New to Group

[Guest guest]

Hi ,

Thanks for your reply and best of luck for you and your little man.

I'll keep my fingers crossed for us both!

Re: New to group

Hi, .

I'm new too. Just wanted to say HI! Your story is very similar to

mine...my son is almost 3 and has many of the same issues. We just

started TriEnza a couple of weeks ago and are still not on full doses

yet (having trouble administering them with lunch at school.) So,

the only input I have right now is to say start slow. We are just

doing them with foods he already had in his diet and he is still

having some " withdrawl symptoms " (probably from the little soy left

in his diet.) We started on 1/2 dose one meal per day for a few

days, then 1/2 dose for two meals...and so on...as per Houston's

recommendations.

Hope you find success (hope we find it too!) Good luck to you!

>

> 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]

Hi ,

Yes I am a member of the Biomed group and Jan a few years ago helped us start on

the biomed adventure.

I have just learnt getting the enzymes through customs is a problem - I'll look

into this some more.

Thanks again for your reply - greatly appreciated!

Kind regards

Re: New to group

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: " biomedicalautismgr oup " .

(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]

Hi - welcome to the group. There is so much that I am still

learning about this whole RA thing - it is an auto-immune disorder,

though. I take Sulfasalazine daily, MTX weekly and Folic Acid every

day EXCEPT the day of the MTX. I also am taking part in a clinical

study for a new RA med called TCZ, but I may have to stop the study

due to some undesirable side effects. I wondered if you stopped

taking the Folic Acid on the day you take the MTX because it can make

a world of difference on how MTX works. As far as your feelings of

frustration, maybe you should check back with your Rheumy - you may

need a med adjustment. Best of luck to you. Keep us

posted....Doreen

>

> Hi everyone. I'm 30 yrs old and was diagnosed with RA 3 yrs ago. A

> year ago I was considered moderate RA. Now I am not so sure. I see

> my rhuematologist every 3 months and thought this was finally under

> control. However, the past couple of months have been tough. I am

> battling with all the medication I take for this and am just

> feeling... I don't know. Frustrated. I think I need to educate

> myself more on RA, alternate therapies and maybe some stories about

> it going into remission all on it's own? Has anyone ever heard of

> this happening? Has anyone ever experienced constant aches with

> meds? I take mtx weekly, folic acid daily, and humira injections

> every other week. When I started the Humira a year ago, it was

> great-- now, I think I am just used to it? I don't know anyone else

> with RA and am hoping to connect with people that deal with the

> challenges of this stupid, horrible illness..disease...what is it

> considered anyway? I think I am feeling down because my foot and

> hip is killing me. I sure don't feel 30.

>

[Guest guest]

,

I'm 31 and I have had RA for the past 7 years and I haven't felt my

age in years. I would talk to your rheumy, I haven't tried humira ans

I don't know the dosing for it, but maybe you just need to get a

higher dose.

I consider myself fairly knowledageable on RA, but I am always

learning something new, thanks to this group. You have come to the

right place...here, everyone knows exactly how you feel.

>

> Hi everyone. I'm 30 yrs old and was diagnosed with RA 3 yrs ago. A

year

> ago I was considered moderate RA. Now I am not so sure. I see my

> rhuematologist every 3 months and thought this was finally under

> control. However, the past couple of months have been tough. I am

> battling with all the medication I take for this and am just

feeling...

> I don't know. Frustrated. I think I need to educate myself more on

RA,

> alternate therapies and maybe some stories about it going into

> remission all on it's own? Has anyone ever heard of this happening?

Has

> anyone ever experienced constant aches with meds? I take mtx

weekly,

> folic acid daily, and humira injections every other week. When I

> started the Humira a year ago, it was great-- now, I think I am

just

> used to it? I don't know anyone else with RA and am hoping to

connect

> with people that deal with the challenges of this stupid, horrible

> illness..disease...what is it considered anyway? I think I am

feeling

> down because my foot and hip is killing me. I sure don't feel 30.

>

[Guest guest]

Jen,

Hello, sounds like my son at that age. Can't say it gets easier, but their are alot more good than bad days. My son had an obsession with star wars but now it has turned to history, which is a good thing. The only thing that breaks my heart is he still has no friends. But my son doesn't mind, because his intelligence is so far above his peers, he can't tolerate the other kids for lack of. The parents are the ones who have to learn that the children don't mind not having friends. Welcome to the group

Hi everyone. I just found out about this group and I'm happy to have found it, I've related to so many of the posts already.

I have an 8 year old son with aspergers, ADHD, dsygraheia and some anxiety issues. He is main stream and last year was pulled out only part of the day, but this year he is suppose to have an aid in the class room for one period. (even though most of those in attendance at his last IEP meeting thought he would benefit from a full day aid, but that's a story for another day.) lol

He is fairly high functioning, but lacks very much in the social end. He really has no friends at school, and plays alone at recess. (it breaks my heart, because he's such a good kid) I can't wait to get more advice through all the posts I plan to go back and read.

