Re: Pneumoccacal antibody def.?

[Guest guest]

Hi

My son was tested with the Pneumovax and so was I - they didn't have the

Prevnar back then (3 or 4 years ago) at least I don't think they did. Anyway,

Sam who is 5 1/2 now had a better response to the Pneumovax than I did, so he

got diagnosed with " only " IgA deficiency and I got the diagnosis of IgA

deficiency and selective antibody deficiency. Anyway, I don't know a whole

lot about this illness in children. I do know more about immune deficiencies

in adults simply b/c over the last 3 years I've had to learn more b/c of my

own pid. Anyway, it just seems to me, no medical background here, that your

child has been awfully sick and that the IVIG is helping him - so, I geuss,

it surprises me that they took him off the gamma.

Anne - IgA deficiency, selective antibody deficiency

mother of Sam (5, IgA deficiency) and Ash (a 10 month old little squirt)

[Guest guest]

Hi

My son was tested with the Pneumovax and so was I - they didn't have the

Prevnar back then (3 or 4 years ago) at least I don't think they did. Anyway,

Sam who is 5 1/2 now had a better response to the Pneumovax than I did, so he

got diagnosed with " only " IgA deficiency and I got the diagnosis of IgA

deficiency and selective antibody deficiency. Anyway, I don't know a whole

lot about this illness in children. I do know more about immune deficiencies

in adults simply b/c over the last 3 years I've had to learn more b/c of my

own pid. Anyway, it just seems to me, no medical background here, that your

child has been awfully sick and that the IVIG is helping him - so, I geuss,

it surprises me that they took him off the gamma.

Anne - IgA deficiency, selective antibody deficiency

mother of Sam (5, IgA deficiency) and Ash (a 10 month old little squirt)

[Guest guest]

In a message dated 1/9/02 6:24:14 AM Pacific Standard Time, areckling@...

writes:

> , that your

> child has been awfully sick and that the IVIG is helping him - so, I geuss,

>

> it surprises me that they took him off the gamma.

>

Hi,

He was taken off because he had done so well while on IVIG and had been on it

for four years, that they wanted to retest his immune system. has

always had good IGG levels its the lack of an antibody response that put him

on IVIG.

He did well for three months off then started the decline. The doc was ready

to put him back on IVIG if he showed no response to the Prevnar..............

Well its a mixed blessing that he responded to 3 out of 6 serotypes!! Doc

wants to wait and give it more time..........Im upset because I see how he is

struggling and I know there is a med that will help him!!!

We see the doc on the 24th and if is not any better the " she bear " in

me might come out Just kidding but we will have to take a harder look

at what the plan is.

Here is an example : On Dec 29th had a two hour gymnastics practice.

He did great! Got in the car and fell asleep........We were on our way to a

family Christmas party......We got there and was still asleep, I tried

to wake him but he said he needed to sleep, Now at this party there are 25

kids running around and mine is asleep, an hour into his " nap " I tried waking

him again......time to open presents..........he didn't want to get up

yet...............so we waited for one more hour then he woke up. Poor kid,

puffy eyes and very little energy!

It is so bizarre.........he has the energy to do gymnastics but after that

he is on low.

Anyways Im rambling, sorry

le

11, Selective Antibody Def., IVIG for 4 years, every 3 weeks.

Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01... Biopsy of throat and Nasal endoscopy 10/24/01

[Guest guest]

In a message dated 1/9/02 6:24:14 AM Pacific Standard Time, areckling@...

writes:

> , that your

> child has been awfully sick and that the IVIG is helping him - so, I geuss,

>

> it surprises me that they took him off the gamma.

>

Hi,

He was taken off because he had done so well while on IVIG and had been on it

for four years, that they wanted to retest his immune system. has

always had good IGG levels its the lack of an antibody response that put him

on IVIG.

He did well for three months off then started the decline. The doc was ready

to put him back on IVIG if he showed no response to the Prevnar..............

Well its a mixed blessing that he responded to 3 out of 6 serotypes!! Doc

wants to wait and give it more time..........Im upset because I see how he is

struggling and I know there is a med that will help him!!!

We see the doc on the 24th and if is not any better the " she bear " in

me might come out Just kidding but we will have to take a harder look

at what the plan is.

Here is an example : On Dec 29th had a two hour gymnastics practice.

He did great! Got in the car and fell asleep........We were on our way to a

family Christmas party......We got there and was still asleep, I tried

to wake him but he said he needed to sleep, Now at this party there are 25

kids running around and mine is asleep, an hour into his " nap " I tried waking

him again......time to open presents..........he didn't want to get up

yet...............so we waited for one more hour then he woke up. Poor kid,

puffy eyes and very little energy!

It is so bizarre.........he has the energy to do gymnastics but after that

he is on low.

Anyways Im rambling, sorry

le

11, Selective Antibody Def., IVIG for 4 years, every 3 weeks.

Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01... Biopsy of throat and Nasal endoscopy 10/24/01

[Guest guest]

In a message dated 1/9/02 12:17:11 PM Pacific Standard Time, uahollem@...

writes:

> Has he been tested for mono?

>

>

Ursula,

He has not recently been tested for mono. Sounds like a good idea! I'll be

calling the doctor this week, due to the fact that I don't think Ceftin is

helping.....he has been on it for a month now, I'll mention mono testing.

Thanks

le

11, Selective Antibody Def., IVIG for 4 years, every 3 weeks.

Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01... Biopsy of throat and Nasal endoscopy 10/24/01

[Guest guest]

In a message dated 1/9/02 12:17:11 PM Pacific Standard Time, uahollem@...

writes:

> Has he been tested for mono?

>

>

Ursula,

He has not recently been tested for mono. Sounds like a good idea! I'll be

calling the doctor this week, due to the fact that I don't think Ceftin is

helping.....he has been on it for a month now, I'll mention mono testing.

Thanks

le

11, Selective Antibody Def., IVIG for 4 years, every 3 weeks.

Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01... Biopsy of throat and Nasal endoscopy 10/24/01

[Guest guest]

le - Macey's had 2 Prevnar vaccinations in the hope that she would

respond. The Prevnar is supposed to be made

now so that it tricks something in the immune system to class switch antibody

function from IgM to IgG (which is an

early response). That's the difference between it and the pneumovax. Has he

been tested for mono?

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus,colonic inertia)

http://maceyh.home.att.net