New to this

[Guest guest]

Hi Marie:

You came to the right place. Welcome to our support group. I hope you have

good luck with your rheumtologist (RD) and that he can find some medication

that will work for you to relieve your pain. It may take awhile but it will

happen. Rest alot and take care until then.

Jeannette

[Guest guest]

Welcome, Marie!

You've come to the right place to complain! We are a truly compassionate,

informed group with a collectively great sense of humor.

Sorry about your RA diagnosis. Please try not to worry about your upcoming

visit with the rheumatologist. If this doctor is a good one, he/she will

calm many of your fears and treat you with medication to relieve your pain

and slow the progression of your disease.

Hope you like it here.

----- Original Message -----

From: <Gilkajon@...>

< egroups>

Sent: Friday, September 22, 2000 10:07 PM

Subject: [ ] New to this

> Hi all, my name is Marie I am 33 years old and I just been diagnosed

> with RA. My doctor gave me clebrex 200mg but now she said that I

> have to see a rheumatology specialist because my RF is high. So I

> will be going to see the Rheumatologist this week and I am kinda

> scared of what he going to say. I know that it will not be good

> because I get flare ups quite often almost everyday and i know that

> that is not a good sign. I'm in so much pain that I get tired of

> telling my family how much pain I have so I guess thats why i joined

> this group so i can complain to you guys :0) Thanks!

[Guest guest]

Welcome Marie,

Sorry about your dx, but you've come to the right place for support and

answers. At the bottom of every post are two web sites that have all kinds

of great information. Also, if you have any questions just ask, someone here

is sure to have an answer.

It's only natural to be scared. Your life (and body) is changing before your

eyes and there is nothing you can do about it. My best advice is read and

learn as much as you can about your disease and treatments out there for it.

Knowledge is power. Tery - FL

[Guest guest]

Complain away. I know how you feel and what you mean by your family

getting tired of hearing about the pain. I rarely say anything anymore

either. I just take my pain pills and hope for the best.

Jenna

FREE SPIRIT - Starlight Writers Publications

THE GUARDIANS OF GLEDE - SWP Editors Choice Award; SWP Stellar Award;

WordWeaving Award of Excellance

THE GREEN PUMPKIN - CrossroadsPub.com; furt Award Nominee

Homepage: www.geocities.com/jennakayfrancis

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Marie:

I forgot if I already welcomed you or not but if not welcome, and if I did,

welcome again. and a are our resident wizards. If you need some

questions to be answered, chances are they are the ones to find the answers

for you. I enjoy this group alot and I am sure you will as well. My sense

of humor is a little off the wall sometimes so please excuse me. Sometimes I

am the only one who understands what I am talking about cuz nobody replies.

They are so forgiving. Anyway, hope you like it here too.

Jeannette

[Guest guest]

Now Jenna:

I am sure your family cares alot. They just don't know what to do. That

seems to be my experience at least. Everybody feels bad when I am going

through a rough time but they don't know how to fix it which is what they

want to do. You can always complain to us and get feedback here. We will

sympathize, or tell you a joke or something cuz we understand.

Take care, Jeannette

[Guest guest]

Welcome Marie,

Complain as much as you want. We understand what you are going through.

The best way to deal with this disease is to learn everything you can about

it.

There are many different meds. and all of them react differently for each of

us.

Sometimes it takes trying many different meds before finding out what works

for

you. I hope you find your magic bullet quickly and get relief.

a

----- Original Message -----

From: <Gilkajon@...>

< egroups>

Sent: Friday, September 22, 2000 11:07 PM

Subject: [ ] New to this

>

> Hi all, my name is Marie I am 33 years old and I just been diagnosed

> with RA. My doctor gave me clebrex 200mg but now she said that I

> have to see a rheumatology specialist because my RF is high. So I

> will be going to see the Rheumatologist this week and I am kinda

> scared of what he going to say. I know that it will not be good

> because I get flare ups quite often almost everyday and i know that

> that is not a good sign. I'm in so much pain that I get tired of

> telling my family how much pain I have so I guess thats why i joined

> this group so i can complain to you guys :0) Thanks!

