Re: Vaccine titer info needed

December 5, 2008

What T-cell studies have they done on him so far? It would depend on his t-cell

function as to whether the live vaccination would be a problem. Assuming that

he is not on IVIG and not getting varicella titers this way then having chicken

pox with his respiratory system might be an even bigger risk. The MMR might be

worth waiting on if it makes you feel better but I will tell you that they can

use that to also judge antibody response and determine his T-cell status

somewhat. Macey gets IVIG so she's never needed the Varicella but she has had

the MMR (2 or 3 times) for antibody testing.

Ursula - mom to (16) and Macey (13,CVID)

http://www.caringbridge.org/visit/maceyholleman

@...: stina5997@...: Fri, 5 Dec 2008

16:06:53 +0000Subject: Vaccine titer info needed

Hi all,So I am asking for help understanding what my doctor is thinking....

is 2 years old and was revaccinated with Prevnar in March 08. 6 weeks later he

was building a response but he latest blood work done 2 weeks ago now shows he

is once again losing the response. I know we all lose a bit of the response but

not to the extent he does. THis is what we were looking for because he has done

this in the past. His IGG, IGA and IGM were in the lab's normal ranges, but only

be a few points. So he is the low end of normal. (also to remind you all, I have

2 daughters as well, ages 4 and 1, that are completely fine and not getting sick

when he is)We saw our Infectious Disease Dr yesterday and she is not overally

concerned.....First because he has been pnuemonia and bacterial infection free

for over 6 months (mostly in part to our vigilent nebulizer treatments

throughout the day and keeping him secluded and home alot!) He still is sick

about every 2 weeks with Viral Upper Respitory Infections which then escaltes

into respitory distress and ER visits. Last week he even stopped breathing and

lost conciousness....but that doesn't seem to bother anyone but me (even his

pulmonologist wasn't too concerned). She would like him to get the Pnuemovax

vaccine, which I think is ok since some people only respond to one or the other

for the pnuemococal titers. So that is ok with me and if he does respond it may

help. But she also wants him to get his live vaccines which we have

avoided....So that would be the MMR and Varicilla as well. His appt is set for

next Friday for this. We also need to draw more blood to see how his deptithera

and tetnus titers are doing (she forgot last week). What I am wondering is does

it make sense to get the live vaccines? Both my mom and mother in law who are

icu/pediatric nurses are not convinced it is a good time. And is it possible to

have an immune problem where you only do not respond to the Pnuemococcal titers?

And when should I ask for the titers again to see what is going on with the

Pnuemovax? And one more, what is considered normal loss of titers over time?

Does anyone know how long the prevnar and pnuemovax are supposed to last? I

haven't found that info yet.Thank you for all that are just reading this and

those that respond. I know I do alot of reading and not much posting, but this

group has been a Godsend to my family. A

December 5, 2008

---pneumonia is not the only thing that can damage lungs.....other

repeated lung infections can do the same. Your child is sick too

often, has clear issues that indicate a problem in his immune system,

and the amount of times you are in the ER is ridiculous.....this

little kid could die from an asthma attack, esp since bc his

infections are not under control, his asthma is always flaring.

Is there any way to get a second opinion? This is exactly how my sons

were. Since infancy, they would get URI's, asthma flares, ER runs, and

constant abx and prednisone. They would get better for a week, maybe,

and be down with something else. We never went anywhere, not even

church, and they still got sick. But, they didnt ever have pneumonia.

I had some drs telling me I was exaggerating, once, even that I was

doing it to get attention. I changed drs and found my kids had severe

asthma, CVID, structural anomalies that caused breathing problems, and

one had a collapsed lung at that time(at 8 months old). I wasnt

exaggerating, my kids needed help, and so does yours.

When we started IVIG, the infections became less and less. Until one

day I realized it had been MONTHS since the last time we needed

prednisone, we hadnt run to ER at all, and I was seeing my youngest

kid for the first time w/o a green snotty nose.

Your child is sick too much. I know YOU know that.......this isnt

normal, how often he is sick.....I hope you are able to get another

opinion.

valarie

mom to 3 w/cvid

In , Ursula Holleman <uahollem@...> wrote:

>

> What T-cell studies have they done on him so far? It would depend

on his t-cell function as to whether the live vaccination would be a

problem. Assuming that he is not on IVIG and not getting varicella

titers this way then having chicken pox with his respiratory system

might be an even bigger risk. The MMR might be worth waiting on if it

makes you feel better but I will tell you that they can use that to

also judge antibody response and determine his T-cell status somewhat.

