Results

[Guest guest]

Valarie,

Do you have the pneumococal tests back yet? Remember that even if the IG's

are normal, they can still have an antibody deficiency. And even when the

IG's are low, they can still make antibodies. Sorry you are having to wait

so long!

By the way, our immuno doesn't want us to reimmunize the kids for the things

they don't have antibodies to (Hib, Hep B, mumps, etc), however our

infectious disease guy wants us to, did you ask about reimmunizing your

kids? I'm not sure what to do about it.

Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD,

Hashimoto's disease, hypogammaglobulinemia, complement deficiency, antibody

deficiency, NK cell defect, and resolved adrenal insufficiency),

Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, asthma and mild hearing loss/unaided),

and Kelsey - (9 going on 19!)

Please visit us at www.caringbridge.org/in/connersmith

[Guest guest]

If a patient is on IVIG then you would usually use immunizations to test

response levels. The patient would need to be off infusions for at least 3

months before the tests would be accurate. While on IVIG the only shot most

patients get is the flu shot. There are too many strains to catch in IVIG

and each year they are different.

Regarding the revaccination after a failed response. Macey did not

initially respond to her MMR or her HiB but when we revaccinated she did.

She also did not respond initially to her Tetanus shot and even after we

reboostered she didn't. So we've not tried the tetanus again. Thankfully

she gets that in her subq treatment. When we decide to stop infusion again

to test her system we will try the Tetanus one more time to see if might

finally take.

Ursula - mom to Macey (10,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

[Guest guest]

Pam, you are right about kids on IVIG, they don't likely need

vaccinations, the exception being the flu vaccine. They should

still get that in hopes that they will have some type of protective

response since it won't likely be covered in IVIG. In our other

kids (not Conner), they had mixed responses to vaccines and seem to

have lost antibodies over time. We are getting differing opinions

on vaccinating them again since they are not on IVIG and are having

some difficulty making certain types of antibodies. I hope that

makes sense.

>

> I thought that any vaccinations were of no use if your child

doesn't make

> antibodies?! We were told that Tim would never need any

immunizations because

> he would get the coverage he needed via ivig. However, we do get

a yearly

> flu shot on the off chance it might help.

>

> Regards,

>

> Pam

> (Tim - age 15 CVID/ITP/EVANS/ALLERGIES & AJ - age 22 ALLERGIES)

>

>

>

[Guest guest]

Valarie:

's IgA is normal, IgM is normal. IgG is now in the low 600s, but she

doesn't make normal antibodies to polysaccharide-encapsulated bacteria

(Prevnar/pneumococcal bacteria, Menactra/meningococcal bacteria) and what abs

she DOES

make fall off over the course of a year.

Our ID/Immuno basically booted us out when her IgG came up to 500 (but she's

an idiot) --

But... what I'm trying to say is if you only checked 's Igs right now,

you'd say she was fine, despite all the ear, sinus, lung infections (plus a lot

of gastro and other viruses). Gotta check those pneumo titers.

(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]

In a message dated 2/23/2006 2:15:41 PM Central Standard Time,

tripletsand1@... writes:

> By the way, our immuno doesn't want us to reimmunize the kids for the

> things

> they don't have antibodies to (Hib, Hep B, mumps, etc), however our

> infectious disease guy wants us to

:

Our experience was that we re-immunized the things that were low: HiB, polio

and Prevnar. HiB came up but went down again after a couple years, so we

re-boosted again. It has held. Polio we re-immunized TWICE (only the killed

injected version, not the live oral version) and the #s came up finally, and

have

stayed up.

So in our case, I was glad we re-immunized. And we keep hoping at some point

the pneumo abs will finally kick in? Who knows, worth a try if the vaccine is

safe.

(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]

In a message dated 2/23/2006 8:57:40 PM Central Standard Time,

osdbmom@... writes:

> ask if we should re-vac donovan for the

> measles

The MMR, Measles, Mumps, Rubella shot is a live vaccine and if you have any

suspicion of a PID, you can't do live vaccines.

If you haven't done any pneumo vaccines yet (Prevnar or Pneumovax), that's

actually sort of good, because you can do a better pre- and post- test. You

check the antibodies (pre-vaccine), then get the vaccine, then check the

post-vaccine response. Gives you a more precise idea of how well they respond

directly

to the vaccine.

Even the pre- #s are helpful... in 's case, the pre-#s were telling

because she had almost no antibodies even though she had had numerous

pneumococcal

infections including pneumococcal meningitis.

I thought it was very sloppy that from two years old on, our ID/Immuno would

use the previous year's #s as the pre-vaccine result. Very sloppy considering

drops her abs over the course of a year.