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

[Guest guest]

Welcome Marie,

Complain away. We have been known to write a few long posts

ourselves. We are very good listeners and offer our experiences for

everyone to learn from each other. You will like the group.

Regards,

Sylvia

> Hi all, my name is Marie I am 33 years old and I just been

diagnosed

> with RA. My doctor gave me clebrex 200mg but now she said that I

> have to see a rheumatology specialist because my RF is high. So I

> will be going to see the Rheumatologist this week and I am kinda

> scared of what he going to say. I know that it will not be good

> because I get flare ups quite often almost everyday and i know that

> that is not a good sign. I'm in so much pain that I get tired of

> telling my family how much pain I have so I guess thats why i

joined

> this group so i can complain to you guys :0) Thanks!

[Guest guest]

Hi Marie, welcome to the group. I'm glad to meet you. I'm new to

the group, but not new to RA. There are so many new treatments that

hopefully your rheumatologist will be able to find one that will

relieve the pain and slow the disease or better yet bring on a

remission. Good Luck!

T.

> Hi all, my name is Marie I am 33 years old and I just been

diagnosed

> with RA. My doctor gave me clebrex 200mg but now she said that I

> have to see a rheumatology specialist because my RF is high. So I

> will be going to see the Rheumatologist this week and I am kinda

> scared of what he going to say. I know that it will not be good

> because I get flare ups quite often almost everyday and i know that

> that is not a good sign. I'm in so much pain that I get tired of

> telling my family how much pain I have so I guess thats why i

joined

> this group so i can complain to you guys :0) Thanks!

[Guest guest]

new to this

>Dr. group,

>I just heard Dr. Goldberg for the first time yesterday at the

>conference in Iowa on medical tx for autism. I want to pursue this

>avenue right away, and am wondering if anyone in the Minneapolis area

>knows of a physician familiar with Goldberg's protocols or would be

>open to the ideas? I will be making an appt. with Dr. Orchard, an

>immunologist at the U of M, but don't know what his attitude will be.

>Thanks so much!

>Carla H.

>

>

>

>

>Responsibility for the content of this message lies strictly with

>the original author, and is not necessarily endorsed by or the

>opinion of the Research Institute.

>

>

>

[Guest guest]

Hi Carla,

I was at the conference as well. I met someone from MPLS who gave me the

name of a Dr. that is somewhat paralleling what Dr. G is doing. (As I was

informed) The woman's name is AJ and the Dr.'s name is Dr Gianucci? I am

not sure of the spelling because I was verbally informed. I would check into

her and actually let me know what you find out. I thought the conference was

great!! I really do like Dr. Goldberg though and if you can see him, I

would!! Good Luck! Kathy

[Guest guest]

Carla, Welcome to the list! My son is a patient of Dr. Goldberg's and we

have been extremely impressed with the care he has received. He has only

been on the protocol for 7 weeks and the autism specialist who saw him last

week (and had not seen him since we started the protocol) was AMAZED. When

you see someone every day I don't think the changes are as dramatic so it was

encouraging to hear her. She said his color is wonderful, he has lost the

" allergic shiners " and is a lot more focused. (we noticed the better color

in his face the second week on nizoral). I wanted to encourage you to keep

seeking help but also prepare you for the roadblocks (as many other parents

here can also). When I first got on this list, I got on the phone to the

Oregon Health Sciences neuroimmunologist to inquire about the theory and

autism figuring he would know. I contacted him as a professional (I'm a

nurse practitioner) about a " patient " (hey, I was desperate!) Anyway, he

dismissed the whole area as " way out in left field " . I was stunned. How can

these guys who are presumably well educated in the immune system miss this?

I trusted my better instincts and eventually we decided to go the the expert

and stop trying to find a substitute. I'm glad we did. The results speak

for themself no matter what the " professionals " say. Good Luck!! This list

is a great starting point.

