New to Group

[Guest guest]

Hi Rhonda,

I think you might be in the right place. Where do you live? We need to get

your son to a doc for help. I think the sleep issues are huge for our kind

of kids. They have done studies about lack of sleep and normal people soon

become psychotic without sleep. He needs a work up from a doc who

understands the immune issues. Someone who will test him for the things

that are wrong in his body and then work to correct them. He sounds like

most of our kids who are brilliant but have trouble expressing it.

Marcia

[Guest guest]

I am in Roanoke VA. his doc has already taken most of his favorit

foods away to help with the head aches. but she tends to ignore me

when i tell her that my family has a history of brain tumors. and I

cant get a referall to get brain wave done. at wits end and its with

the medical field.

>

> Hi Rhonda,

>

> I think you might be in the right place. Where do you live? We

need to get

> your son to a doc for help. I think the sleep issues are huge for

our kind

> of kids. They have done studies about lack of sleep and normal

people soon

> become psychotic without sleep. He needs a work up from a doc who

> understands the immune issues. Someone who will test him for the

things

> that are wrong in his body and then work to correct them. He

sounds like

> most of our kids who are brilliant but have trouble expressing it.

>

> Marcia

>

>

>

>

[Guest guest]

I was diagnosed with and or ra or psoriatic arthritis. The only thing that

showed was my crp test which was 6.8 very very high.

Jolene

In a message dated 8/1/2008 11:11:17 P.M. Eastern Daylight Time,

patandpaula@... writes:

Ali, I am in the exact same boat; except first they said I had Polymyalgia

Rheumatica and then they said I have RA also. All of my blood work is normal

except mildly elevated CRP and Platelets. On this last blood test my BUN was

elevated because probably of the methotrexate. My doctor is worried about why

I am having so much pain and swelling, even in my fingers and hands, ankle,

knee

and now I have nodules in my hands that are very painful, possible

Dupuytren;s. I am at a loss what to do from here I wish I could help you but as

you

can tell I am getting pretty bummed out myself. I have been Plaq but stopped

still on Pred and mtx. a [ ] New to group

Hi. I am new to this group. My name is Ali and I was dx with RA in January

of this year. I

have been on prednisone, celebrex, plaquenil, and methotrexate. All of my

lab work is

always normal. I have no inflammatory response even when I have obvious

collections of

synovial fluid in all joints from knees down and shoulders down. My

rheumatoid and

prerheumatoid factors are negative. My ANA is negative. I have had

infectious disease

involved. Nobody seems to know a definitive diagnosis for me so they decided

to call it

RA. The prednisone helped instantly but I could not stay on it as I have two

toddlers and

need all the patients God can grant me. I have been on plaquenil since Dec

of last year

and that seems to not have done anything, though I am willing to give it a

full year of

trying. Methotrexate worked but I came off of it for surgery and I really

don't want to go

back on as it made me feel really bad for each couple of days after. Plus

blood work every

4 weeks for my liver and kidney function is no picnic. I don't know if this

could be related

to saline breast implants but I got them out 3 weeks ago. I have heard that

they can mimic

autoimmune symptoms but all my doctors discounted that saying there was no

medical

evidence...however, my pathology report came back as " chronic inflammation

and fibrotic

tissue " in the capsules of both breast implants. Glad to have them out and

will never have

them again. That said, Is there anyone else out there with RA who also has

all negative

factors? I am trying to figure out pain management and the cocktail of drugs

that works

for me. Anyone willing to share with me I will be very greatful.

Ali

[Non-text portions of this message have been removed]

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017

)

[Guest guest]

WELCOME TO THE GROUP ALI!!!! I TO TAKE PRED., PLAQ, & MTX. I'VE HAD RA FOR OVER

33YRS. IT SUX BUT I DEAL I HAVE TO FOR MY FAMILY!!!!! I'M FIGHTING AN URI RIGHT

NOW SO I'M MISERABLE.

THE DRS. PUT ME ON ANTIBIOTICS SO I HAVE TO STOP MY MTX. LATELY HOWEVER I'VE

BEEN FEELING KINDA LEARY ABOUT THE MTX CUZ MY BREATHING IS GETTING WORSE & I'M

HAVING A HARD TIME SWALLOWING ANYTHING!!

I WOULD STILL GET IT CHEACKED OUT CUZ NOW A DAYS U CAN NEVER B 2 SURE ABOUT

ANYTHING!

PAIN MANAGEMENT FOR ME RIGHT NOW IS NOTHING & I'M DEPRESSEDE MOST OF THE TIME!

I DO SMOKE MARIJUANA SOMETIMES FOR PAIN RELIEVE & IT TOTALLY WORKS, I DO LET MY

DRS. KNOW THOUGH

& THEY SAY DO WHAT MAKES U FEEL GOOD.........

WELL I HOPE U FEEL BETTER SOON & DON'T THINK I'M CRAZY FOR THE SENTENCE ABOVE,

THEY JUST NEED TO MAKE IT LEGAL! GOD BLESS, MELYNDAGAMEZ

[ ] New to group

Hi.  I am new to this group.  My name is Ali and I was dx with RA in January of

this year.  I

have been on prednisone, celebrex, plaquenil, and methotrexate.  All of my lab

work is

always normal.  I have no inflammatory response even when I have obvious

collections of

synovial fluid in all joints from knees down and shoulders down.  My rheumatoid

and

prerheumatoid factors are negative.  My ANA is negative.  I have had infectious

disease

involved.  Nobody seems to know a definitive diagnosis for me so they decided to

call it

RA.  The prednisone helped instantly but I could not stay on it as I have two

toddlers and

need all the patients God can grant me.  I have been on plaquenil since Dec of

last year

and that seems to not have done anything, though I am willing to give it a full

year of

trying.  Methotrexate worked but I came off of it for surgery and I really don't

want to go

back on as it made me feel really bad for each couple of days after.  Plus blood

work every

4 weeks for my liver and kidney function is no picnic.  I don't know if this

could be related

to saline breast implants but I got them out 3 weeks ago.  I have heard that

they can mimic

autoimmune symptoms but all my doctors discounted that saying there was no

medical

evidence...however, my pathology report came back as " chronic inflammation and

fibrotic

tissue " in the capsules of both breast implants.  Glad to have them out and will

never have

them again.  That said, Is there anyone else out there with RA who also has all

negative

factors?  I am trying to figure out pain management and the cocktail of drugs

that works

for me.  Anyone willing to share with me I will be very greatful.

