bloodwork confusion

[Guest guest]

Rogena, my son has been getting testing since around 2 years old. I

thought the blood tests were accurate I have also tested my 10 year old this

week and I think the tests are accurate. has been on ivig for 2 years

now and I have been recently diagnosed cvid and will start ivig in the coming

weeks. I personaaly think the blood tests are accurate, why take them if they

are not? My son is four now and will get blood test next week before being

infused. His blood tests results in the past were the deciding factor for

starting ivig in the first place...so I am confused too? I hope things clear up

for you soon. Dawn cvid mother to cvid, acid reflux disease, asthma,

develop. delay, sensory issues

nogirlsallboys <mrlbrinks@...> wrote: I just called Cole's immuno this

morning to see if he should have

another round of bloodwork before his appointment April 11. At our

appt. in October (when Cole was diagnosed), the immuno put him on

the profalactic antibiotic an said we would keep him on it until the

April appt. at which time we would check to see if his levels of IgA

had improved on their own. Well, now I am a bit confused.

The nurse said she would be happy to check with the Dr. to

see if he wanted a repeat blood draw similar to the one in October.

Evidently he hadn't requested it in his notes. She told me that at

Cole's age (3 yr.) the bloodtests for titers and antibody

deficiencies are extremely innaccurate and unreliable and perhaps

that is why Dr. wants to " wait and see " how Cole does. HUH???? It

looks like a majority of you guys have PID pumpkins who have been

tested, diagnosed and properly treated at the tender age of 3 or

younger. Am I wrong???

The immuno nurse will be talking to Dr. today and calling

me back. I told her that Cole continued to have breakthrough

infections from December until just a couple of weeks ago.

Obviously something isn't quite right with him. There is also the

issue of chronic loss/lack of energy and appetite that seem to

plague him.

How accurate is the testing they do on children? What tests should

I be looking for for my son? Thanks for any input you might have!

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

GERD, possible Celiac)

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

Rogena -

What the nurse may be talking about is the issue of the difference in

kids verse adults. Since kids are still growing and developing, some

kids have immune systems that are still developing. Many kids are

initially diagnosed with THI which is a transient immune deficiency.

Meaning the defect is thought to be an immaturity of the immune system

as opposed to a true defect. I'm not exactly sure what causes a doc to

think it's an immaturity as opposed to a defect, that's a question I

asked for clarification on recently - however, I do know T-cell defects

are usually thought to be defects, not immaturities.

I can say, whatever the case, with your son, trust your own instincts as

to if and when he needs treatments. Many kids who are believed to be

transient are still treated with IVIG. Take hope, some parents, one on

this list included are told their child has a defect that will not be

outgrown, but the child did outgrow many parts of her issues (can you

jump in here ?) I was initially told my daughter was transient, and

then when the boys were diagnosed the immunologist told me it was less

likely it is transient because of all three kids having itt. Our

immunologist has told us in the past that until around 5 or 6 there is

still a chance of the immune system maturing and correcting itself. I

will tell you this, we have never told our kids they will outgrow their

issues, because I think it's setting them up for a failure if they

don't. I can tell you my kids have changed over the past two years -

where there was no IgA, IgA has now appeared in one of my kids - and in

one, where there was IgA, suddenly, it's well below normal.

Additionally, our IgM has dropped in two kids. For me, personally, not

knowing what their long term path will be has been a difficulty but

it's something I've had to let go of over time. We may never know the

exact answers but we are able to take comfort in how well they do on

IVIG, and how normal life now is with IVIG on board!

I have not head the tests are inaccurate, or unreliable - I do know that

the levels are different in kids then they are in adults. Does your

immunologist respond to emails? Perhaps this would be a good email

question for him if he's willing.

Dayna

Bloodwork Confusion

I just called Cole's immuno this morning to see if he should have

another round of bloodwork before his appointment April 11. At our

appt. in October (when Cole was diagnosed), the immuno put him on

the profalactic antibiotic an said we would keep him on it until the

April appt. at which time we would check to see if his levels of IgA

had improved on their own. Well, now I am a bit confused.

The nurse said she would be happy to check with the Dr. to

see if he wanted a repeat blood draw similar to the one in October.

