Dale

[Guest guest]

In a message dated 2/15/2005 1:39:37 PM Pacific Standard Time, dale@...

writes:

I HATE waiting -- but am feeling enough better that I really don't want

to know if it's bad news! I know, I know -- I should call her back --

but why?

Dale,

I know these feeling very well, I think we all do!! Meanwhile, I'm glad

you're feeling better. I'm praying about the MRI results!!

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

suspected Velocardiofacial syndrome.

[Guest guest]

In a message dated 2/15/2005 1:39:37 PM Pacific Standard Time, dale@...

writes:

I HATE waiting -- but am feeling enough better that I really don't want

to know if it's bad news! I know, I know -- I should call her back --

but why?

Dale,

I know these feeling very well, I think we all do!! Meanwhile, I'm glad

you're feeling better. I'm praying about the MRI results!!

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

suspected Velocardiofacial syndrome.

[Guest guest]

In a message dated 2/22/2005 4:05:06 PM Central Standard Time, dale@...

writes:

> sometimes a thank you note goes a LONG way to

> getting the service you or your kids need

Oh, definitely. I had a situation where I needed the insurance person (who's

also a receptionist) to back-date a referral for us. There should have been no

problem with it but she held all the cards and did NOT respond well to my

being pushy about it. I got so frustrated I was yelling over the phone (this is

not like me at all, but we were talking about tens of thousands of dollars for

an extensive hospitalization), she was not backing down. Finally I

(legitimately, I was not faking) burst into tears. Just like that, all of a

sudden she

was nicer. And yes, lo and behold, she figured out how to get the backdate done

for us (it was nothing shady, just a mix-up! She shouldn't ever have really

questioned it!!). I learned some people push back when you push them!

I also realized then and there you have to figure out how to " work " some of

these people. Some time after that was having blood cultures and

Rocephin, and we were waiting to see the results of a culture to determine

whether or

not to give more Rocephin. One of the nurses was househunting in our area and

she drove around all day with a syringe of Rocephin in her car... she was

going to come to our house and give that Rocephin if she needed it to save

us a trip to the ER, since their office was going to be closed.

I wanted to get her a gift, because she deserved it. At the same time I knew

I better get something for the insurance person as well... I didn't feel it

would be smart politically to get only the nurse something, even though the

insurance person hadn't really done anything out of the ordinary recently. But

you

just know how people ARE, ya know?

Well, it ended up we treated the insurance person really nicely and really

truly grew to like her and she us. She has a picture of on her fridge at

home! And she cares for , she really does. I remember one time was

in for the third day of Rocephin for some undetermined bacterial something, and

Em was just sad, not crying, just resigned which seems worse somehow. Like

she had given up. The insurance person was practically in tears, she drummed up

a Krispy Kreme and brought it in, it was really sweet.

So of course you should treat everybody nicely that deserves it, but

sometimes you have to treat people nicely that you'd rather not, if they hold

the keys

to some important aspects of your medical care!

(mom to , age 6, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

[Guest guest]

sassykay59@... wrote:

> In a message dated 2/15/2005 1:39:37 PM Pacific Standard Time, dale@...

> writes:

> I HATE waiting -- but am feeling enough better that I really don't want

> to know if it's bad news! I know, I know -- I should call her back --

> but why?

> Dale,

> I know these feeling very well, I think we all do!! Meanwhile, I'm glad

> you're feeling better. I'm praying about the MRI results!!

>

>

>

> Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

> transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

> suspected Velocardiofacial syndrome.

>

>

>

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

My apologies to the group for not deleting the message I was responding

to in my last post. I'm using a new mail program and everything looks

different!

in His service,

dale

[Guest guest]

Hey Dale,

I was just thinking about you today and hoping that things are going better

for you!!!

Pam

[Guest guest]

Hey Dale,

I was just thinking about you today and hoping that things are going better

for you!!!