Ali

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

[Guest guest]

Ali, I am in the exact same boat; except first they said I had Polymyalgia

Rheumatica and then they said I have RA also. All of my blood work is normal

except mildly elevated CRP and Platelets. On this last blood test my BUN was

elevated because probably of the methotrexate. My doctor is worried about why I

am having so much pain and swelling, even in my fingers and hands, ankle, knee

and now I have nodules in my hands that are very painful, possible

Dupuytren;s. I am at a loss what to do from here I wish I could help you but

as you can tell I am getting pretty bummed out myself. I have been Plaq but

stopped still on Pred and mtx. a [ ] New to group

Hi. I am new to this group. My name is Ali and I was dx with RA in January of

this year. I

have been on prednisone, celebrex, plaquenil, and methotrexate. All of my lab

work is

always normal. I have no inflammatory response even when I have obvious

collections of

synovial fluid in all joints from knees down and shoulders down. My rheumatoid

and

prerheumatoid factors are negative. My ANA is negative. I have had infectious

disease

involved. Nobody seems to know a definitive diagnosis for me so they decided

to call it

RA. The prednisone helped instantly but I could not stay on it as I have two

toddlers and

need all the patients God can grant me. I have been on plaquenil since Dec of

last year

and that seems to not have done anything, though I am willing to give it a

full year of

trying. Methotrexate worked but I came off of it for surgery and I really

don't want to go

back on as it made me feel really bad for each couple of days after. Plus

blood work every

4 weeks for my liver and kidney function is no picnic. I don't know if this

could be related

to saline breast implants but I got them out 3 weeks ago. I have heard that

they can mimic

autoimmune symptoms but all my doctors discounted that saying there was no

medical

evidence...however, my pathology report came back as " chronic inflammation and

fibrotic

tissue " in the capsules of both breast implants. Glad to have them out and

will never have

them again. That said, Is there anyone else out there with RA who also has all

negative

factors? I am trying to figure out pain management and the cocktail of drugs

that works

for me. Anyone willing to share with me I will be very greatful.

Ali

[Guest guest]

Ali and Group

Welcome Ali to our wonderful group. I learned a lot from out support

group. I am sure you will like it here. I had no idea how much help

was out there for RA till I came here. I have a great rheumy. Now I

say that cause she gave me prednisone which is great. I heard it

would make you feel very hungry. I been on it for less than a week

and my eating habits havent changed, Thank God, cause I am over

weight.

gentle hugs to everyone

Clora

> Hi. I am new to this group. My name is Ali and I was dx with RA

in January of this year. I

> have been on prednisone, celebrex, plaquenil, and methotrexate.

All of my lab work is

> always normal. I have no inflammatory response even when I have

obvious collections of

> synovial fluid in all joints from knees down and shoulders down.

My rheumatoid and

> prerheumatoid factors are negative. My ANA is negative. I have

had infectious disease

> involved. Nobody seems to know a definitive diagnosis for me so

they decided to call it

> RA. The prednisone helped instantly but I could not stay on it as

I have two toddlers and

> need all the patients God can grant me. I have been on plaquenil

since Dec of last year

> and that seems to not have done anything, though I am willing to

give it a full year of

> trying. Methotrexate worked but I came off of it for surgery and

I really don't want to go

> back on as it made me feel really bad for each couple of days

after. Plus blood work every

> 4 weeks for my liver and kidney function is no picnic. I don't

know if this could be related

> to saline breast implants but I got them out 3 weeks ago. I have

heard that they can mimic

> autoimmune symptoms but all my doctors discounted that saying

there was no medical

> evidence...however, my pathology report came back as " chronic

inflammation and fibrotic

> tissue " in the capsules of both breast implants. Glad to have

them out and will never have

> them again. That said, Is there anyone else out there with RA who

also has all negative

> factors? I am trying to figure out pain management and the

cocktail of drugs that works

> for me. Anyone willing to share with me I will be very greatful.

>

> Ali

>

[Guest guest]

I am in the same boat, my blood work negative, she told me my inflammation level

was elevated (not sure what the tech term for that is)...I am currently on pred

shots...(which are driving me insane, they are nt helping,im aggitated at

everything and i take care of small grandchildren,and ive blown up so big in 2

weeks my fat girl clothes are tight) and plaquenil,celebrex,neurotin,some

stomach meds,and vicodin for pain as needed...my diagnosis at this

point...inflammatory auto immune disese with connective tissue disease....she

keeps talking about putting me on mtx, was afraid but after hearing all of its

positive results here i am strongly considering it..i want to say as you start

reading these messages you are going to be a little freaked out because it will

come off negative at first but believe me...dont stop reading or asking

questions...it will start making sense...wishing all of you wonderful people a

pain free day.

[Guest guest]

Welcome, .

Your son sounds wonderful.

I'm Robin.

Again, welcome.

From: La Cava-Hamrick <klacavahamrick@...>Subject: ( ) New to group Date: Saturday, August 2, 2008, 1:15 PM

Hello,I've just joined the group and wanted to share a bit about my family. My son just turned five and was diagnosed (by our pediatrician) last November with Asperger's. My husband and I have two other children. The diagnosis has been a bit of a mixed bag for us; it explains so much about his behavior, but it is also quite depressing. We have already gone a couple of rounds with our school district (he has an IEP), but they refuse to acknowledge the diagnosis from his pediatrician and want to treat him as though he is lower functioning than he is. Apparently, they have not read up on the term "least restrictive environment" . We declined to put him in their SDC class after a rather rough 'observation' attempt. He is just getting speech twice a week. We pay the school district to have him in their PreK program and his teachers think that the school district is trying to warehouse him. When

they do math, clock or calendar work, he works substantially faster and is more accurate than the other children, writing - not so good. We are pretty much resigned to the fact that we will be battling them for the next fourteen years to get the services that we believe he is entitled to (we've decided to keep in the PreK an additional year and send him to Kindergarten when he is six). On the bright side, he is an expert at watches, timers and dvd players. He is also quite helpful around the house, he especially loves helping with the laundry since we recently replaced our washer and dryer with digital units!Thanks for reading,

[Guest guest]

...welcome...you said your son has an IEP and is in Pre-K? Is the Pre-K thru the school?

