Re: a new question about fluctuating labs

[Guest guest]

Hi, What does his CBC look like? His neutrophil count  called

ANC?.....neutrophils are the bacteria fighting white blood cells, if they are

low or poorly functioning, recurrent bacterial infections may occur...so they

should be checking more than his IgG levels....for example, how are his natural

killer cells, these are a first line against bacterial infections also viral

infections....have they checked his B and T cells, and also the functioning of

his neutrophils?

My son has combined immune deficiency for which he receives Ig replacement

therapy, Hizentra weekly.......and he also has Chronic Neutropenia, which causes

him to have a low, poorly functioning white blood cell population....for that he

receives Neupogen 3x per week....this forces his bone marrow to produce more and

better neutrophils, to fight bacteria.

Before he was diagnosed and began treatment, my son also had terrible chronic

ear infections, even advanced to mastoiditis...sinus infections, he had

meningitis, sepsis, pneumonias, and awful mouth ulcers caused by the

neutropenia, and frequent C diff colitis, he was very sick with these......He

was so thin and sick all the time......now he is better with the

treatments......but it took  longer to find out that multiple arms of his

immune system were affected, not just the IgG....please check into his CBCs and

neutrophil counts.......

keep us updated,,,,,,Sue

From: littlecooke <scookelittle@...>

Subject: a new question about fluctuating labs

Date: Sunday, January 8, 2012, 1:06 PM

 

I posted a while back when I joined and have a new question: has anyone

seen immunoglobulins go way up and down prior to diagnosis?

Brief history is my son - still not diagnosed- was referred to immuno with low

IgG and borderline IgA. (Found that while investigating recurrent pneumonia - 3x

in 6 months, along with a few ear infections and strep throats).

Subsequently he had a normal IgG on repeat labs (that was early or mid November

I think), and they said the first low test may have been lab error. Been in

limbo since then. Since that test, he's had a string of infections and a

possible return to the immunologist has been mentioned.

He finished antibiotics Friday for the second strep since early Dec and Saturday

(yesterday) I had to take him to urgent care because of severe ear pain- and

yes, he has an ear infection. I haven't been able to speak with the pediatrician

yet obviously because it's the weekend, but this seems likely to send us back to

immuno. At urgent care they had three people look at his ear, because " the

antibiotics should still be in his system " .. they could hardly believe it. If I

hadn't seen it myself I'd hardly believe tit either. He is almost 6 and is also

underweight and has GI issues (endoscopy pending in late January). He can't seem

to go more than a couple of weeks without antibiotics; this time he hasn't even

made it 36 hours.

I know we need to continue with all the follow up vaccine titers .....we didn't

complete all the follow up tests once the IG levels came back inside range.

But I can't help but wonder about the IGs- can they go up and down? by a lot?

they were never absent, but were significantly below range, then jumped 300

points to well inside normal range on the repeat test. Maybe it really WAS a

fluke, but I also wondered if maybe they are actually not consistently strong

and that is part of the picture..or maybe we are at an early stage of

dysfunction where they are fluctuating, or something. Has anyone seen anything

like this? are we just totally on the wrong track?

I know I should just be patient with the process..but I'm really having trouble

keeping any kind of perspective here. Ugh.

thanks.

(I have also posted this at the IDF board, sorry if duplicate for anyone)

[Guest guest]

I am just curious what are his actual igg numbers. My sons are 464 and we have

got different answers in how low thus is.

Sent from my Verizon Wireless Phone

Sue Bordelon <sudubo@...> wrote:

>Hi, What does his CBC look like? His neutrophil count  called

ANC?.....neutrophils are the bacteria fighting white blood cells, if they are

low or poorly functioning, recurrent bacterial infections may occur...so they

should be checking more than his IgG levels....for example, how are his natural

killer cells, these are a first line against bacterial infections also viral

infections....have they checked his B and T cells, and also the functioning of

his neutrophils?

