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Hi ,

Welcome.

<eupguy16444@...> wrote:

My masters is in Secondary Education. I have a daughter with

special needs so I look forward to chatting with you all.

> Bless you and your professor! Fire away with any

questions.

>

> Tonya

>

> ( ) New to group

>

> Hi everyone. I just wanted to say hi. My name is and I am a

> graduate student taking a class on behavior disorders. Partial

> requirements of the class has us joing groups like this and

> participating in dicussions. I like forward to chatting with you

all.

>

>

>

>

>

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Hi Wenwei,

I too am in the SF Bay Area. There are no docs here. We've had a PPO, and

the coverage for lab tests usually is per the policy; however certain tests

(such as the food panel) won't be covered by insurance.

Our PPO covered the office visit with us paying the co-pay. However, they won't

cover phone consults.

HTH,

Heidi

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

From: " ruiruimommy " <weweng@...>

hello,

I'm new to this group, have a 4 y.o. son with autism dx. I have been

doing diet, chelation for him 1.5 year. I do see some

improvement.However, as my son being a never sick kid, obviously his

immune system is not working right. So I do hope protocol will

help him. I'm thinking to start Valtrex, but I certainly want to

have a doctor to closely monitor what is going on, and tune it if

possible.

I'm in San Francisco bayarea, have a few questions:

1. Is there doctor in SF bayarea?

2. For the required testings listed in

http://www.neuroimmunedr.com//Proposed_Work-

Up_/proposed_work-up_nids.html, are they covered by the

insurance? I do have a very good PPO plan.

3. What is the logistics for the clinic visit to Dr. Goldberg? For

the people in list, do you get insurance reimbursement for the

clinical visit?

Any advice is highly appreciated.

Thanks.

Wenwei

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Guest guest

Welcome, you came to the right place. I have gotten loads of good advise as well

as much comfort that we all go through alot of the same things.

Kristy <kchristop@...> wrote:

just wanted to quickly say hello-I just joined this group yesterday. My daughter

has been diagnosed with ASD last week. Needless to say, the week has been a hard

one for me. I have been doing alot of reading on it, trying to educate myself

more about it. An online friend just told me about this yesterday and I am glad

she did.

I have been frustrated for over 2 years with my daughter's behavior. She was a

micro-preemie (23 weeks) and I thought alot of her problems were due to her

prematurity and sensory issues. I was devastated to hear the word " Autism " at

her Neuro appt. last wednesday. Though I realized lots of her symptoms

overlapped with autism, the pain was intense to hear. They told me she is high

functioning, and that she will be okay, but still hard nonetheless. I have been

going through a range of emotions. I am angry also, as yesterday I was told by

her old preschool teacher that they saw her having autistic tendancies when I

enrolled her at the preschool (back in Aug 2005) yet no one came and told me. I

am angry that nothing was done back then. I know there is nothing I can do about

it now, but it hurt . I have my Gillian in a special ed preschool-its much less

stimulating-less kids, more adults, and apparently she is doing really well.

Looking forward to getting to know you, and getting lots of information here.

Kristy

Time To Stamp http://www.timetostamp.com

blog: http://kristychristopherson.blogspot.com

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On Nov 19, 6:39pm, " Kristy " wrote:

that she will be okay, but still hard nonetheless. I have been going through a

range of emotions. I am angry also, as yesterday I was told by her old

preschool teacher that they saw her having autistic tendancies when I enrolled

her at the preschool (back in Aug 2005) yet no one came and told me. I am angry

that nothing was done back then. I know there is nothing I can do about it now,

but it hurt .

I know what you mean; after my son was diagnosed, my stepmother (who is

a psychologist who works with special needs kids) told me she had

suspected autism. Well gee, thanks for saying something NOW. Of course,

people who aren't qualified to diagnose shouldn't fling terms like

autism around, but they could have mentioned early intervention to

you.

