Ursula

[Guest guest]

Autumn,

I'm so sorry you're having such a difficult time. must feel terrible

and without the docs being able to find some answers . . . ? I know (as

does everyone else, I'm sure) what it's like to ask for answers & not get

them. Hopefully they can find some things that will work for him quickly.

I think in Mark's situation, you did emotionally what every mother would

have done for their child. You avoided another traumatic situation, even if

it meant not following drs orders. Now that you've faced that issue with

the dr, I'm sure you'll come to some compromises with them to get the

information they & you need to help Mark over this illness. Let us know how

things are going.

We all need to vent some times. You're in my prayers--along with the boys.

God bless you.

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

chronic sinusitis, and allergies), and Duncan Avery due 5/17/01

[Guest guest]

Autumn - sorry for the confusion, I was wondering if you knew of any journal

references for IgA subclasses. Anything dealing with the clinical

significance or anything else relating to human infections

thanks. hope s feeling better and glad to hear that Mark's on the mend.

Is the mycoplasmal test an IgG or IgM antibody test? Can they do it by PCR?

I'm curious how its tested for with patients on IVIG. Since Dr. F has said

Macey has had it in the past I would like to find a way to confirm it from

now on. If its mycoplasmal pneumonia can that be confirmed by a blood test

or would we need a sputum sample?

Mycoplasm is something we've dealt with alot in the past so I'm curious at

an actual test.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney

reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

[Guest guest]

Autumn - sorry for the confusion, I was wondering if you knew of any journal

references for IgA subclasses. Anything dealing with the clinical

significance or anything else relating to human infections

thanks. hope s feeling better and glad to hear that Mark's on the mend.

Is the mycoplasmal test an IgG or IgM antibody test? Can they do it by PCR?

I'm curious how its tested for with patients on IVIG. Since Dr. F has said

Macey has had it in the past I would like to find a way to confirm it from

now on. If its mycoplasmal pneumonia can that be confirmed by a blood test

or would we need a sputum sample?

Mycoplasm is something we've dealt with alot in the past so I'm curious at

an actual test.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney

reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

[Guest guest]

In a message dated 4/28/01 1:29:06 PM Pacific Daylight Time, uahollem@...

writes:

> le - hope things went well this weekend and had an amazing time

Ursula,

Thanks for asking. did a fabulous job! Yes Im a proud mom but he truly

was incredible. He looked and sounded like he was meant to speak in front of

5,000 people! He received a standing obation. Several people came up to him

afterwards to say how impressed they were. One lady has contacted us and

will be doing a clown show for the kids at LPCH when is there for

treatments.

The highlight for him was when we arrived at the convention we went to the

exhibits and trade show first. He had a badge on that recognized him as a

winner. Some folks came up to us and said they had just read his peice and

wanted him to meet someone. We followed them and were brought to the front

of a massive line to meet Steve Young!...........Last year Steve Young

donated $ to LPCH for the Forever Young Playroom and was there for the

opening of it. was there but having treatments the doc promised he

would be done in time to see Steve Young. Well the doctor forgot! One

disappointed boy! .........Here is a year later being honored for

writting about his treatments and who does he get to meet and talk to!!!!!

Steve Young..... told him the story of how he missed him last year and

Steve Young asked how he was doing. It brought this mom to

tears.......Knowing God had his hand in this!

I know God used this weekend to touch many lives! He will be reading

his essay next Thursday for 300 people at our local City PTA Dinner. They

gave us several programs with the winners essays in them, if you want one let

me know.

HAPPY BIRTHDAY MACEY!!!

le

11 Selective Antibody Def., Syringomyelia, IVIG every 3 weeks

[Guest guest]

- how long has been on allergy shots? I'm curious why they would

test every 6 months to a year when I was told it would take up to 3

yrs of shots before she would be better with each allergen and possibly show

a negative reaction.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney

reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

[Guest guest]

- how long has been on allergy shots? I'm curious why they would

test every 6 months to a year when I was told it would take up to 3

yrs of shots before she would be better with each allergen and possibly show

a negative reaction.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney

reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

[Guest guest]

usually has around 70 intradermals in his upper left

arm. Scratch tests did not show the whole story on him.

