Colleen

[Guest guest]

Colleen - Thank you for caring I haven't gotten the kitten yet maybe I will

have second thoughts. When the kids all gone and grown and married it gets

lonely when you are used to having animals around. Hugs,

[Guest guest]

Colleen,

You are a great friend to Rhea. I will pray.

Rosemary

[Guest guest]

In a message dated 10/18/00 3:15:28 PM Eastern Daylight Time,

tyconow2@... writes:

<< lease pray for my friend. She is dying and I know it. Thanks for letting

me vent my frustrations. I truly love my friend and only want the best for

her. If God sees fit to take her, please let it be quickly. Her suffering

has gone on much too long now.

Lovingly,

Colleen >>

You have been such a wonderful frien to Retha.

Both of you will be in my prayers.

May God's will be done.

((((((HUGS))))))

Ginger-gehud119@...

[Guest guest]

Thank you Colleen for your response in this group to me!

[Guest guest]

ctlynch99@...>

Subject: New Member - Auto Immune Hepatitis and Cirrhosis

Hi there

I am a 44yo Australian and was diagnosed with AIH when I was 13.

Just recently I 'turned my back for a moment' and lo and behold I

now have cirrhosis. Saw this website and thought it looked great.

For those with AIH, I lived a fruitful life and worked full time

with the disorder (on steriods and immune-suppressants most, but not

all, the time) for 30 years, also supporting my body nutritionally

etc.

I have just been discharged from 5 wks in hospital to get the

cirrhosis 'under control', and am wondering if there is anyone out

there who has had AIH which progressed to cirrhosis, and/or anyone

who has good stories to share about cirrhosis. Or at the least

someone to tell me it can get better than this! My motto for a long

time has been 'I have not come this far to give up now'.

Colleen

Hello Colleen,

I'm a 54 year old with PBC/AIH.I was diagnosed in 1999 with cirrhosis,and

have been told by my Liver Consultant that a transplant need not be

considered for some time yet.Just cos you have cirrhosis doesn't necessarily

mean that you are at death's door.

Louise

Newcastle upon Tyne

England

[Guest guest]

Hi -

Thank you so much! I know how many people are in this

group... so for you to remember me warms my heart.

Caitlin is doing OK - just sort of plugging along.

She's still on the Humira and the MTX - and she's been

on 10mg pred daily. She still pulses 20mg/3x/day for

five days every 21 days. We try to cut back the daily

pred a bit after each pulse, but we always seem to end

up back at 10 before long. But the blessing is that

when she was off a daily dose in the early part of the

year, she did manage to grow a little and gain a

little weight. I find that the 10mg doesn't affect

her mood like it used to... she handles it very well.

We're waiting for the Regeneron trial to start here -

hopefully next month. That's the new IL-1 trap that

Georgina has posted about a couple of times. It's a

weekly sub-cu and we are willing to give it a shot.

(No pun intended

I'm still praying for the MRA trials - maybe in the

spring. It seems like so many of our kids have

trouble in the spring... I've always found that so

curious. You think of spring as rebirth and fresh air

and health... yet we always have so many kids flaring.

Hopefully, 2006 will be a different story altogether!

Thanks you - and take care of all you guys, especially

Rob. I hope you are enjoying the fall! We went from

91 degrees yesterday to 73 today. Crazy!

Colleen

--- H Schulz <snooksmama@...> wrote:

> Colleen:

> We haven't heard from you in awhile about Caitlin.

> How is she doing? What

> meds is she on now?

> I've been thinking of you guys.

> and Rob 16 Spondy

>

__________________________________

Start your day with - Make it your home page!

http://www./r/hs

[Guest guest]

-I Colleen.

IM so glad you updated on caitlin. I too, have been wondering how

shes doing. I sure wish they would hurry up with the MRA. I bet you

cannot wait. I hope and pray it will be the answer for her.