Willa

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Welcome Christy, at least she was diagnosed young and you can and will find

out what therapies will help her. You've come to the right place. The people

on here are incredible and will help you in any way they can. I know it is

devastating to hear 'autism'. You will grieve, then you will be motivated to

getting the best for her.I understand your hurt, my kids didn't get

diagnosed until they were 16, I feel we wasted SO much time and now we can't

play catch up...Welcome again, Toni

( ) New To Group

>

> just wanted to quickly say hello-I just joined this group yesterday. My

daughter has been diagnosed with ASD last week. Needless to say, the week

has been a hard one for me. I have been doing alot of reading on it, trying

to educate myself more about it. An online friend just told me about this

yesterday and I am glad she did.

> I have been frustrated for over 2 years with my daughter's behavior. She

was a micro-preemie (23 weeks) and I thought alot of her problems were due

to her prematurity and sensory issues. I was devastated to hear the word

" Autism " at her Neuro appt. last wednesday. Though I realized lots of her

symptoms overlapped with autism, the pain was intense to hear. They told me

she is high functioning, and that she will be okay, but still hard

nonetheless. I have been going through a range of emotions. I am angry

also, as yesterday I was told by her old preschool teacher that they saw her

having autistic tendancies when I enrolled her at the preschool (back in Aug

2005) yet no one came and told me. I am angry that nothing was done back

then. I know there is nothing I can do about it now, but it hurt . I have my

Gillian in a special ed preschool-its much less stimulating-less kids, more

adults, and apparently she is doing really well.

> Looking forward to getting to know you, and getting lots of information

here.

>

> Kristy

> Time To Stamp http://www.timetostamp.com

> blog: http://kristychristopherson.blogspot.com

>

>

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Hi Kristy, it's very nice to meet you and to have you join us. I'm so sorry

you've had such a hard week, but it's certainly understandable. My son who

has AS was just diagnosed a couple years ago with that and bi-polar (we were

already aware of ADHD as well) and I remember how utterly stunned I was. I

thought he behavior was just the ADHD. Even now, a little over two years

later, I still find myself going through the shock, acceptance, questioning,

worrying, etc., phases. It's a never ending process of learning and growing,

for both the parent and child. You're not alone as you go through it though,

we're all here with you and for you ~*BIG HUGS*~

-Jenn, AEP (ADD, Bi-Polar, Anxiety/Depression)

Proud Momma of Cory Albert (14yrs ADHD), h Dawn (12yrs

Anxiety/Depression)

and Jerry Lee " Trey " (9yrs ADHD, Bi-Polar, Asperger's)

-- ( ) New To Group

just wanted to quickly say hello-I just joined this group yesterday. My

daughter has been diagnosed with ASD last week. Needless to say, the week

has been a hard one for me. I have been doing alot of reading on it, trying

to educate myself more about it. An online friend just told me about this

yesterday and I am glad she did.

I have been frustrated for over 2 years with my daughter's behavior. She

was a micro-preemie (23 weeks) and I thought alot of her problems were due

to her prematurity and sensory issues. I was devastated to hear the word

Autism " at her Neuro appt. last wednesday. Though I realized lots of her

symptoms overlapped with autism, the pain was intense to hear. They told me

she is high functioning, and that she will be okay, but still hard

nonetheless. I have been going through a range of emotions. I am angry

also, as yesterday I was told by her old preschool teacher that they saw her

having autistic tendancies when I enrolled her at the preschool (back in Aug

2005) yet no one came and told me. I am angry that nothing was done back

then. I know there is nothing I can do about it now, but it hurt . I have my

Gillian in a special ed preschool-its much less stimulating-less kids, more

adults, and apparently she is doing really well.

Looking forward to getting to know you, and getting lots of information here

Kristy

Time To Stamp http://www.timetostamp.com

blog: http://kristychristopherson.blogspot.com

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Welcome to the group Kristy!

This site has really useful information. It is also comforting to

know that others are going through the same thing and have good

suggestions for you,

Dee

>

>

> just wanted to quickly say hello-I just joined this group

yesterday. My daughter has been diagnosed with ASD last week.

Needless to say, the week has been a hard one for me. I have been

doing alot of reading on it, trying to educate myself more about it.

An online friend just told me about this yesterday and I am glad she

did.