(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]

While many things can be genetic/familial.. there can be spontaneous

mutations that show up. Assuming the cause is genetic. They have shown

this to be the case with many genetic diseases. There are rare instances

where there is no family history and up pops a child with X disease.. Of

course with you having 3, it would have had to happen 3 times... but there

very well could be something autosomal recessive-meaning one gene from you

and one gene from hubby that each of the 3 kids have gotten - that together

makes for a PID. Just like with my boys-no one in our family has SDS or

anything like it.. In order for our kids to pop up with it, hubby and I

each had the recessive trait and passed it on to 2 of our children. 25%

chance that each pregnancy will produce a child with SDS, 75% chance the

child will not have it.. Our oldest could be a carrier...

Not to bore you with all of this. I hope you can find answers.

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

osdbmom

Sent: Wednesday, April 12, 2006 12:29 PM

Subject: results

Ok, since the inf dis. drs were pushing to try to figure out how I

ended up with 3 CVID'ers, I asked my pulmo this morning when I went in

for my xolair shot if I could have copies of everything that has been

run, and that way at the next inf dis appt, I can just show them and

have it in the kids files. I think, from what I read, my numbers look

ok---as far as IG's go, but for my IGE, which I already knew was quite

high. It doesnt look like anything is def, and he also did lots of

complements and such,and according to the labs, those look ok too.

I am wondering if I can force my DH into testing. And for those

others, well, I know figured out where theirs came from, but

for those with multiple kids who have a PID of some kind, I wonder how

many have found that a parent has it also? It just seems so odd that

none of our other family, that we know of, has anything like this, and

then my 3 kids pop out with it, it would seem like it has to come from

somewhere, you know? or am I just beating the idea to death?

valarie

_____

[Guest guest]

ok my results from friday 5 panel all is in normal range cept ast 72 two momths ago 88 and alt was 212 now 129 all other levels are normal

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

the Dreamer wrote: " ... <snip> ... By the way, I've taken the

official Myers Briggs measuring instrument twice and was ENFP,

borderline INFP, both times. So sorry to ruin your theory. But from

what I have seen, I am an oddball even amongst Aspies, so I might be

the exception to the theory ... <snip> ... "

I talked about an 'informal' study ... informal the same way one might

do an informal study of whether Aspies on this list are pre-dominantly

left-handed or pre-dominantly drop dead gorgeous. It was something to

lighten the mood. But since it appears it wasn't obvious that it was a

light-hearted gathering of information for interest's sake, I'll just

drop it. :-( I just thought it would be interesting to see the

results because I happen to like finding patterns in things which is

why I love mystery novels and detective novels and movies that need to

be figured out.

Raven

[Guest guest]

" ... <snip> ... By the way, I've taken the

> official Myers Briggs measuring instrument twice and was ENFP,

> borderline INFP, both times. So sorry to ruin your theory. But from

> what I have seen, I am an oddball even amongst Aspies, so I might

be

> the exception to the theory ... <snip> ... "

>

> I talked about an 'informal' study ... informal the same way one might

> do an informal study of whether Aspies on this list are pre-dominantly

> left-handed or pre-dominantly drop dead gorgeous. It was something

to

> lighten the mood. But since it appears it wasn't obvious that it was a

> light-hearted gathering of information for interest's sake, I'll just

> drop it. :-( I just thought it would be interesting to see the

> results because I happen to like finding patterns in things which is

> why I love mystery novels and detective novels and movies that

need to

> be figured out.

>

> Raven

>

[Guest guest]

I think it is cross-cultural, but I notice a distinct absence or

rarity of people of African descent on this and other Aspie boards I

have frequented.

People at FAM come here from many different countries all around the

globe. At least 18 countries before I stopped keeping track...

http://www.geocities.com/environmental1st2003/Main7.html

Tom

Administrator

many pictures i see of an " aspie " is a white person with brown or red

hair and green,hazel eyes.there also seems to be a trend to be from

north america,the united kingdom,australia ,new zealand.maybe i skew

what i observe?do you notice any of these patterns?maybe access to a

computer and the internet accounts for some things.any ideas?