Oh and Star Wars is the latest obsession these days. lol

Thanks, and I look forward to being apart of this group.

Jen in NJ

Find phone numbers fast with the New AOL Yellow Pages!

[Guest guest]

You are right! Our AS children are happy to be alone. It does not mean they do not like people. On the contrary, for instance, my teen AS d(17), loves and understand even those children that might have been hurtful to her. She is a freshman in College and her roommate is a normal nice girl, they do not do things together but I can see they get along well, each one doing their own things. Problems: many! But we are dealing with them as they come. I have had many of the issues parents talk about here, - can see that college turned out (until now at least) the best environment for her, even though she would like to be at home in her room, following her own routines. I am trying to show her how confort is not always the best. Sent from my BlackBerry® smartphone with SprintSpeedFrom: teresa walker <rockymtnjd@...>Date: Wed, 1 Oct 2008 03:57:47 -0700 (PDT)< >Subject: Re: ( ) New to Group Jen, Hello, sounds like my son at that age. Can't say it gets easier, but their are alot more good than bad days. My son had an obsession with star wars but now it has turned to history, which is a good thing. The only thing that breaks my heart is he still has no friends. But my son doesn't mind, because his intelligence is so far above his peers, he can't tolerate the other kids for lack of. The parents are the ones who have to learn that the children don't mind not having friends. Welcome to the group Hi everyone. I just found out about this group and I'm happy to have found it, I've related to so many of the posts already. I have an 8 year old son with aspergers, ADHD, dsygraheia and some anxiety issues. He is main stream and last year was pulled out only part of the day, but this year he is suppose to have an aid in the class room for one period. (even though most of those in attendance at his last IEP meeting thought he would benefit from a full day aid, but that's a story for another day.) lol He is fairly high functioning, but lacks very much in the social end. He really has no friends at school, and plays alone at recess. (it breaks my heart, because he's such a good kid) I can't wait to get more advice through all the posts I plan to go back and read. Oh and Star Wars is the latest obsession these days. lol Thanks, and I look forward to being apart of this group. Jen in NJ Find phone numbers fast with the New AOL Yellow Pages!

[Guest guest]

My son would rather be with friends than be alone. He can be alone, which is good since he has trouble making friends, but he'd much rather spend time with a boy his age than sit in his room or play video games by himself.

Re: ( ) New to Group

Jen,

Hello, sounds like my son at that age. Can't say it gets easier, but their are alot more good than bad days. My son had an obsession with star wars but now it has turned to history, which is a good thing. The only thing that breaks my heart is he still has no friends. But my son doesn't mind, because his intelligence is so far above his peers, he can't tolerate the other kids for lack of. The parents are the ones who have to learn that the children don't mind not having friends. Welcome to the group

Hi everyone. I just found out about this group and I'm happy to have found it, I've related to so many of the posts already.

I have an 8 year old son with aspergers, ADHD, dsygraheia and some anxiety issues. He is main stream and last year was pulled out only part of the day, but this year he is suppose to have an aid in the class room for one period. (even though most of those in attendance at his last IEP meeting thought he would benefit from a full day aid, but that's a story for another day.) lol

He is fairly high functioning, but lacks very much in the social end. He really has no friends at school, and plays alone at recess. (it breaks my heart, because he's such a good kid) I can't wait to get more advice through all the posts I plan to go back and read.

Oh and Star Wars is the latest obsession these days. lol

Thanks, and I look forward to being apart of this group.

Jen in NJ

Find phone numbers fast with the New AOL Yellow Pages!

[Guest guest]

Welcome to our group, Jen! Feel free to join in anytime you like!

RoxannaYou're UniqueJust like everyone else...

( ) New to Group

Hi everyone. I just found out about this group and I'm happy to have found it, I've related to so many of the posts already.

I have an 8 year old son with aspergers, ADHD, dsygraheia and some anxiety issues. He is main stream and last year was pulled out only part of the day, but this year he is suppose to have an aid in the class room for one period. (even though most of those in attendance at his last IEP meeting thought he would benefit from a full day aid, but that's a story for another day.) lol

He is fairly high functioning, but lacks very much in the social end. He really has no friends at school, and plays alone at recess. (it breaks my heart, because he's such a good kid) I can't wait to get more advice through all the posts I plan to go back and read.

Oh and Star Wars is the latest obsession these days. lol

Thanks, and I look forward to being apart of this group.

Jen in NJ

Find phone numbers fast with the New AOL Yellow Pages!

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.169 / Virus Database: 270.7.5/1697 - Release Date: 9/29/2008 7:40 AM

[Guest guest]

,

I agree with you, my son would rather be with a friend than be alone

too. When he is alone it gives him too much time to obsess on things

he doesnt need to be worrying about. He seems much happier when he

is with a friend and has less anxiety believe it or not. When he is

alone he tends to think too much and worry about what if's. I try to

plan to have a friend here on weekends to spend the night and he has

a friend that comes over after school for a couple hours 3 or 4 times

a week. My son will not go to anyones house, he has too much anxiety

so I always have his friends over here, which I dont mind , but I

hate the fact that he doesnt leave the house except for school or

when we take him some place. I have a question for anyone out there.