> I have been frustrated for over 2 years with my daughter's

behavior. She was a micro-preemie (23 weeks) and I thought alot of

her problems were due to her prematurity and sensory issues. I was

devastated to hear the word " Autism " at her Neuro appt. last

wednesday. Though I realized lots of her symptoms overlapped with

autism, the pain was intense to hear. They told me she is high

functioning, and that she will be okay, but still hard nonetheless.

I have been going through a range of emotions. I am angry also, as

yesterday I was told by her old preschool teacher that they saw her

having autistic tendancies when I enrolled her at the preschool

(back in Aug 2005) yet no one came and told me. I am angry that

nothing was done back then. I know there is nothing I can do about

it now, but it hurt . I have my Gillian in a special ed preschool-

its much less stimulating-less kids, more adults, and apparently she

is doing really well.

> Looking forward to getting to know you, and getting lots of

information here.

>

> Kristy

> Time To Stamp http://www.timetostamp.com

> blog: http://kristychristopherson.blogspot.com

>

>

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My heart goes out to you. We were in your shoes 2 years ago. My twin boys were

born at 30 weeks. The delay was believed to be due to prematurity. We kept

asking, do they have autism? All experts assured us it was prematurity. We

decided to have them evaluated anyway, the dx, Atypical Autism NOS. What a

blow. They are 7 now, and we plug away with therapies and tutoring. They are

such troopers. They have never known life w/o therapy. You will be in my

thoughts as you search for solutions. Feel free to pick my brain (what's left

of it, that is) anytime. That is what this group is for.

Eydie

Kasey & , Atypical Autism NOS

Eydie

( ) New To Group

just wanted to quickly say hello-I just joined this group yesterday. My daughter

has been diagnosed with ASD last week. Needless to say, the week has been a hard

one for me. I have been doing alot of reading on it, trying to educate myself

more about it. An online friend just told me about this yesterday and I am glad

she did.

I have been frustrated for over 2 years with my daughter's behavior. She was a

micro-preemie (23 weeks) and I thought alot of her problems were due to her

prematurity and sensory issues. I was devastated to hear the word " Autism " at

her Neuro appt. last wednesday. Though I realized lots of her symptoms

overlapped with autism, the pain was intense to hear. They told me she is high

functioning, and that she will be okay, but still hard nonetheless. I have been

going through a range of emotions. I am angry also, as yesterday I was told by

her old preschool teacher that they saw her having autistic tendancies when I

enrolled her at the preschool (back in Aug 2005) yet no one came and told me. I

am angry that nothing was done back then. I know there is nothing I can do about

it now, but it hurt . I have my Gillian in a special ed preschool-its much less

stimulating-less kids, more adults, and apparently she is doing really well.

Looking forward to getting to know you, and getting lots of information here.

Kristy

Time To Stamp http://www.timetostamp.com

blog: http://kristychristopherson.blogspot.com

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Welcome to the group Kristy,

- C.

Mom to Cassie 16 PCOS, Austin 14 ADHD and a 3.5 HFA/AS & SPD/SID

( ) New To Group

just wanted to quickly say hello-I just joined this group yesterday. My

daughter has been diagnosed with ASD last week. Needless to say, the week has

been a hard one for me. I have been doing alot of reading on it, trying to

educate myself more about it. An online friend just told me about this yesterday

and I am glad she did.

I have been frustrated for over 2 years with my daughter's behavior. She was a

micro-preemie (23 weeks) and I thought alot of her problems were due to her

prematurity and sensory issues. I was devastated to hear the word " Autism " at

her Neuro appt. last wednesday. Though I realized lots of her symptoms

overlapped with autism, the pain was intense to hear. They told me she is high

functioning, and that she will be okay, but still hard nonetheless. I have been

going through a range of emotions. I am angry also, as yesterday I was told by

her old preschool teacher that they saw her having autistic tendancies when I

enrolled her at the preschool (back in Aug 2005) yet no one came and told me. I

am angry that nothing was done back then. I know there is nothing I can do about

it now, but it hurt . I have my Gillian in a special ed preschool-its much less

stimulating-less kids, more adults, and apparently she is doing really well.

Looking forward to getting to know you, and getting lots of information here.