Pam

[Guest guest]

le wrote:

> Dale,

> How is your daughter doing?

from dale,

Thanks for reminding me that I need to update everyone. Yes. Katy

contacted us a few weeks ago and even though she doesn't say anything

about what she has done, she wants to be on friendly terms with us and

that's a relief to and me. She's made some really big decisions

and now she's living with the consequences. No money, no medical

insurance (and therefore no SCIG), no job, no car, no education, she

doesn't even have a mattress to sleep on - just an empty apartment

shared with a friend -- but we're proud of her for not complaining or

whining. She seems happy with her decision and now she's calling

occasionally when she can borrow a phone that has free minutes. It's

hard on us because we wanted so much more for her -- but she really is

an adult and can make those decisions for herself. And she says she's

happy and doing well.

and I are doing well. I'm busy counseling with abused women and

their families and re-painting some rooms. And he's busy with church

and barbershop quartets! Empty nest is pretty cool!

Oh, I'm still writing introductory Bible studies for people who have

never studied it before. That's at Biblestudy.xidus.net if anyone is

interested.

I'm glad to hear the is doing so well. And while I don't recommend

the winter for a trial off IVIG -- hey, you gotta give it a try and see!

I'm glad that is communicating with his doctors -- that is SOOO

vital as they move away from your care and is the first steps to making

sure they continue treatments. Is he looking at colleges?

I want to clarify to the other moms -- 's diagnosis is not clear --

he has plenty of IgG according to the lab results -- it just doesn't

work to protect him. Therefore, they trial him off of IVIG occasionally

to see whether his body will build antibodies on their own. Many

doctors feel that once you have a clear CVID diagnosis there is no

reason to ever trial off. If your body starts producing IgG -- you will

be able to see the spike in IgG levels in the lab work without trialing

off. And our kids do so well on IVIG -- it's a shame to trial them off

frequently -- although some doctors do that.

In His service,

Dale

[Guest guest]

Dale, here is an e mail sent his doc at Stanford last night. Keep in mind

as you read it that someone very close to him died last week to cancer.........

Dr. Shames,

The avian flu is comin to the west side, and people are gonna die. Since i dont

have a good immune system i probably will too without the IV. So im goin back on

it. I don't think its a good idea to go off right now since I have a chance to

catch it. I want to be safe until the flu passes.

penne

Is he looking at colleges? Yes he is interested in attending Embry Riddle in

Arizona

I want to clarify to the other moms -- 's diagnosis is not clear --

he has plenty of IgG according to the lab results -- it just doesn't

work to protect him. Dale is right, one of the tough things early on was no

clear cut diagnosis. has good IgG #'s but shows no response to the Prevnar

or pneumuccocal vaccines. Thus his diagnosis 8 years ago at Stanford was

Selective antibody deficiency. IVIG every three weeks until this last summer.

What we do know is s quality of life increased tremendously with IVIG.

Before IVIG he had 6 surgerys in 2 years. He still battles with fatigue,

headaches/body aches but that is nothing to what it was like in the

beginning.Therefore, they trial him off of IVIG

occasionally

to see whether his body will build antibodies on their own. We have only trialed

off once in 5th grade. Within 1 month was back in the hospital having

surgery. Now that he is 15 + he wanted to try it again. Many

doctors feel that once you have a clear CVID diagnosis there is no

reason to ever trial off. If your body starts producing IgG -- you

will

be able to see the spike in IgG levels in the lab work without trialing

off. And our kids do so well on IVIG -- it's a shame to trial them off

frequently -- although some doctors do that. s doc at Stanford once told us

would be on IVIG for life. When told him this summer he wanted to

trail off, his doctor said WHY? You are doing so well! needs to see for

himself where his body stands........thus he wanted to try again. That was

until he read about the flu. Now he has emailed his doc ........which we

encouraged to talk to him. We will see his response.

We are thankful that we have had the same immunoligst from day one. He and

have a very good relationship.

Dale thanks for the update on your daughter..........sounds like a prepaid phone

card would make a great christmas gift

le

[Guest guest]

le wrote:

> Dale thanks for the update on your daughter..........sounds like a prepaid

phone card would make a great christmas gift

>

> le

>

>What a great idea -- hopefully, she'll send us an address one of these

days. Then that will be the perfect thing to enclose in a " thinking of

you " card! Thanks!