[Guest guest]

I am white from north america and have green/hazel eyes, oh and light

brownish hair(near but not blonde) The odd thing is that my parents

have black hair(grandfather was blonde) My skin can be called white (or

orange/green) depending on the season. Both my parents come from other

countries but I was born here. anyway hard to derive a visual

pattern. I too was curious to take a sort of group. If someone were

to set a test that many of us would take and post results, I think that

would be fun too. mimi

[Guest guest]

I am white from north america and have green/hazel eyes, oh and light

brownish hair(near but not blonde) The odd thing is that my parents

have black hair(grandfather was blonde) My skin can be called white (or

orange/green) depending on the season. Both my parents come from other

countries but I was born here. anyway hard to derive a visual

pattern. I too was curious to take a sort of group. If someone were

to set a test that many of us would take and post results, I think that

would be fun too. mimi

[Guest guest]

>i'm wondering what other things could be in common.

> I am white from north america and have green/hazel eyes, oh and

light

> brownish hair(near but not blonde) The odd thing is that my parents

> have black hair(grandfather was blonde) My skin can be called white

(or

> orange/green) depending on the season. Both my parents come from

other

> countries but I was born here. anyway hard to derive a visual

> pattern. I too was curious to take a sort of group. If someone

were

> to set a test that many of us would take and post results, I think

that

> would be fun too. mimi

>

[Guest guest]

>i'm wondering what other things could be in common.

> I am white from north america and have green/hazel eyes, oh and

light

> brownish hair(near but not blonde) The odd thing is that my parents

> have black hair(grandfather was blonde) My skin can be called white

(or

> orange/green) depending on the season. Both my parents come from

other

> countries but I was born here. anyway hard to derive a visual

> pattern. I too was curious to take a sort of group. If someone

were

> to set a test that many of us would take and post results, I think

that

> would be fun too. mimi

>

[Guest guest]

Dear Evanna,

I am sorry to hear that you're worse,

I wish you a lot os strenght... and I hope the medications will help.

Very warm greetings and hugs from me-

Kasia

>

> The nurse finally called me today after I called again.

>

> Not good news... My lupus gotten worse and more ANA activity there.

> And I am to take my medication 3 times a day now. Till I go back

again in

> June

> For another test. Not sure what numbers mean but the nurse is

mailing me

> the

> Report so I can understand. She said. It is 1.2320 Greek to me..

> Today was a bad day.

>

> I am going to my Family Doctor Friday at 10 am.. About the thyroid

test I

> need to do

> And other things I need to talk to him about. Not getting much

sleep till I

> take the over the counter sleep aid and it takes a while to get

into action.

> Which isnt' good. After it does go into action.. I am awake

again. Well

> that's about it....

>

> My PN is acting up too. Had some leg cramps today that I haven't

had in

> awhile.

> Guess I am falling apart huh? Lol

> Hugs to all

> Have a very pain free evening and day.

> Evanna

>

[Guest guest]

Dear Evanna,

I am sorry to hear that you're worse,

I wish you a lot os strenght... and I hope the medications will help.

Very warm greetings and hugs from me-

Kasia

>

> The nurse finally called me today after I called again.

>

> Not good news... My lupus gotten worse and more ANA activity there.

> And I am to take my medication 3 times a day now. Till I go back

again in

> June

> For another test. Not sure what numbers mean but the nurse is

mailing me

> the

> Report so I can understand. She said. It is 1.2320 Greek to me..

> Today was a bad day.

>

> I am going to my Family Doctor Friday at 10 am.. About the thyroid

test I

> need to do

> And other things I need to talk to him about. Not getting much

sleep till I

> take the over the counter sleep aid and it takes a while to get

into action.

> Which isnt' good. After it does go into action.. I am awake

again. Well

> that's about it....

>

> My PN is acting up too. Had some leg cramps today that I haven't

had in

> awhile.

> Guess I am falling apart huh? Lol

> Hugs to all

> Have a very pain free evening and day.

> Evanna

>

[Guest guest]

Hi Evanna

i have lupus and sjogrens syndrome and fibro and i know how tough it is and I went to rheumy a couple of weeks ago and had to up the plaquinel and my iron is low and my liver enzymes are super high and i have three new docs and tests during the next week

Sorry to hear about your troubles and hope the meds get the blood results better. I always test negative on the blood for everything and had to have a lip biopsy and tons of eye tests to get the diagnosis.

with a number like you have it means the lupus is active in your system and the meds are trying to stop the activity from harming anything in your body

take care and get alot of rest if you can

Hugs Colleen************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Hi Evanna

i have lupus and sjogrens syndrome and fibro and i know how tough it is and I went to rheumy a couple of weeks ago and had to up the plaquinel and my iron is low and my liver enzymes are super high and i have three new docs and tests during the next week

Sorry to hear about your troubles and hope the meds get the blood results better. I always test negative on the blood for everything and had to have a lip biopsy and tons of eye tests to get the diagnosis.

with a number like you have it means the lupus is active in your system and the meds are trying to stop the activity from harming anything in your body

take care and get alot of rest if you can

Hugs Colleen************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Dear Evanna,

I'm sorry that your lupus has flared up again. Lupus

is a scary disease. My cousin has a very bad case. She

is about to lose her kidneys and have to go on

dialysis and the transplant list.