Kristy

Time To Stamp http://www.timetostamp.com

blog: http://kristychristopherson.blogspot.com

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Dear Kristy,

you are so right, someone should have told you. I posted one time on this

site that I saw a little girl, age 3 that had lots of tendencies that my as son

has/had. I asked if I should say something to the parents. Everybody replied,

YES, and suggested different ways to address this to the parents. they said,

since early interventions is free and so important to start as early as possible

That I should say something. So, I did. When the little girl was lining up her

toys, dolls, chairs, books. I said, she does lots of things my son did at her

age. (they know his DX). she has no sense of fear. Would jump from high places

too high to jump. she would spin, couldn't understand her speech. etc... I

asked if she ever heard of early interventions?, and explained she is doing lots

of the same things as my son and early interventions is a great place to get

help, and free. Well, the parents got so mad. Told me there is nothing wrong

with their daughter. Just speech,

and she is getting it. She walked away from me and never spoke to me again.

Now her daughter was ready for Kindergarten, but her parents kept her out due to

her speech. (can't understand her at all). She cries all the time. I've never

seen her not crying. she spins so much more now and she will run full speed

into a wall and cry that she is hurt. They saw I was watching her and said to

me, we just ignore her behavior and she will stop. (she doesn't). " I think

they're just exhausted " . We saw them at the movies and she cried through the

whole movie, wouldn't sit still at all, and was allowed to run free all over the

movie theater. Another person asked if she has autism? the woman got so upset

with her, and me, because she thought I was talking about them. I wasn't, I

didn't even know that woman. She (the woman) then explained she has a daughter

with autism and her daughter does the same things.. This woman got so angry

again and said there is nothing wrong with

my daughter! Now she avoids most people.

Maybe people are just cautious when speaking to others about this and that's

why no one spoke to you about this.

Autism is a label to help her get the appropriate services she needs. She is

still your beautiful daughter. As you get to understand more about autism you

will see her as a unique person with a beautiful personality. " high function " ?

you will learn lots from her. Subjects in school that she likes, she will excel

so much, you wont be able to keep up with her. My son has asked questions that

the teacher said she will have to get back to him because she didn't know the

answer to his question. LOL. Things do get better, They do learn and do well

in school. each child is different, some need a little more help than others.

You will also read post on this site from parents with AS children that are now

doing well in college. Take one step at a time, find out as much as you can on

AS and you will see the progress. best wishes to you. *Smile* " hugs " ....

Kristy <kchristop@...> wrote:

just wanted to quickly say hello-I just joined this group yesterday. My daughter

has been diagnosed with ASD last week. Needless to say, the week has been a hard

one for me. I have been doing alot of reading on it, trying to educate myself

more about it. An online friend just told me about this yesterday and I am glad

she did.

I have been frustrated for over 2 years with my daughter's behavior. She was a

micro-preemie (23 weeks) and I thought alot of her problems were due to her

prematurity and sensory issues. I was devastated to hear the word " Autism " at

her Neuro appt. last wednesday. Though I realized lots of her symptoms

overlapped with autism, the pain was intense to hear. They told me she is high

functioning, and that she will be okay, but still hard nonetheless. I have been

going through a range of emotions. I am angry also, as yesterday I was told by

her old preschool teacher that they saw her having autistic tendancies when I

enrolled her at the preschool (back in Aug 2005) yet no one came and told me. I

am angry that nothing was done back then. I know there is nothing I can do about

it now, but it hurt . I have my Gillian in a special ed preschool-its much less

stimulating-less kids, more adults, and apparently she is doing really well.

Looking forward to getting to know you, and getting lots of information here.

Kristy

Time To Stamp http://www.timetostamp.com

blog: http://kristychristopherson.blogspot.com

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  • 3 weeks later...
Guest guest

Yes, I would be angry also. Shame on them for not speaking up and sending you

to a evaluation/child find to get evaluated. But now there is not anything to

do to fix that. Try to get past it and do what you can for her now and today.

Welcome to our group!

Roxanna

( ) New To Group

just wanted to quickly say hello-I just joined this group yesterday. My

daughter has been diagnosed with ASD last week. Needless to say, the week has

been a hard one for me. I have been doing alot of reading on it, trying to

educate myself more about it. An online friend just told me about this yesterday

and I am glad she did.