I look forward to hearing more about this Regeneron trial, ive not

heard about it, I guess i must have missed some posts. let us know

how it goes and whats all involved with it.

hugs Helen and (8,systemic)

, Colleen <bookissmom@y...> wrote:

>

> Hi -

>

> Thank you so much! I know how many people are in this

> group... so for you to remember me warms my heart.

>

> Caitlin is doing OK - just sort of plugging along.

> She's still on the Humira and the MTX - and she's been

> on 10mg pred daily. She still pulses 20mg/3x/day for

> five days every 21 days. We try to cut back the daily

> pred a bit after each pulse, but we always seem to end

> up back at 10 before long. But the blessing is that

> when she was off a daily dose in the early part of the

> year, she did manage to grow a little and gain a

> little weight. I find that the 10mg doesn't affect

> her mood like it used to... she handles it very well.

>

> We're waiting for the Regeneron trial to start here -

> hopefully next month. That's the new IL-1 trap that

> Georgina has posted about a couple of times. It's a

> weekly sub-cu and we are willing to give it a shot.

> (No pun intended

>

> I'm still praying for the MRA trials - maybe in the

> spring. It seems like so many of our kids have

> trouble in the spring... I've always found that so

> curious. You think of spring as rebirth and fresh air

> and health... yet we always have so many kids flaring.

> Hopefully, 2006 will be a different story altogether!

>

> Thanks you - and take care of all you guys, especially

> Rob. I hope you are enjoying the fall! We went from

> 91 degrees yesterday to 73 today. Crazy!

>

> Colleen

>

> --- H Schulz <snooksmama@j...> wrote:

>

> > Colleen:

> > We haven't heard from you in awhile about Caitlin.

> > How is she doing? What

> > meds is she on now?

> > I've been thinking of you guys.

> > and Rob 16 Spondy

> >

>

>

>

>

> __________________________________

> Start your day with - Make it your home page!

> http://www./r/hs

>

[Guest guest]

Colleen:

I was so very sorry to hear that Caitlin's remission was over. I'm so

glad that she is getting in the new trial. They're having adult trials

here at my rheumatologists office, interestingly enough...

I hope that this new regimen is just the ticket. I hope that July 3 gets

here very quickly for her. Tell her that we are thinking of her and hang

in there too, mom...bless your hearts.

and Rob 17 Spondy

On Thu, 22 Jun 2006 15:53:01 -0700 (PDT) Colleen

<bookissmom@...> writes:

HI Helen-

Caitlin is about the same. I stayed home with her yesterday and could not

get her out of bed until almost 5pm. We worked with thera-putty for

awhile and she did do some swimming - so she was able to sit at the table

after for dinner. But she's been waking up by 12:30am or so - every night

- and she invariably ends up in our bed - and I stay in hers until Dave

gets up for work at 4. She'e been spiking fever during the night and

having somebody close is the only thing I can offer her... and it's not

much. You know how it goes....

We have our first visit for the trial on Monday --- but it will be a

baseline visit with labs and tests. She won't get the first injection

until the following Monday - July 3. It seems like such a long way off!!!

Waiting stinks.... I know how poor is feeling.

Sorry to hear about poor Nick! Six teeth!!!! I hope the tooth fairy was

good to him I remember there were posts on this topic last year

sometime... when I was a kid, I was glad to get a dollar. Six teeth and I

might have been expecting some Disney stock options or something )))

Hope he's feeling better today -

Thanks for the post-

Colleen

hburger64 <hburger64@...> wrote:

I have been thinking of Drea and Caitlin a lot today and was wondering

how they are doing.

I hope today was a better day for them both.

hugs Helen and (8,systemic)

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

gets better. Check out the new email design. Plus there’s

much more to come.

