because it just draws moisture to the bowels and works

the most like mother nature. Tanner likes the cherry flavored Milk

of Magnesia. MOM is " stimulant free "

" ' Milk of Magnesia has provided effective, stimulant-free

relief of constipation for over 125 years. Unlike some other

laxatives, doctor recommended ' Milk of Magnesia does not

contain the harsh stimulants that can cause pain and cramping. When

taken at a lower dose, ' can also be used for fast-acting

relief of acid indigestion, sour stomach, and heartburn. Available

in Mint, Cherry, and Original formulas. "

http://www.bayercare.com/htm/philmom.htm

And what you need to read about aloe:

FDA Rules that Aloe & Cascara Are Not Safe as Stimulant Laxatives

Date

November 20, 2002

Details

The FDA issued a final ruling on Nov 5, 2002, stating that the

stimulant laxative ingredients aloe (including extract and flower

extract) and cascara sagrada (including all fluidextracts, bark and

casanthranol) in over-the-counter drug products are not generally

recognized as safe and effective or are misbranded. The FDA pointed

out that there is inadequate data on the toxicity of aloe and

cascara sagrada. These products have not been shown to be safe and

effective for their intended use. These ingredients should be

eliminated from general use within 180 days

http://www.mskcc.org/mskcc/html/12015.cfm

" herbal teas containing senna, aloe, buckthorn, and other plant-

derived laxatives that, when consumed in excessive amounts, can

cause diarrhea, vomiting, nausea, stomach cramps, chronic

constipation, fainting, and perhaps death. "

http://www.pueblo.gsa.gov/cic_text/health/teatime/597_tea.html

And again -an archive about what the traditional gastroenterologist

Dr. " prescribed " for Tanner which is working (just wish he

didn't have to drink nectar every day!):

" This also may have to do with some signaling problem or motor

planning aspect. Not sure -but who cares when anyone just about

anywhere can pick up pear nectar or Dole papaya fruit and gel

bowls! This works -and we love Dr. !!

> Today I took Tanner to see pediatric gastroenterologist Lawrence

> MD from Palm Beach Florida for Tanner's problem with

> constipation which we have been trying to help him with now for

the

> past 5 years or more with various MDs (Tanner is now 7) Up till

now

> nobody has wanted to put Tanner on medications -and since we've

> moved we haven't taken Tanner to see his NJ/NY MDs. I highly

> recommend Dr. if you are in Florida in that he took over an

> hour with us -was excellent with Tanner (very funny) and was very

> open to discussing off the wall theories on constipation in

apraxic

> children -a best kept secret even though it's known for autism.

Dr.

> has many patients with special needs -some with severe CP

> whose parents have to blend fruits for their constipation that

they

> can put through their feeding tube.

>

> Here is a brief summery from the prescription he gave me:

>

> Diet: Nectars (fruit juices) Papaya, pear, apricot (if he can

> stand it -can mix with others but try plain nectar first)

> * prune juice -can be mixed with orange juice (since most kids

don't

> like it)

>

> exotic fruits- figs, dates, apricot, papaya (papaya underlined

> twice) (if he can stand it -like the nectars -these work wonders

he

> said)

>

> limit -banana, apple, rice, dairy

>

> Milk of Magnesia 2-3 tablespoons with glass of water any time he

> skips 1 day. Works 4-8 hours.

>

> Behavior Modification -10 minutes daily -no distractions. Use

> calendar stickers -every week reward for amount of BMs

> 2/ week something small

> 3-4 medium

> 5-7 large reward

>

> Dr. said that there is a chance that the problem could be

> motor planning -but he can't fix that -his goal is to get Tanner

on

> a schedule for a long period of time so that he starts going

> automatically. He doesn't want me to use the Nature's Tea due to

> the senna in it -said it can cause dependence in long term use,

and

> said that due to what I reported with Tanner's regression with too

> much fiber not to use high fiber either. He said it is possible

> that the fiber is cutting short the fatty acids in the gut. "

From: " kiddietalk " <kiddietalk@...>

Date: Wed Dec 3, 2003 9:37 pm

Subject: Re: constipation/ new info on Probiotic -

Hi -lots more on this in the archives. Dr. is a

traditional pediatric gastroenterologist MD too -go figure!