My thoughts are request the school test your son...put it in writing and that you want him tested completely...the whole 9 yards....then take the letter to the school and have them initial it and date it (your copy as well). They have a time limit by which the testing must be done (I think 60 days) from the time they receive the letter. So do it right away.

My son was tested and the school even had a psychologist speak with him (with me there of course). And, once all the results are in...you and the school can determine the best placement for your son.

If the school tries to give you a hard time....get an advocate. You and your son have rights....

And, if he has an IEP...his placement should be a TEAM decision....which includes you. I would also read as much as possible and bring in articles and such to back up what you say....

The one classroom I dislike is the inclusion classroom. It is a class made up of all type of kids at different levels and there are 2 teachers in there. My son was place in such a class in 5th and 6th. In math it was so bad for him he would shut down...I think it was just too noisy and he would end up putting his head on the table in order to shut out all the distractions and noise.

So, my first suggestion is write a letter to your son's school requesting that they test him....and state why (Asperger's) and bring it up to the school and have the secretary date and sign that she rec'd it. Also have her do it on your copy.

Sometimes the schools need to know that you know the laws and your rights...

Just my thoughts.

jan

Janice Rushen

Mom, Mentor, Wife, Teacher, Advocate, Accountant,

Maid, Taxi, Shopper, Bulletin Board Artist

Nanny, Crafter, Therapist, Friend, Sister, Aunt,

Daughter, Grand-daughter, Personal Care Aide,

Student, Believer, and Giver.

From: La Cava-Hamrick <klacavahamrick@ netscape. net>Subject: ( ) New to group Date: Saturday, August 2, 2008, 1:15 PM

Hello,I've just joined the group and wanted to share a bit about my family. My son just turned five and was diagnosed (by our pediatrician) last November with Asperger's. My husband and I have two other children. The diagnosis has been a bit of a mixed bag for us; it explains so much about his behavior, but it is also quite depressing. We have already gone a couple of rounds with our school district (he has an IEP), but they refuse to acknowledge the diagnosis from his pediatrician and want to treat him as though he is lower functioning than he is. Apparently, they have not read up on the term "least restrictive environment" . We declined to put him in their SDC class after a rather rough 'observation' attempt. He is just getting speech twice a week. We pay the school district to have him in their PreK program and his teachers think that the school district is trying to warehouse him. When

they do math, clock or calendar work, he works substantially faster and is more accurate than the other children, writing - not so good. We are pretty much resigned to the fact that we will be battling them for the next fourteen years to get the services that we believe he is entitled to (we've decided to keep in the PreK an additional year and send him to Kindergarten when he is six). On the bright side, he is an expert at watches, timers and dvd players. He is also quite helpful around the house, he especially loves helping with the laundry since we recently replaced our washer and dryer with digital units!Thanks for reading,

[Guest guest]

Hi ,

Welcome to this group. It has been so helpful for me to know that

other families are dealing with the same things and I hope you'll

find the same thing here.

My daughter just finished first grade at one of those schools that

makes the " top schools " lists, and I've been in due process and court

all year over a sensory break from music and PE. They don't believe

her reports either. It's very frustrating to have to deal with so

much ignorance and resistance but your son is very fortunate to have

you fighting for him. As you know our kids above all have trouble

speaking for themselves - because they're high functioning and

verbal, they don't always get the same concern and benefit of the

doubt as more severe kids, but because they are on the spectrum, they

can struggle just as much.

I look forward to hearing more about your son!

Amy

>

> Hello,

>

> I've just joined the group and wanted to share a bit about my

> family. My son just turned five and was diagnosed (by our

> pediatrician) last November with Asperger's. My husband and I have

> two other children. The diagnosis has been a bit of a mixed bag

for

> us; it explains so much about his behavior, but it is also quite

> depressing. We have already gone a couple of rounds with our

school

> district (he has an IEP), but they refuse to acknowledge the

> diagnosis from his pediatrician and want to treat him as though he

is

> lower functioning than he is. Apparently, they have not read up on

> the term " least restrictive environment " . We declined to put him

in

> their SDC class after a rather rough 'observation' attempt. He is

> just getting speech twice a week. We pay the school district to

have

> him in their PreK program and his teachers think that the school

> district is trying to warehouse him. When they do math, clock or

> calendar work, he works substantially faster and is more accurate

> than the other children, writing - not so good. We are pretty much

> resigned to the fact that we will be battling them for the next

> fourteen years to get the services that we believe he is entitled

to

> (we've decided to keep in the PreK an additional year and send him

to

> Kindergarten when he is six). On the bright side, he is an expert

at

> watches, timers and dvd players. He is also quite helpful around

the

> house, he especially loves helping with the laundry since we

recently

> replaced our washer and dryer with digital units!

>

> Thanks for reading,

>

>

[Guest guest]

Where do you live, ? I'm not sure why you have to pay to have him in the school pre-k program. If he has an IEP, it should be the school's cost and not yours? Has he had a full educational evaluation?

RoxannaYou're UniqueJust like everyone else...