I have had some weird immunoglobulins at times during

my illnesses. I've had positive ANA's at a low level

and cryoglobulins present. I know that something in my

body is changing big time. I want my primary care MD

to check for ANA again. I am afraid that I may be

getting rheumatoid arthritis.

I hope the change in the medication helps. Ask

questions until you understand everything. Also, don't

forget to tell your MD about your sleep problems and

pursue that until you have a solution. Lack of sleep

makes everything else worse.

Good Luck ; )

Willow

[Guest guest]

Dear Evanna,

I'm sorry that your lupus has flared up again. Lupus

is a scary disease. My cousin has a very bad case. She

is about to lose her kidneys and have to go on

dialysis and the transplant list.

I have had some weird immunoglobulins at times during

my illnesses. I've had positive ANA's at a low level

and cryoglobulins present. I know that something in my

body is changing big time. I want my primary care MD

to check for ANA again. I am afraid that I may be

getting rheumatoid arthritis.

I hope the change in the medication helps. Ask

questions until you understand everything. Also, don't

forget to tell your MD about your sleep problems and

pursue that until you have a solution. Lack of sleep

makes everything else worse.

Good Luck ; )

Willow

[Guest guest]

That is a very good point about getting enough sleep and if I go a few nights and dont sleep i am a mess and everything makes me stress and have extra anxiety i have a sound machine that helps and the dark eye cover i didnt totally quit my meds though i am just cutting them way down because without any of them i can be awake for days without sleep so I would look into the non narcotic ones so you can stop when you want to

big hugs Colleen************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

That is a very good point about getting enough sleep and if I go a few nights and dont sleep i am a mess and everything makes me stress and have extra anxiety i have a sound machine that helps and the dark eye cover i didnt totally quit my meds though i am just cutting them way down because without any of them i can be awake for days without sleep so I would look into the non narcotic ones so you can stop when you want to

big hugs Colleen************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Thank you Kasia.

I am so frustrated in this lupus but I got a feeling

Had it a while. I wish they can figure out how long and what caused

Lupus. But oh well huh?

I am hoping the meds work too. But will soon see in June 15th.

Hugs

Evanna

-- Re: results

Dear Evanna,

I am sorry to hear that you're worse,

I wish you a lot os strenght... and I hope the medications will help.

Very warm greetings and hugs from me-

Kasia

>

> The nurse finally called me today after I called again.

>

> Not good news... My lupus gotten worse and more ANA activity there.

> And I am to take my medication 3 times a day now. Till I go back

again in

> June

> For another test. Not sure what numbers mean but the nurse is

mailing me

> the

> Report so I can understand. She said. It is 1.2320 Greek to me..

> Today was a bad day.

>

> I am going to my Family Doctor Friday at 10 am.. About the thyroid

test I

> need to do

> And other things I need to talk to him about. Not getting much

sleep till I

> take the over the counter sleep aid and it takes a while to get

into action.

> Which isnt' good. After it does go into action.. I am awake

again. Well

> that's about it....

>

> My PN is acting up too. Had some leg cramps today that I haven't

had in

> awhile.

> Guess I am falling apart huh? Lol

> Hugs to all

> Have a very pain free evening and day.

> Evanna

>

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[Guest guest]

Oh my you have it even rougher. My family Dr said the plaquinel causes eye damage. Oh what fun that is huh? Trying to see.

So that's what the numbers mean.. But what about the 1.40 I hear about or seen.. If it gets lower that means more activity? Right now the fall I had Wednesday caused my left foot to be swollen. Think I sprained it. But it don't hurt much. Just aches. I am so tired Of being sick and not being understood by my youngest daughter. So tired a lot. And I tried to explain it to her. Think I am going to get her more mad at me but I need to talk to hubby about it first.

Evanna

-- Re: Re: results

Hi Evannai have lupus and sjogrens syndrome and fibro and i know how tough it is and I went to rheumy a couple of weeks ago and had to up the plaquinel and my iron is low and my liver enzymes are super high and i have three new docs and tests during the next week Sorry to hear about your troubles and hope the meds get the blood results better. I always test negative on the blood for everything and had to have a lip biopsy and tons of eye tests to get the diagnosis.with a number like you have it means the lupus is active in your system and the meds are trying to stop the activity from harming anything in your bodytake care and get alot of rest if you can Hugs Colleen**************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.