>

>My son has combined immune deficiency for which he receives Ig replacement

therapy, Hizentra weekly.......and he also has Chronic Neutropenia, which causes

him to have a low, poorly functioning white blood cell population....for that he

receives Neupogen 3x per week....this forces his bone marrow to produce more and

better neutrophils, to fight bacteria.

>

>Before he was diagnosed and began treatment, my son also had terrible chronic

ear infections, even advanced to mastoiditis...sinus infections, he had

meningitis, sepsis, pneumonias, and awful mouth ulcers caused by the

neutropenia, and frequent C diff colitis, he was very sick with these......He

was so thin and sick all the time......now he is better with the

treatments......but it took  longer to find out that multiple arms of his

immune system were affected, not just the IgG....please check into his CBCs and

neutrophil counts.......

>

>keep us updated,,,,,,Sue

>

>

>

>

>From: littlecooke <scookelittle@...>

>Subject: a new question about fluctuating labs

>

>Date: Sunday, January 8, 2012, 1:06 PM

>

>

>

>

>

>

>

>

> 

>

>

>

>

>

>

>

>

>

> I posted a while back when I joined and have a new question: has anyone

seen immunoglobulins go way up and down prior to diagnosis?

>

>

>

>Brief history is my son - still not diagnosed- was referred to immuno with low

IgG and borderline IgA. (Found that while investigating recurrent pneumonia - 3x

in 6 months, along with a few ear infections and strep throats).

>

>

>

>Subsequently he had a normal IgG on repeat labs (that was early or mid November

I think), and they said the first low test may have been lab error. Been in

limbo since then. Since that test, he's had a string of infections and a

possible return to the immunologist has been mentioned.

>

>

>

>He finished antibiotics Friday for the second strep since early Dec and

Saturday (yesterday) I had to take him to urgent care because of severe ear

pain- and yes, he has an ear infection. I haven't been able to speak with the

pediatrician yet obviously because it's the weekend, but this seems likely to

send us back to immuno. At urgent care they had three people look at his ear,

because " the antibiotics should still be in his system " .. they could hardly

believe it. If I hadn't seen it myself I'd hardly believe tit either. He is

almost 6 and is also underweight and has GI issues (endoscopy pending in late

January). He can't seem to go more than a couple of weeks without antibiotics;

this time he hasn't even made it 36 hours.

>

>

>

>I know we need to continue with all the follow up vaccine titers .....we didn't

complete all the follow up tests once the IG levels came back inside range.

>

>

>

>But I can't help but wonder about the IGs- can they go up and down? by a lot?

they were never absent, but were significantly below range, then jumped 300

points to well inside normal range on the repeat test. Maybe it really WAS a

fluke, but I also wondered if maybe they are actually not consistently strong

and that is part of the picture..or maybe we are at an early stage of

dysfunction where they are fluctuating, or something. Has anyone seen anything

like this? are we just totally on the wrong track?

>

>

>

>I know I should just be patient with the process..but I'm really having trouble

keeping any kind of perspective here. Ugh.

>

>

>

>thanks.

>

>

>

>(I have also posted this at the IDF board, sorry if duplicate for anyone)

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

His CBCs have been normal. There was one number flagged as slightly low, but it

was borderline and both doctors who've seen it were unconcerned. I think it was

lymphocytes but I would have to go back and check. I know neutrophils were

normal.

His first IGG was 430something, not rock bottom but out of range for age. The

repeat one a month later was about 700 which is totally normal. The

age-appropriate range they listed for him (he is almost 6) was something like

590-1200. His IGA has been run 3 times and is at the low end of normal every

time. I assume isohemagglutinins were normal (this was run and nobody called me

so I assume it wasn't flagged).

His initial pneumo titers were low. He had all his infant prevnar but I

understand those initial low values may not indicate anything. He received the

pneumovax 23 in november but once the 700 IGG value came back the immunologist

indicated to me that he needn't get the follow up titers done unless he had

suspicious infections.