His reactions with the intradermals have been quite

dramatic - he is severely allergic to nearly everything

he is tested for, so he experiences a lot of discomfort

and swelling while his brother and I do not. His reactions

end up looking like large bee stings/mosquito bites and

probably feel about the same. His whole arm tends to swell

and redden immediately. Emla at least blocks some of the

discomfort for him. Maybe there is something else like

Emla that Macey can use since Emla bothers her?

is currently getting 8 injections a week, they don't

bother him at all. The testing once every six months to

a year drives him nuts. His brother hates the four shots

he gets each week, but the testing, back or arm, has never

bothered him in the least.

Maybe Macey won't have any problems at all.

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

Conatser

conatser@...

[Guest guest]

usually has around 70 intradermals in his upper left

arm. Scratch tests did not show the whole story on him.

His reactions with the intradermals have been quite

dramatic - he is severely allergic to nearly everything

he is tested for, so he experiences a lot of discomfort

and swelling while his brother and I do not. His reactions

end up looking like large bee stings/mosquito bites and

probably feel about the same. His whole arm tends to swell

and redden immediately. Emla at least blocks some of the

discomfort for him. Maybe there is something else like

Emla that Macey can use since Emla bothers her?

is currently getting 8 injections a week, they don't

bother him at all. The testing once every six months to

a year drives him nuts. His brother hates the four shots

he gets each week, but the testing, back or arm, has never

bothered him in the least.

Maybe Macey won't have any problems at all.

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

Conatser

conatser@...

[Guest guest]

> - how long has been on allergy shots? I'm curious why they would

> test every 6 months to a year when I was told it would take up to 3

> yrs of shots before she would be better with each allergen and possibly show

> a negative reaction.

He was on three years as a young child and we (the

family) decided to stop - it had turned into way

too much trauma and no benefit at that time.

He has been on now for 4 years. He still shows the

same level of reactions to the tests, but healthwise he

seems much better. No more major asthma attacks,

uri's are much easier to control. The doctor's theory

is that if we can control the things that aggrevate

's respiratory track, then his instance of infection

will drop. It seems to be working pretty well.

His doctor is extremely aggressive in his treatment,

and it has worked well for our son. Couldn't tell you

exactly why he tests so often, but I won't complain

since he has helped so much.

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

Conatser

conatser@...

[Guest guest]

> - how long has been on allergy shots? I'm curious why they would

> test every 6 months to a year when I was told it would take up to 3

> yrs of shots before she would be better with each allergen and possibly show

> a negative reaction.

He was on three years as a young child and we (the

family) decided to stop - it had turned into way

too much trauma and no benefit at that time.

He has been on now for 4 years. He still shows the

same level of reactions to the tests, but healthwise he

seems much better. No more major asthma attacks,

uri's are much easier to control. The doctor's theory

is that if we can control the things that aggrevate

's respiratory track, then his instance of infection

will drop. It seems to be working pretty well.

His doctor is extremely aggressive in his treatment,

and it has worked well for our son. Couldn't tell you

exactly why he tests so often, but I won't complain

since he has helped so much.

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

Conatser

conatser@...

[Guest guest]

Hi Ursula --

I need a new ISP (AOL's had their chance to fix their probs and I'm sick of

it), but that's not going to happen right away as I'll have to research it.

But sometime in the next week I'd like to rejoin the group as a totally new

name, as this name for some reason cannot get into the archives, even though

I've contacted Yahoo about it (they never responded). Or do you have another

suggestion? When I try to get in to see all the mail I'm missing, it says I'm

not a member. But when I try to rejoin it says I'm already a member! Cool!

Thanks--

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

[Guest guest]

it could be your using the wrong password. In order to get in it would have

to be right or you wouldn't be considered a member. When you tried to

rejoin it recognized the email address and didn't care about the password.

So it sounds like you have your user name right but maybe the wrong

password.

Good luck and I've had good success with AT & T and MSN ISP's. (This is not

an endorsement by the moderator

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney

reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

[Guest guest]

it could be your using the wrong password. In order to get in it would have

to be right or you wouldn't be considered a member. When you tried to

rejoin it recognized the email address and didn't care about the password.

So it sounds like you have your user name right but maybe the wrong

password.