Evidently he hadn't requested it in his notes. She told me that at

Cole's age (3 yr.) the bloodtests for titers and antibody

deficiencies are extremely innaccurate and unreliable and perhaps

that is why Dr. wants to " wait and see " how Cole does. HUH???? It

looks like a majority of you guys have PID pumpkins who have been

tested, diagnosed and properly treated at the tender age of 3 or

younger. Am I wrong???

The immuno nurse will be talking to Dr. today and calling

me back. I told her that Cole continued to have breakthrough

infections from December until just a couple of weeks ago.

Obviously something isn't quite right with him. There is also the

issue of chronic loss/lack of energy and appetite that seem to

plague him.

How accurate is the testing they do on children? What tests should

I be looking for for my son? Thanks for any input you might have!

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

GERD, possible Celiac)

This forum is open to parents and caregivers of children diagnosed with

a Primary Immune Deficiency. Opinions or medical advice stated here are

the sole responsibility of the poster and should not be taken as

professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

Rogena -

What the nurse may be talking about is the issue of the difference in

kids verse adults. Since kids are still growing and developing, some

kids have immune systems that are still developing. Many kids are

initially diagnosed with THI which is a transient immune deficiency.

Meaning the defect is thought to be an immaturity of the immune system

as opposed to a true defect. I'm not exactly sure what causes a doc to

think it's an immaturity as opposed to a defect, that's a question I

asked for clarification on recently - however, I do know T-cell defects

are usually thought to be defects, not immaturities.

I can say, whatever the case, with your son, trust your own instincts as

to if and when he needs treatments. Many kids who are believed to be

transient are still treated with IVIG. Take hope, some parents, one on

this list included are told their child has a defect that will not be

outgrown, but the child did outgrow many parts of her issues (can you

jump in here ?) I was initially told my daughter was transient, and

then when the boys were diagnosed the immunologist told me it was less

likely it is transient because of all three kids having itt. Our

immunologist has told us in the past that until around 5 or 6 there is

still a chance of the immune system maturing and correcting itself. I

will tell you this, we have never told our kids they will outgrow their

issues, because I think it's setting them up for a failure if they

don't. I can tell you my kids have changed over the past two years -

where there was no IgA, IgA has now appeared in one of my kids - and in

one, where there was IgA, suddenly, it's well below normal.

Additionally, our IgM has dropped in two kids. For me, personally, not

knowing what their long term path will be has been a difficulty but

it's something I've had to let go of over time. We may never know the

exact answers but we are able to take comfort in how well they do on

IVIG, and how normal life now is with IVIG on board!

I have not head the tests are inaccurate, or unreliable - I do know that

the levels are different in kids then they are in adults. Does your

immunologist respond to emails? Perhaps this would be a good email

question for him if he's willing.

Dayna

Bloodwork Confusion

I just called Cole's immuno this morning to see if he should have

another round of bloodwork before his appointment April 11. At our

appt. in October (when Cole was diagnosed), the immuno put him on

the profalactic antibiotic an said we would keep him on it until the

April appt. at which time we would check to see if his levels of IgA

had improved on their own. Well, now I am a bit confused.

The nurse said she would be happy to check with the Dr. to

see if he wanted a repeat blood draw similar to the one in October.

Evidently he hadn't requested it in his notes. She told me that at

Cole's age (3 yr.) the bloodtests for titers and antibody

deficiencies are extremely innaccurate and unreliable and perhaps

that is why Dr. wants to " wait and see " how Cole does. HUH???? It

looks like a majority of you guys have PID pumpkins who have been

tested, diagnosed and properly treated at the tender age of 3 or

younger. Am I wrong???

The immuno nurse will be talking to Dr. today and calling

me back. I told her that Cole continued to have breakthrough

infections from December until just a couple of weeks ago.

Obviously something isn't quite right with him. There is also the

issue of chronic loss/lack of energy and appetite that seem to

plague him.

How accurate is the testing they do on children? What tests should

I be looking for for my son? Thanks for any input you might have!