Most recently we've had recurrent strep throat, which is common enough among

people with normal immunity so the pediatrician hasn't sent us back to immuno.

recurrent strep doesn't technically count as suspicious. (although ped is still

suspicious because my son is always in there with something)

Now with this ear infection basically while still on cephalexin...it's

concerning. It has me back thinking about those initial numbers again. Maybe

that wasn't a lab error. and clearly we need to follow up with more titers.

Does he need to be well for the titers to be run? anyone know?

[Guest guest]

We experienced some of the same issues as you are when our daughter was being

dx, when they tested her inititally all her immunoglobulins came back low- then

on 2nd test her IGG was went up a bit but almost no IGM. Then tested again-

still almost no IGM and IGG low again- so we moved on to a clinical immunologist

who first told us she has an IGM deficiency and that IVIG would not be able to

replace this- but then when she was retested again by the clincal immunologist

all her levels where low again and we started the titer testing- it was wierd

because those actually came back showing she did make a response to vaccines,

however within 6 months all the titter levels began to decrease to the point

that set of alarms and got us to the dx of CVID.

Our daughter did not present in the way that most patients do, so it was very

difficult to figure out what was going on with her, she was luckier then most

that she was dx early around age 12, but she has tons of scarring on her ear

drums and has been through 3 surgeries so far ( 2 sinus surgeries and 1 ear

tubes).

So in a 1.5 year span she went from being dx with Hypogammaglobunema to IGM

Deficiency to finally CVID. She has been on treatment ever since and has

remained much healthier, She still gets sinuse infections here and there, but

luckly for us no pneumonia. She like your son has always been small for her age

as well. Not sure if that is typical for these kids but seems that our kids have

much in common. hope this helps

Sue Petrelli

mom to now 20 year old

________________________________

From: littlecooke <scookelittle@...>

Sent: Sun, January 8, 2012 7:06:28 AM

Subject: a new question about fluctuating labs

 

I posted a while back when I joined and have a new question: has anyone seen

immunoglobulins go way up and down prior to diagnosis?

Brief history is my son - still not diagnosed- was referred to immuno with low

IgG and borderline IgA. (Found that while investigating recurrent pneumonia - 3x

in 6 months, along with a few ear infections and strep throats).

Subsequently he had a normal IgG on repeat labs (that was early or mid November

I think), and they said the first low test may have been lab error. Been in

limbo since then. Since that test, he's had a string of infections and a

possible return to the immunologist has been mentioned.

He finished antibiotics Friday for the second strep since early Dec and Saturday

(yesterday) I had to take him to urgent care because of severe ear pain- and

yes, he has an ear infection. I haven't been able to speak with the pediatrician

yet obviously because it's the weekend, but this seems likely to send us back to

immuno. At urgent care they had three people look at his ear, because " the

antibiotics should still be in his system " .. they could hardly believe it. If I

hadn't seen it myself I'd hardly believe tit either. He is almost 6 and is also

underweight and has GI issues (endoscopy pending in late January). He can't seem

to go more than a couple of weeks without antibiotics; this time he hasn't even

made it 36 hours.

I know we need to continue with all the follow up vaccine titers .....we didn't

complete all the follow up tests once the IG levels came back inside range.

But I can't help but wonder about the IGs- can they go up and down? by a lot?

they were never absent, but were significantly below range, then jumped 300

points to well inside normal range on the repeat test. Maybe it really WAS a

fluke, but I also wondered if maybe they are actually not consistently strong

and that is part of the picture..or maybe we are at an early stage of

dysfunction where they are fluctuating, or something. Has anyone seen anything

like this? are we just totally on the wrong track?

I know I should just be patient with the process..but I'm really having trouble

keeping any kind of perspective here. Ugh.

thanks.