In His service,

dale

[Guest guest]

Dale:

Thanks for updating us about Katy. I'm sure you've puzzled this out nine ways

from Sunday. But I have a tendency to psycho-analyze situations and it always

makes me feel better.

Sounds like Katy is " taking over " her life. Taking it back from doctors, IVs,

disease, and also her perception of your control over it. Control you had to

have to keep her safe and get her well, as we all have to for our children.

I guess she has to stumble down that road, no matter how hard it is, in order

to feel that freedom. It sounds like you are keeping the bridge open for her

to come back down your road, and I admire you for that. Sometimes when other

people are being stubborn, our tendency is to be stubborn back. Families have

been estranged for decades over that. You are very courageous not to fall into

that trap!

I will be praying that she finds what she needs quickly and your roads can

join up again.

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

osdbmom wrote:

> HOw old is Katy now? HOw is she doing?

>

>

Katy is 21. She married this summer (eloped!) and moved to Florida

instead of finishing her senior year in college. She decided to trial

off Sub-Q (no insurance) and her last dose was August. She says she's

doing great and thinks that she's well. She's had one nasty cold/flu

thing -- missed 3 days of work -- and got over it. So..... we are

hopeful, but cautious at this point. We have heard of at least 2 other

people who recovered in their early 20's. So.... there's always hope.

In His service,

Dale

[Guest guest]

In a message dated 1/26/2006 9:12:49 AM Pacific Standard Time, dale@...

writes:

So..... we are

hopeful, but cautious at this point. We have heard of at least 2 other

people who recovered in their early 20's. So.... there's always hope.

Hi Dale,

's Immuno says the same thing. In fact, he says that a paper was

published stating that CVID can last anywhere from two years to a lifetime.

Each

person is different--but some patients actually do recover.

I was not really believing him (he's not my favorite Doc) until you started

telling us how Katy was doing!! There is always hope!

Sandi, Mom to , age 12, CVID

[Guest guest]

About spontaneous recoveries...

I hesitate writing this (not normally superstitious, but...), but even though

still shows terrible responses to Prevnar and no response to Menactra,

this school year so far she has been as healthy as most children (with no

treatment ever), or more so.

She's had numerous colds, none big, one bout of 24 days of coughing which

turned out to be a silent sinus infection and 1 course of abx cured it. She's

had

new vague fatigue stuff, but that's IT. I am sitting here on cloud

nine...secretly waiting for the other shoe to drop! Hee hee!

I'm fully convinced the school WON'T renew our 504 Plan, as I had to fight

like a tiger for it the past two years and that was with 25 absences a year to

show there was something going on. She's only been absent maybe 4 days this

whole school year so far!!!!

The only difference I can think of for this turnaround is prayer. I was

" talking " here with Dale this past Spring about how I've always prayed for acute

illnesses to work out okay, and we received seriously nothing short of a miracle

when had a deadly illness as a baby and recovered completely even

though it looked very, very bad (coma and septic shock before ever making it to

the

hospital -- that usually has a bad prognosis). I posted here that I was

" afraid " to pray for normality, that that would be being greedy since we've

already

been so very blessed. Dale said you can pray for anything, so I did. That's

the only difference I can think of for this turnaround! Thank you again, God!!

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 1/27/2006 3:28:25 PM Central Standard Time,

fladfam@... writes:

> What accommodations are currently being made for at school? Is it

> possible that is helping to keep her healthy and limiting exposure at

> school? Like bottled water? Hand gel? I'd bet that it's contributing!

>

> Are you planning to fight to keep those in place?

>

Dayna:

That's exactly my thought -- the REASON she's doing so well (I won't mention

prayer to the school, ) is probably because of the services: if it ain't

broke, let's not fix it! I'm thinking they will probably agree to do everything

the same but won't want to put it in writing. That's what they wanted to do

last year. They said they would do everything, but we didn't need to make it a

formal plan. Someone on this group wisely pointed out that if they were really

going to DO it, why wouldn't they want to put it in writing? And they aren't

some fancy thing, these plans, it's just a hand-written thing they do while we

have the meeting, so it doesn't save them any work, just the fact of it being

" formal " and something I can use against them.