[Guest guest]

nancy barnes <nancyb315@...> wrote: hi Colleen,thank you for your words of encouragement.I had talked of trying to see Dr. Reiff, but we had a positive appt and I foolishly postponed the second opinion - now I regret it.It is Dr. Reiff we are trying to get an appt with now. I phoned CHLA, but Dr. Reiff isn't taking new patients, but the secretary for rheumatology at 's is a patient of my husbands...she is supposed to be getting us in contact with the nurse that books for Dr. Reiff at 's. Don't know if my husband being a social worker on staff there for many years will speed the process or not...the nurse and my husband know of one another...I can only hope. 's pain dr is at CHLA, and actually, 's is a few miles closer for us, but being as we are in Orange County and drive to UCLA, either is worth it.Do I remember you saying (I hope) that Dr. Reiff tends to be proactive? Because I believe that is what she needs at this time. Colleen <bookissmom > wrote: HI -I am so sorry.... and I can totally feel and understand your frustration. I wish I had something great to offer.....I know that CHLA is booked beyond measure. I think I remember that you were trying to get in to see Dr. Reiff (that's Caitlin's doc as well....) I did ask him how a new patient gets in when the receptionist just tells you they are totally booked, and he said that sometimes you can get in to see somebody for a "second opinion". I don't know if that gets you on to a permanent rotation or just in for one visit.I think I also mentioned that he does clinic down at Children's Hospital in Long Beach once or twice a month. I know that is even

farther for you... but I think they are slightly less impacted. I called about a month ago to ask that question for somebody else on the board, and the NP there told me it was about a 30 day wait. I don't blame you for wanting some fresh eyes.... and I think that is the best thing you can do for right now. It certainly won't hurt! I hope things turn around soon.....Colleen (mom to Caitlin, 9, systemic)nancy barnes <nancyb315 > wrote: I don't know whether to scream, or cry, or both....we are back from Ct/NY...and went to see the rheumy on Wed. I have been so frustrated/upset that I have been avoiding phone calls and this forum...dumb, I know..as some of you know, she had ankle pain for about a

week, followed by a rash and severe swelling of her ankles and toes. The swelling returned again, for two days this time, but no rash.My frustration is, the rhuemy did her physical exam and 's elbow, hips, knees, ankles, big toes, and low back were all stiff and highly tender; her ankles still had observable swelling. The rheumy said, let's have her moving..get in the pool 2-3 days a week and give her Relafen... I don't mind encouraging her to get in the pool, but she has been so much worse I feel at this point, it is going to take something more.Mind you, this will be her 4th anit-inflammatory...and she has been forcing herself to get moving and walk a little every day, even with the swelling. Michele - I read what you wrote to Meissa about rheumy's going more on physical findings than labs...I only wish I could get this rheumy to do that! 's labs have

positive ANA, sometimes eleveted CRP, neg RF...and I get the distinct impression that she puts more weight on the labs than the physical findings. I asked the dr, how does she explain the swelling and rash? She said either arthritis or tendonitis...and that was that..!?!? I feel so badly for - she is so discouraged. I am trying to get her on the wait list for another rheumy at a different hospital...I would appreciate positive thoughts for , both for her spirits, and that she will be able to get into this new rheumy sooner than later...oh - and that he is more proactive than this rheumy. (, 16, cvid, spondy, fibro, migraines) Never miss an email again! Toolbar alerts you the instant new Mail arrives. Check it out. Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Autos' Green Center.

Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Games.

[Guest guest]

Hi -

I've familiar with most of the pediaric

rheumatologists in the area, and many of them have

treated Caitlin at one time or another. Dr. Reiff has

been her doc for almost four years now. He is very

aggressive - he is often involved with clinical trials

and has always layed out several options for us. The

medicine that is working so well for Caitlin right now

is a clinical trial med, under his direction. Because

Caitlin's disease has been very stubborn, his style

has been a great fit. I'm a big fan....

Nothing against any of the other doctors - because

several of them are also of the same mindset. And all

of them have done what they thought was best to help

Caitlin... some of them just have smaller boxes that

they stay within....

