First Timer

[Guest guest]

Hi,

Welcome first timer! Sorry, I'm all the way east of you in South Florida! I

think we have some members from CA, and I'm sure they'll be talking to you

soon! If the " in person " group doesn't pan out, this internet group is a

great source of support and advice as well- I don't know what my mind would

have been like without them! Hope you'll stick around and share your little

one's story with us too!

Mom

[Guest guest]

Hi:

Welcome to our group! I wish I was in your area to meet with you but

I live in Michigan. We do have a few other CA area members though.

What type of helmet or band will your son be casted for? Would you

mind sharing some more of your son's plagio story with us?

Welcome again to our group! We look forward to getting to know you

more.

Debbie Abby's mom DOCGrad

MI

--- In Plagiocephaly@y..., " adrianmansion " <davidandadrian@a...>

wrote:

> Hi out there. Im new here and my 6 month old son is still waiting

to

> have his head cast done. I could use anyone to talk to and possibly

> put together a group in LosAngeles where we can hang out with our

> kids and swap support and stories. Anyone interested? Let me know.

[Guest guest]

Hello and welcome! Sorry, I'm not from the LosAngeles area, but wanted to

welcome you to the group anyways. We do have southern Carlifornians amongst us

so hopefully you will hear from one of them. In the meanwhile I would love to

hear more background info on your baby.

Welcome,

Marci (Mom to )

Oklahoma

[Guest guest]

Hi and welcome to the group! I wish I lived out in CA, that is a

wonderful idea to have your own little support group going. We have

quite a few members out your way so I'm sure you'll hear from them.

In the meantime, can you tell us more about your son? When did you

first notice his flatness? Where are going for the casting? I look

forward to getting to know you!

Niki

Kaylie & Danny (STARgrads)

Phila., PA

--- In Plagiocephaly@y..., " adrianmansion " <davidandadrian@a...>

wrote:

> Hi out there. Im new here and my 6 month old son is still waiting

to

> have his head cast done. I could use anyone to talk to and possibly

> put together a group in LosAngeles where we can hang out with our

> kids and swap support and stories. Anyone interested? Let me know.

[Guest guest]

Hi-

Welcome to or site. I'm in CA, but unfortunately Northern CA-

Sacramento. I would love to have a face to face support group, but

you will find this site very helpful. Is your son doing DOC or STAR

band? Love to hear your story.

-Mom to Ian

--- In Plagiocephaly@y..., " adrianmansion " <davidandadrian@a...>

wrote:

> Hi out there. Im new here and my 6 month old son is still waiting

to

> have his head cast done. I could use anyone to talk to and possibly

> put together a group in LosAngeles where we can hang out with our

> kids and swap support and stories. Anyone interested? Let me know.

[Guest guest]

Hi, my name's Andersen and I live in Rancho

Cucamonga. Welcome to the group. I just joined a

short time ago. Do you already have an appointment to

get casted or are you waiting for preauthorization

from your insurance? My little , 6 mos, has been

banded for a month and a half now through Cranial

Technologies in Burbank. I'm there every two weeks on

Fridays. I work swing shift, with Fridays and

Saturdays off...kind of a crazy schedule. Not sure

how often I'd be able to meet, but my phone # is

(909)463-6505 if you'd like to call. I'm usually home

till 1:00 on my workdays or you can catch me on my

days off. I'd love to talk to you. Is your son

getting a DOC Band through Cranial Tech in Burbank?

They're really wonderful there and , the

orthotist, is great with babies. I look forward to

hearing from you.

, 's mom

Southern California

--- adrianmansion <davidandadrian@...> wrote:

> Hi out there. Im new here and my 6 month old son is

> still waiting to

> have his head cast done. I could use anyone to talk

> to and possibly

> put together a group in LosAngeles where we can hang

> out with our

> kids and swap support and stories. Anyone

> interested? Let me know.

>

>

__________________________________________________

[Guest guest]

Hi its ! I have a 19 month old named and my 6 month old son who is getting the helmet. Gosh...so many appts. Thats what I have to look forward to. We just got casted today. It went pretty well. He didnt cry at all until they tried to pop his big ol head out of the cast. I also just joined a So. Calif. group that we all keep in touch and hook up at the zoo or where ever. Well definately have to start something with all the plagio. kids and their parents. It would make for some great pics. Ill keep in touch

[Guest guest]

Hi My ^ month old son just got casted today and we can expect the helmet in about a week. Cant wait to see how they adjust. Let me know how it goes. Im not looking forward to him having to sleep in it. Especially with the heat rising everyday. We live in Pasadena. Looks like there are a few others around LA. We should definately plan a get together one day.