The plan included:

-- letter home at beg. of year saying a student in class has " immature immune

response " (this is how the nurse likes to word it), so please follow rules on

keeping sick kids home

-- nurse cleans off 's desk daily

-- she can wash hands any time and keeps a bottle of Purell in her desk

-- we provided giant 2 liter pump of Purell for classroom use, though nobody

is required to use it, it's just there if they want to

-- nurse " in-serviced " all associated staff to inform them of 's

situation

-- has her own set of art supplies in art class instead of sharing community

set

-- nurse calls me right away if any suspected infectious disease in classroom

The reasons I think has been so healthy this year are:

#1 Prayer -- she seems to catch less stuff in general now

#2 It has been a noticeably healthier year for everybody this year in our

town/neighborhood

#3 Having her own desk (all 1st graders do) instead of community K tables

#4 Having her own supplies in art class and her desk (in K they shared

everything)

#5 She's taking more responsibility now, is careful about touching bathroom

door knobs, etc., getting very good about washing hands and avoiding sickies

I'm gonna fight for the 504 again, but I'm not feeling too confident due to

the lack of absences. I'll use the argument that I think the great plan worked

very well, so why mess with it. I'll also throw in her other odd thing that

might help me get a plan -- when she gets a head injury she tends to get " pallid

breath holding spells " , which is where they are crying so hard they lose

oxygen from not taking a breath, turn pale and pass out. Thing is, they twitch

some during this and it looks very much like a seizure. It's not. She averages

about two of these spells a year now, used to be one a year. They are harmless

but it scared the bejeebers out of the teachers when they saw it. She had one

this fall at school (first time she had one at school) and I'm lucky they

didn't call 911! She's a wild girl when she plays and does tend to get hurt. I'm

the same way, it's an odd combination of being graceful and clumsy at the same

time. Like I can still do some nice ballet moves (though they are creakier

sounding now!), but I broke my little toe walking down my hallway.

I'm not looking forward to it -- I'll probably try to postpone it as long as

possible to see how Spring goes, Spring is always worse for her and if things

are going to turn south, that's when it will happen.

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

- I must also reply about praying. Our son Bradley (IGA DEF) is doing

awesome this year. He has barely been sick except for one bout of croup and a

cold. He is even going to a small preschool setting for his speech therapy. I

use to Lysol and Clorox everything and I am not even doing that as much. The

only thing I am doing is praying .....every single day. God does listen and He

loves us all. We must never give up on that.

So glad to hear that your daughter is feeling better.

I pray for all the children and their families on this site.

Amy

Re: Dale

About spontaneous recoveries...

I hesitate writing this (not normally superstitious, but...), but even though

still shows terrible responses to Prevnar and no response to Menactra,

this school year so far she has been as healthy as most children (with no

treatment ever), or more so.

She's had numerous colds, none big, one bout of 24 days of coughing which

turned out to be a silent sinus infection and 1 course of abx cured it. She's

had

new vague fatigue stuff, but that's IT. I am sitting here on cloud

nine...secretly waiting for the other shoe to drop! Hee hee!

I'm fully convinced the school WON'T renew our 504 Plan, as I had to fight

like a tiger for it the past two years and that was with 25 absences a year to

show there was something going on. She's only been absent maybe 4 days this

whole school year so far!!!!

The only difference I can think of for this turnaround is prayer. I was

" talking " here with Dale this past Spring about how I've always prayed for

acute

illnesses to work out okay, and we received seriously nothing short of a

miracle

when had a deadly illness as a baby and recovered completely even

though it looked very, very bad (coma and septic shock before ever making it

to the

hospital -- that usually has a bad prognosis). I posted here that I was

" afraid " to pray for normality, that that would be being greedy since we've

already

been so very blessed. Dale said you can pray for anything, so I did. That's

the only difference I can think of for this turnaround! Thank you again, God!!

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very

healthy!)