Macey gets IVIG so she's never needed the Varicella but she has had

the MMR (2 or 3 times) for antibody testing.

> Ursula - mom to (16) and Macey (13,CVID)

http://www.caringbridge.org/visit/maceyholleman

>

> @...: stina5997@...: Fri, 5 Dec 2008 16:06:53

+0000Subject: Vaccine titer info needed

>

> Hi all,So I am asking for help understanding what my doctor is

thinking.... is 2 years old and was revaccinated with Prevnar in

March 08. 6 weeks later he was building a response but he latest blood

work done 2 weeks ago now shows he is once again losing the response.

I know we all lose a bit of the response but not to the extent he

does. THis is what we were looking for because he has done this in the

past. His IGG, IGA and IGM were in the lab's normal ranges, but only

be a few points. So he is the low end of normal. (also to remind you

all, I have 2 daughters as well, ages 4 and 1, that are completely

fine and not getting sick when he is)We saw our Infectious Disease Dr

yesterday and she is not overally concerned.....First because he has

been pnuemonia and bacterial infection free for over 6 months (mostly

in part to our vigilent nebulizer treatments throughout the day and

keeping him secluded and home alot!) He still is sick about every 2

weeks with Viral Upper Respitory Infections which then escaltes into

respitory distress and ER visits. Last week he even stopped breathing

and lost conciousness....but that doesn't seem to bother anyone but me

(even his pulmonologist wasn't too concerned). She would like him to

get the Pnuemovax vaccine, which I think is ok since some people only

respond to one or the other for the pnuemococal titers. So that is ok

with me and if he does respond it may help. But she also wants him to

get his live vaccines which we have avoided....So that would be the

MMR and Varicilla as well. His appt is set for next Friday for this.

We also need to draw more blood to see how his deptithera and tetnus

titers are doing (she forgot last week). What I am wondering is does

it make sense to get the live vaccines? Both my mom and mother in law

who are icu/pediatric nurses are not convinced it is a good time. And

is it possible to have an immune problem where you only do not respond

to the Pnuemococcal titers? And when should I ask for the titers again

to see what is going on with the Pnuemovax? And one more, what is

considered normal loss of titers over time? Does anyone know how long

the prevnar and pnuemovax are supposed to last? I haven't found that

info yet.Thank you for all that are just reading this and those that

respond. I know I do alot of reading and not much posting, but this

group has been a Godsend to my family. A

>

December 6, 2008

HI

I was just wondering if your child takes steroids. I have two children. One

child has permanent lung damage. He was always getting sick and they kept

upping the steroids to where he was on 500 advair. We found out from all the

steroid use his adrenal gland was not working. When the adrenal gland does not

work you get a lot of infections and can go into a crisis situation. During the

crisis you become septic and can die (happened to our second child but her

asthma meds were only flovent 44-very low amount).

Both children were found to have low or no b Cells but normal IG's-(low but

normal)and normal t cells. My son had low HIB and they reshot him and he had a

response but a few years later he had no HIB, dipth, tetanus, no pneumonia.

Your situation reminds me of my family. I have four children two healthy and

two that have issues. BUT since we gained control over the adrenal

gland issue things have been much better! They do not get as sick as they use

to.

Feel free to email me. I usually never write here and I maybe a little off on

your situation. I don't always read all the messages.

I just wanted to let you know to look into other things just in case. I also

wanted to let you know that doctors overlook this issue. Some will say this is

not the norm and I would agree but it is worth doing blood work to look into

it. Google addison's disease, adrenal insufficiency, suppression of adrenal

glands from steroids.

Theresa

From: A <stina5997@...>

Subject: Vaccine titer info needed

Date: Friday, December 5, 2008, 11:06 AM

Hi all,

So I am asking for help understanding what my doctor is thinking....

is 2 years old and was revaccinated with Prevnar in March 08.

