Re: No antibodies to Prevnar??

[Guest guest]

Amy, Hi my son Bradley was about the same age as when he was diagnosed

with IGA def. His titers showed that he did not respond to 4 of the 7 vaccines

in the prevnar immunization. They also believe it may be transit as he was

diagnosed so young. He is doing well this summer and since he had tubes put in

his ears he is doing good. He had croup 2x last winter and a few colds but

nothing major. I am a stay at home mom and I try to do my best to keep him away

from high risk areas. Bradley went on a 4 month antibiotic and then his numbers

were checked again but did not improve. They want him to have the pneumovax

shot before winter and then test his response to that as well. He will have his

titers checked again next year. I agree with you that it is so frustrating

waiting and wondering what is going on....if they missed anything. I don't know

that this helps at all but I would just ask as many questions as you can and

want to. I always take a list in to our ped and I email our immuno when I am

confused. I hope that is feeling well and that you get the answers you are

looking for.

Amy (mom to Bradley 2 IGA Def, partial antibody def, and 6 )

No antibodies to Prevnar??

Hello all, I just got the results back from the Immuno at s

Hopkins, and he believes does not have Selective IgA but rather

Hypogammuglobinanemia of Infancy (transient PID) YEA!!!

Unfortunately after this Dx was made the Prevnar titers came back

with little or no detectable response to and of the serotypes. What

does this mean? I know some of the mommies out there have gotten a

dx of CVID with this result - what should I expect? My PED keeps

telling me that many kids live heathly without ever developing

antibodies to vaccines? Does this mean my child might have an

actual PID? (Does this mean he has an immune system that does not

function properly?) I am so confused! has had 3 prevnar

vaccines initially, and my PED never gives the 4th (booster) unless

the child seems sickly or has reoccurrent ear infections. She

agreed to give him the 4th shot this past week, and now we have to

wait 4 more weeks, draw blood, wait another 2 weeks and hopefully et

the results (The Immuno is repeating the titers test) - I am really

frustrated with all this waiting, and test results.

Any infor would help, Thanks

BIG HUGS,

Amy ( Mother to now 17 month old , PID, GERD)

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[Guest guest]

Both of my children don't respond to Prevnar. My 2yo has had numerous

infections and has GI issues so with him we do IVIG every 4 weeks. My

daughter finally responded some to pneumococcal vaccine so we just

keep her boosted. Her response goes away after a certain amount of

time. So far we haven't figured out how long the cells are keeping

memory.

Our immunologist likes to wait 6 to 8 weeks for titers after doing

repeat vaccinations. She says you need that much time for accurate

response.

At present, my son's dx is functional antibody deficiency as he

doesn't respond well to all vaccines. My daughter they gave another

name that had something to do with her body's cells forgetting

(memory).

Good Luck

Jacquelin 4yo

Buddy aka Judson 2yo eosinophilic duodenum, eos colonitis,

esophagitis, GERD, gastroparesis, functional antibody deficiency

On Neocate One + via g-tube

> Hello all, I just got the results back from the Immuno at s

> Hopkins, and he believes does not have Selective IgA but

rather

> Hypogammuglobinanemia of Infancy (transient PID) YEA!!!

> Unfortunately after this Dx was made the Prevnar titers came back

> with little or no detectable response to and of the serotypes.

What

> does this mean? I know some of the mommies out there have gotten a

> dx of CVID with this result - what should I expect? My PED keeps

> telling me that many kids live heathly without ever developing

> antibodies to vaccines? Does this mean my child might have an

> actual PID? (Does this mean he has an immune system that does not

> function properly?) I am so confused! has had 3 prevnar

> vaccines initially, and my PED never gives the 4th (booster) unless

> the child seems sickly or has reoccurrent ear infections. She

> agreed to give him the 4th shot this past week, and now we have to

> wait 4 more weeks, draw blood, wait another 2 weeks and hopefully

et

> the results (The Immuno is repeating the titers test) - I am really

> frustrated with all this waiting, and test results.