[Guest guest]

When you asked the specialist for his opinion on did he actually say

that he had bothered to read any of the literature? I have had the same

experience and finally started pinning people down and as yet have not found

anyone who has actually done the reading! The best revenge is a good life.

Take your child back in another year and then point out how many other

children could have been helped if referred to a clinic...in another

year we should have quite a few more than just California! Kathy

-Northern New York

[Guest guest]

,

Your son is entitled to Early Intervention Services through your

state, if he qualifies. In NJ I think it is 33% delay in 1 area or

25% in more than 1. I think most states are about the same.

You are certainly doing the right thing. He is at a good age to begin

therapy. Perhap before the tubes he was really hearing things

distorted.

In order to ease your own frustration of not understanding him you

may want to create a picture book for him so he can show you what he

wants. You can also reinforce with the word.

ANd please know you are not alone. So many of us still cannot

understand our kids 100% of the time out of context.

Hang in there.

denise

Mom to 4 with verbal apraxia

> My son is two years old and recently had tubes in his ears. The

> doctor told me after the surgery that he had a 30% hearing loss in

> his left ear. To hear him talk is a little unnerving. Being his

> mother you would think that you could understand what he is saying,

> but most of the time I can't figure out what is comming out of his

> mouth. He is currently undergoing test for speech therapy through

> disiblity claim. Am I doing the right thing???

[Guest guest]

Thank You for that, this is the first time I do not feel alone! THank

you again

> > My son is two years old and recently had tubes in his ears. The

> > doctor told me after the surgery that he had a 30% hearing loss

in

> > his left ear. To hear him talk is a little unnerving. Being his

> > mother you would think that you could understand what he is

saying,

> > but most of the time I can't figure out what is comming out of

his

> > mouth. He is currently undergoing test for speech therapy through

> > disiblity claim. Am I doing the right thing???

[Guest guest]

You are lucky that he was diagnosed so early! The same age as my son who is

now 7.The earlier that he is diagnosed the better chance that he will do

well.I am, no expert either just a Mom but everything that I read or have

read said that the earlier the easier to help them.your child will not get

over apraxia but with early intervention he will be able to lead a normal and

fulfilled life in the " regular world " .Good Luck.Hope this helps.Gretchen

Missouri

[Guest guest]

: I believe you are doing the right thing. One of my daughters

had ear tubes when she was 2-1/2 years old and her hearing increased

dramatically.....she heard as though she had " swimmers ear " ...and had

reduced hearing.

My point is that we practically understood nothing of what she said...so we

went to speech therapy and enrolled her into our early intervention

pre-school in our district. It definitely helped us! She did not have

apraxia, but it was definitely beneficial to give her therapy as soon as

possible. The earlier we help our kids, the better off they are in the

long run.

Good luck. Kim

[Guest guest]

Amy,

First welcome, then run don't walk to get the book the Late Talker cowritten

by

[Guest guest]

Amy,

After reading the book " The Late Talker " PLEASE start your child on

the Pro-EFA by Nordic Naturals. You will find parent testimonials

on this website and in your book. We have noticed a wonderful

change in our son starting the very night we gave him his first dose

of fish oil. All therapists noted the change also, and we did NOT

tell them we were giving our son fish oil. I think these are your

most important " first steps " to getting your child on the road to

talking.

BEST OF LUCK!!!!!

Kathy (mom to , 22 months and suspected apraxia, who said

Dada for the first time the night we started Pro-EFA!)

> Amy,

>

> First welcome, then run don't walk to get the book the Late Talker

cowritten

> by

[Guest guest]

Sherri,

Your son sounds alot like mine at that age . He was also IUGR and a preemie ,

also has GERD and was borderline Failure to thrive ... See any common ground?

Anyway , my doctor has also said things like " PDD-NOS " but since the year after

that DX , my son was properly DXed with Motor Planning problems, Sensory

Intregration Disorder,Apraxia, & Dystharia.

It all can " look " Like Autism or PDD-NOS .