I have been frustrated for over 2 years with my daughter's behavior. She was a

micro-preemie (23 weeks) and I thought alot of her problems were due to her

prematurity and sensory issues. I was devastated to hear the word " Autism " at

her Neuro appt. last wednesday. Though I realized lots of her symptoms

overlapped with autism, the pain was intense to hear. They told me she is high

functioning, and that she will be okay, but still hard nonetheless. I have been

going through a range of emotions. I am angry also, as yesterday I was told by

her old preschool teacher that they saw her having autistic tendancies when I

enrolled her at the preschool (back in Aug 2005) yet no one came and told me. I

am angry that nothing was done back then. I know there is nothing I can do about

it now, but it hurt . I have my Gillian in a special ed preschool-its much less

stimulating-less kids, more adults, and apparently she is doing really well.

Looking forward to getting to know you, and getting lots of information here.

Kristy

Time To Stamp http://www.timetostamp.com

blog: http://kristychristopherson.blogspot.com

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  • 2 weeks later...
Guest guest

Hi!

Welcome to the list. There is a ton of data on this message board.

The links and Files section are good, and so is the search of the

archived messages.

In a nut shell, the protocol is based on the treatment of immune

system problems. An unhealthy immune system cannot keep fungus,

virus and bacterias under control. Most of our kids take antivirals

and antifungals to help their immune systems. My son also take

antibiotics. Also, most kids take a SSRI (Prozac, Celexa, Paxil,

Zoloft) to assist in brain blood flow regulation. There are some

other meds Dr. Goldberg uses to address brain blood flow problems (my

son also takes Tenex and wellbutrin.)

Hope this helps!

>

> We have two boys w/ autism 9 and 6. What exactly is the protocol? I

> looked over the web sight but did not get any clear ideas except

for

> the diet. Our boys have been on a glutten/caesien free diet for 2

years

> now. we saw a lot of behavioral changes in our youngest son, but

now

> his behavior is nearing uncontrolable. Our ped. thinks that it is

more

> adhd related and has put him on ritalin and now he is aggressive

and

> never was before. Our older son who is more low functioning has

been

> improving greatly w/ risperdal.

>

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Hi,

Welcome to the group. Have you read the intro to on the website?

http://www.neuroimmunedr.com//intro.PDF

Basically what you need to know is that in *most* cases, the doctors and experts

that see you children will treat their symptoms. Low B12? Give 'em B12 shots.

Uncontrollable behavior? Give them behavior modification drugs. Dr. Goldberg's

approach is to look at WHY they have low B12, WHY they have poor behavior and to

treat the root of the problem. Years of labwork on these children has strongly

indicated a need for a medical approach to treat poor immune system function.

My son is on an antiviral, antifungal, and a few other medications (strattera

being one of them) to improve blood flow in his brain. The need for every drug

he is on has been validated by a medical test. In other words, though he is on

a couple of drugs that would effect/calm his behavior, I was not prescribed

these for him because of his behavior but because of his medical need. This

gives me comfort because I can be certain that he in not on these medications

needlessly or because he's " a little high strung " . His brain chemistry requires

it. It's just good for me to know.

Again, welcome to the group. Dig around some more on the neuroimmunedr website.

It is a wealth of information as are the wonderful folks on this list. If you

are wondering if the protocol would help your boys, you could try to get a

local pediatrician to order the tests he has listed on the website. It might be

really insightful.

April

new to group

We have two boys w/ autism 9 and 6. What exactly is the protocol? I

looked over the web sight but did not get any clear ideas except for

the diet. Our boys have been on a glutten/caesien free diet for 2 years

now. we saw a lot of behavioral changes in our youngest son, but now

his behavior is nearing uncontrolable. Our ped. thinks that it is more

adhd related and has put him on ritalin and now he is aggressive and

never was before. Our older son who is more low functioning has been

improving greatly w/ risperdal.