My son scares easily. If he is in the same room with me playing or

whatever and I say something out of the blue, in a normal tone voice,

he jumps out of his skin. I scare the crap out of him. How??? Im in

the same room with him and I just talk. I asked the doctor about this

and he said its because when collin is thinking or playing he is in

his own world and blocks out all noises on the outside , so when I

say something I enter his quite world and scare the crap out of him.

I guess I can see this but it is very irritating cause he does it all

day long. I feel bad for him, his little heart feels like its beating

out of his chest. He is also afraid of the dark. Not to the point

that I have to leave a light on at bedtime, but he just doesnt like

the dark and says he is sort of afraid of it. Maybe most kids are

like that. Any way if any one has a comment on my question please

post it. Thanks,

>

> My son would rather be with friends than be alone.  He can be

alone, which is good since he has trouble making friends, but he'd

much rather spend time with a boy his age than sit in his room or

play video games by himself. 

>

>

>

> Re: ( ) New to Group

>

> Jen,

>

> Hello, sounds like my son at that age. Can't say it gets easier,

but their are alot more good than bad days. My son had an obsession

with star wars but now it has turned to history, which is a good

thing. The only thing that breaks my heart is he still has no

friends. But my son doesn't mind, because his intelligence is so far

above his peers, he can't tolerate the other kids for lack of. The

parents are the ones who have to learn that the children don't mind

not having friends.  Welcome to the group 

>

> Hi everyone. I just found out about this group and I'm happy to

have found it, I've related to so many of the posts already.

>

> I have an 8 year old son with aspergers, ADHD, dsygraheia and some

anxiety issues. He is main stream and last year was pulled out only

part of the day, but this year he is suppose to have an aid in the

class room for one period. (even though most of those in attendance

at his last IEP meeting thought he would benefit from a full day aid,

but that's a story for another day.) lol

>

> He is fairly high functioning, but lacks very much in the social

end. He really has no friends at school, and plays alone at recess.

(it breaks my heart, because he's such a good kid) I can't wait to

get more advice through all the posts I plan to go back and read.

>

> Oh and Star Wars is the latest obsession these days. lol

>  

> Thanks, and I look forward to being apart of this group.

>

> Jen in NJ

>

>

>

> ________________________________

> Find phone numbers fast with the New AOL Yellow Pages!

>

[Guest guest]

I was thinking about Collin´s being easily scared.I was as a child too, and I still jump high if someone comes behind my back.It possibly has connection with being in one´s own world for moments and also with the fact, that it is hard to recognise people, somewhat of a prosopagnosy or what it is called. I sometimes don´t even recognise my own family IF I DON´T EXPECT TO SEE THEM. It is sort of processing delay, again! I perfectly recognise the librarian in the library when I speak to her about books, but if I meet her in the street with her coat on, it may take minutes before recognizing her.

--- Den tors 2008-10-02 skrev gina <ginak1117@...>:

Från: gina <ginak1117@...>Ämne: Re: ( ) New to GroupTill: Datum: torsdag 2 oktober 2008 03.34

,I agree with you, my son would rather be with a friend than be alone too. When he is alone it gives him too much time to obsess on things he doesnt need to be worrying about. He seems much happier when he is with a friend and has less anxiety believe it or not. When he is alone he tends to think too much and worry about what if's. I try to plan to have a friend here on weekends to spend the night and he has a friend that comes over after school for a couple hours 3 or 4 times a week. My son will not go to anyones house, he has too much anxiety so I always have his friends over here, which I dont mind , but I hate the fact that he doesnt leave the house except for school or when we take him some place. I have a question for anyone out there. My son scares easily. If he is in the same room with me playing or whatever and I say something out of the blue, in a normal tone voice, he jumps out

of his skin. I scare the crap out of him. How??? Im in the same room with him and I just talk. I asked the doctor about this and he said its because when collin is thinking or playing he is in his own world and blocks out all noises on the outside , so when I say something I enter his quite world and scare the crap out of him. I guess I can see this but it is very irritating cause he does it all day long. I feel bad for him, his little heart feels like its beating out of his chest. He is also afraid of the dark. Not to the point that I have to leave a light on at bedtime, but he just doesnt like the dark and says he is sort of afraid of it. Maybe most kids are like that. Any way if any one has a comment on my question please post it. Thanks, >> My son would rather be with friends than be alone. He can be alone, which is good since he has trouble making friends, but he'd much rather spend time with a boy his age than sit in his room or play video games by himself. > > > > Re: ( ) New to Group> > Jen,> > Hello, sounds like my son at that age. Can't say it gets easier, but their are alot more good than bad days. My son