If your husband knows Lynn Bowlin at 's,

maybe she can help get you in, either there, or at

CHLA. She is a God-send.... and has been my right

hand all the way through Caitlin's care.

Hope you get in soon-

Colleen

--- nancy barnes <nancyb315@...> wrote:

>

>

> nancy barnes <nancyb315@...> wrote:

> hi Colleen,

>

> thank you for your words of encouragement.

>

> I had talked of trying to see Dr. Reiff, but we had

> a positive appt and I foolishly postponed the second

> opinion - now I regret it.

>

> It is Dr. Reiff we are trying to get an appt with

> now. I phoned CHLA, but Dr. Reiff isn't taking new

> patients, but the secretary for rheumatology at

> 's is a patient of my husbands...she is

> supposed to be getting us in contact with the nurse

> that books for Dr. Reiff at 's. Don't know if

> my husband being a social worker on staff there for

> many years will speed the process or not...the nurse

> and my husband know of one another...I can only

> hope. 's pain dr is at CHLA, and actually,

> 's is a few miles closer for us, but being as

> we are in Orange County and drive to UCLA, either is

> worth it.

>

> Do I remember you saying (I hope) that Dr. Reiff

> tends to be proactive? Because I believe that is

> what she needs at this time.

>

>

>

> Colleen <bookissmom@...> wrote:

> HI -

>

> I am so sorry.... and I can totally feel and

> understand your frustration. I wish I had something

> great to offer.....

>

> I know that CHLA is booked beyond measure. I think

> I remember that you were trying to get in to see Dr.

> Reiff (that's Caitlin's doc as well....) I did ask

> him how a new patient gets in when the receptionist

> just tells you they are totally booked, and he said

> that sometimes you can get in to see somebody for a

> " second opinion " . I don't know if that gets you on

> to a permanent rotation or just in for one visit.

>

> I think I also mentioned that he does clinic down at

> Children's Hospital in Long Beach once or

> twice a month. I know that is even farther for

> you... but I think they are slightly less impacted.

> I called about a month ago to ask that question for

> somebody else on the board, and the NP there told me

> it was about a 30 day wait.

>

> I don't blame you for wanting some fresh eyes....

> and I think that is the best thing you can do for

> right now. It certainly won't hurt! I hope

> things turn around soon.....

>

> Colleen (mom to Caitlin, 9, systemic)

>

> nancy barnes <nancyb315@...> wrote:

> I don't know whether to

> scream, or cry, or both....

>

> we are back from Ct/NY...and went to see the

> rheumy on Wed. I have been so frustrated/upset that

> I have been avoiding phone calls and this

> forum...dumb, I know..

>

> as some of you know, she had ankle pain for about a

> week, followed by a rash and severe swelling of her

> ankles and toes. The swelling returned again, for

> two days this time, but no rash.

>

> My frustration is, the rhuemy did her physical exam

> and 's elbow, hips, knees, ankles, big toes,

> and low back were all stiff and highly tender; her

> ankles still had observable swelling. The rheumy

> said, let's have her moving..get in the pool 2-3

> days a week and give her Relafen... I don't mind

> encouraging her to get in the pool, but she has been

> so much worse I feel at this point, it is going to

> take something more.

>

> Mind you, this will be her 4th

> anit-inflammatory...and she has been forcing herself

> to get moving and walk a little every day, even with

> the swelling.

>

> Michele - I read what you wrote to Meissa about

> rheumy's going more on physical findings than

> labs...I only wish I could get this rheumy to do

> that! 's labs have positive ANA, sometimes

> eleveted CRP, neg RF...and I get the distinct

> impression that she puts more weight on the labs

> than the physical findings.

>

> I asked the dr, how does she explain the swelling

> and rash? She said either arthritis or

> tendonitis...and that was that..!?!? I feel so

> badly for - she is so discouraged. I am

> trying to get her on the wait list for another

> rheumy at a different hospital...