Lawrence MD

5325 Greenwood Ave

West Palm Beach Florida

561 840 1960

Tanner is picky about which nectar he'll drink or it's " ewww " he

loves the pear nectar from a company from Belgium called Looza which

I'm dreading our local stores stop stocking and have already spoken

personally to about 4 store managers to beg them to keep carrying

it, and a papaya nectar from s " all natural " that looks like

someone bottles it in their garage and drives it to the store

themselves -not sure if it's distributed anywhere else:

s Tropical Plantation

6550 Okeechobee Blvd

West Palm Beach, FL 33411-2798

United States

Mr. Henry s

President

Tel: 561-683-4701

Fax: 561-683-4993

Hey just looked up Looza online and apparently it's owned by

Tropicana which is not far from me either!

http://www.copyshark.com/samples/TropWSamples2.html

I send Tanner to school with these little cans of Libby pear nectar

and a dole fruit and gel with papaya (that he actually likes but is

now getting sick of)

We give him some nectar for breakfast, some for lunch -at least

twice a day. Speaking of bananas which he used to love -I stopped

buying them all the time like I did before -we've cut down his rice

and milk -and that's about it. If he misses a day we give him 3

tablespoons of the strawberry Milk of Magnesia like Dr.

suggested, and it works -but that's not often he misses now.

Speaking of missing -you must have missed my answer to you!

" From: " kiddietalk " <kiddietalk@...>

Date: Sun Nov 16, 2003 2:15 am

Subject: Re: constipation

Wow thanks for this comprehensive lesson about the gut!

I just wanted to add that in a nutshell -out of our couple of hour

appointment with pediatric gastroenterologist Lawrence MD from

Palm Beach Florida, we covered much of what you talked about.

I just want to clarify that Dr. did not recommend juice, and

that I can tell you that for Tanner juice did not work. Dr.

recommended the nectars -specifically papaya, pear, apricot etc....

We use a mixture of pear, papaya and mango nectar -heavy on the

pear. Here is a bit about each:

" Fresh papaya is probably the finest healing food in the world. It

is anti-inflammatory, detoxifying, has enzymes which can decompose

toxic matter, and help digest foods eaten so as to get more

nutrients out of them for feeding the cells of the body. It is

literally the finest anti aging food known and can even help prevent

wrinkles...

Pear nectar flushes the liver gallbladder, removes gout and other

acid accumulation and prevents constipation. Two 6 oz glasses a day

between meals is the appropriate amount for most individuals. "

http://www.timeforhealth.com/foods.html ... "

There was much more on that one, and here is from another archived

message:

" Many of our kids (sorry all the potty training stage people to break

this to you) that potty trained as a group a bit later (around 4)

due to the muscle control weakness from the low tone(it's not in

their control) then have constipation problems for the same reason -

constipation.

Based on how well and quick this worked -I'm guessing that there may

be some psychological fear aspects that are at play in our kids

too. They have a painful experience (you know what I mean if you

know what I mean) and then they are afraid to go so they hold it in.

This also may have to do with some signaling problem or motor

planning aspect. Not sure -but who cares when anyone just about

anywhere can pick up pear nectar or Dole papaya fruit and gel

bowls! This works -and we love Dr. !!

> Today I took Tanner to see pediatric gastroenterologist Lawrence

> MD from Palm Beach Florida for Tanner's problem with

> constipation which we have been trying to help him with now for

the

> past 5 years or more with various MDs (Tanner is now 7) Up till

now

> nobody has wanted to put Tanner on medications -and since we've

> moved we haven't taken Tanner to see his NJ/NY MDs. I highly

> recommend Dr. if you are in Florida in that he took over an

> hour with us -was excellent with Tanner (very funny) and was very

> open to discussing off the wall theories on constipation in

apraxic

> children -a best kept secret even though it's known for autism.

Dr.

> has many patients with special needs -some with severe CP

> whose parents have to blend fruits for their constipation that

they

> can put through their feeding tube.

>

> Here is a brief summery from the prescription he gave me:

>

> Diet: Nectars (fruit juices) Papaya, pear, apricot (if he can

> stand it -can mix with others but try plain nectar first)

> * prune juice -can be mixed with orange juice (since most kids

don't

> like it)

>

> exotic fruits- figs, dates, apricot, papaya (papaya underlined

> twice) (if he can stand it -like the nectars -these work wonders

he

> said)

>

> limit -banana, apple, rice, dairy

>

> Milk of Magnesia 2-3 tablespoons with glass of water any time he

> skips 1 day. Works 4-8 hours.