( ) New to group

Hello,I've just joined the group and wanted to share a bit about my family. My son just turned five and was diagnosed (by our pediatrician) last November with Asperger's. My husband and I have two other children. The diagnosis has been a bit of a mixed bag for us; it explains so much about his behavior, but it is also quite depressing. We have already gone a couple of rounds with our school district (he has an IEP), but they refuse to acknowledge the diagnosis from his pediatrician and want to treat him as though he is lower functioning than he is. Apparently, they have not read up on the term "least restrictive environment". We declined to put him in their SDC class after a rather rough 'observation' attempt. He is just getting speech twice a week. We pay the school district to have him in their PreK program and his teachers think that the school district is trying to warehouse him. When they do math, clock or calendar work, he works substantially faster and is more accurate than the other children, writing - not so good. We are pretty much resigned to the fact that we will be battling them for the next fourteen years to get the services that we believe he is entitled to (we've decided to keep in the PreK an additional year and send him to Kindergarten when he is six). On the bright side, he is an expert at watches, timers and dvd players. He is also quite helpful around the house, he especially loves helping with the laundry since we recently replaced our washer and dryer with digital units!Thanks for reading, No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.10/1587 - Release Date: 8/2/2008 5:30 PM

[Guest guest]

Hi ,

If you have a dx from a doc your school should not give you a

problem. My son has been called quote normal by his school due to

his grades and his ability to function in a regular classroom. I have

to remind them all the time at every IEP that he has AS. It really is

exhausting to have to try to prove that your child has AS, like he

doesnt and Im just trying to get over on the system LOL. Yeah right.

They stopped all his support at school towards the end of the school

year and said he was cured.HA HA. I told them to come to my house for

one day after school and they would change their minds

immediately.LOL. I threw a fit and demanded an IEP which you have the

right to do any time at least in MI and Im sure that is everywhere,

and He was put back on and regained all the therapy he was getting

prior to this crap and I know that next year I will probably have to

deal with it again and the funny part is that his therapist and

social workers and teachers all agree that he needs this extra help

yet when they do the paper work for the IEP everything looks good on

paper and he doesnt qualify for the special needs. Then I found out

that all I need is a dx from his doc saying he has AS and the school

has to make the IEP fit his needs. Last semester they put on the

paper work that he needed help in math which he does and low and

behold he qualified for the special needs. It amazes me what we have

to go through to get our kids the help they need and are entitled

to. The school my son attends is the best school in our district for

all special needs kids. We have classrooms just with down syndrome

kids and classrooms with wonderful teachers that specialize in kids

that range in the entire autistic spectrum some kids are full blown

autistic and others are highly functiong AS. It is a great school and

my son is getting a wonderful education and all the teachers work

with me closely its just the damm paperwork that causes most of the

problems. I guess if I had collin in one of the special education

classes I wouldnt have the problems that I do, but he functions good

for the most part in regular ed classes, and until his sensory issues

become to much for him to handle in regular ed then I will consider

the other classrooms. If I were you I would do some homework and

find which school in your district has the best program that deals

with kids like ours and because we have open enrollment you can send

your child to any school you want. Its best to do it now so your

child doesnt get ajusted to his surroundings and friends and then has

to be pulled away, change is not something our kids adapt to very

well. Another suggestion is to bring your childs social worker in on

all your IEP's, I dont know why but when my sons social worker is in

on the meetings they seem to go much smoother and also that way

everyone that is involved with your son is on the same page. It

becomes a full time job keeping all of collins health care takers on

the same page. Sorry I keep rambling on I guess the main thing I

wanted to get across to you was as long as your childs doc writes his

dx down on a script pad or in a letter or whatever way he does it and

it states he has AS then your son should be getting all the help that

his school offers. The school cant go above a doc's dx so the IEP

becomes a formality that has to be done so the school can get their

funding and the state can keep track on the number of kids with this

dx., and whatever else they need plus it gives you the ability to

make a plan with the teachers on what help your child will be getting

throughout the school year. Hope this makes sense and helps ya out a

little bit. Good Luck,

>

> Where do you live, ? I'm not sure why you have to pay to have

him in the school pre-k program. If he has an IEP, it should be the

school's cost and not yours? Has he had a full educational

evaluation?

>

> Roxanna

> You're Unique

> Just like everyone else...

> ( ) New to group

>

>

> Hello,

>

> I've just joined the group and wanted to share a bit about my

> family. My son just turned five and was diagnosed (by our

> pediatrician) last November with Asperger's. My husband and I

have

> two other children. The diagnosis has been a bit of a mixed bag

for

> us; it explains so much about his behavior, but it is also quite

> depressing. We have already gone a couple of rounds with our

school

> district (he has an IEP), but they refuse to acknowledge the

> diagnosis from his pediatrician and want to treat him as though

he is

> lower functioning than he is. Apparently, they have not read up

on

> the term " least restrictive environment " . We declined to put him

in

> their SDC class after a rather rough 'observation' attempt. He is

> just getting speech twice a week. We pay the school district to

have

> him in their PreK program and his teachers think that the school

> district is trying to warehouse him. When they do math, clock or

> calendar work, he works substantially faster and is more accurate

> than the other children, writing - not so good. We are pretty

much

> resigned to the fact that we will be battling them for the next

> fourteen years to get the services that we believe he is entitled

to

> (we've decided to keep in the PreK an additional year and send

him to

> Kindergarten when he is six). On the bright side, he is an expert

at

> watches, timers and dvd players. He is also quite helpful around

the

> house, he especially loves helping with the laundry since we

recently

> replaced our washer and dryer with digital units!

>

> Thanks for reading,

>

>

>

>

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.138 / Virus Database: 270.5.10/1587 - Release Date:

8/2/2008 5:30 PM

>

[Guest guest]

> We have already gone a couple of rounds with our school

> district (he has an IEP), but they refuse to acknowledge the

> diagnosis from his pediatrician and want to treat him as though he is

> lower functioning than he is.

Hi --welcome to the group. What is his IEP for since they are

not recognizing the AS dx? You should request a full special ed eval

in writing, but don't expect all that much since school districts

don't always do great evals. It really helped us to go get our own

eval done from a neuropsychologist who specializes in the autism

spectrum. The school district was more willing to listen to him and

he gave very detailed recommendations on what my son's accommodations

should look like. Not that we aren't still ironing out the details

with the school district, but it got them turned around and headed in

the right direction. Things keep progressing.