had an obsession with star wars but now it has turned to history, which is a good thing. The only thing that breaks my heart is he still has no friends. But my son doesn't mind, because his intelligence is so far above his peers, he can't tolerate the other kids for lack of. The parents are the ones who have to learn that the children don't mind not having friends. Welcome to the group > > Hi everyone. I just found out about this group and I'm happy to have found it, I've related to so many of the posts already.> > I have an 8 year old son with aspergers, ADHD, dsygraheia and some anxiety issues. He is main stream and last year was pulled out only part of the day, but this year he is suppose to have an aid in the class room for one period. (even though most of those in attendance at his last IEP meeting thought he would benefit from a full day aid, but that's a

story for another day.) lol> > He is fairly high functioning, but lacks very much in the social end. He really has no friends at school, and plays alone at recess. (it breaks my heart, because he's such a good kid) I can't wait to get more advice through all the posts I plan to go back and read.> > Oh and Star Wars is the latest obsession these days. lol> > Thanks, and I look forward to being apart of this group.> > Jen in NJ> > > > ____________ _________ _________ __> Find phone numbers fast with the New AOL Yellow Pages!>

Låna pengar utan säkerhet.

Sök och jämför lån hos Kelkoo.

[Guest guest]

Welcome! Glad you feel better, it takes a little bit to find the

right meds that work. This is a great group, hope you stay awhile,

Tawny

--- In , " kyblonde1126 " <r_robinson1126@...>

wrote:

>

> Greetings from the Bluegrass state! I've had RA since 2005. It

> started with swelling and pain in my hands and general pain all

over.

> I'm taking mtx pills, etolac, and now humira shots every other

week.

> I've been on humira for 2 months and starting to feel an increase in

> energy level. I've enjoyed reading the message board the past few

> days. It helps to know that I'm not alone coping with this painful

> disease.

>

[Guest guest]

Cheryl,

We are glad to have you as an addition to this group. If you have

anything to add to a question or comment, please don't hesitate to

jump in. We all learn from each other.

When you see your rheummy next be sure to let him know that the

current meds don't seem to be working. It may be time for a change

instead of adding more.

I recently added Enbrel, but once it starts working I will be able

to drop the MTX.

I hope you have a good day.

Shirley

--- In , " cheryl.dines " <cheryl.dines@...>

wrote:

>

> Hi all. I am new to this group and was diagnosed with RA in Dec

07.

> Being 37 and quite healthy and relatively fit, I have struggled so

much

> with the thought of having this hideous disease. I take mtx,

arava,

> plaquenil, sulphasalazine and other supplements to offset the side-

> effects. What is next? Surely they can't make me take more? I

still

> experience pain with this past week having it in my shoulders in

> addition to hands, feet, knees and ankles! I am so new to all

of

> this I still don't recognise it until I have pain for several

days.

> Then I have to take prednisone to try and bring it under control.

I

> tried Mobic but it doesn't seem to work for me.

>

> Just wondering if anyone can give me any advice on how to cope

> mentally. I can take the pain, but the thought of deformed joints

and

> a life of managing a condition just doesn't seem possible.

>

[Guest guest]

Welcome!  Our 2 1/2 year old son was in a similar situation (he didn't

qualify for speech at 18 months but then did at 24 months).  He also lost a few

words...for ex. he used to say " bubble " but then would only say " bub. "   He

worked with Early Intervention from about 24 months and has now transitioned

into Child Find preschool (he also has a diagnosis of mild PDD-NOS).  The SLP

had to work with him for about 5 months before being able to really make the

official diagnosis of apraxia. 

   It sounds like you're definitely doing all the right things, the signing will

really help ease frustration...we LOVE " Signing Time " DVDs.  I recently started

giving one capsule of Nordic Naturals Complete Omega 3,6,9, which is the same

formula as the ProEFA.  You can order ProEFA through http://www.speech411.com 

..  I just squeeze the capsule into juice in the morning.  And I'll be following

what I've seen recommended by many parents on the board...one capsule for a

month, then add another capsule for another month, and then add one capsule of

ProEPA.  Our son had been on another type of DHA supplement, but over this past

week, I've seen lots of improvement, he's said several new words since starting

the Nordic Naturals (I hadn't seen this type of improvement on the other brand,

so it looks like he's responding to the Nordic Naturals better).    

  Anyway, hope that helps, and good luck! 

 

B.

From: Chrissy <chrissyb2@...>

Subject: [ ] New to Group

Date: Monday, October 13, 2008, 5:50 PM

Hi There,

My son Aiden is almost 26 months. At 18 months he was tested through

Indiana's First Steps program and was found to be slightly speech

delayed, but since he excelled developmentally they said he didn't

qualify for services at that time. We had him tested again at 23

months and this time he qualified for speech only. He has a IFSP

(IEP for children 0-3). He doesn't have a diagnosis and his Speech

Therapist (through First Steps) says it is too early to tell if he

has apraxia. He has speech therapy in our house one day a week for

60 minutes. She uses " play therapy " with him. We also had his

hearing tested at 20 months to rule out any hearing issue and he was

fine.

My biggest concern is that he has lost words. At 14 months he said

his first words " itty " (kitty) and " kee " (cookie) and (my

husband's name). He would say these over and over in context. At

around 18 months he started saying " mom " and lost the other 3 words.