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Hi . I have a ten year old also, who is diagnosed PDD-NOS and is being reevaluated in June. I also have a 16 year old with AS. My 10 year old really wants friends lately and we are progressing cautiously. He has been playing with one boy at recess who happens to live across the street (convenient). He had him over yesterday for about an hour and they seemed to play well together. My son needs lots of redirection and assurance and wants me to be close by. He is very excited to have a friend. My older son always made friends easily. He also did things at times that made him lose friends and he seemed to learn and adapt over time. He does still struggle with understanding others and why they do what they do. Pam :)See what's free at AOL.com.

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Welcome . I am a sahm to 18 yo boys with aspergers. Ian sounds like my boys. They are into computers and video games and tv too.. It's good to have you with us! Toni

( ) new to group

Hi, I'm new to the group and thought I would introduce myself. I homeschool my ds Ian, who is 10. He has AS and ADHD. We pulled him outof public school to HS for 2nd grade. He is doing much better in alot of ways. Recently he has begun to mature and change, which hasforced me to re-evaluate how I work with him. I went on automaticpilot there for a while, I think. That is why I joined the group. Itseems there are quite a few 10 yr. old boys. And to my amazementquite a few in or around Cherokee, Ga.!! Ian has never played withany other AS kids. I've kinda avoided it. But now I'm wondering ifhe wouldn't feel like, "hey, these guys are a lot like me! I'm notthe only one who....". I also have a dd who is 15 and in PS. I'm astay at home mom who just celebrated our 17th wedding anniv. Ian isinto Pokemon, Nintendo DS and TV!! I'm all about art and learning,reading and nature. Thanks for being here for us.

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  • 2 weeks later...
Guest guest

Hi : We are near Gainesville, so we dealt with local

physicians, but we see Steve Bremer at POA in Orlando for our son

's STARband. Steve is great - he's got great experience, which

is the main reason I chose to make the 2 hour trip for our band and

adjustments rather than going with local providers. He's been doing

this for a long time and really knows his stuff. Once I asked him how

many kids he had worked with in his career and he estimated somewhere

around 1000-1200. That really meant a lot to me - just knowing that

he's seen just about every scenario. He is also really nice and is

great to deal with on a personal level. just loves him. While

I am anxiously looking forward to 's graduation from his

STARband, I will honestly miss seeing Steve and some of the other nice

folks in their office.

I would not hesitate to recommend Steve - you can definitely feel

confident that your child's head would be in great hands.

Let me know if I can be of any further help or if you have any other

questions about Steve or POA.

Good luck to you and your daughter!

Kelli

Mom to , 11.5 months

tort/plagio STARband, 11/06

>

> Our daughter was recently diagnosed with plagio and needs a helmet.

> Does anyone have any recent experiences working with Dr. Gegg

> (pediatric neurosurgeon) or Bremer (Orthotist) in Orlando,

FL?

> Any help would be appreciated.

>

> Thanks!

>

>

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Thank you for your reply. I am glad you and your son enjoy working

with Steve. It will help me relax a little more knowing that someone

had good experiences with him.

Aubrey will be casted in a couple of weeks. We are not looking

forward to her getting a helmet just before summer. But, I'm sure we

will adjust to it.

> >

> > Our daughter was recently diagnosed with plagio and needs a

helmet.

> > Does anyone have any recent experiences working with Dr. Gegg

> > (pediatric neurosurgeon) or Bremer (Orthotist) in

Orlando,

> FL?

> > Any help would be appreciated.

> >

> > Thanks!

> >

> >

>

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wow, that is a lot, how many years has he been doing this. this hit me like a lot but then again not a ton of it has been a long time so i am curious how this compares to the average CT, anyone know how many the average CT has in bands at any 1 given time?

On 5/8/07, Kelli <kgranade@...> wrote:

Hi : We are near Gainesville, so we dealt with local physicians, but we see Steve Bremer at POA in Orlando for our son 's STARband. Steve is great - he's got great experience, which

is the main reason I chose to make the 2 hour trip for our band and adjustments rather than going with local providers. He's been doing this for a long time and really knows his stuff. Once I asked him how

many kids he had worked with in his career and he estimated somewhere around 1000-1200. That really meant a lot to me - just knowing that he's seen just about every scenario. He is also really nice and is

great to deal with on a personal level. just loves him. While I am anxiously looking forward to 's graduation from his STARband, I will honestly miss seeing Steve and some of the other nice folks in their office.