(I have also posted this at the IDF board, sorry if duplicate for anyone)

[Guest guest]

He does not have to be well to run the titers, as far as I know.  We have found

a large discrepancy in IgG, IgA, and IgM values depending on which lab runs the

test.  The two labs available in Arizona are Sonora Quest and LabCorp.  Both

national labs.  's numbers easily qualify him for CVID with Sonora Quests

numbers, with LabCorp numbers his IgA is still quite low (16), but his IgG is

just inside the lower boundary.  My suggestion is to stick to one lab to

process your blood-work and the national experts we have talked to all prefer

LabCorp.

I would definitely ask for another referral to the Immunologist.  It will tell

you a lot to check his titers to the pneumovax.  ( made almost no

antibodies to the toddler vaccine Prevnar, but has done much better with

pneumovax).

Good luck,Vickie

From: littlecooke <scookelittle@...>

Subject: Re: a new question about fluctuating labs

Date: Sunday, January 8, 2012, 8:49 AM

 

His CBCs have been normal. There was one number flagged as slightly low, but it

was borderline and both doctors who've seen it were unconcerned. I think it was

lymphocytes but I would have to go back and check. I know neutrophils were

normal.

His first IGG was 430something, not rock bottom but out of range for age. The

repeat one a month later was about 700 which is totally normal. The

age-appropriate range they listed for him (he is almost 6) was something like

590-1200. His IGA has been run 3 times and is at the low end of normal every

time. I assume isohemagglutinins were normal (this was run and nobody called me

so I assume it wasn't flagged).

His initial pneumo titers were low. He had all his infant prevnar but I

understand those initial low values may not indicate anything. He received the

pneumovax 23 in november but once the 700 IGG value came back the immunologist

indicated to me that he needn't get the follow up titers done unless he had

suspicious infections.

Most recently we've had recurrent strep throat, which is common enough among

people with normal immunity so the pediatrician hasn't sent us back to immuno.

recurrent strep doesn't technically count as suspicious. (although ped is still

suspicious because my son is always in there with something)

Now with this ear infection basically while still on cephalexin...it's

concerning. It has me back thinking about those initial numbers again. Maybe

that wasn't a lab error. and clearly we need to follow up with more titers.

Does he need to be well for the titers to be run? anyone know?

[Guest guest]

He does not have to be well to run the titers, as far as I know.  We have found

a large discrepancy in IgG, IgA, and IgM values depending on which lab runs the

test.  The two labs available in Arizona are Sonora Quest and LabCorp.  Both

national labs.  's numbers easily qualify him for CVID with Sonora Quests

numbers, with LabCorp numbers his IgA is still quite low (16), but his IgG is

just inside the lower boundary.  My suggestion is to stick to one lab to

process your blood-work and the national experts we have talked to all prefer

LabCorp.

I would definitely ask for another referral to the Immunologist.  It will tell

you a lot to check his titers to the pneumovax.  ( made almost no

antibodies to the toddler vaccine Prevnar, but has done much better with

pneumovax).

Good luck,Vickie

From: littlecooke <scookelittle@...>

Subject: Re: a new question about fluctuating labs

Date: Sunday, January 8, 2012, 8:49 AM

 

His CBCs have been normal. There was one number flagged as slightly low, but it

was borderline and both doctors who've seen it were unconcerned. I think it was

lymphocytes but I would have to go back and check. I know neutrophils were

normal.

His first IGG was 430something, not rock bottom but out of range for age. The

repeat one a month later was about 700 which is totally normal. The

age-appropriate range they listed for him (he is almost 6) was something like

590-1200. His IGA has been run 3 times and is at the low end of normal every

time. I assume isohemagglutinins were normal (this was run and nobody called me

so I assume it wasn't flagged).

His initial pneumo titers were low. He had all his infant prevnar but I

understand those initial low values may not indicate anything. He received the

pneumovax 23 in november but once the 700 IGG value came back the immunologist

indicated to me that he needn't get the follow up titers done unless he had

suspicious infections.