[Guest guest]

Hi there,

We live in Thousand Oaks and my daughter, Sofia, just got casted a week and a

half ago. She is due to receive her DOC band next Thursday. She is 7 months old

and has been diagnosed with COngenital Torticollis and Plagiocephaly. She has

been going to PT for about two months now and we have seen improvement.

We also went to Cranial Tech in Burbank and kevin, the orthostist is great. We

are still faily new at the whole process, but feel free to call or e-mail back

if you would like to talk. Where are you in the LA area?

805-379-2231

Take care and good luck,

Kellie(Sofia's mommy)

--- adrianmansion <davidandadrian@...> wrote:

>> Hi out there. Im new here and my 6 month old son is

>> still waiting to

>> have his head cast done. I could use anyone to talk

>> to and possibly

>> put together a group in LosAngeles where we can hang

>> out with our

>> kids and swap support and stories. Anyone

>> interested? Let me know.

>

[Guest guest]

Dear Tammy,

Welcome to the group! Sorry your pain has driven you here, though. I

think waiting for a diagnosis and finding caring doctors is the hardest

part. I waited 2 years for a diagnosis, then it just HAD to be

something weird nobody had heard of before (Dercum's Disease.) It will

come, though, and you will get relief, just have faith and I'll keep

you in my prayers. This is a good, compassionate group with lots of

good advice.

Peace,

Judi in IN

59 yo wife and grandmother

[Guest guest]

> Dear Tammy,

>

> Welcome to the group! Sorry your pain has driven you here,

though. I

> think waiting for a diagnosis and finding caring doctors is the

hardest

> part. I waited 2 years for a diagnosis, then it just HAD to be

> something weird nobody had heard of before (Dercum's Disease.) It

will

> come, though, and you will get relief, just have faith and I'll

keep

> you in my prayers. This is a good, compassionate group with lots

of

> good advice.

>

> Peace,

> Judi in IN

> 59 yo wife and grandmother Thank-You Judi for your'e sweet

note. I just got a call from the Dr.s office saying it could be

Lupus.Not good news but my faith is strong and I know GOD is with

me.They are going to try new meds.this evening.I can see this is a

very good group.I don't know anyone personaly that has this so I am

vry gratefull for this site.All of you are in my prayers. -Tammy-

[Guest guest]

Tammy,

Welcome to the group. I hope you get to feeling better

soon. You will learn a lot from everyone here.

Hopefully you will get a dx soon. As soon as you can

get some medications started the better you will feel.

Beth(AR)

--- clarabell4ever2000 <clarabell4ever2000@...>

wrote:

> Good Morning All! This is my first time here.I am a

> 42 year old FM. I

> have not officialy been diagnosed with RA but will

> be going to a

> specialist next week.Just about everything elese has

> been ruled out so

> this is the next step.I have had " spells " for about

> a year now.With

> each one being more intense and lasting longer.Just

> thinking it was

> reg.arthritis I would take Aleve and get better.Then

> about 2 months ago

> it hit and will NOT go away.The Dr.I WAS going to

> said it was JUST

> arthritis and that NOTHING was wrong with me.I am

> not a complainer and

> when I say I hurt it is bad.Each day is getting

> harder and harder to

> move with out pain.I am stuck in the bed most of the

> time because the

> more I move the more it hurts and swells.The parts

> that are affected

> are my

> neck,shoulders,elbows,wrists,hands,knees,ankles and

> feet.I am

> currently taking Darvocet and Percoet(not

> together)for pain and

> Zanaflex at night (musscle relaxer).I take

> Effexor(anti depressant)to

> relieve my menapause symtems(ovaries removed at age

> of 27)and NASAID's

> causes stoumach bleeding.Sorry for the long message

> but this first time

> and I had alot to say.Any suggestions will be

> GREATLY

> appreciated.THANKS!-Tammy-

>

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

Thank-You Beth! I have already learned alot.I am soooo glad I found

this group!!!-Tammy-

>

> > Good Morning All! This is my first time here.I am a

> > 42 year old FM. I

> > have not officialy been diagnosed with RA but will

> > be going to a

> > specialist next week.Just about everything elese has

> > been ruled out so

> > this is the next step.I have had " spells " for about

> > a year now.With

> > each one being more intense and lasting longer.Just

> > thinking it was

> > reg.arthritis I would take Aleve and get better.Then

> > about 2 months ago

> > it hit and will NOT go away.The Dr.I WAS going to

> > said it was JUST

> > arthritis and that NOTHING was wrong with me.I am

> > not a complainer and

> > when I say I hurt it is bad.Each day is getting

> > harder and harder to

> > move with out pain.I am stuck in the bed most of the

> > time because the

> > more I move the more it hurts and swells.The parts

> > that are affected

> > are my

> > neck,shoulders,elbows,wrists,hands,knees,ankles and

> > feet.I am

> > currently taking Darvocet and Percoet(not

> > together)for pain and

> > Zanaflex at night (musscle relaxer).I take

> > Effexor(anti depressant)to

> > relieve my menapause symtems(ovaries removed at age

> > of 27)and NASAID's

> > causes stoumach bleeding.Sorry for the long message

> > but this first time

> > and I had alot to say.Any suggestions will be

> > GREATLY

> > appreciated.THANKS!-Tammy-

> >

> >

> >

> >

> >

>

>

>

>

> __________________________________

> - PC Magazine Editors' Choice 2005

> http://mail.