Now at 26 months he says 9 words/approximation s. We have been

teaching him signs to aid in both our frusterations, he knows 25

signs that he uses regularly. He counts pictures, stairs, etc but it

comes out uh, uh, uh, uh. He is just starting to learn and repeat

some animal sounds and make vehicle sounds while he plays.

Everything is uh, uh?, uh! Which is very frusterating.

Last week, I signed him up for a speech program through St. Xavier

University in Chicago. It will start in January and last 12 weeks.

He will get evaluated there, and recieve one hour of speech a week

from a Master's Student in Speech disorders. It is called the Ludden

Clinic. I guess there are several similar clinics throughout the US

that offer this at reduced cost to parents (since our healthcare

doesn't cover speech).

Last week, I also started him on Fish Oil Supplements by Dr. Sears.

They are chewable orange flavored. The serving is 5 a day for only a

total of 415mg of Omega 3 Fatty Acids. He hates them and I bribe him

with M & M (I know, bad).

I have read that the theraputic dose for the Omega 3 is 500-1000mg.

How many mg does your LO take? I was looking into the Nortic

Naturals, ProEPA do you buy the capsules and smash them into

something, or the liquid? Also, are you buying the jr. version or

the full strength?

Thanks for the support!

[Guest guest]

Tina, welcome to the group.

People with RA are at a higher risk of lymphoma independent of the

DMARDs they may use. Uncontrolled RA inflammation is also linked with

the development of lymphoma.

Please go see your rheumatologist soon.

Not an MD

On Fri, Nov 7, 2008 at 8:01 PM, tinasmmrs <tinasmmrs@...> wrote:

> Hi! I am 37 and was originally dx with RA when I was 20 and in

> college. My rheumatologist said I had some similarities with JRA when

> I was dx which would make sense b/c about 7 months before was when

> the fatigue set in. I went into " remission " when I became pregnant

> with my first child at 27. I had another son and continued to stay in

> remission. I was able to discontinue all meds and have't been on

> anything but Advil here and there until the past few months.

> Unfortunately I have been putting off calling the rheumatologist

> b/c I have feared it is slowly coming back.I haven't been there since

> 2000. I have permannent joint damage in my pointer fingers and wrist

> from the original dx, and had knee surgery at 22 to remove all the

> synovial tissue. Although my finger joints are swollen as they used

> to be, the damaged joints ache more and more. I have also had back

> pain since May, which I had been trying to chalk up to a really

> horrible mattress. The overwhelming symptom that makes me think it is

> back is the fatigue and overall achiness. If I take my 4 Advil, the

> pain recedes within an hour.

> My youngest son developed leukemia (he's great now and has been off

> treatment for 16 months now, yeah!) , and I have even taken his

> leftover decadron pills for relief on days. Since it gave me relief

> the way prednisone did in the past, that just makes it more evident

> that it is probably back.

> Well, enough of my rant. My biggest question is has anyone been in

> remission for a long time to have it come back, and also in their

> back? I have taken almost every drug and stopped at mtx. The newer

> drugs weren't available back then. What worked way back was

> azsulfadine??(sp?) and prednisone (3-5 mg daily). I tried plaquenil,

> minocycline, relafen, naproxen, cortisone shots, no gold shots

> though, knee surgery (which worked great). I didn't want mtx b/c I

> wanted to get pregnant.

> Now I am scared about some of the newer drugs b/c they may cause

> lymphoma/leukemia. With a family history of it, I don't know if it

> would be a choice for me or one I would want.

> Any advice or similar situations you could share would be greatly

> appreciated.

>

> Thanks!

>

> Tina S.

[Guest guest]

WELCOME BETTY, THIS GROUP IS AWESOME & VERY INFORMATIVE TO EVERYBODY SUFFERNG

FROM THIS HORRIABLE DISEASE... WELL I C MY RHEUMMY EVERY 6WEEKS DEPENDING ON IF

I HAVE A SEVER FLARE UP THEN EVERY 4 WEEKS. EVERY DR. MAY B DIFFERENT... I'M

SORRY FOR YOUR DX BUT IF CAUGHT SOON ENOUGH THEN IT CAN B  TREATED ASAP. BETTY

JUST ASK AWAY ANYTHING UR CURIUOS ABOUT, I'M SURE U'LL GET ALOT OF RESPONSES &

ALOT OF DIFFERENT STORIES TO B TOLD... I'M NOT SURE ABOUT THE ASTHMA MAYB

SOMEONE ELSE WILL KNOW....

I HOPE U FEEL BETTER SOON.. GOD BLESS, MELYNDAGAMEZ 11/13/08 9:45A.M.CDT

________________________________

From: eafarchette <eafarchette@...>

Sent: Thursday, November 13, 2008 7:42:48 AM

Subject: [ ] New to group

Good morning all,

My name is Betsy and I would like to introduce myself as a new member.

I have just recently been diagnosed with RA (only 2 weeks ago). I live

on the island of St. Croix in the US Virgin Islands. My Rheumatologist

is located in Orlando, Fl but we do have one closer in Puerto Rico. Any

recommendations as to how often I should be seeing a Rheumatologist?