I would not hesitate to recommend Steve - you can definitely feel confident that your child's head would be in great hands.Let me know if I can be of any further help or if you have any other questions about Steve or POA.

Good luck to you and your daughter!KelliMom to , 11.5 monthstort/plagio STARband, 11/06>> Our daughter was recently diagnosed with plagio and needs a helmet. > Does anyone have any recent experiences working with Dr. Gegg > (pediatric neurosurgeon) or Bremer (Orthotist) in Orlando, FL? > Any help would be appreciated.> > Thanks!> >

-- -mommy and leader to;

-5th grade G & T, Jr GS, soccer, cello-1st grade, Brownie; psych appt 5/17-cosleeping, loving to learn always with 2 yr old flair; repeat bloodwork 5/8ph-11/06, cosleeping, babywearing, breastfeeding, all over the place already; measure/checkup 5/8, NS 5/30, CT casting 6/1

" As the family goes, so goes the nation and so goes the whole world in which we live. " PJPII

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Welcome to the group and good luck with your daughter's treatment. My son got his band 2 weeks ago, so we are new as well. I have no help with drs. because we are in Austin, TX, but I'm sure someone in the group will have some info.a, Mom of Cade, 10 monthsAustin, TXebtchlr <ebtchlr@...> wrote: Our daughter was recently diagnosed with plagio and needs a helmet. Does anyone have any recent experiences working with Dr. Gegg (pediatric neurosurgeon) or Bremer (Orthotist) in Orlando, FL?

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Hi Heidi, what is IC? I am just curious. But, welcome to the group...you sound

like you are going to be fun! :-)

Sonya

[ ] New to group

Hi Ya'll,

This is just to introduce myself to the group. I am 50 years young

and live in Dumont NJ.and I am a nurse in a homecare. I have IC,

Fibro, Osteoarthritis, Type 2 diabetes, High blood presure, had a

stroke in 03 and was diagnosed about 4 months ago with RA. I am a

walking poster child on how NOT to live your youth LOL..

Treatments, geeze I'm on so many pills I think they are going to have

to make me a board member of CVS. I started Metotrexate 2 months ago

and it makes me really sick for about two days. I am or was taking

Foilc Acid to try to avoid the days of cramps and Diarrhea but to no

avail.My Rheumy is going to try Folitinic acid ( think thats what he

said) once a week after 24 hours post methotrexate. If not I will go

to the injectable form. I will also start Embrel once he can get the

insurance to pay for it.

I was wondering what lovely side effects I can look forward to with

the embrel if anyone here is taking it. I alreay lost my hair from

the Elmiron (IC Drug)and gained 30 lbs from the Fibro drugs.. Life

just gets more fun.Any advice would be appreciated.

Thanks Heidi

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Welcome Heidi have no if on the drug just wanted to say Hi.

Marsha

[ ] New to group

Hi Ya'll,

This is just to introduce myself to the group. I am 50 years young

and live in Dumont NJ.and I am a nurse in a homecare. I have IC,

Fibro, Osteoarthritis, Type 2 diabetes, High blood presure, had a

stroke in 03 and was diagnosed about 4 months ago with RA. I am a

walking poster child on how NOT to live your youth LOL..

Treatments, geeze I'm on so many pills I think they are going to have

to make me a board member of CVS. I started Metotrexate 2 months ago

and it makes me really sick for about two days. I am or was taking

Foilc Acid to try to avoid the days of cramps and Diarrhea but to no

avail.My Rheumy is going to try Folitinic acid ( think thats what he

said) once a week after 24 hours post methotrexate. If not I will go

to the injectable form. I will also start Embrel once he can get the

insurance to pay for it.

I was wondering what lovely side effects I can look forward to with

the embrel if anyone here is taking it. I alreay lost my hair from

the Elmiron (IC Drug)and gained 30 lbs from the Fibro drugs.. Life

just gets more fun.Any advice would be appreciated.