[Guest guest]

what do blood tests show?

Are they consistant with an overactive immune system?

is not an overnight cure. HBOT, secretin, chelation

all have quick-cure claims.

What we've found is that can be slow-acting on some children.

We've been told that the results are lifelong.

The antivirals may take more than a year to fully do their job.

Antifungals longer.

Paxil may not be the SSRI for your son. Our son did ok on Paxil

but much better on Celexa.

Have you had a chance to do a SPECT scan on him?

Don't take this the wrong way but if you want a quick treatment for

a disease process where its origins are not known, try

the treatments noted above or stuff your child full of supplements

and cross your fingers. Dr G's work would be more far along if

the medical community were more openminded and used

medical science.

doris

land

Posted by: " ldbender " loribender@...

<mailto:loribender@...?Subject=%20Re%3AAdvice%20please%2E%2E>

ldbender <ldbender>

Sun Feb 18, 2007 12:31 pm (PST)

Hello.

This is my first time posting on this group. I hope someone can give

me some words of wisdom.

My son is 4 and we have been using Dr. G's protocol since October

2006.

No gains, just regression. I am at my breaking point with the

treatment. My son is taking Valtrex, Diflucan and Paxil.

He has lost many skills and accomplishments since October.

This doesn't seem right to me. Dr. G doesn't appear to be too

concerned.

Should we have seen some gains or positives from the treatment in the

past 4 months?

He's been on GF/CF diet for almost 2 years. He is also on Saizen for

growth hormone deficiency.

My husband and I want to stop the treatment. Any advice would

be greatly appreciated.

Thanks

Lori Bender

[Guest guest]

Hi Chip,

Welcome to the group. I was 31 when I was diagnosed and now I'm 37 so

as you can see, CML is no longer the death sentence that it once was.

I remember having a charlie horse that could have killed a horse the

first week that I started Gleevec. It took a few more months for the

other side effects to start though....the eye swelling, diarreah,

muscle cramps etc. The side effects can get tiresome after years and

years but I always remind myself that it's a small price to pay to be

alive.

Take care,

Tracey

>

> Greetings. I'm a 36yo male living in ton, WV. Diagnosed with

> CML on 7-12-07. Went in for annual physical and wbc came back at

> 89,000. As of today wbc is 11,200. Started 400mg Gleevec 2 weeks

ago.

> Just went through some excruciating bone pain and am feeling much

> better. Am back to work, at a very comfortable pace, and am just

> chiming in to say, " hello " .

> All the Best,

> Chip

>

[Guest guest]

Hi Chip welcome, You say annual so the last checkup also checked wbc was normal

,if this is true you got C M L within the year.I presume you had no spleen

swelling!

Any idea how you contracted CM L.

dxt 12/24/05 wbc 164000 last test pcr .09

[ ] First Timer

Greetings. I'm a 36yo male living in ton, WV. Diagnosed with

CML on 7-12-07. Went in for annual physical and wbc came back at

89,000. As of today wbc is 11,200. Started 400mg Gleevec 2 weeks ago.

Just went through some excruciating bone pain and am feeling much

better. Am back to work, at a very comfortable pace, and am just

chiming in to say, " hello " .

All the Best,

Chip

________________________________________________________________________________\

____

oneSearch: Finally, mobile search

that gives answers, not web links.

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[Guest guest]

Chip,

I am 48, I was diagnosed 4 years ago last July 14.

The first week or so after starting Gleevec - I had

some burning pain in my lower back/hips. I also had

cramps when I cut the grass with my push mower.

After about 2 months I went back to playing sports. I

played touch football and basketball from lets say

October 2003 till now. I do have muscle strains,

some tender skin and an occasional lapse of energy

around an hour after I take my Gleevec (I take it with

dinner).

I feel great 95% of the time. Now, if this medicine

would only help me shoot better at hoops! But I guess

that would be a real miracle!

Good luck!