I have millions of questions that I hope I will see answers to here in

the support group, as I am still learning what this is doing to my body

and the signs I can look for to determine if I am flaring up or not.

One major question I have is can this affect my asthma? I had an

epsiode out of the blue last night, and when it was over, my shoulders,

elbows and wrists were killing me (I'm still having trouble today).

Any advice would be welcomed!

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

[Guest guest]

Hello Betsy

I just wanted to say welcome to the group!

Although I haven't been posting here for long, I've had RA for quite a

few years and I've learnt so much here - and met people who understand

what it's like.

Hugs from

Elaine

[Guest guest]

Hi Betsy, welcome to the group!

I have pretty bad asthma as well as the RA. My asthma seems to get

worse along with RA flares. I suspect it has to do with overall

inflammation. I also seem to be a little more challenged in

controlling my asthma since my RA was diagnosed. I do know that some

of the meds may be associated with respiratory issues.

I just think of the new challenges to asthma as part of my overall

condition and keep a close watch on it.

Kim

>

> Good morning all,

>

> My name is Betsy and I would like to introduce myself as a new member.

> I have just recently been diagnosed with RA (only 2 weeks ago). I live

> on the island of St. Croix in the US Virgin Islands. My Rheumatologist

> is located in Orlando, Fl but we do have one closer in Puerto Rico. Any

> recommendations as to how often I should be seeing a Rheumatologist?

>

> I have millions of questions that I hope I will see answers to here in

> the support group, as I am still learning what this is doing to my body

> and the signs I can look for to determine if I am flaring up or not.

>

> One major question I have is can this affect my asthma? I had an

> epsiode out of the blue last night, and when it was over, my shoulders,

> elbows and wrists were killing me (I'm still having trouble today).

>

> Any advice would be welcomed!

>

[Guest guest]

Betsy,

Welcome to the group. I am so sorry for the reason that you had

which caused you to search us out.

I see my rheummy every two months. I take MTX so I have my bloodwork

done monthly. My rheummy says as long as there are no problems with

my bloodwork every two months is OK.

I have no experience with asthma, so I am shooting from the hip

here, but I would think that anything that causes stress could

trigger and attack. If I am wrong, please forgive me.

Remission is achievable with the correct treatment, so don't let it

get you down, if you can help it.

We feel your pain. That is the best thing about this group. We

understand and are here to listen. Whenever you need an

understanding ear or to just vent, we are here.

I hope you are feeling better soon.

Shirley

--- In , " eafarchette " <eafarchette@...>

wrote:

>

> Good morning all,

>

> My name is Betsy and I would like to introduce myself as a new

member.

> I have just recently been diagnosed with RA (only 2 weeks ago). I

live

> on the island of St. Croix in the US Virgin Islands. My

Rheumatologist

> is located in Orlando, Fl but we do have one closer in Puerto

Rico. Any

> recommendations as to how often I should be seeing a

Rheumatologist?

>

> I have millions of questions that I hope I will see answers to

here in

> the support group, as I am still learning what this is doing to my

body

> and the signs I can look for to determine if I am flaring up or

not.

>

> One major question I have is can this affect my asthma? I had an

> epsiode out of the blue last night, and when it was over, my

shoulders,

> elbows and wrists were killing me (I'm still having trouble today).

>

> Any advice would be welcomed!

>

[Guest guest]

Hi Betsy and welcome to the group! Wow, you really have to travel far

in order to see a Rheumy. I would at least call them and tell them

what happened when you had that asthma attack. RA can affect the

lungs, too. I see my Rheumy every 8 weeks now, but in the beginning it

was every 4 weeks and phone calls/visits if need be in between. Are

you on any RA medicines yet? You may need a steroid to help you along,

too. Keep us posted. Hang in there..........Doreen

>

> Good morning all,

>

> My name is Betsy and I would like to introduce myself as a new

> member. I have just recently been diagnosed with RA (only 2 weeks

> ago). I live on the island of St. Croix in the US Virgin Islands.

> My Rheumatologist is located in Orlando, Fl but we do have one

> closer in Puerto Rico. Any recommendations as to how often I should

> be seeing a Rheumatologist?

>

> I have millions of questions that I hope I will see answers to here

> in the support group, as I am still learning what this is doing to

> my body and the signs I can look for to determine if I am flaring

> up or not.

>

> One major question I have is can this affect my asthma? I had an

> epsiode out of the blue last night, and when it was over, my

> shoulders, elbows and wrists were killing me (I'm still having

> trouble today).

>

> Any advice would be welcomed!

>

[Guest guest]

Good Morning All...

 

Thank you all so much for such a warm welcome to the group. I am already learing

so much about my RA here. I know the more I read the more I will learn. So far I

am only on 200 mg of Plaquenil 2 x daily with Motrin as needed (no more than

2400 mg a day or I will have to look at something that is less likely to create

problems for the Kidneys).