Ruth

[Guest guest]

Hi and welcome!

When I fought with the school district over my daughter's school placement, I

called the State's Board of Education. While they didn't have any county

authority, they did give me some excellent advice about how I could leverage

IDEA2004 to my advantage--and file a complaint if my daughter's needs were not

met. Sometimes just dropping the name of the Special Ed person from the State

Board is enough to get what you want.

Good luck with your fight!

Jaelynne

[Guest guest]

Hi Bev. I hope you get some relief at the pain

clinic. I just started prednisone and MTX yesterday.

I got a little relief with the pred and am hopeful I

can get this under control again. I had to come off

everything before surgery and now I am far enough out

post op. I will probably get labs done again here

soon so we will see if anything changes. I have not

had to take anything really heavy for the pain and I

hope I don't. I need all my wits about me with two

toddlers at home Let me know if your doc explains

this diagnosis. Take care.

Ali

--- Bev Heal <hopeful55552000@...> wrote:

>

> Hi Ali  my name is Bev. I am a lurker but your email

> strikes a chord. I have been diagnosed with Mixed

> connective tissue disease by 3 different rhemos. I

> am on prednisone, celebrex, plaquenil and

> methotrexate.All of my lab work now is always

> normal. My ana is negative. I was sent to a fourth

> for another opinion. He disagreed with the others,

> giving " my condition " a something something pain

> syndrome. He is not my normal rheumo. I have pain

> and sometimes swelling in most joints and have had

> to take oxycontin and Capadex for the pain and

> sometimes that doesn't work. I have an appointment

> with the pain clinic this afternoon to see what they

> can suggest. I have been before and found them down

> to earth. My GP who I saw this morning could not

> explain what this new condition was. I will see my

> normal rheumo on the 18th Aug, I will be very

> interested in what she will have to say. We have

> tried to get me off the prednisone, reduce the

> Methotrexate and the

> Celebrex but each time we have had a marked

> increased in the pain levels. I will let you know

> what the pain clinic has to say.

>  

> Bev

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

Hmmm how did he rule out rsd.. there is no test for it. I have it.

Jolene

In a message dated 8/6/2008 12:33:02 A.M. Eastern Daylight Time,

hopeful55552000@... writes:

Hi Ali My trip to the pain clinic was interesting. Dr said I don't

have chronic regional pain syndrome but have centrally mediated pain, something

to do with the pain pathway in the spinal cord and brain causing

hyperalgesia and allodynia. He talked fast so it was difficult to understand.

He has

changed my medications, added a Norspan patch and stopped the oxycontin and

increased the Lyrica to a 75mg dose in the morning. That leaves me a bit spacey

until I get used to it. At first the norspan patch gave me a good headache but

that seemed to have passed. I am also to take Panadol 4 times a day to boost

the others. So far I have had a reduction in my pain levels. It will be

interesting to see what my regular rheumo says as the plan is to reduce my

methotrexate and prednisone and celebrex. I am also to increase my exercise

tolerance. I forgot to mention i I also went the infectious diseases road. We

will

see what the next week brings when

medications are more in the system.I well remember what is was like chasing

little ones and being in pain, mine have grown up now.

Bev

>

> Hi Ali my name is Bev. I am a lurker but your email

> strikes a chord. I have been diagnosed with Mixed

> connective tissue disease by 3 different rhemos. I

> am on prednisone, celebrex, plaquenil and

> methotrexate. All of my lab work now is always

> normal. My ana is negative. I was sent to a fourth

> for another opinion. He disagreed with the others,

> giving " my condition " a something something pain

> syndrome. He is not my normal rheumo. I have pain

> and sometimes swelling in most joints and have had

> to take oxycontin and Capadex for the pain and

> sometimes that doesn't work. I have an appointment

> with the pain clinic this afternoon to see what they

> can suggest. I have been before and found them down

> to earth. My GP who I saw this morning could not

> explain what this new condition was. I will see my

> normal rheumo on the 18th Aug, I will be very

> interested in what she will have to say. We have

> tried to get me off the prednisone, reduce the

> Methotrexate and the

> Celebrex but each time we have had a marked

> increased in the pain levels. I will let you know

> what the pain clinic has to say.

>

> Bev

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Non-text portions of this message have been removed]

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017

)

[Guest guest]

Hi Ali  My trip to the pain clinic was interesting. Dr said I don't have

chronic regional pain syndrome but have centrally mediated pain, something to do

with the pain pathway in the spinal cord and brain causing hyperalgesia and

allodynia. He talked fast so it was difficult to understand. He has changed my

medications, added a Norspan patch and stopped the oxycontin and increased the

Lyrica to a 75mg dose in the morning. That leaves me a bit spacey until I get

used to it. At first the norspan patch gave me a good headache but that seemed

to have passed. I am also to take Panadol 4 times a day to boost the others. So

far I have had a reduction in my pain levels. It will be interesting to see what

my regular rheumo says as the plan is to reduce my methotrexate and prednisone

and celebrex. I am also to increase my exercise tolerance. I forgot to mention i

I also went the infectious diseases road. We will see what the next week brings

when

medications are more in the system.I well remember what is was like chasing

little ones and being in pain, mine have grown up now.

     Bev

>

> Hi Ali  my name is Bev. I am a lurker but your email

> strikes a chord. I have been diagnosed with Mixed

> connective tissue disease by 3 different rhemos. I

> am on prednisone, celebrex, plaquenil and

> methotrexate. All of my lab work now is always

> normal. My ana is negative. I was sent to a fourth

> for another opinion. He disagreed with the others,

> giving " my condition " a something something pain

> syndrome. He is not my normal rheumo. I have pain

> and sometimes swelling in most joints and have had

> to take oxycontin and Capadex for the pain and

> sometimes that doesn't work. I have an appointment

> with the pain clinic this afternoon to see what they

> can suggest. I have been before and found them down

> to earth. My GP who I saw this morning could not

> explain what this new condition was. I will see my

> normal rheumo on the 18th Aug, I will be very

> interested in what she will have to say. We have

> tried to get me off the prednisone, reduce the

> Methotrexate and the

> Celebrex but each time we have had a marked

> increased in the pain levels. I will let you know

> what the pain clinic has to say.