[Guest guest]

-

What accommodations are currently being made for at school? Is it

possible that is helping to keep her healthy and limiting exposure at

school? Like bottled water? Hand gel? I'd bet that it's contributing!

Are you planning to fight to keep those in place?

Dayna

Re: Dale

About spontaneous recoveries...

I hesitate writing this (not normally superstitious, but...), but even

though

still shows terrible responses to Prevnar and no response to

Menactra,

this school year so far she has been as healthy as most children (with

no

treatment ever), or more so.

She's had numerous colds, none big, one bout of 24 days of coughing

which

turned out to be a silent sinus infection and 1 course of abx cured it.

She's had

new vague fatigue stuff, but that's IT. I am sitting here on cloud

nine...secretly waiting for the other shoe to drop! Hee hee!

I'm fully convinced the school WON'T renew our 504 Plan, as I had to

fight

like a tiger for it the past two years and that was with 25 absences a

year to

show there was something going on. She's only been absent maybe 4 days

this

whole school year so far!!!!

The only difference I can think of for this turnaround is prayer. I was

" talking " here with Dale this past Spring about how I've always prayed

for acute

illnesses to work out okay, and we received seriously nothing short of a

miracle

when had a deadly illness as a baby and recovered completely even

though it looked very, very bad (coma and septic shock before ever

making it to the

hospital -- that usually has a bad prognosis). I posted here that I was

" afraid " to pray for normality, that that would be being greedy since

we've already

been so very blessed. Dale said you can pray for anything, so I did.

That's

the only difference I can think of for this turnaround! Thank you again,

God!!

(mom to , age 6-1/2, dairy intolerant-related GERD --

currently

has polysaccharide antibody def, previously had transient IgG, IgA,

t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very

healthy!)

[Guest guest]

osdbmom wrote:

> Now you have me all freaked out!!LOL Is this something that should NOT

> be done with a kid who might have an immune problem? Are there others

> here who had a good experience? Did her ears ever heal? Was this due

> to her immune deficiency that this happened,

I don't mean to freak you out!!!! But I do want you to consider

ANYTHING that opens the body to germs.

Katy had her ears pierced, I think it was for her 8th or 9th birthday

(old age is setting in!). They never healed. They continued to ooze

golden yellow pus and swelled so large that we had to buy special extra

long posts to try to save the piercing. After literally months of doing

everything everyone recommended -- we took her to her pediatrician.

Duh! But you see at that time we didn't know that Katy was immune

deficient. All we knew is that she had a terrible rash all under her

gymnastic leotard (we were told allergies to latex possibly or allergy

to spandex, etc. -- not to worry, etc. no big deal). She was not

showing any other signs of infection or concern except low growth rate.

She was a dynamo of energy, so no one was concerned. But.... when

we took her in and the doctor saw her ears, she immediately ordered

antibiotics and said it was probably a staph infection. After another 2

months, we were sent to a dermatologist who surgically removed a

hardened cyst full of pus in both ears that continued to ooze. Sorry

to be so graphic. He made an incision around that cyst and removed it

-- so that she had a much LARGER hole to have to heal now on both ears.

One ear healed and the other ear refused. So, a couple of months

later, we had that ear surgically opened again. This time he used an

instrument that " punched " a hole about the size of a pencil eraser. He

said he needed to get away from the infected part and try to start

fresh. That one also finally healed. Both ears healed with only small

scars.

Was it caused by immune deficiency? Yes. Can it happen to a person

without immune deficiency -- yes, but only rarely. In a person without

the ability to fight germs -- any open scratch is an infection waiting

to happen -- add hair and little fingers told to constantly rotate the

posts (without washing each time) -- and you've got trouble.

A few years ago, Katy tried an eyebrow pierce and after a week of oozing

-- decided it wasn't worth it and was able with topical antibiotic to

get it healed without incident.

I don't recommend piercing anything without doctor superivision. And

then I still don't recommend it. Your doctor might feel comfortable

putting her on antibiotics before, during and after the piercing to try

to protect her. It's something you would have to work out -- but don't

go into in blind like I did!