Most recently we've had recurrent strep throat, which is common enough among

people with normal immunity so the pediatrician hasn't sent us back to immuno.

recurrent strep doesn't technically count as suspicious. (although ped is still

suspicious because my son is always in there with something)

Now with this ear infection basically while still on cephalexin...it's

concerning. It has me back thinking about those initial numbers again. Maybe

that wasn't a lab error. and clearly we need to follow up with more titers.

Does he need to be well for the titers to be run? anyone know?

[Guest guest]

there are many PID patients who have fluctuating IgG levels but what tells

if these levels even mean anything is the antibody response. My husband

keeps an IgG level in the 900's but has no antibody response. Get the

antibody testing done and find out what the root of the problem is.

Ursula

mom to Macey (16, CVID) and wife to Les (CVID)

On Sun, Jan 8, 2012 at 8:06 AM, littlecooke <scookelittle@...> wrote:

> **

>

>

> I posted a while back when I joined and have a new question: has anyone

> seen immunoglobulins go way up and down prior to diagnosis?

>

> Brief history is my son - still not diagnosed- was referred to immuno with

> low IgG and borderline IgA. (Found that while investigating recurrent

> pneumonia - 3x in 6 months, along with a few ear infections and strep

> throats).

>

> Subsequently he had a normal IgG on repeat labs (that was early or mid

> November I think), and they said the first low test may have been lab

> error. Been in limbo since then. Since that test, he's had a string of

> infections and a possible return to the immunologist has been mentioned.

>

> He finished antibiotics Friday for the second strep since early Dec and

> Saturday (yesterday) I had to take him to urgent care because of severe ear

> pain- and yes, he has an ear infection. I haven't been able to speak with

> the pediatrician yet obviously because it's the weekend, but this seems

> likely to send us back to immuno. At urgent care they had three people look

> at his ear, because " the antibiotics should still be in his system " .. they

> could hardly believe it. If I hadn't seen it myself I'd hardly believe tit

> either. He is almost 6 and is also underweight and has GI issues (endoscopy

> pending in late January). He can't seem to go more than a couple of weeks

> without antibiotics; this time he hasn't even made it 36 hours.

>

> I know we need to continue with all the follow up vaccine titers .....we

> didn't complete all the follow up tests once the IG levels came back inside

> range.

>

> But I can't help but wonder about the IGs- can they go up and down? by a

> lot? they were never absent, but were significantly below range, then

> jumped 300 points to well inside normal range on the repeat test. Maybe it

> really WAS a fluke, but I also wondered if maybe they are actually not

> consistently strong and that is part of the picture..or maybe we are at an

> early stage of dysfunction where they are fluctuating, or something. Has

> anyone seen anything like this? are we just totally on the wrong track?

>

> I know I should just be patient with the process..but I'm really having

> trouble keeping any kind of perspective here. Ugh.

>

> thanks.

>

> (I have also posted this at the IDF board, sorry if duplicate for anyone)

>

>

>

[Guest guest]

We saw the pediatrician this morning and have sent out post vac pneumococcal

titers. He said he tends to think my son's immune system is ok but said he is

also confused about what is really going on with him so we will follow up again

with immunology. More waiting, sigh.

His ear still looks yucky today, but it's not hurting so that is an improvement.

Will follow up when I get news, even if it's uninteresting, because it might be

of use to someone else later. (Can I just say how useful the archives of this

list have been for me!?)

[Guest guest]

We saw the pediatrician this morning and have sent out post vac pneumococcal

titers. He said he tends to think my son's immune system is ok but said he is

also confused about what is really going on with him so we will follow up again

with immunology. More waiting, sigh.

His ear still looks yucky today, but it's not hurting so that is an improvement.

Will follow up when I get news, even if it's uninteresting, because it might be

of use to someone else later. (Can I just say how useful the archives of this

list have been for me!?)