>  

> Bev

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

I hope you are feeling better Bev. I hope the new

combo of meds works. I started mtx and pred again on

Mon now that I am post op enough and the pred gives

such quick results it is amazing. So far so good with

no bad effects from the mtx. Does celebrex do

anything for you? I don't find much of an effect from

it and wonder if it is worth the risks associated with

it if it isn't really doing anything for me. Do you

take plaquenil? I have been on that for 9 months now

and it doesn't seem to be doing anything either. We

have a family history of bad retinal problems so I

don't want to stay on that if it isn't doing any good

either. But I said I was willing to give it a full

year so I guess I will pick there brains at my appt in

Sept. I hope this finds you well, or getting better

at least. Oh, is it odd to have heat really help, hot

baths, heating pads, etc? They always say to ice

stuff but I think the heat is key for this. What is

your take?

Ali

--- Bev Heal <hopeful55552000@...> wrote:

> Hi Ali  My trip to the pain clinic was interesting.

> Dr said I don't have chronic regional pain

> syndrome but have centrally mediated pain, something

> to do with the pain pathway in the spinal cord and

> brain causing hyperalgesia and allodynia. He talked

> fast so it was difficult to understand. He has

> changed my medications, added a Norspan patch and

> stopped the oxycontin and increased the Lyrica to a

> 75mg dose in the morning. That leaves me a bit

> spacey until I get used to it. At first the norspan

> patch gave me a good headache but that seemed to

> have passed. I am also to take Panadol 4 times a day

> to boost the others. So far I have had a reduction

> in my pain levels. It will be interesting to see

> what my regular rheumo says as the plan is to reduce

> my methotrexate and prednisone and celebrex. I am

> also to increase my exercise tolerance. I forgot to

> mention i I also went the infectious diseases road.

> We will see what the next week brings when

> medications are more in the system.I well remember

> what is was like chasing little ones and being in

> pain, mine have grown up now.

>      Bev

>

>

>

> >

> > Hi Ali  my name is Bev. I am a lurker but your

> email

> > strikes a chord. I have been diagnosed with Mixed

> > connective tissue disease by 3 different rhemos. I

> > am on prednisone, celebrex, plaquenil and

> > methotrexate. All of my lab work now is always

> > normal. My ana is negative. I was sent to a fourth

> > for another opinion. He disagreed with the others,

> > giving " my condition " a something something pain

> > syndrome. He is not my normal rheumo. I have pain

> > and sometimes swelling in most joints and have had

> > to take oxycontin and Capadex for the pain and

> > sometimes that doesn't work. I have an appointment

> > with the pain clinic this afternoon to see what

> they

> > can suggest. I have been before and found them

> down

> > to earth. My GP who I saw this morning could not

> > explain what this new condition was. I will see my

> > normal rheumo on the 18th Aug, I will be very

> > interested in what she will have to say. We have

> > tried to get me off the prednisone, reduce the

> > Methotrexate and the

> > Celebrex but each time we have had a marked

> > increased in the pain levels. I will let you know

> > what the pain clinic has to say.

> >  

> > Bev

> >

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

Its Complex Regional Pain syndrome. Its described as buring pain, etc.

Heres a site on it

_http://www.rsds.org/2/what_is_rsd_crps/index.html_

(http://www.rsds.org/2/what_is_rsd_crps/index.html)

Jolene

In a message dated 8/7/2008 12:22:04 A.M. Eastern Daylight Time,

hopeful55552000@... writes:

Hi Jolene, what is rsd? Bev

[Non-text portions of this message have been removed]

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017

)

[Guest guest]

Bev,

Don't worry about your muckup. I reread mine and am shocked at my

spelling and grammar! LOL, I think it's the RA, I swear. I used to

type very well, now I look up and God only know what the words are

that I have just put down! My fingers don't do what they used to on

the keyboard, my head spells differently than my fingers.

You don't have to apologize for errors here.

I make lots of mistakes and no one ever mentions it. Good thing, there

would be so many, I would have to stop posting.

I hope you are having a good day.

Shirley

--- In , Bev Heal <hopeful55552000@...>

wrote:

>

> Hi Group sorry for the muckup in one of my emails.

> Hi Jolene, thanks for the info on Complex Regional Pain Syndrome. I

think the Pain dr got the first word wrong as it fits his description

of chronic regional pain syndrome.  Bev.

>

>

>

>

>

[Guest guest]

Hi, when you mentioned that your son breaks out in hives over so many

things that rarely cause problems in others I thought about

histamines. I hate to sound like a broken record, but a lot of my

anti-histamine info came from a site about controlling chronic hives

with diet. Having his blood histamine level checked might be useful.

If you're interested in this, please e-mail me offlist- I'm not

checking the board very often right now. Of course this could be

totally irrelevant to you, but maybe it would help? Oh, and I hear

you about living in the kitchen! My son's diet isn't as strict as

yours, but both of my kids and myself have a lot of allergies that

aren't the same, so feeding all of us is tricky. I hope enzymes help too!

-Sierra

> > Hi everyone,

> >

> > I have just joined and thought I would introduce myself and the

> reason for joining. My name is and I have two adorable little

> boys aged almost 5yrs & 2.5yrs, my oldest son is the reason I'm here.

> We have spent the last 3 years trying to help him in every which way

> possible. The Paed told us just after he turned two that he was 95%

> sure he would be making a diagnosis of autism but wanted to wait

> another six months to see how he progressed. In that time I

> implemented the " failsafe " diet and by the time we went back he had

> made huge improvements and even shook the Paed's hand and said hello.

> This particular Paed was a non believer in diets making a difference

> (especially with autism) and was quite amazed at the difference and

> proceeded to tell us he was no longer confident in making a

> diagnosis. We saw one other paed also not very helpful and hence

> started our journey into Biomed treatments.