>

> Behavior Modification -10 minutes daily -no distractions. Use

> calendar stickers -every week reward for amount of BMs

> 2/ week something small

> 3-4 medium

> 5-7 large reward

>

> Dr. said that there is a chance that the problem could be

> motor planning -but he can't fix that -his goal is to get Tanner

on

> a schedule for a long period of time so that he starts going

> automatically. He doesn't want me to use the Nature's Tea due to

> the senna in it -said it can cause dependence in long term use,

and

> said that due to what I reported with Tanner's regression with too

> much fiber not to use high fiber either. He said it is possible

> that the fiber is cutting short the fatty acids in the gut.

From: " kiddietalk " <kiddietalk@...>

Date: Sun Dec 14, 2003 11:32 am

Subject: Re: constipation

Hi !

Tanner is tired of the gels too. But I was told by Dr. that

we need to keep him on a daily regimen of going every day for at

least a few months to have the best possible chance of getting him

regular. Like Tanner -your children are old enough to have this

explained to them. So like it or not -Tanner is forced to drink the

nectars and eat the gel -and not just once a day either. He needs

nectar at least two to three times a day for it to work -and it's

working (so worth it).

Dr. told me " at some point you will get lax about it -and

he'll get constipated again -and once he does -it will start all

over. I'm just warning you because I see it happen. " I know why he

said this -most parents don't listen. Don't have to warn me twice -

there is no way in heck I want to be standing with a phone in my

hand wondering if I should call 911 while my son is crying and

screaming in extreme pain sitting on the toilet after I've tried all

I could think of to get it out and Glenn wasn't home. You don't

know until you know.

How do we keep him from getting bored? When you go to a restaurant -

ask them to make a fancy fruit mix drink for your child and put all

the fancy umbrellas and fruits in it like it's a mixed drink -they

don't use nectars -but they typically make them very sweet for the

kids. Then when you get home -buy a bunch of different nectars and

fruit juices and mix saying you will try to make the same thing for

them. This is what we did and it worked. Now I typically just give

Tanner the pear and papaya nectar mixed -heavy on the pear since he

likes the taste of that more (and it also works) Again -if Tanner

misses a day -he gets 3 tablespoons of Strawberry Flavored Milk of

Magnesia -like other kids he hated the mint -he loves the

strawberry -and I also saw they have chocolate -but didn't try it

since I know Tanner likes the one we have. Dr. told me " Don't

travel without the Milk of Magnesia, don't forget to bring it with

you if you are going on vacation " and we won't! Not every store

carries the Strawberry -the only flavor I know for sure Tanner likes.

For those of you that don't have pear or papaya nectar by you -I'd

call and see if you can order it online. I just checked net grocer

http://www.netgrocer.com and they carry pear and papaya nectar, but

not the brand we use -Looza. Tanner loves the Looza nectars -but we

also use the Kerns and Goya when we travel which they have. They

have the Dole fruit gels (I'd call and ask if they have papaya -

didn't see it but maybe they can get it? They also have the Milk of

Magnesia in chocolate and french vanilla -two flavors we haven't

tried - and they even had papaya babyfood! Hmm -I haven't tried

that one either -glad I looked for you guys!) Perhaps for variety?

Tanner too doesn't like fresh or dried papaya.

=====

[Guest guest]

This is typically a milk product - usually made with milk and/or soy. You

can actually get a formulation that is dairy and soy free off the internet -

but hard to find. I gave it to my milk/soy intolerant son without reading

the label first (oops) and it made him very ill for a while. Otherwise it

really is good stuff. -

Re: [ ] Re: hello

My son actually had this same problem, and I started giving him

acidophilus,

and he now goes regularly, but like , I have to tell him to go sit, he

can sit and read a book, but he always goes now, he used to not go for

days,

sometimes weeks. The acidophilus takes a few months (about 2-3 months) but

it

works, I know lots of kids ,some apraxic and some not. I originally

started

giving my son the banana flavored chewable kind from shoprite for like $8.