In His service,

Dale

[Guest guest]

Valarie:

My experience might not be quite pertinent, but then again, maybe it will.

I have not been dx with a PID, but I have only had my IgG, IgM, IgA checked.

Never had abs checked. But I have a colorful infection history, enough that

when was first being Dx'd, the immuno felt I could possibly have had or

have some type of PID.

That said, I always had problems with my pierced ears. Got them

professionally pierced sometime between age 8 and age 14 (can't remember

exactly) and they

were forever infected. My mom was always lancing this or " doctoring " that --

dental floss and abx cream running through the holes, etc. I don't even bother

anymore -- maybe wear earrings once a year, and I still have little lumps in

each hole that if I massage and squeeze can come up with something icky (sorry

so gross!).

I have told we would not be piercing her ears for many years if at all,

because of the immune situation, told her it would be no fun to have them

infected all the time and she understood and agreed that didn't sound fun.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

I erased the message before I could reply -- does it matter that he's

not into puberty? I have NO idea. But, it would certainly be worth

asking the immunologist. Like, since he has not gone through puberty,

wouldn't it make more sense to wait until next summer to do this??????

Personally, I don't think it makes sense at any point, but I just tend

to lean that way since Dr. Lederman said that he didn't believe in

trialing off -- ever -- if the diagnosis is solid. I know that some

doctors insist that it's necessary every single year -- and that's

utterly ridiculous -- but..... who am I to say.......

In His service,

dale

[Guest guest]

In a message dated 4/2/2006 11:54:31 PM Pacific Daylight Time, dale@...

writes:

But, it would certainly be worth

asking the immunologist. Like, since he has not gone through puberty,

wouldn't it make more sense to wait until next summer to do this??????

__________________________________________________________________________

Hi Dale,

You read my mind! I have been thinking all along that waiting until next

summer would make more sense. I think I will place a call to the IDF before

arguing with the Immuno some more. But...if I bring it up, he may be more

amenable since I am agreeing to the trailing off, but next year instead. If I

HAVE

to!!

Sandi, Mom to --age 13--CVID

[Guest guest]

Rogena -- Found it!!! Hope it helps!

S0 -- this is a repeat!

Unfortunately, I have been told that Cole is not a

> candidate for it because IgA is untreatable via the IVG.

Welcome to all the new people in the group. A lot of times I post an

answer in response to one particular question -- but the beauty of this

group is that we are all listening and learning together. So, don't

ever think that you shouldn't read someone else's reply. And please ask

questions if there's anything that you don't understand.

Rogena -- welcome to the group. You are exactly right -- IVIG would not

treat for low IgA. But, in your earlier post you mentioned that he is

missing one subclass of IgG and that could be a problem and THAT is

treatable.

IVIG or SCIG only replaces the IgG. If your child is missing one of the

subclasses of IgG, or it is low, and that is affecting their health,

then IVIG or SCIG is the recommended treatment.

This is from a National Survey of Patients and Specialists done by IDF

in May 1999. It shows the change before and after IVIG.

Sinusitis 68% before 65% after

Sepsis 5% before 4% after

Pneumonia 51% before 27% after

Meningitis 4% before 2% after

Malabsorption 9% before 8% after

Ear Infection 51% before 27% after

Diarrhea 30% before 24% after

Cancer 2% before 2% after

Bronchitis 55% before 40% after

Only hepatitis and arthritis increased slightly because yes, there was a

strain of hepatitis that was totally unknown until it was discovered and

several patients received contaminated blood because it was an unknown

virus. (We believe that there is a much greater chance that this will

not happen again because of the improved purification of IVIG). And

arthritis increased because it is a disease related to age -- so as

patients aged, they reported more arthritis consistent with the general

population so not affected by IVIG.

So, you can see why we highly recommend IVIG if it is necessary. That's

because it is effective!

Many people with low IgA are not clinical ill -- some are. No one knows

yet what causes that. But a few years ago when the IgG subclasses were

discovered they found that most (but not all) people who are clinically

ill with IgA deficiency -- also have a subclass of IgG missing. When

they started treating those people with IVIG, they discovered that it

greatly lowered their incidence of infection even though they continued

to be low in IgA.