>

> I would appreciate positive thoughts for ,

> both for her spirits, and that she will be able to

> get into this new rheumy sooner than later...oh -

> and that he is more proactive than this rheumy.

>

> (, 16, cvid, spondy, fibro, migraines)

>

>

>

>

>

>

>

>

>

> ---------------------------------

> Never miss an email again!

> Toolbar alerts you the instant new Mail

> arrives. Check it out.

>

>

>

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check out new cars at Autos.

>

>

>

>

> ---------------------------------

> Looking for earth-friendly autos?

> Browse Top Cars by " Green Rating " at Autos'

> Green Center.

>

>

>

>

> ---------------------------------

> Be a PS3 game guru.

> Get your game face on with the latest PS3 news and

> previews at Games.

__________________________________________________

[Guest guest]

Colleen:How is Caitlin doing? What medication is she on now? I have not kept up very well in the last 6 months, can you give us an update?Thanks! and Rob 18 Spondy Re: Stills Disease > Hi -> > Stills Disease is actually the adult form of systemic > juvenile rheumatoid arthritis. Sometimes, docs refer to it as > Stills - there are plenty of systemic families here on the > board. My daughter was diagnosed with it at the age > of 3 - that was over 6 years ago. I would be happy to > share with you information on any of the number of possible > medications - I know they are all scary - but aggressive > treatment is the best opportunity for a good, long term outcome.> > I'm guessing based on the diagnosis of Stills that > perhaps you saw an adult rheumatologist? I'm not sure > where you live.... but it would be best to locate a board > certified pediatric rheumatologist in your area. That can > be challenging... but the American College of Rheumatology has a > list on their web site. The local chapetr of the Arthritis > Foundation can also be a great resource for referrals, > information on medications, school accomodations etc.> > I know that you'll find with the right treatment, your > son will regain the energy he seems to ahve lost... and he will > be able to play sports with great happiness and success!> > Please feel free to ask anything....I'm sorry your family > has to deal with this awful disease - but I'm glad you found us!> > Best hopes-> Colleen (mom to Caitlin, 9, systemic)> > McNicholl <l.mcnicholl@...> wrote:> Hi everyone> I'm new to this group but have a son that was diagnosed with Stills> Disease 3 years ago. Is there anyone else in the group that has a> child with this? He has been backwards and forwards to the Hospital> and Doctors ever since. He is now 5 but his symtoms are getting worse.> We have tried changing his diet which has kind of helped. We haven't> put him on steroids yet, I read about the side effects and > choose to> hold off as long as possible. He is now having problems with his legs,> wrist, stomach, back and has extreme headaches. He is a very active> boy, loves his sport but finds it really hard getting moving in the> mornings and lacks the energy in the afternoon. I don't know where> else to go as his specialist passed away 18 months ago. Any> information would be greatly appreciated.> > > > > > > > __________________________________________________>

[Guest guest]

Hi Colleen,

Would you please tell me what you used for treatment of yeast that worked so

well for your ds?

Thanks so much.

Yvette

[ ] Group Meeting Results/DAN

Info.

> > >

> > >

> > >

> > > Went to the group meeting in my town tonight. My town is 1/4

> square

> > > mile, Mayberry, everyone knows everyone elses beeswax so we

> signed

> > > confidentiality agreements but are allowed to do what I am

doing

> > now

> > > so long as we say, " Someone in my group. "

> > >

> > > The group is made up of parents of the following types of

kids

> but

> > > not all have just speech issues and one, the only one

exposed to

> > > fluoride in large doses, is diagnosed with dyspraxia.

> > >

> > > 1) PDD Nos, sensory issues pretty severe.

> > > 2) Nonverbal, PDD Nos, older sibling possible Aspergers.

Going to

> > > Neubrander, slightly leary about him.

> > > 3) Me, with one kid with shiners and, off GFCF diet she is

> whiney,

> > > has focus issues, food strikes and less unprovoked speech.