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

GERD, possible Celiac)

This forum is open to parents and caregivers of children diagnosed with

a Primary Immune Deficiency. Opinions or medical advice stated here are

the sole responsibility of the poster and should not be taken as

professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

Dawn,

My daughter is only 14 months and I have never been given the

impression that the tests are unreliable. They may change over time,

yes, as she matures, but for right now they are an accurate picture of

what her system is doing. Why do them otherwise? I'd ask the doctor

to clarify what he/she meant by inaccurate. Maybe they meant that

things can change. Worth clarifying for sure though.

Ana 14 mo, IgG, FTT etc

[Guest guest]

Rogena,

I was always told (and still are) that my daughter (now 4 1/2) would never

outgrow her Bcell defect. She started showing signs immediately after birth and

progressively got worse until they started her on IVIG at 6 months old (yes, she

was formally diagnosised by labwork at 6 months old!). She has now been off

IVIG for going on 9 months and is doing great so far. She has had the flu and

strep while off IVIG and was able to combat both with a normal round of Tamaflu

& antibiotics. At this point the drs. all look at her labwork and then look at

her and scratch their heads. Her IgG is 61 and IgM & IgA undetectable..but she

is the picture of health. Full of color, energy & always ready to go, go, go.

She has 3 older sibiling and does go to Preschool 2 days a week..so she is

exposed. And preschool (and maybe even school) is something we were told at one

point may never be an option. So, although I don't understand why they would

say labs at this age would not be accurate, I do know things can change as they

get older. Her gut issues have resolved greatly over the years to where now she

can eat everything but a hand full of foods, her eczema gets better every year

and her overall health seems to get better and better. And we have always been

told hers was definetly not THI because of her IgM being almost absent. I

would definetly push for more bloodwork until you get an answer you are

comfortable with. I know Reagon has had almost every aspect of her immune

system checked almost monthly since she was 4 months old.

Becki

Reagon CVID, asthma, allergies

---- Original Message -----

From: Dayna S Fladhammer

Sent: Thursday, March 23, 2006 9:47 AM

Subject: RE: Bloodwork Confusion

Rogena -

What the nurse may be talking about is the issue of the difference in

kids verse adults. Since kids are still growing and developing, some

kids have immune systems that are still developing. Many kids are

initially diagnosed with THI which is a transient immune deficiency.

Meaning the defect is thought to be an immaturity of the immune system

as opposed to a true defect. I'm not exactly sure what causes a doc to

think it's an immaturity as opposed to a defect, that's a question I

asked for clarification on recently - however, I do know T-cell defects

are usually thought to be defects, not immaturities.

I can say, whatever the case, with your son, trust your own instincts as

to if and when he needs treatments. Many kids who are believed to be

transient are still treated with IVIG. Take hope, some parents, one on

this list included are told their child has a defect that will not be

outgrown, but the child did outgrow many parts of her issues (can you

jump in here ?) I was initially told my daughter was transient, and

then when the boys were diagnosed the immunologist told me it was less

likely it is transient because of all three kids having itt. Our

immunologist has told us in the past that until around 5 or 6 there is

still a chance of the immune system maturing and correcting itself. I

will tell you this, we have never told our kids they will outgrow their

issues, because I think it's setting them up for a failure if they

don't. I can tell you my kids have changed over the past two years -

where there was no IgA, IgA has now appeared in one of my kids - and in

one, where there was IgA, suddenly, it's well below normal.

Additionally, our IgM has dropped in two kids. For me, personally, not

knowing what their long term path will be has been a difficulty but

it's something I've had to let go of over time. We may never know the

exact answers but we are able to take comfort in how well they do on

IVIG, and how normal life now is with IVIG on board!

I have not head the tests are inaccurate, or unreliable - I do know that

the levels are different in kids then they are in adults. Does your

immunologist respond to emails? Perhaps this would be a good email

question for him if he's willing.

Dayna

Bloodwork Confusion

I just called Cole's immuno this morning to see if he should have

another round of bloodwork before his appointment April 11. At our

appt. in October (when Cole was diagnosed), the immuno put him on

the profalactic antibiotic an said we would keep him on it until the

April appt. at which time we would check to see if his levels of IgA

had improved on their own. Well, now I am a bit confused.