Good luck and I've had good success with AT & T and MSN ISP's. (This is not

an endorsement by the moderator

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney

reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

[Guest guest]

That's a good thought, but I had them send me my password and everything,

just to make sure. ??????

Can you tell me what the monthly fees are for AT & T and MSN for unlimited

access?

Thanks!

Oh, here's a fun one -- we're leaving this afternoon for Lake Geneva,

Wisconsin, and feels warm. She does not have a fever, but she's a

degree higher than normal for her for this time of day (she's usually 98.9

rectal in the morning). ????? We're still planning on going, will wait till

last minute to change if totally necessary -- NO GUTS, NO GLORY, right???

It's only about an hour away so it's not like we can't just come home if we

have to.

Wish us luck!

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

[Guest guest]

That's a good thought, but I had them send me my password and everything,

just to make sure. ??????

Can you tell me what the monthly fees are for AT & T and MSN for unlimited

access?

Thanks!

Oh, here's a fun one -- we're leaving this afternoon for Lake Geneva,

Wisconsin, and feels warm. She does not have a fever, but she's a

degree higher than normal for her for this time of day (she's usually 98.9

rectal in the morning). ????? We're still planning on going, will wait till

last minute to change if totally necessary -- NO GUTS, NO GLORY, right???

It's only about an hour away so it's not like we can't just come home if we

have to.

Wish us luck!

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

[Guest guest]

That's a good thought, but I had them send me my password and everything,

just to make sure. ??????

Can you tell me what the monthly fees are for AT & T and MSN for unlimited

access?

Thanks!

Oh, here's a fun one -- we're leaving this afternoon for Lake Geneva,

Wisconsin, and feels warm. She does not have a fever, but she's a

degree higher than normal for her for this time of day (she's usually 98.9

rectal in the morning). ????? We're still planning on going, will wait till

last minute to change if totally necessary -- NO GUTS, NO GLORY, right???

It's only about an hour away so it's not like we can't just come home if we

have to.

Wish us luck!

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

[Guest guest]

- AT & T is 22.00 unlimited. they have a special 4.95$ for 150 hours.

MSN came free for a year with our new Dell computer but I've never gotten a

busy signal and it comes with several email addresses and a neat browser. I

think it runs about the same rate as AT & T though.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney

reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

[Guest guest]

- AT & T is 22.00 unlimited. they have a special 4.95$ for 150 hours.

MSN came free for a year with our new Dell computer but I've never gotten a

busy signal and it comes with several email addresses and a neat browser. I

think it runs about the same rate as AT & T though.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney

reflux, Sensory Integration Disorder, Diabetes Insipidus)

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

[Guest guest]

Ursula: I, too, am sorry I won't be able to meet you. But we all know health

is #1, and MOMMY'S health is most important of all, because the Mommy has to

take care of everybody else!! So take it easy and take care of yourself.

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

[Guest guest]

Ursula: I, too, am sorry I won't be able to meet you. But we all know health

is #1, and MOMMY'S health is most important of all, because the Mommy has to

take care of everybody else!! So take it easy and take care of yourself.

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

[Guest guest]

Hi!

Sarasota is on the west coast of Fla. Right on the gulf. My mom moved there

4 years ago, and each time we have visited, I fell in love w/ it even more!

We are taking the chance and moving our family. Big risk, but I'm hoping it

will be a better enviroment for my girls.

Traci

[Guest guest]

Hi!

Sarasota is on the west coast of Fla. Right on the gulf. My mom moved there

4 years ago, and each time we have visited, I fell in love w/ it even more!

We are taking the chance and moving our family. Big risk, but I'm hoping it

will be a better enviroment for my girls.

Traci

[Guest guest]

Traci - We go to Destin every year, sometimes twice a year. Usually in

March and again July 4th week. The Gulf coast is a wonderful place. Good

luck

Ursula Holleman uahollem@...

and Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

[Guest guest]

Traci - We go to Destin every year, sometimes twice a year. Usually in

March and again July 4th week. The Gulf coast is a wonderful place. Good

luck

Ursula Holleman uahollem@...

and Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

[Guest guest]

Please send it to all of us if you do not mind. Lucas is going into

kindergarten and I am getting nowhere with the schools. I have all the regs

but do not know if I have the energy to fight another battle. BARBIE Lucas 5

dysgamm, hypogamm, IVIG, selective antx def.