6 weeks later he was building a response but he latest blood work

done 2 weeks ago now shows he is once again losing the response. I

know we all lose a bit of the response but not to the extent he

does. THis is what we were looking for because he has done this in

the past. His IGG, IGA and IGM were in the lab's normal ranges, but

only be a few points. So he is the low end of normal. (also to

remind you all, I have 2 daughters as well, ages 4 and 1, that are

completely fine and not getting sick when he is)

We saw our Infectious Disease Dr yesterday and she is not overally

concerned... ..First because he has been pnuemonia and bacterial

infection free for over 6 months (mostly in part to our vigilent

nebulizer treatments throughout the day and keeping him secluded and

home alot!) He still is sick about every 2 weeks with Viral Upper

Respitory Infections which then escaltes into respitory distress and

ER visits. Last week he even stopped breathing and lost

conciousness. ...but that doesn't seem to bother anyone but me (even

his pulmonologist wasn't too concerned). She would like him to get

the Pnuemovax vaccine, which I think is ok since some people only

respond to one or the other for the pnuemococal titers. So that is

ok with me and if he does respond it may help. But she also wants

him to get his live vaccines which we have avoided....So that would

be the MMR and Varicilla as well. His appt is set for next Friday

for this. We also need to draw more blood to see how his deptithera

and tetnus titers are doing (she forgot last week).

What I am wondering is does it make sense to get the live vaccines?

Both my mom and mother in law who are icu/pediatric nurses are not

convinced it is a good time. And is it possible to have an immune

problem where you only do not respond to the Pnuemococcal titers? And

when should I ask for the titers again to see what is going on with

the Pnuemovax? And one more, what is considered normal loss of

titers over time? Does anyone know how long the prevnar and

pnuemovax are supposed to last? I haven't found that info yet.

Thank you for all that are just reading this and those that respond.

I know I do alot of reading and not much posting, but this group has

been a Godsend to my family.

A

December 7, 2008

Thank you to everyone that has chimed in on my questions. has

not been on oral steroids since 06/07. The Dr's originally thought

his titers were affected by the high dosage of prednisone he was on

from 02/07 - 06/07. He had RSV very badily in 01/07 and then it was

constant chest retraction. We finally got his chest retractions

under control with a mixture of nebulizer meds and a 9 month course

of zithromax (he tried pennicilian and bactrim and is allergic to

both). So we have been very creative on how to try and treat him to

avoid steroids except his daily pulmicort when he gets sick. They did

a bronchoscopy in 09/08 and we also found that on top of his asthma

he has laryngomalacia and tracheomalacia. He had surgery last month

to try and fix the laryngomalacia. So that just adds a bigger

complication to the URI's...and we now have pulmazyme, a CF med to

use when he is sick to try and clear out his chest.

In regards to his T and B cells, I was told that they checked his T

and B cells last June and we shouldn't be concerned....I specifically

asked about this at our appt last week to see if we should retest and

was told no.

As for a second opinion, we were sent to U of M to see an

immunologist who sent me home saying my son was fine and I was over

reacting. So at least this current Dr, the ped. infectious disease

specialist, agrees that needs to be followed. I think she is

hestitant to start IGG whithout better evidence because we have

avoided all steroids for a year and there have been no pnuemonias. I

am ok without IGG yet because I know is far from worst case

scenario, I am just frustrated that it has been so long and I feel

like we keep going in circles and wondering.

On a good note, we have qualified for the state's early on

program.....so hopefully this will help get him more speech and food

therapy as well as help our budget if this can be local!

Thanks again....it just feels great to know I am not alone and to

have you all helping me find what questions need to be asked.

A.

December 8, 2008

Just wanted to add my two cents worth... my son was on flovent, advair, and at

times when very ill prednisone -- all for recurring lung infections, pneumonia

-- to this day, when ill - it always goes right to his lungs. He receives

gammunex every four weeks.. last year he was diagnosed with adrenal

insufficiency and now takes cortef daily and we have an injection for

emergencies... Since starting the cortef.. he has grown - actually wants food!

He does not respond to any of the vaccines... as if he has never been

vacinated... so in addition to the CVID... the adrenal insufficiency being

diagnosed was a life saver and a big change for the better. So you never know

what else is going on with kids when they have an immune deficiency....

Phyllis - mom to Liam -12 - CVID

________________________________

From: Theresa Marks <tcm_marks@...>

@...

Sent: Saturday, December 6, 2008 11:59:56 AM

Subject: Re: Vaccine titer info needed

HI