The nurse said she would be happy to check with the Dr. to

see if he wanted a repeat blood draw similar to the one in October.

Evidently he hadn't requested it in his notes. She told me that at

Cole's age (3 yr.) the bloodtests for titers and antibody

deficiencies are extremely innaccurate and unreliable and perhaps

that is why Dr. wants to " wait and see " how Cole does. HUH???? It

looks like a majority of you guys have PID pumpkins who have been

tested, diagnosed and properly treated at the tender age of 3 or

younger. Am I wrong???

The immuno nurse will be talking to Dr. today and calling

me back. I told her that Cole continued to have breakthrough

infections from December until just a couple of weeks ago.

Obviously something isn't quite right with him. There is also the

issue of chronic loss/lack of energy and appetite that seem to

plague him.

How accurate is the testing they do on children? What tests should

I be looking for for my son? Thanks for any input you might have!

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

GERD, possible Celiac)

This forum is open to parents and caregivers of children diagnosed with

a Primary Immune Deficiency. Opinions or medical advice stated here are

the sole responsibility of the poster and should not be taken as

professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

She told me that at

> Cole's age (3 yr.) the bloodtests for titers and antibody

> deficiencies are extremely innaccurate and unreliable and perhaps

> that is why Dr. wants to " wait and see " how Cole does. HUH???? It

Rogena, this nurse sounds like an " allergy " nurse, not a PID nurse.

Allergy testing before the age of 3 is very unpredictable on the

results. But testing for PID is generally considered " accurate " at any

age. However, a lot of doctors want to wait until age 2 because that's

approximately the age that most children stabilize if they are going to.

In other words, if you test a 6 month old baby -- the results will be

accurate -- just not very informative because he's still in the process

of developing his immune system and if he's nursing may reflect his

Mom's antibodies. But at two, doctors generally begin to worry if the

numbers are still low. If the clinical picture is yucky, IgG

replacement should begin immediately regardless of age to prevent damage

-- but with the knowledge that the IgG numbers may continue to rise.

Hope that helps clarify,

In His service,

dale

[Guest guest]

She told me that at

> Cole's age (3 yr.) the bloodtests for titers and antibody

> deficiencies are extremely innaccurate and unreliable and perhaps

> that is why Dr. wants to " wait and see " how Cole does. HUH???? It

Rogena, this nurse sounds like an " allergy " nurse, not a PID nurse.

Allergy testing before the age of 3 is very unpredictable on the

results. But testing for PID is generally considered " accurate " at any

age. However, a lot of doctors want to wait until age 2 because that's

approximately the age that most children stabilize if they are going to.

In other words, if you test a 6 month old baby -- the results will be

accurate -- just not very informative because he's still in the process

of developing his immune system and if he's nursing may reflect his

Mom's antibodies. But at two, doctors generally begin to worry if the

numbers are still low. If the clinical picture is yucky, IgG

replacement should begin immediately regardless of age to prevent damage

-- but with the knowledge that the IgG numbers may continue to rise.

Hope that helps clarify,

In His service,

dale

[Guest guest]

Our kids pulmo initially found their IgG def at ages:brennan, 8

months, and donovan, 2 yrs. She told me at that time, that since they

were small, we would continue to follow the bloodwork once a yr, since

at that time, it was " borderline low " . The next yr, it was still,

borderline low, and she said, dont panic yet, there is still hope they

" might " outgrow this...........MIGHT, not WILL. At that time, we

thought that by keeping them on prophylaxis abx and stabilizing the

reflux we could get a good handle on the asthma. well, that didnt

happen. We continued to test yearly. Well, now that brennan has

consistently had low IgG and it is continuing to drop, I really dont

think its transient. Donovans IgG has come up, bu this IgA and IgM

have dropped. Savannah has CVID. Even though Brennan is only 3, his

numbers have been consistent and or dropping his whole

life........donovans came up in one but dropped in

others.......savannah's has been sudden and awful at age 8. So I dont

think it so much matters what age the testing is done at......I think,

for our family, at least, it appears that something is just wrong and

isnt going away.

That said, about a yr ago we saw an allergist who I REALLY didnt like.