The

> > other

> > > kid is undiagnosed but had signs of apraxia and ASD. Low

tone,

> > > initial trouble producing speech, poor receptive, fine and

gross

> > > motor issues. Those things improved and some resolved on

GFCF

> diet

> > > and removal of bad water. Articulation issues pend.

> > >

> > > The mom of the sensory kid went GFCF in Sept and has seen

major

> > > changes. She went to a DAN (A PhD not MD), Dr. King who

operates

> in

> > > conjunction with an MD, Dr. Podell, in Springfield, NJ. The

mom

> is

> > > healing the kid on diet but wanted to know where the kids

gut was

> > at,

> > > if she was getting the right vitamins and minerals, using

the

> right

> > > probiotic, etc. She was not interested in chelation. She

also

> > wanted

> > > alternative remedies to things that have plagued her kid in

the

> > past,

> > > like ear stuff.

> > >

> > > She did poop and pee tests via Drs Data and vitamin

measurements

> > via

> > > Bioreference. She also did an IGE test. What she discovered

was

> > that

> > > milk and wheat are an issue and some other things as well,

mostly

> > she

> > > realized but a few, like soy and rice, must leave the diet.

The

> > > metals testing showed the worst of her stuff was actually,

at

> this

> > > point " high normal. " The two big things that need addressing

were

> > > aluminum and nickel. Neither are a surprise. We live in a

town

> > where

> > > aluminum frame windows are made and then there are the

vaccines.

> > > Several industries have operated in this town so nickel is

also

> not

> > a

> > > surprise.

> > >

> > > The interesting thing was the poop test and what it told her

> about

> > > what the kid was and was not getting from the current

probiotic

> and

> > > how to address it as well as a panel showing bacterial

> > > susceptibilities and natural agents that could be used to

address

> > > these.

> > >

> > > Despite giving calmag every day the kid is low in calcium.

> > >

> > > So for $500 for the first visit, $350 paid by insurance, and

> > another

> > > $1500 for poop, pee, minerals, vitamin and bacterial

> susceptibility

> > > tests and IGG food sensitivity testing and maybe some more

for a

> > > second visit this woman has a blueprint to treat her child.

A new

> > > probiotic was ordered, she is starting CLO, flax seed and

some

> > other

> > > stuff tailored to her child.

> > >

> > > So here I sit, one month shy of my son's EI age out date.

There

> are

> > > no preschools to take him because I waited. The town

preschool

> that

> > I

> > > waived because I thought they would not abide by diet, is

> actually

> > > asking the parents I was sitting with to present the GFCF

diet to

> > the

> > > school parents as it has helped NT siblings with behavioral

stuff

> > and

> > > parents. I can get him in there in 2 months. After what I

have

> seen

> > > in that meeting, where AP kids go GFCF and there problems

leave

> > > whereas my kid has aticulation stuff makes me wonder if what

is

> > left

> > > in my guy is fluoride and lead. I need the testing. I see

that

> now.

> > > None of these tests seem to address fluoride which concerns

me. I

> > > will test the baby water though. At least I'll have a gauge

of

> what

> > > went in. I need to know the minerals, the vitamins, the

flora

> info.

> > > and the remedies. This is the testing we should be able to

get

> when

> > > we go to a mainstream dr. with a child with delays. I am

scared.

> I

> > am

> > > mad. This should not have taken this long.

> > >

> > > Hubby is on board. We are behind the 8 ball now and it is

time to

> > > catch up. Janice was right. You have to do it all:

> > >

> > > The therapy

> > > The diet/vitamin and mineral regimen

> > > and

> > > the DAN testing

> > >

> > > You have to know what is in front of you and how to fix it.

My

> DAN

> > > knows the tests. Beyond that I don't know if he can give me

a

> > > blueprint like this woman got or if hers is even correct.