> >

> > We sought the advice of a dietitian who hadn't come across a

> child as sensitive as him before. At age 3 we removed gluten & casein

> and unfortunately in the process of us removing more and more from

> his diet he has become super sensitive and intolerant to everything

> but beef, lamb, chicken, potato, rice, canola oil & sugar. He breaks

> out in hives from things the doctors and specialists have never come

> across before and finally at the start of the year I convinced our

> allergist to write me a script for a hypoallergenic formula called

> Elecare as I have been so desperately worried about his nutrition. He

> made some improvements in speech, concentration & the hyperactivity

> lessened once he started on the formula - but we are far from there

> yet. We are having Biomed treatments but still need help with the

> diet & food intolerances/sensitivies.

> >

> > The last three years I've lived my life in the kitchen, cooking

> preparing and often throwing out things he won't eat. Driving from

> one store to the next for ingredients he can tolerate, encouraging

> every single meal time to get him to eat a mouthful. Many nights

> researching to find something that may help, trawling through recipes

> and trying to create my own out of what very limited ingredients he

> can tolerate is almost impossible. I'm tired beyond belief this

> journey has certainly taken a lot out of me, but like so many I will

> do anything I have to for my kids and certainly won't stop until I

> get there.

> >

> > To cut this short (I'd be here for hours otherwise) I met a lady

> who's son's symptoms are very similar to mine and she mentioned she

> tried digestive enzymes and was having great success. I have been

> again researching and feel there is a ray of hope that in time he may

> be able to start eating normally and we can have a life!

> >

> > So far I'm looking at Houston Trienza and another one was called

> DigestGold (enzymedica), I have a lot more of research to do I'm sure

> and would love any input/advice.

> > Look forward to reading the posts and learning more.

> >

> >

> > QLD, Australia

> >

> > Win a MacBook Air or iPod touch with 7.

> http://au.docs./homepageset<http://au.docs./homepage

> set>

> >

> >

[Guest guest]

There was a time when we too were down to pork, chicken, only salt and pepper to

flavor, white rice and water, and that was morning, noon and night. I too

counted every morsel consumed. He was very malnourished, had osteopenia and

broke his leg. I can't convey how bad it was or how worried I was at the time.

Ojibwa Tea, probiotics healed him sufficiently to increase his desire to eat,

enough that he was willing to try foods outside his usual repertoire. The

enzymes made increasing his food repertoire possible. I'd introduce a new food,

and wait for symptoms to appear. If they didn't, I'd increase how much I gave

him and the frequency. If we could go a week with no reaction, it was considered

safe. Then we moved onto the next food. We hit some foods that took years to

reintroduce, bananas, oranges, soy. Preservatives had to go, colorings had to

go, and this meant for supplements too. My son is a very solid 68 pounds at 9

years of age. His osteopenia is gone. He is a picture of healt

h, from his clear beautiful skin, his clear bright eyes, great teeth, and the

white patch of hair is finally down to a single white strand (his hair is very

short so it's easy to see). Now I know I can go to Great Plains Labs and order

the IgG blood test and get an accurate reading of foods he isn't digesting, but

that's fine as a starting point, not really practical to get a blood test every

week to see how they're reacting to the re-introduction of foods, for that it is

more by symptoms and behaviors.

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

From: Green <samjo0306@...>

Hi everyone,

Â

I have just joined and thought I would introduce myself and the reason for

joining. My name is and I have two adorable little boys aged almost 5yrs &

2.5yrs, my oldest son is the reason I'm here. We have spent the last 3 years

trying to help him in every which way possible. The Paed told us just after he

turned two that he was 95% sure he would be making a diagnosis of autism but

wanted to wait another six months to see how he progressed. In that time I

implemented the " failsafe " diet and by the time we went back he had made huge

improvements and even shook the Paed's hand and said hello. This particular Paed

was a non believer in diets making a difference (especially with autism) and was

quite amazed at the difference and proceeded to tell us he was no longer

confident in making a diagnosis. We saw one other paed also not very helpful and

hence started our journey into Biomed treatments.

Â

We sought the advice of a dietitian who hadn't come across a child as sensitive

as him before. At age 3 we removed gluten & casein and unfortunately in the

process of us removing more and more from his diet he has become super sensitive

and intolerant to everything but beef, lamb, chicken, potato, rice, canola oil

& Â sugar. He breaks out in hives from things the doctors and specialists have

never come across before and finally at the start of the year I convinced our

allergist to write me a script for a hypoallergenic formula called Elecare as I

have been so desperately worried about his nutrition. He made some improvements

in speech, concentration & the hyperactivity lessened once he started on the

formula - but we are far from there yet. We are having Biomed treatments but

still need help with the diet & food intolerances/sensitivies.

Â

The last three years I've lived my life in the kitchen, cooking preparing and

often throwing out things he won't eat. Driving from one store to the next for

ingredients he can tolerate, encouraging every single meal time to get him to

eat a mouthful. Many nights researching to find something that may help,

trawling through recipes and trying to create my own out of what very limited

ingredients he can tolerate is almost impossible. I'm tired beyond belief this

journey has certainly taken a lot out of me, but like so many I will do anything

I have to for my kids and certainly won't stop until I get there.

Â

To cut this short (I'd be here for hours otherwise) I met a lady who's son's

symptoms are very similar to mine and she mentioned she tried digestive enzymes

and was having great success. I have been again researching and feel there is a

ray of hope that in time he may be able to start eating normally and we can have

a life!

Â

So far I'm looking at Houston Trienza and another one was called DigestGold

(enzymedica), I have a lot more of research to do I'm sure and would love any

input/advice.

Look forward to reading the posts and learning more.

Â

QLD, Australia

Win a MacBook Air or iPod touch with 7.

http://au.docs./homepageset

[Guest guest]

> We sought the advice of a dietitian who hadn't come across a child

as sensitive as him before. At age 3 we removed gluten & casein and

unfortunately in the process of us removing more and more from his

diet he has become super sensitive and intolerant to everything but

beef, lamb, chicken, potato, rice, canola oil & Â sugar.