Thanks Heidi

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Hi and Welcome Heidi! My name is Carol, and 53 is breathing down my neck

here in sunny Southern California. I took great care of myself, a total health

and fitness fanatic, but that didn't save me from my less than premium

genetics. Nooope, I am definitely not genetically blessed! LOL!

What is IC? Interstitial Cystitis?

I'm on Imuran, and so far, so good. :)

Carol

In a message dated 5/9/2007 1:39:54 P.M. Pacific Daylight Time,

hmendelsohn@... writes:

Hi Ya'll,

This is just to introduce myself to the group. I am 50 years young

and live in Dumont NJ.and I am a nurse in a homecare. I have IC,

Fibro, Osteoarthritis, Type 2 diabetes, High blood presure, had a

stroke in 03 and was diagnosed about 4 months ago with RA. I am a

walking poster child on how NOT to live your youth LOL..

Treatments, geeze I'm on so many pills I think they are going to have

to make me a board member of CVS. I started Metotrexate 2 months ago

and it makes me really sick for about two days. I am or was taking

Foilc Acid to try to avoid the days of cramps and Diarrhea but to no

avail.My Rheumy is going to try Folitinic acid ( think thats what he

said) once a week after 24 hours post methotrexate. If not I will go

to the injectable form. I will also start Embrel once he can get the

insurance to pay for it.

I was wondering what lovely side effects I can look forward to with

the embrel if anyone here is taking it. I alreay lost my hair from

the Elmiron (IC Drug)and gained 30 lbs from the Fibro drugs.. Life

just gets more fun.Any advice would be appreciated.

Thanks Heidi

************************************** See what's free at http://www.aol.com.

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Heidi,

The main side effect that I have from Enbrel is relief from pain and

inflammation! I have absolutely no bad side effects from it. I don't

have frequent infections, in spite of a low normal white blood cell

count. There is no hair loss and no weight gain. I hope that you have

the same results. Let us know how it goes. Sue

On Wednesday, May 9, 2007, at 03:47 PM, heidibug46 wrote:

> I was wondering what lovely side effects I can look forward to with

> the embrel if anyone here is taking it. I alreay lost my hair from

> the Elmiron (IC Drug)and gained 30 lbs from the Fibro drugs.. Life

> just gets more fun.Any advice would be appreciated.

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Heidi,

I have no advice...(sorry) However, welcome to the group!

Bonnie

>From: " heidibug46 " <hmendelsohn@...>

>Reply-

>

>Subject: [ ] New to group

>Date: Wed, 09 May 2007 19:47:51 -0000

>

>Hi Ya'll,

> This is just to introduce myself to the group. I am 50 years young

>and live in Dumont NJ.and I am a nurse in a homecare. I have IC,

>Fibro, Osteoarthritis, Type 2 diabetes, High blood presure, had a

>stroke in 03 and was diagnosed about 4 months ago with RA. I am a

>walking poster child on how NOT to live your youth LOL..

>

>Treatments, geeze I'm on so many pills I think they are going to have

>to make me a board member of CVS. I started Metotrexate 2 months ago

>and it makes me really sick for about two days. I am or was taking

>Foilc Acid to try to avoid the days of cramps and Diarrhea but to no

>avail.My Rheumy is going to try Folitinic acid ( think thats what he

>said) once a week after 24 hours post methotrexate. If not I will go

>to the injectable form. I will also start Embrel once he can get the

>insurance to pay for it.

>

> I was wondering what lovely side effects I can look forward to with

>the embrel if anyone here is taking it. I alreay lost my hair from

>the Elmiron (IC Drug)and gained 30 lbs from the Fibro drugs.. Life

>just gets more fun.Any advice would be appreciated.

>

> Thanks Heidi

>

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Welcome Heidi,....I'm so happy you joined the group. This is a great

place to be. I'm like you, have a lot of different medical problems.

I also take methotrexate, along with folic acid. I do have diarrhea,

but I just live with it. I take the mtx on the weekend, when I know

I'm close to the house. I hope the Folitinic helps you, let us know.

I have heard from many the mtx injections are a lot better, so that

might be the best choice for you. I hope you do well on Enbrel, never

have tried it. I've heard a lot of good words about it though. Yes,

we just keep having more and more fun:) You take care, and check back

in, Tawny

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