Chris

--- Marcos Perreau Guimaraes

<montereyunderwater@...> wrote:

> Hi Chip,

> I was dx at 38 and I am now nearing 41. I have

> little in terms of side

> effects. As you I had bone/joint pain for a week or

> so at the beggining but

> nothing since. I am still doing all I was doing

> before, even got the go

> ahead from the drs to keep deep diving. I do take

> cml seriously and educate

> myself to know what's going on, but I enjoy a normal

> life.

> Best wishes,

> Marcos.

>

>

> On 8/8/07, Tracey <traceyincanada@...> wrote:

> >

> > Hi Chip,

> >

> > Welcome to the group. I was 31 when I was

> diagnosed and now I'm 37 so

> > as you can see, CML is no longer the death

> sentence that it once was.

> >

> > I remember having a charlie horse that could have

> killed a horse the

> > first week that I started Gleevec. It took a few

> more months for the

> > other side effects to start though....the eye

> swelling, diarreah,

> > muscle cramps etc. The side effects can get

> tiresome after years and

> > years but I always remind myself that it's a small

> price to pay to be

> > alive.

> >

> > Take care,

> > Tracey

> >

> >

> > >

> > > Greetings. I'm a 36yo male living in ton,

> WV. Diagnosed with

> > > CML on 7-12-07. Went in for annual physical and

> wbc came back at

> > > 89,000. As of today wbc is 11,200. Started 400mg

> Gleevec 2 weeks

> > ago.

> > > Just went through some excruciating bone pain

> and am feeling much

> > > better. Am back to work, at a very comfortable

> pace, and am just

> > > chiming in to say, " hello " .

> > > All the Best,

> > > Chip

> > >

> >

> >

> >

>

>

>

> --

> Marcos Perreau Guimaraes

> Suppes Brain Lab

> Ventura Hall - CSLI

> Stanford University

> 220 Panama street

> Stanford CA 94305-4101

> 650 614 2305

> 650 630 5015 (cell)

> marcospg@...

> montereyunderwater@...

> www.stanford.edu/~marcospg/

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Pinpoint customers who are looking for what you sell.

http://searchmarketing./

[Guest guest]

Hi Chip,

I am 40 now and was dxed in April of 04 and gleevec was a miracle drug for

me and put me in remission in about a month. I too had very bad side effects

at first, especially swelling of the eyes, but over the years my side

effects are managed by pain meds, and over the counter nausea stuff. I do

still take xanax because for some reason since I was dxed I have tend to

stress out easy..lol. As has been stated Gleevec can allow most of us to

live a relatively normal life and life span, so hang in there. Some people

hardly have any side effects at all, and some have severe ones, so it sounds

hopefully Gleevec is going to work for you.

Terry

On 8/9/07, ez <lmartinez@...> wrote:

>

> Hi Chip,

>

> I am a female diagnosed at age 35 (pre fda approval for Gleevec) I am now

> 42.

>

> The first few years the side affects were more than they are now but it

> was

> really hard to complain as I was on daily interferon shots and 10 days a

> month I took another chemo injection called ARC my first year prior to FDA

> approval of Gleevec. The shots helped me to maintain without progression

> but

> other than that they had no impact on my BCR-ABL.

>

> The shots were horrible to say the least.

>

> When Gleevec was approved in 2001 I switched immediately to 400 mgs and

> have

> been on it for 7 years now with no detection of the BCR-ABL translocation

> after only 60 days of taking Gleevec.

>

> I am fortunate to live a pretty normal life with the exception of having

> some tired times of day, I do require at least 10 hrs sleep and I still

> have

> muscle spasms sometimes but all in all I no longer think of dying and I am

> grateful for gleevec and this cml community.

>

> I believe I will live a normal life span. Whatever that is for me? And as

> time goes on I pray that you too will have the same results from gleevec

> and

> the same confidence about your future.

>

> There are really a great bunch of folks here that are very knowledgeable

> so

> share all you can to get the best support possible.

>

> Welcome, I am glad you found us but sorry you had to.

>

> ez

>

> Dx 5-2000

>

>

[Guest guest]

There are only 3 places to get treatment. There is Dr. G in CA,

NNY Autism Center in NY, and Dr. in TX. Dr. G is *not*

associated with the other two so it's not exactly the same protocol

and I don't know how much it differs but here's the info:

Dr. 's info:

722 Tarpon Street Suite I

Port Aransas, Texas 78373

(361) 749-1930 Fax: (316) 749-1933

Cheryl

On Feb 26, 2008, at 9:42 PM, rdrgrubio wrote:

> Hello, first time signing on and posting here. My five year old son

> was diagnosed with PDD-NOS at age three. Researching and Dr.

> Goldberg's approach truly seems as an answer to my prayers. How do I

> contact a clinic or doctor near me in South Texas?

>

>

>