 

My PC says he can handle most of my day-to-day treatments and labs from here

with the occasional trips stateside to see my Rheumy. I believe that hey are

going to work together via phone/fax consults. Unfortunately we do not have a

Rheumy here on island.

 

The hardest part so far is getting use to the idea that one minute I'm moving

pretty good and the next I feel like a little old lady. I now joking refer to

this as my " New Normal " . My family and I are still adjusting and learning about

all of this. The hardest thing mentally so far is having to remove my wedding

rings. I am still looking for a new way to wear them as my band was my

Great-Grandmother's. Funny how something so small can weigh on your mind when I

have much bigger things to worry about !

 

Betsy

 

 

[Guest guest]

Betsy and group;

 

Good morning, even if it's the next morning lol.  I read than text the next

morning.  You're very welcome Betsy.  I too learned a lot from being in this

lovely group Betsy.

 

I don't have a problem getting use to RA so far,  I thinks it's because it came

on me gradually. 

 

Betsy that is so wonderful to have your great great grandmothers wedding band, 

how so sweet.  I would be concerned also if I could not wear a gem from so far a

distant a relative, especially since I have worn it for so many years.  I pray

you have pain free days.  God bless and take care. 

 

gentle hugs

Clora

 

******************************************************** 

 

From: Farchette <eafarchette@...>

Subject: [ ] Re: New to group

Date: Monday, November 17, 2008, 9:07 AM

Good Morning All...

 

Thank you all so much for such a warm welcome to the group. I am already learing

so much about my RA here. I know the more I read the more I will learn. So far I

am only on 200 mg of Plaquenil 2 x daily with Motrin as needed (no more than

2400 mg a day or I will have to look at something that is less likely to create

problems for the Kidneys).

 

My PC says he can handle most of my day-to-day treatments and labs from here

with the occasional trips stateside to see my Rheumy. I believe that hey are

going to work together via phone/fax consults. Unfortunately we do not have a

Rheumy here on island.

 

The hardest part so far is getting use to the idea that one minute I'm moving

pretty good and the next I feel like a little old lady. I now joking refer to

this as my " New Normal " . My family and I are still adjusting and learning about

all of this. The hardest thing mentally so far is having to remove my wedding

rings. I am still looking for a new way to wear them as my band was my

Great-Grandmother' s. Funny how something so small can weigh on your mind when I

have much bigger things to worry about !

 

Betsy

 

 

[Guest guest]

Hi ,

Welcome to the group you'll like it here. Lots of great people with good

information and understanding and support.

Sorry you have this dreadful disease. It is good to hear that your husband

is understanding. But don't feel bad that he doesn't understand. I

honestly don't think anyone can understand unless that have it themselves god

forbid. I don't wish this on anyone!

I was diagnosed last year. I know that I had it for longer because I would

have problems with my knees and just didn't think anything of it and thought

maybe I kept bumping them. I was working in a fast paced factory with heavy

steel parts. I was always bumping and cutting myself by accident. My

wrist and fingers and hands would hurt and I just figured I was over working

them.

Then about a year before I was diagnosed my feet were giving me trouble. I

just blew that off figuring it was because I was getting old and over

weight. I just figured that was how you felt when ya get old! LOL!

Then I started having problems with my shoulders. Was getting to the point

where I couldn't lift my arm. Thank god! it wasn't both at the same time!

This was going on for awhile it just so happens on my days off work so it

wasn't effecting my job yet.

Then one morning I couldn't lift my arm and the pain was so severe. I tried

so hard for about 20 minutes while crying and trying to get my hair up. (I

was thinking how ridiculous this is!) I had to get my hair up and get a stupid

hat on because I worked in a kitchen. The night before I had worked the night

shift and had the same problem but was able to yank up my arm and lean it

on the wall to hold it up while I put the tie in my hair. That wouldn't work

this morning... I ended up running over to my neighbors house and getting

her out of bed so she could put my hair up and get the stupid hat on my head

for me.

That did it! I made up my mind I was making appointment to see a doctor. I

made it through that shift working one armed and crying and saying OW! OW!

OW! all day. LOL! I finely went to doctors because I knew something was

wrong! They took some blood tests and came back saying I had RA.

My Rheumy has tried me on the MTX and predisone. That didn't work out so

well so now he has me trying Sulfazine and predisone. He left me on that to

see if it gets any better. If that doesn't improve my well being by the next

time I see him. He is going to start me on Humira. He gave me some

Tramodal for pain. He doesn't believe in giving me pain medication because he

says

we just need to knock out the inflammation that is causing the pain. So far

I haven't found anything that relieves the pain. We did go out and purchase

a used hot tub that seems to help some while I'm sitting in it if I don't

move.

That is my story and I'm sticking to it!

It is nice to meet you ! Welcome to the group!!

Michigan.

I can smell spring in the air!! Yeewhooooooo!!!!!