Basically my son doesn't have a clue at where is little body is in space, let

alone his mouth !

So we do tons of OT , and Oral Motor etc..And of Course Pro-Efa and a good

Multi-Vit.

I still have lots to learn about my darling son .. But this List has helped me

more than anything !Just ask questions and the awesome people on this list will

try and do anything to help .

Get your son started on Pro-Efa and keep working to find the best help in your

area !

And most important .Keep your chin up .. I think that might be the hardest part

!

Take Care , Marie

> Hi, I just am grasping the idea of apraxia with my son. DS is 21months old,

was 4 weeks premature with IUGR, and then was a GERD baby with failure to

thrive. I have been concerned with his communication skills, but heard all the

premature babies are slower, and his growth issues delayed him as well, so it

was a wake up call when his ped recomended ECI programs. (Course she didn't

know who in my county to contact & after two weeks still hasn't got his forms

into them). After talking to the ECI intake, I started reading, and found the

late talker book & I lost my concern DS had autism (suggested by ped), and began

reading about apraxia. During his interview with ECI they immediately asked me

if I had been thinking about apraxia & said they would have the speech therapist

contact me to set up an interview & then schedule. So for a week now I have

been nervous and trying to calm my fears.

> I have lots of questions. Eci only recomended 45 minutes a week, from

reading I do not think that is enough, but I can't pay for private after his

medicaid will runs out ... & Texas lowered the financial limits for the texcare

program so soon no insurance. Does apraxia qualify for medicaid waivers?

> I am thinking ASL might be good for us to learn, since his frustration

level is very high.

> But basically I am so lost as what to do. I have so many questions all jumbled

up so I can't even figure out where to begin.

>

> A little personal: DS is 21 months, says dah- for dog, diwty, beeth-beep and

lots of vowel, m, & d sound babbling... however dog & beep are about the only

things that relates to what he is doing. Ex: he can say a high pitched nasal no

type sound, but when he really means no, he shakes his head.... When prompted it

seems like the word is there, but he can't connect the dots or say the sound.

Basically grunts and whines. When read to he will move his lips and try

occasionally but nothing comes out. He can follow multi-step directions, seems

to have 4 goals in life: escaping-good with locks, figuring out how to fly off

various furniture, terrorize the dogs, and keep mommy home. Since birth he has

had lots of screaming fits, the first year was at least 8 hours of crying a

day... now we are down to about 2 plus bedtime battles, but the episodes are

increasing- probably due to frustration. We have a very good support system,

after I left my ex husband, I moved in with my parents & uncle & they are all

trying to figure out what we need to do to help as a team. Right now he

is not in daycare, and my family keeps him while I work. I am a paramedic so I

work 24hr shifts, which I am sure increases his clinginess. Also that explains

why I tend to get way behind on list-servs too.

> Like I said I am finally out of denial that something is seriously wrong,

angry that his MD didn't refer him to ECI when she diagnosed FTT- which is an

automatic inclusion into the program. There is lots more to ask and learn but I

just cant express all of those thoughts now- but I have covered the primaries

with DS: speech and his tantrums..he has other " quirks " but hard to list at the

moment.

>

> Thanks for listening, any advice is appreciated

> BTW I am a bit south of the Houston Tx, co area

> Sheri

>

>

>

>

[Guest guest]

Hi Kathy,

Welcome to the group. I'm sorry I can't answer any of your insurance

questions. I would think though that a second band would just be a

continuation of treatment. I'm sure someone here will be able to help

you out.

Does he have torticollis? Is that why you're looking into PT? Most

babies with tort qualify for Early Intervention, it's a free service

provided by most if not all states. Her pediatrician can let her know

how to contact Early Intervention, they'll come to her house for her

son's PT, if he qualifies.

Keep us posted.

\--- In Plagiocephaly , " kabrooksy " <Kmbrooksy@a...>

wrote:

> My cousin (almost a sister to me) has a child with torticollis and

> plagiocephaly. He is 7 months old. He has one DOC band and now

> needs another. The insurance has refused the second band but will

> possibly OK a starband. The doctor wants a DOC band. He has been

> without a helmet for 5 weeks since they cannot afford one. The

child

> is also deaf in one ear as well.