>

> Any infor would help, Thanks

> BIG HUGS,

> Amy ( Mother to now 17 month old , PID, GERD)

[Guest guest]

Amy,

I wonder if the reason that has been dx with CVID is because they

tested his complement, t-cells and b- cells.. they way that I understood it is

that b-cells don't function correctly. I think that along with not

responding to the prevnar got him the dx of CVID.

I am not 100% sure on this. So if anyone else knows more, jump in.

Amy, mom to:

, 19 months old. CVID, MSPI, GERD, Asthma.. on Neocate, prevacid,

claritin, flovent, xopenex, and IVIG sub Q every two weeks (Carimune NF)

does not have Selective IgA but rather

Hypogammuglobinanemia of Infancy (transient PID) YEA!!!

Unfortunately after this Dx was made the Prevnar titers came back

with little or no detectable response to and of the serotypes. What

does this mean? I know some of the mommies out there have gotten a

dx of CVID with this result - what should I expect?

[Guest guest]

Amy,

My son was 7 when he was diagnosed with Selective Antibody Deficiency. By the

age of 6 he had had 6 surgeries in two years. He also frequently had swollen,

hot joints. Our local doctors were baffled and sent us to Stanford. At Stanford

(LPCH) they told us that they were going to start test from the ground up until

they found why this was happening. After several test it was found that

made no antibodies to pneumovax or prevnar but everything else was

fine..........IGG, IGA ,T and B cells. He also had to have another surgery

while we were at Stanford. His frontals were 100% blocked.

The immunologist and the ENT at LPCH decided that was a candidate for IVIG.

He has been on it for 7 years every three weeks.

While on IVIG did not need another surgery............We did trial off in a

few years ago and withing 6 months was back in the hospital for another

surgery. The doctors put him back on IVIG.

For his quality of life is greatly increased due to the IVIG. He still has

fatigue that he deals with, but nothing like it was before IVIG........Still has

the constant stuffy nose but it is not infected!

is now 14 1/2 and it looks like we will start Sub Q in two weeks. All we

are waiting for now is the insurance OK. I did call Bayer about Baygam. They

say Baygam is a wonderful product but Gammunx is newer goes through one more

filtering process. We have decided to go with Gammunex

Hope this helps

le

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Amy, I think you still have the possibility of this being transient.

The fact that he didn't make antibodies tells you that his Bcells

didn't work properly. That's why you've got the hypogam diagnosis at

this point. Will they work in the future? -- I hope so. But in the

mean time, you'll may get the recommendation to start IVIG or

prophylaxis antibodies until that happens. That depends on how

chronically sick is or has been recently. Sometimes they take a

" watch and see " approach if is doing relatively well. Your PED is

right that many kids live perfectly normal lives without building titers

to vacinnations. But.... the reason they check the Prevnar or the

Pneumovax is that it tells them the type of germs is not building

antibodies to (encapsulasted bacteria). And that type is the type that

causes sinus infections, lung infections, ear infections, gut

infections, etc. Without protection against these types of germs --

there is an increased risk of sinus and lung damage. There's no reason

for that to happen these days. Make sure that your pediatrician is

getting the Clinical Focus newsletter from IDF. To sign your doctor up

-- call the Immune Deficiency Foundation main office at 1-800-296-4433.

So in answer to your question. This test just shows that he currently

has hypogam or CVID -- BUT, it does not necessarily indicate a permanent

condition. I'm not sure what the diagnosis of THI is based on -- what

makes them think it is transient or not. But there's always hope!

Hope that helps,

In His service,

Dale

Amy wrote:

>Hello all, I just got the results back from the Immuno at s

>Hopkins, and he believes does not have Selective IgA but rather

>Hypogammuglobinanemia of Infancy (transient PID) YEA!!!

>Unfortunately after this Dx was made the Prevnar titers came back

>with little or no detectable response to and of the serotypes. What

>does this mean?

>