Posted by: " catwoman61943 " _catwoman61943@... _

(mailto:catwoman61943@...?Subject= Re:New%20to%20Group) _catwoman61943 _

(catwoman61943)

Wed Mar 4, 2009 9:28 am (PST)

Hi everyone. My name is and I've recently been diagnosed with RA. I

had Grave's Disease for 3 years and finally opted to have my thyroid removed

almost 1 year ago. I was feeling great and then my legs started to hurt -

actually they hurt before but we attributed it to the thyroid disease (also an

autoimmune disease). I'm totally heartbroken that I fixed one thing and then

got another. I'm 46 years old (tomorrow) and feel like 110. I started

Methotrexate this past Saturday (4 pills once a week), I'm taking a 1 mg. folic

acid

pill every day and I'm starting on Humira within the next 2 weeks (I'm going

for my TB test tonight). So that's my story.

I would love to hear from anyone who wishes to share their story(s) with

me.. I need all the support I can get (my husband is very supportive but just

doesn't get it). I would also love to hear from others who also take Humira and

get your experience taking it. Does it make you feel better? Any side

effects, etc????

Thanks everyone. I hope to get to know most (if not all) of you and

hopefully when I have more experience I can help by sharing my experiences with

others.

Have a great day.

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100126575x1219957551x1201325337/aol?redir=http:%2\

F%

2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%26hmpgID%3D62%26bcd\

%3DfebemailfooterNO62)

[Guest guest]

Hi ,

Welcome to the club that nobody really wants to be a member of.

CML is now considered a chronic disease. When I was diagnosed 10 years it

was a death sentence. This dramatic change came about with the development

of the drug Gleevec.

You will find this a very knowledgeable and and caring group. Keep asking

questions and we will help.

PCRU: CML is characterized by the presence of the Philadelphia Chromosome

in your blood. PCR (polymerase chain reaction ) is the name of a test that

detects the presence of the Philadelphia Chromosome in your system. It is

the most sensitive of the three tests that are available BMB, FISH, PCR).

The term PCRU means that the Philadelphia Chromosome was Undetectable in

your system with the PCR test.

Even though you are PCRU it doesn't mean that you are cured of CML. If you

stop taking Gleevec, the CML becomes detectable again. Although PCRU is the

best place to be at with your CML, less than 10% of the population achieve

this level of remission.

The really good news is that most people will live out a full life with CML.

After a while you will get to figure out what the acronyms in my signature

mean. It just takes a little bit of time.

Also, I am still confident that a cure for CML will be discovered in my

lifetime.

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmiller@...

Tel: 613-726-1117

Tel: 561-429-3309 in Florida

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

duane36_1999

Sent: March-23-09 8:38 PM

Subject: [ ] New to Group

Hello everyone. I am . On Friday 03/20/2009 my 18 yo daughter was

diagnosed with Leukemia, and the definitive diagnoses came today and it is

CML. They are going to start her on Gleevic, today I think. After some

browsing there is an overwhelming amount of information out there and lots

of it good to read and lots of it also scary to read. So I will start

simple. It looks like PCRU is something good, with that said, what is PCRU.

Thank you,

[Guest guest]

hello there..

welcome to the group.I am so happy to find this group of inspiring people.I know

you will be happy too. You will find good things here about CML. It is not as

scary as what we thought of it before. Thanks to this group.

 

virginia

From: duane36_1999 <duane36_1999@...>

Subject: [ ] New to Group

Date: Tuesday, 24 March, 2009, 8:38 AM

Hello everyone. I am . On Friday 03/20/2009 my 18 yo daughter was diagnosed

with Leukemia, and the definitive diagnoses came today and it is CML. They are

going to start her on Gleevic, today I think. After some browsing there is an

overwhelming amount of information out there and lots of it good to read and

lots of it also scary to read. So I will start simple. It looks like PCRU is

something good, with that said, what is PCRU.

Thank you,

[Guest guest]

Hi , that had to be one heck of a shock, I'm so sorry your daughter has

CML.  I was 65 when I was diagnosed, and that was 14 years ago!!

Life expectancy at that time was 5 years, give or take a couple. Today I doubt

they even give you a life expectancy with all the great new drugs available. 

Great progress has been made in research and in no time your daughter will be

living like she never heard the dreaded cancer words.  There are a lot of us old

timers on this site, how about living over 34 years with it?  There is a

directory of cml terms someplace, I can't put  my hands on it right now, but I'm

sure someone will come up with it for you, it's very informative and explains

all those confusing letters your going to come across. I bet Lottie will come up

with it.  Good luck, Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of

Michigan 06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

waiting to enter the Ariad trial at U of Mich.

 

From: duane36_1999 <duane36_1999@...>

Subject: [ ] New to Group

Date: Monday, March 23, 2009, 8:38 PM

Hello everyone. I am . On Friday 03/20/2009 my 18 yo daughter

was diagnosed with Leukemia, and the definitive diagnoses came today and it is

CML. They are going to start her on Gleevic, today I think. After some

browsing there is an overwhelming amount of information out there and lots of it

good to read and lots of it also scary to read. So I will start simple. It

looks like PCRU is something good, with that said, what is PCRU.

Thank you,