I took the labs with me so he could see the pattern......and he

dropped them like garbage and said........this type of immune def is

ALWAYS transient........these labs are worthless. (obviously, he was

wrong) he also told me from about 5 ft away that nothing at all was

wrong with my kids and flat out refused to do what we had been sent

there to do...which was food allergy testing. (went to a different

allergist and found out that 2 of them are allergic to milk and egg).

I told him that our pulmo has actually bronched them a couple of

times, they have been cultured, tested, and very thouroughly checked

out, and the symptoms have always been consistent with their test

results and such. He laughed and said, if I dont do the tests, I dont

beleive them........he went on to tell me that my " female " drs(family

and pulmo) drs were QUACKS and dont know what they are doing.

(dumb girl theory) he tried to get me to drop my pulmo and let him

handle it(he was A and A, not pulmo) and I actually ended up leaving

before the appt was supposed to be over.

I offered him our pulmo's pager number and told him, he could call

her and discuss it. He refused it. He also wanted me, right then, to

stop giving them all their meds(including prednisone) and see what

happened.

I told the pulmo at our next appt what he said, I was so mad. She

said.....let me guess his name......( and she was RIGHT) she told me

he had landed several of her patients in the ER for taking all their

meds away and telling her patients she was making things seem worse

than they were.

I am sure you can see which one i stuck with.......and I guess I took

up all that space just to say that I think the test results are

reliable in a child that small, and that while there is always hope

that an immune def could be transient, I wouldnt bank on it till I saw

it with my own eyes.but it will always depend on what dr you are

talking to and what they believe.

valarie

[Guest guest]

I just received a call back from the immuno's office. The doctor DOES

want another round of bloodwork done on Cole prior to his appt in

April. I have to take him the pediatrician tommorow so I am going to

stop at the immuno office and grab the lab slip and get that all done

tommorow. Thanks for the input and I'll let you know what we find out.

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

possible Celiac)

[Guest guest]

In a message dated 3/23/2006 9:50:22 AM Central Standard Time,

fladfam@... writes:

> Take hope, some parents, one on

> this list included are told their child has a defect that will not be

> outgrown, but the child did outgrow many parts of her issues (can you

> jump in here ?)

Sorry -- between 's flu and going out of town, I had over 400 e-mails

pile up. Yup, 400. Sadly, I had to delete most, but I did see this one.

When was first " diagnosed " , she was only 13 months old. They almost

never give a dx of CVID that young, because of the possibility of THI. What they

said though, was that if your #s are low, it can be a maturational issue. But

if your function is not there, that's not something that will usually change.

If you have low #s but good function (let's say your IgG is low but you made

antibodies to your vaccines and illnesses), you can hope that with age you will

make more #s. But if you have low #s and low function (abnormal ab

responses), it's not so likely.

In 's case, she had low #s (low IgG, low IgM and absent IgA). She had

low function (non--protective levels of abs to polio, HiB and Prevnar). She also

had no isohemagglutinins at 18 months old (ability to react to foreign blood

types -- usually present before a year old I think?) and also some partial

t-cell deficits.

So they felt pretty confident going out on a limb even at that young age, and

telling us this was permanent. Makes sense to me even now.

Well, by age two, her IgG was up, t-cells were fine, IgA was still low but it

was THERE, IgM fine, got the polio and HiB abs up. Isohemagglutinins present.

Still had low responses to Prevnar (polysaccharide encapsulated bacteria).

By age three, IgM, IgG and IgA NORMAL. HiB dropped again, re-boosted, stayed

up. Still had the pneumo ab problem.

But looking at all the things she outgrew -- wow. I was especially shocked

that her IgA could be " absent " , tested multiple times with both serum and

saliva, then suddenly be present. The ID/Immuno sort of shrugged and said, " It

happens. " It was hard to trust, but then the next year it was in the normal

range!

So you can understand why we still have hope her pneumo abs will some day

kick in. Of course, you'll hear me screaming from wherever you are if, Heaven

forbid, someday her PID should get worse. For now, we're just thrilled at all

the

amazing improvements.

(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 3-1/2!, more dairy intolerant but very healthy!)