But now I give him a little bit stronger strain, its also good if your

child

is on antibiotics or has ever been on antibiotics, works to restore the

good

bacteria in the gut. You can get a good strain, specifically for children

in

any healthfood store, or grocery store. Hope this helps

Michele

[Guest guest]

,

I am unaware of acidophilus being a milk product, I have been giving rice

milk to my son since he was 2, now 6, who also has an intolerance to milk and

soy products and none of the acidophilus brands that I give him have ever had

milk or soy? My son also has more seizures when he has milk, so I am pretty

careful. Acidophilus is milk based when you obtain it from yogurt or milk,

or whatever they are adding acidophilus to these days, which even when you do

get it from yogurt etc, it still is not enough to help the good bacteria, you

need a live strain. I have given both of my sons Rob 6 and 2 - kirkman

labs bifido complex, as well as well as their straight acidophilus, I also

have used the shoprite brand chewable (blueberry, banana) also the Natures Way

Primadophilus for Kids, and the Puritans Pride brand as well, the more live

strain the better, except for very small children, then the bifido complex is

sufficient, especially if small children are on antibiotics often. Anyway, I

am not aware of acidophilus being milk based, everytime I bought it

especially from kirkman, it says specifically, does not contain milk, soy,

gluten or

casein. Hope this helps with the " poop " issue, as my son no longer has this

problem, due to the acidophilus. Oh by the way, if the stool gets really

loose, cut back on the amount of acidophilus.

Michele

[Guest guest]

It sounds like you have a milk/soy free formulation...but many of the over

the counter formulations acidophilus or lactobacillus that you pick up in

the refrigerator of the health food store are actually made with milk. One

just needs to be careful - and find the right product if you have a child

with food intolerances. -

Re: [ ] Re: hello

,

I am unaware of acidophilus being a milk product, I have been giving rice

milk to my son since he was 2, now 6, who also has an intolerance to milk

and

soy products and none of the acidophilus brands that I give him have ever

had

milk or soy? My son also has more seizures when he has milk, so I am pretty

careful. Acidophilus is milk based when you obtain it from yogurt or milk,

or whatever they are adding acidophilus to these days, which even when you

do

get it from yogurt etc, it still is not enough to help the good bacteria,

you

need a live strain. I have given both of my sons Rob 6 and 2 - kirkman

labs bifido complex, as well as well as their straight acidophilus, I also

have used the shoprite brand chewable (blueberry, banana) also the Natures

Way

Primadophilus for Kids, and the Puritans Pride brand as well, the more live

strain the better, except for very small children, then the bifido complex

is

sufficient, especially if small children are on antibiotics often. Anyway, I

am not aware of acidophilus being milk based, everytime I bought it

especially from kirkman, it says specifically, does not contain milk, soy,

gluten or

casein. Hope this helps with the " poop " issue, as my son no longer has

this

problem, due to the acidophilus. Oh by the way, if the stool gets really

loose, cut back on the amount of acidophilus.

Michele

[Guest guest]

Hi Dana

My daughter had the same problem and we where told to try the following with

her.

1 cup of pineapple

1 cop of bran

1 cup of pitted dates

and about half a cup of pineapple juice

Blend all ingredient's together.

We started Tabatha on 1/4 of a teaspoon for about 3 days if nothing happens

slowly increase the amount until the child goes.

I ended up having to give Tabatha about a soup spoon size before anything

happened but once she did then we decreased the amount that she need.

Now she has a teaspoon before she goes to bed every 3rd night and she happily

sits on the toilet every morning.

Each child is different so it just a matter of playing around until you find

what works with your child.

The mixture last for about a 10 days.

I have given this recipe to a few of my girlfriends when their children can't

go and it always seems to work and the children like the taste.

ine

Dana & Matt <my2boysjm@...> wrote:

Hello everyone, I was just reading some messages and as always all of

you are so informative. Just to let you know that I have an almost 4

year old son with severe apraxia, mild hypotonia,and now presently

being screened for Sensory Integration Disorder (very orally sensory

seeking and whole body sensory seeking). Anyway my son was diagnosed

when he was 2 1/2 and has been in therapy since then. He is currently

in Preschool disabled in our district, but this year we fought to have

him placed in preschool inclusion. He is doing well in this setting.

Also just wanted to ellaborate more about

[Guest guest]

> Hello everyone, I was just reading some messages and as always

all of

> you are so informative. Just to let you know that I have an almost

4

> year old son with severe apraxia, mild hypotonia,and now presently

> being screened for Sensory Integration Disorder (very orally

sensory

> seeking and whole body sensory seeking). Anyway my son was

diagnosed

> when he was 2 1/2 and has been in therapy since then. He is

currently

> in Preschool disabled in our district, but this year we fought to

have

> him placed in preschool inclusion. He is doing well in this

setting.

> Also just wanted to ellaborate more about