Conference

April 25, 2001

I'm bringing my MOMMY. Jeff is staying home with . My mom is going to

attend some conferences that conflict, meaning there are two at one time that

I'm interested in. She's all excited, she even bought a little tape

recorder!!! We live about 225 miles apart and trips to see my parents always

end up getting canceled for one illness or another, so this will be a

great chance to " bond " . I can't wait to meet everybody!

(mom to , age 2, antibody def, IgA def, partial T-cell def (CD3 &

CD19) - not on IGIV yet)

April 25, 2001

I'm bringing my MOMMY. Jeff is staying home with . My mom is going to

attend some conferences that conflict, meaning there are two at one time that

I'm interested in. She's all excited, she even bought a little tape

recorder!!! We live about 225 miles apart and trips to see my parents always

end up getting canceled for one illness or another, so this will be a

great chance to " bond " . I can't wait to meet everybody!

(mom to , age 2, antibody def, IgA def, partial T-cell def (CD3 &

CD19) - not on IGIV yet)

April 25, 2001

My husband and are attending the conference. Without our boys, who are 5

and 3. Our first time away. We are hoping to sneak in an outdoor baseball

game. The Metrodome in Minneapolis doesn't do baseball justice. We look

forward to meeting everyone.

Anjie

conference

Who is all planning on attending the conference in Baltimore? I know a lot

of you have said you are going, but it has been in sporadic emails that I

have sort of lost track (been on the busy side). And, if you are going, are

you taking your children? I am going with my two daughters: Allyssa (9 yrs.

old) and Cassie (6 yrs. old). I hope to see you all there!!!

Belinda Rose,

Mom to Allyssa and Cassie, igg immunodefficient, asthma, IVIG

April 25, 2001

My husband and are attending the conference. Without our boys, who are 5

and 3. Our first time away. We are hoping to sneak in an outdoor baseball

game. The Metrodome in Minneapolis doesn't do baseball justice. We look

forward to meeting everyone.

Anjie

conference

Who is all planning on attending the conference in Baltimore? I know a lot

of you have said you are going, but it has been in sporadic emails that I

have sort of lost track (been on the busy side). And, if you are going, are

you taking your children? I am going with my two daughters: Allyssa (9 yrs.

old) and Cassie (6 yrs. old). I hope to see you all there!!!

Belinda Rose,

Mom to Allyssa and Cassie, igg immunodefficient, asthma, IVIG

June 26, 2001

Ursula--

I completely agree that it's important to mention all types of illnesses to

others in hopes of possibly finding some common thread (I keep hoping little

ole us will figure out some connection the " experts " have not! hee hee).

I didn't mention that it wasn't so much the words but the way they were

spoken at times at the conference. Like with a level of excitement bordering

on pride. It was only a couple of times, but it gave me a creepy feeling.

I'm admittedly hypersensitive to this because my sister in law is very guilty

of it. She is still bragging to this day about her daughter having to be

intubated a few days after birth due to apnea. When she says it, it's like

she's saying her daughter just made prom queen. I try not to even let her

find out when 's sick, because she will frequently try to get into that

fabled " pissing contest " and one-up me! Yuck!

So please don't get me wrong and understand that I know where they are coming

from, it's just uncomfortable for me when I hear it. And I honestly don't

think I've ever heard that here, but then I'm not looking at anybody's face

when they " say " it, so I'm not seeing any rapture!

And I sure hope I've never sounded that way! Though I sometimes ramble on so

much, who knows what I sound like!

(mom to , age 2, polysaccharide antibody def, IgA def)

June 26, 2001

Point taken about the demeanor of people when things are

said. As my dad always told me " it takes all types to

make the world go round " . Whatever gives those braggy

types their jollies. Welcome home and I hope you had a

great trip.

--

Ursula Holleman

Macey's mom (5 yr. old with CVID, asthma, sinus

disease, GERD, kidney reflux, Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

June 26, 2001

I have to jump in here on this one. When we first noticed that Autumn was

sicker than " normal " children, we started looking for answers. Then, one

day we realized, there were no answers. Everyone said the same thing.

At the same time, the people in our lives, friends, family, co-workers, kept

asking why we didn't switch drs to someone who knew what they were doing.

Then, they would go on to explain about their child's latest illness or

something else like that. There was no way we could explain that the level

of illness they were dealing with didn't even come close to Autumn's

difficulties. And, we didn't want to explain--no one really wanted to

listen.

When I first found this group, I had to rub my eyes. I thought I was

dreaming. Everyone here knew my child--not personally, mind you. But

everyone could identify with what I was going through & could offer me

support when I needed it. I thank God everyday for this group & the comfort

it has provided me & my husband. (He doesn't sign on, but he reads posts

with me & always listens to the " goodies " someone else has to offer.)

I don't know why humans feel the need to play Gotcha! all the time. It's

really nerve-wracking & doesn't make those of use who are always Got feel

any better. In fact, there are many days when I don't even mention Autumn

or how she's feeling because I really don't want to get into a contest over

who's illnesses are worse. I just let God handle it so I don't have to.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery, 1 month

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July 7, 2001

Just to pipe in on the chatting. I wanted to share that my daughter who is

now 11 was on all kinds of meds. When I found our new doctor several years

ago she took her off all meds! is now on her IVIG every 3 weeks and

is doing great. It takes time. couldn't come off meds until she was

7 for safety reasons, our kids bodies are little and the meds will help when

they are young. The day will come.