>

> I am just going through the websites and files now. She lives in

the

> Dallas region. She does not have a computer. She has been

fighting

> the insurance company. Does she continue with her fight and

appeal?

> He needs a helmet now. Or does she look for financial support

> elsewhere? If so, where? Will he need a third helmet? Where does

> she ask for physical therapy? How often does he have to go to

p/t?

> Can she do the p/t at home?

>

> I am sure this covered in many of your posts. I do appreciate it.

> She is at her wits end.

>

> Thank you.

> Kathy

[Guest guest]

Hello Kathy

Welcome to the group. Like has already told you, it would be

really helpful if your cousin contacted Early Intervention. In most

states you can self refer for torticollis. If her son qualifies they

will come out to her house, and do the therapy for free.

As far as insurance appeals go, maybe the ped can write a medical nec

letter, and I would not stop fighting them. Sometimes it just takes

a few appeals before they pay.

Good luck, and let us know how it goes. Do try though to get started

on working with the torticollis.

Sandy Willow's mom

--- In Plagiocephaly , " kabrooksy " <Kmbrooksy@a...>

wrote:

> My cousin (almost a sister to me) has a child with torticollis and

> plagiocephaly. He is 7 months old. He has one DOC band and now

> needs another. The insurance has refused the second band but will

> possibly OK a starband. The doctor wants a DOC band. He has been

> without a helmet for 5 weeks since they cannot afford one. The

child

> is also deaf in one ear as well.

>

> I am just going through the websites and files now. She lives in

the

> Dallas region. She does not have a computer. She has been

fighting

> the insurance company. Does she continue with her fight and

appeal?

> He needs a helmet now. Or does she look for financial support

> elsewhere? If so, where? Will he need a third helmet? Where does

> she ask for physical therapy? How often does he have to go to

p/t?

> Can she do the p/t at home?

>

> I am sure this covered in many of your posts. I do appreciate it.

> She is at her wits end.

>

> Thank you.

> Kathy

[Guest guest]

I am in the Dallas area too...did she go to Cranial Technologies?

We are scheduled to go there next week for the casting for my

son. About the insurance...if she goes to CT, surely she has

been talking with about the insurance issues? If

not...have her ask for her. She seems pretty knowledgeable

about the insurance matters. From what I have read it seems

like they should cover it out of conituation of treatment since it

was an approved plan of care in the beginning. But you know

how ins. co. are about not wanting to pay for anything they don't

have to. What is the reasoning behind their denial?

I am an occupational therapist and although I don't work in the

pediatric arena I do think that the therapists at CT should be able

to give her a home program to either eliminate or reduce the

need for hands on therapy. I have heard that early childhood

intervention is a good way to go for therapy. Again....I work in

geriatrics so this is all new to me. After my experience now with

CT, though...once my kids are school age...I think I might try to

switch over!

Good Luck with everything!

Camille

Arlington...Mom to ...6 mos...to receive DOC band 9/15

> My cousin (almost a sister to me) has a child with torticollis

and

> plagiocephaly. He is 7 months old. He has one DOC band

and now

> needs another. The insurance has refused the second band

but will

> possibly OK a starband. The doctor wants a DOC band. He

has been

> without a helmet for 5 weeks since they cannot afford one. The

child

> is also deaf in one ear as well.

>

> I am just going through the websites and files now. She lives

in the

> Dallas region. She does not have a computer. She has been

fighting

> the insurance company. Does she continue with her fight and

appeal?

> He needs a helmet now. Or does she look for financial

support

> elsewhere? If so, where? Will he need a third helmet? Where

does

> she ask for physical therapy? How often does he have to go to

p/t?

> Can she do the p/t at home?

>

> I am sure this covered in many of your posts. I do appreciate it.

> She is at her wits end.

>

> Thank you.