IgA deficient people really have no treatment option if their IgG

subclasses are good and they are building the proper antibodies. I

would think that the next test that they should be looking at for your

son is whether or not he builds response to vaccinations. Have they

done that?

I definitely recommend that you contact the Immune Deficiency Foundation

at 1-800-296-4433 and ask them for a recommendation to a Clinical

Immunologist who is up on the latest research. I don't know where you

are located, but if you want to give a general area, there might be

someone on this list that could tell you of a good immunologist in your

area. (While you are on the phone with IDF also order their Patient and

Family Handbook and get on their mailing list to receive information).

I am concerned about your not getting in to see doctors who really know

about Primary Immune Deficiency. The research on this is changing daily

and if your doctor is not familiar with the newest research, you may not

receive the best of care possible for your child. Now, that said, if

you have a doctor that you really trust and he/she is willing to learn,

then they can contact IDF and get their material for physicians and

their newsletter so that they can learn about PID. There is also a free

Consulting Immunologist program that your doctor can call for a free

consultation with a leading Immunologist specializing in PID. That

number for your doctor (they won't talk to moms!) is 1-877-666-0866

Sad but true: When the doctors told me 9 years ago that my daughter had

CVID, we had no idea what that was and where it would lead us. My

husband and I rushed to Stanford's medical library to research and found

that she had a 2 year life expectancy. That there was a new treatment

called gammaglobulin but it wasn't recommended because it was a

" experimental " treatment. The only problem was: THAT WAS WRONG! That

information was 10 years old. It takes FOREVER for new research to make

it into medical textbooks. We didn't know that -- and we worried

needlessly about so many things. When we finally saw an Immunologist

who knew what she was talking about we had a hard time believing her --

but through the years we've realized that old information can kill you!

That's the primary reason this group exists. Ursula asked me if I

wanted to be a part of something that would give newly diagnosed

patients (Moms and Dads) a place to ask question and I jumped at the

opportunity. I don't want you to be given " old " or " bad " information.

The research is changing daily. Make sure that you get to a doctor who

has the most recent information.

Hope that helps, and welcome to all the newcomers here.

So, ask questions and learn all you can to fight for your child. And

yes, that's a Mamma's job. I kept fighting until I found a pediatrician

I could respect and trust. She learned everything she could about CVID

and it really took the stress off of me. Keep looking for a doctor who

will listen and really hear you.

Hope that helps someone!

In His service,

dale

[Guest guest]

In a message dated 4/8/2006 8:23:18 AM Central Standard Time,

mrlbrinks@... writes:

> He orignally said Cole was not a candidate

> for IVIG because Cole's main def is IgA. However, with the

> breathrough infections he has had this winter even while on the ABX, I

> am wondering if he would do better if we try to treat the IgG subclass

> def he has.

>

>

Rogena:

I feel like I'm butting in because I'm hopelessly behind on mail and missed

original posts. But has Cole's pneumo antibody response been checked? IgA def

often goes hand-in-hand with subclass defs and polysaccharide ab defects. That

would be his response to Prevnar, most likely.

Just a thought --

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

THANKS for the repeat on the info!!!!

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def, GERD,

possible Celiac)

[Guest guest]

" I'm upset that in American we still haven't got the word out on how to treat

PID. And because of it, patients are still ending up with damage that possibly

could be avoided. It made me so sad when I learned that my daughter had been

put through such pain for no reason... "

Dale -

I am so glad to know that you will be going to the IDF Leadership Conference.

There is still a gap between what docs know and what is being done for rapid

diagnosis and treatment of PIDs. Thanks so much for creating a bridge between

docs, patients, and research. If I knew about this group in 2001, we could have

avoided much needless suffering by my daughter and psychological trauma for us

all. There is nothing worse than seeing your child in pain and not being able

to get proper help. We are so lucky to have found good immuno in time -- and

this group!

I would love to hear how the conference goes. We might just cross paths -- as

we are in LA. = )

Most sincere thanks,

mom to CVIDer