Lorri ( 11 CVID)

Re: conference

> Just piping in here on the chatting. I know i've rambled on MANY time! I

> definately don't think or wish Sydni be more sick than anyone!! I wish

these

> wonderful kids did not have to deal w/ what they do! It's comforting

knowing

> they all have strong, caring parents! I think I'll feel better knowing

what

> is causing my Sydni's health issues. I will be able to move on from there.

I

> don't feel right about keeping her on an antibiotic with out knowing why.

Who

> knows, maybe there is a way to " fix " it and she won't need meds. So, I am

> still in the waiting process. waiting for someone to give an answer. I'm

very

> grateful to have found this group. Until your child developes a chronic

> illness, there is no way a person can understand what it is like to be

ythe

> parent of that child.

> Take care,

> Traci

>

July 7, 2001

Just to pipe in on the chatting. I wanted to share that my daughter who is

now 11 was on all kinds of meds. When I found our new doctor several years

ago she took her off all meds! is now on her IVIG every 3 weeks and

is doing great. It takes time. couldn't come off meds until she was

7 for safety reasons, our kids bodies are little and the meds will help when

they are young. The day will come.

Lorri ( 11 CVID)

Re: conference

> Just piping in here on the chatting. I know i've rambled on MANY time! I

> definately don't think or wish Sydni be more sick than anyone!! I wish

these

> wonderful kids did not have to deal w/ what they do! It's comforting

knowing

> they all have strong, caring parents! I think I'll feel better knowing

what

> is causing my Sydni's health issues. I will be able to move on from there.

I

> don't feel right about keeping her on an antibiotic with out knowing why.

Who

> knows, maybe there is a way to " fix " it and she won't need meds. So, I am

> still in the waiting process. waiting for someone to give an answer. I'm

very

> grateful to have found this group. Until your child developes a chronic

> illness, there is no way a person can understand what it is like to be

ythe

> parent of that child.

> Take care,

> Traci

>

December 2, 2001

Hi Finicia,

yes, the vote was completed and it was decided for Las Vegas. We are

busy gathering info concerning sites, costs, dates and etc. Hope to

have something concrete to report within the next 10 days. Any

suggestions are appreciated and helpful. The date will most likely be

the first half of October. My thoughts were maybe something on the main

strip since there would be close access to other Vegas attractions.

Costs will probably be less if it is a Tuesday through Thursday

conference as opposed to a weekend. Is that going to be a major problem

for most folks?? Anyway, talking now with convention organizers

concerning what is possible. Now is the time to air suggestions, LOL,

the more the better, Louise.

The Compton's wrote:

>

> Did the vote on the location of the conference ever get arranged?

>

> Finicia

>

December 2, 2001

Did the vote on the location of the conference ever get arranged?

Finicia

February 8, 2002

Bob, Im not too worried about getting a speaker either! I mainly just want

to meet everyone and have a good time!!! I hope I will be able to come as

time gets closer I will no more.

March 8, 2009

That sounds great Tina. You don't know me but I saw you speak and

thought your story was amazing too.

So he's lost his diagnosis then? That's recovered to me - although of

course it doesn't mean you stop helping them.

Sara x

SIMON WOOD wrote:

> Hi Margaret

>

> is close to recovered but to me, he needs to be fully up to age

> appropriate levels with the academics before he is fully recovered.

> His language is great, he is cheeky, has a great sense of humour,

> likes playing football (he is a defender and slide tackles very well),

> tennis and the piano. He has good friends, lies with aplomb, and has

> given up girlfriends until he is 16! He wants to be a scientist when

> he grows up and design robots. He is going to market them with names

> like chefbot, cleanerbot etc and be very rich. Sounds fine to us as

> we would like to be kept parents in our old age.

>

> I know we have been very lucky that has progressed well with the

> programmes we have done with him, we just want that little bit

> more...and ideally in the next 18 months before he goes to secondary

> school!

>

> Tina

>

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

> *From:* mcollins2001uk

> *To:* Autism-Biomedical-Europe

> *Sent:* Sunday, 8 March, 2009 10:58:42 AM

> *Subject:* Re: Conference

>

> Tina,

> I wondered how you and were doing. I was very impressed by your

> resentation at the last Bournemouth conference and wanted to ask you

> whether you think he is recovered from autism? He looked amazing to me.

> Margaret

>

> >

> > Hi All

> >

> > I've just booked to attend on Saturday...got to teach on Friday (sigh)

> >

> > I look forward to catching up with old mates and all the news - I

> feel very out of the loop since becoming a teacher.Ã‚ is doing

> very nicely at present.Ã‚ Came top of the class recently in mental

> maths which is a big thing for us as he has struggled academically.Ã‚

> His literacy is also coming on well as we have now got him an

> excellent English tutor...one of the advantages of being in the

> teaching profession is that you make lots of good contacts...

> >

> > See you soon

> >

> > Tina

> >

>

March 8, 2009