> Kathy

[Guest guest]

Welcome to the group. I'm glad that you found it. No it isn't odd.

It is good that they are going to do regular xrays of your child's

head. It helps to rule out that the sutures have not closed

prematurely. I would not worry; that is really rare. Luckily, we

found out the results (from the xray tech) right after they took them

(that they were negative). Your son may cry during this but it is

over pretty quickly. Then when we met the neurologist (a few weeks

later) he looked at them too and he also concluded that they were

negative for premature closing. If you don't find out right after the

xrays are taken, try calling your ped (a day or so later) or the

referring physician and see if they can tell you over the phone. It

is just nice to get that taken care of and ruled out before your son

starts wearing the band. But again, don't worry because it is very

very rare that the sutures prematurely closed.

Just take it one day at a time. I know it's easy for me to say now.

Just take each bit of information as it comes and discuss things with

your husband. I learned so much from the people in this grp and all

the info. available in the files, links, etc. It will be harder on

you than your child. Trust me when I say that it will not bother him

one bit to wear a helmet. Children adjust really well. THEE HARDEST

part is when they make it YOUR decision on whether or not to do it. I

figured that we had nothing to lose and everything to gain. Check

into ins. if that is a factor for your decision. I was willing to pay

for it in full if ins. denied bcz we wanted to ENSURE that it rounded

some. Dr.'s say that it can take a few yrs to round out but at that

point it would be too late to wear a helmet. It will be Ok and we

will help you along the way.....take care.

Sue

Colin F. 1 this Fri. 9/24

STARband grad 9/15/04

Buffalo, NY

--- In Plagiocephaly , " babykellan " <babykellan@y...>

wrote:

> My son seems to have what looks to us like Brachycephaly. Also,

his

> brow is very sloping. Our dr. said, yes, there is some flattening,

> but it will round out on its own. This bothered me and I contacted

a

> dr. who deals with cranio issues and before even seeing my son,

they

> prescribed X-rays (skull series) and then they will evaluate him

with

> the x-rays in hand in a few weeks. IS THIS TYPICAL? The orthotics

> company will have someone there when the dr. sees my son in case

they

> decide to prescribe a helmet? I am so nervous. I don't want to do

> anything to my son that isn't necessary and it is hard to put your

> trust in people you don't know. What is the typical process for

> diagnosis? Is is odd that they would prescribe x-rays without even

> seeing my son first?

>

> Looking for advice,

>

> babykellan

[Guest guest]

Thanks for your welcome. I am in conflict because our pediatrician

kind of blew my concerns off (not in a cruel way) and because It

seems so freightening to " alter " my son in any way. I am sure you

all understand that. It is hard to know who to trust or whether to

go with my instincts etc. I will try to post some pictures. My son's

brow has sloped since birth and I suspect is was from a tight uterine

environment (he was so tight inside that he came out with toes

crossed). The flattening in back seems uniform and I definitely see

it in photos.

Thanks again for your encouragement! Our appointment with the

craniofacial specialist isn't until October 15th and by then our son

will be 5 months. We would be dealing with Prescision Prostheics and

Orthotics in St. Louis. Does anyone out there know anything about

them????

Kellan's mom .

> > My son seems to have what looks to us like Brachycephaly. Also,

> his

> > brow is very sloping. Our dr. said, yes, there is some

flattening,

> > but it will round out on its own. This bothered me and I

contacted

> a

> > dr. who deals with cranio issues and before even seeing my son,

> they

> > prescribed X-rays (skull series) and then they will evaluate him

> with

> > the x-rays in hand in a few weeks. IS THIS TYPICAL? The

orthotics

> > company will have someone there when the dr. sees my son in case

> they

> > decide to prescribe a helmet? I am so nervous. I don't want to

do

> > anything to my son that isn't necessary and it is hard to put

your

> > trust in people you don't know. What is the typical process for

> > diagnosis? Is is odd that they would prescribe x-rays without

even

> > seeing my son first?

> >

> > Looking for advice,

> >

> > babykellan