What I

> do

> > > know is I need the tests and I trust my own instincts to

find

> > someone

> > > knowledgable and trustworthy to help me find a map from

there.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

hi Colleen,

are you aware of anyone having difficulty registering online for the Orange

County Walk? I tried several times today and always received the message that

my browser was " not responding " and it just continued in the " holding pattern "

of trying to open the actual registration page...don't know if it is something

with my computer of the website. Any thoughts?

Thanks,

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

Never miss a thing. Make your homepage.

[Guest guest]

Colleen,

We are coming down for conference and will be there actually before conference.

We arrive 7/6, and are staying at the Peacock Inn in Anaheim. We're doing

Disneyland before the conference- has there been any word on any type of group

discount to Disneyland? We're getting ready to buy tickets here soon.

D.

--------- Re: California question

HI Beth-

I hate to say it... but in the LA area, there are definitely plenty of places to

avoid! Given your plan to see Universal Studios, Hollywood and Beverly HIlls,

let me check out some options for you. I think the best bet will be to camp near

Universal in terms of access and price....Hollywood is iffy and Beverly Hills...

well, a little on the pricey side!

We just got home from an Arthritis Family Camp weekend and it's back to school

tomorrow... so let me do some seeking tomorrow and I'll post back.

Can't wait to meet you and your family!

Colleen

Beth Yohnk <yohnkmom@sbcglobal . net> wrote:

I have a question for those of you who live in CA. We have purchased our

airfare, registered for the conference and booked a room for the conference. We

will then be spending a few extra days in CA, renting a car on Sunday. We are

looking for hotel suggestions specifically if there any areas to avoid. Our plan

(subject to change) is go to Universal Studios and then spend time in the LA

area. The kids want to see Hollywood and Beverly Hills and see the Walk of Fame.

We fly home the Thursday after conference, so we have three full days for fun.

Any other suggestions would be appreciated.

Thanks in advance.

Sending prayers & happy thoughts,

Beth :-)

[Guest guest]

HI -

There will be something.... I should have it defined in the next week or two.

It will probably be a web site you can purchase tickets from... we are sort of

waiting for them to upgrade their system. The old system had you paying an

$11.50 service charge for them to print and mail the tickets. Disney was about

to swicth to a system that lets you print tickets at home with no fee.... we're

sort of hoping it will up within this month so we can save more money.....

I'll post as soon as I have it confirmed... but please ask again if I haven't

said anything in a week

Looking forward to meeting you at the conference!

Colleen

newmom2003@... wrote:

Colleen,

We are coming down for conference and will be there actually before conference.

We arrive 7/6, and are staying at the Peacock Inn in Anaheim. We're doing

Disneyland before the conference- has there been any word on any type of group

discount to Disneyland? We're getting ready to buy tickets here soon.

D.

--------- Re: California question

HI Beth-

I hate to say it... but in the LA area, there are definitely plenty of places to

avoid! Given your plan to see Universal Studios, Hollywood and Beverly HIlls,

let me check out some options for you. I think the best bet will be to camp near

Universal in terms of access and price....Hollywood is iffy and Beverly Hills...

well, a little on the pricey side!

We just got home from an Arthritis Family Camp weekend and it's back to school

tomorrow... so let me do some seeking tomorrow and I'll post back.

Can't wait to meet you and your family!

Colleen

Beth Yohnk <yohnkmom@sbcglobal . net> wrote:

I have a question for those of you who live in CA. We have purchased our

airfare, registered for the conference and booked a room for the conference. We

will then be spending a few extra days in CA, renting a car on Sunday. We are

looking for hotel suggestions specifically if there any areas to avoid. Our plan

(subject to change) is go to Universal Studios and then spend time in the LA

area. The kids want to see Hollywood and Beverly Hills and see the Walk of Fame.

We fly home the Thursday after conference, so we have three full days for fun.

Any other suggestions would be appreciated.

Thanks in advance.

Sending prayers & happy thoughts,

Beth :-)