My son tolerated no foods. I used HNI enzymes and then rotated foods

to find what he tolerated with the enzymes. Adding back wheat caused

noticeable improvement.

ALA chelation and several supplements were required to eliminate my

son's food issues. Today, he can eat anything he wants, without enzymes.

Dana

[Guest guest]

Hi ,

Are you also a member of the australian biomed group? It's a

great place to get local resources - the moderator Jan is fantastic.

So are all the other members. They were very helpful and supportive

when I had to plan/execute a 3 month visit home with my son while

sticking to his diet and supplements.

Getting enzymes from the USA through Australian customs is quite

difficult at the moment, so please check in with the ozzie biomed

parents about how they are managing it. I took all of mine in my

luggage with a note from my son's doctor to avoid the problems.

Here is the name if you haven't already joined: " biomedicalautismgroup " .

(Australian living in California.)

>

> Hi everyone,

>  

> I have just joined and thought I would introduce myself and the

reason for joining. My name is and I have two adorable little

boys aged almost 5yrs & 2.5yrs, my oldest son is the reason I'm here.

We have spent the last 3 years trying to help him in every which way

possible. The Paed told us just after he turned two that he was 95%

sure he would be making a diagnosis of autism but wanted to wait

another six months to see how he progressed. In that time I

implemented the " failsafe " diet and by the time we went back he had

made huge improvements and even shook the Paed's hand and said hello.

This particular Paed was a non believer in diets making a difference

(especially with autism) and was quite amazed at the difference and

proceeded to tell us he was no longer confident in making a diagnosis.

We saw one other paed also not very helpful and hence started our

journey into Biomed treatments.

>  

> We sought the advice of a dietitian who hadn't come across a child

as sensitive as him before. At age 3 we removed gluten & casein and

unfortunately in the process of us removing more and more from his

diet he has become super sensitive and intolerant to everything but

beef, lamb, chicken, potato, rice, canola oil &  sugar. He breaks out

in hives from things the doctors and specialists have never come

across before and finally at the start of the year I convinced our

allergist to write me a script for a hypoallergenic formula called

Elecare as I have been so desperately worried about his nutrition. He

made some improvements in speech, concentration & the hyperactivity

lessened once he started on the formula - but we are far from there

yet. We are having Biomed treatments but still need help with the diet

& food intolerances/sensitivies.

>  

> The last three years I've lived my life in the kitchen, cooking

preparing and often throwing out things he won't eat. Driving from one

store to the next for ingredients he can tolerate, encouraging every

single meal time to get him to eat a mouthful. Many nights researching

to find something that may help, trawling through recipes and trying

to create my own out of what very limited ingredients he can tolerate

is almost impossible. I'm tired beyond belief this journey has

certainly taken a lot out of me, but like so many I will do anything I

have to for my kids and certainly won't stop until I get there.

>  

> To cut this short (I'd be here for hours otherwise) I met a lady

who's son's symptoms are very similar to mine and she mentioned she

tried digestive enzymes and was having great success. I have been

again researching and feel there is a ray of hope that in time he may

be able to start eating normally and we can have a life!

>  

> So far I'm looking at Houston Trienza and another one was called

DigestGold (enzymedica), I have a lot more of research to do I'm sure

and would love any input/advice.

> Look forward to reading the posts and learning more.

>  

>

> QLD, Australia

>

>

> Win a MacBook Air or iPod touch with 7.

http://au.docs./homepageset

>

>

[Guest guest]

Thank you Carla,

Appreciate the advice - I'm expecting some behaviour probs as normally happens

when we change anything.

Have my fingers crossed for results though!!

Kind regards

New to group

Hi everyone,

I have just joined and thought I would introduce myself and the reason for

joining. My name is and I have two adorable little boys aged almost 5yrs &

2.5yrs, my oldest son is the reason I'm here. We have spent the last 3 years

trying to help him in every which way possible. The Paed told us just after he

turned two that he was 95% sure he would be making a diagnosis of autism but

wanted to wait another six months to see how he progressed. In that time I

implemented the " failsafe " diet and by the time we went back he had made huge

improvements and even shook the Paed's hand and said hello. This particular Paed

was a non believer in diets making a difference (especially with autism) and was

quite amazed at the difference and proceeded to tell us he was no longer

confident in making a diagnosis. We saw one other paed also not very helpful and

hence started our journey into Biomed treatments.

We sought the advice of a dietitian who hadn't come across a child as sensitive

as him before. At age 3 we removed gluten & casein and unfortunately in the

process of us removing more and more from his diet he has become super sensitive

and intolerant to everything but beef, lamb, chicken, potato, rice, canola oil &

sugar. He breaks out in hives from things the doctors and specialists have never

come across before and finally at the start of the year I convinced our

allergist to write me a script for a hypoallergenic formula called Elecare as I

have been so desperately worried about his nutrition. He made some improvements

in speech, concentration & the hyperactivity lessened once he started on the

formula - but we are far from there yet. We are having Biomed treatments but

still need help with the diet & food intolerances/ sensitivies.

The last three years I've lived my life in the kitchen, cooking preparing and

often throwing out things he won't eat. Driving from one store to the next for

ingredients he can tolerate, encouraging every single meal time to get him to

eat a mouthful. Many nights researching to find something that may help,

trawling through recipes and trying to create my own out of what very limited

ingredients he can tolerate is almost impossible. I'm tired beyond belief this

journey has certainly taken a lot out of me, but like so many I will do anything

I have to for my kids and certainly won't stop until I get there.

To cut this short (I'd be here for hours otherwise) I met a lady who's son's

symptoms are very similar to mine and she mentioned she tried digestive enzymes

and was having great success. I have been again researching and feel there is a

ray of hope that in time he may be able to start eating normally and we can have

a life!

So far I'm looking at Houston Trienza and another one was called DigestGold

(enzymedica) , I have a lot more of research to do I'm sure and would love any

input/advice.

Look forward to reading the posts and learning more.

QLD, Australia

Win a MacBook Air or iPod touch with 7. http://au.docs. /

homepageset<http://au.docs. / homepageset>