Re: Pneumovax

[Guest guest]

No problem!

I am still trying to get to the bottom of why Prevnar is not (seemingly)

available in Australia to use instead of the pneumovax for pre and post

testing. Can someone tell me who the manufacturer is so I can do some

investigating?

, what bad experiences has Chad had from the pneumovax??

Re: Digest Number 884

> >

> >

> > > ,

> > > Thank you. Are Chad's wounds (little abrasions from playing) slow

to

> > heal?

> > > 's often are. I don't know if she could be anemic. I think I

will

> > call the

> > > Ped. tomorrow and ask if she thinks the bruising warrants a check-up

or

> > > blood work. It just keeps worrying me and she is being more active now

> > > with the warmer weather. The bruises are either small or medium, no

huge

> > > ones. I found on the internet about bruising a side-effect of steriod

> use

> > (oral)but

> > > not listed under corticosteriods, inhaled. She also has several broken

> > capillaries

> > > on her little face. She is very petite. She took allergy shots for 5

> > years and

> > > they started helping in a few months from the start date. She stopped

> > getting

> > > frequent ear infections and also stopped the frequent really runny

nose

> > from

> > > allergies. She tested allergic to most of the pollens and animals and

> > molds.

> > > The doctor decided to limit her treatment to the trees and grasses she

> > would

> > > be exposed to more here because there were too many he said to put in

> the

> > > shot. He said we really needed to commit to 5 years and the frequency

of

> > > shots went down over the years. Her arms were so small at first they

had

> > to

> > > divide the dose between both arms(age 3, but really small and tiny)

and

> > she

> > > was so brave every time for the 1st shot, but cried for the 2nd arm.

As

> > soon

> > > as possible she went to one shot. The allergist/immunologist required

we

> > > wait 30 min. before leaving the Ped. after the shot. never had

a

> > systemic reaction, usually got a big or small hive at the shot site

> though.

> > > Their arms would be sore. She sometimes needed Benadryl or used

Claritin

> > > if already taking it that day. Often, she did fine and didn't need any

> > med.

> > > The Allergist was very strict about the Ped. checking the Peak flow

> before

> > > and after the shots and not giving shots during an asthma flare. My

son

> > who

> > > has CVID also took shots and had some mild systemic reactions where he

> > > got asthma symptons/coughing after the shot--just sometimes--but it

> scared

> > > me. We learned to premedicate him with Benadryl and watch the allergy

> > > mold count on shot days. He started getting large hives at the site

and

> a

> > very

> > > sore arm once he was on maintance and getting shots every 2 weeks or

> > > maybe it was at 3 weeks apart. He did better on the once a week shots.

I

> > was

> > > glad when it was over for him. did fine. She is much improved.

> > Still has

> > > problems during early fall, we think it is the ragweed.

> > > Jan, mom to Ben age 13 and age 9

> > >

> > >

> > >

> > > 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.

> > >

> > >

[Guest guest]

No problem!

I am still trying to get to the bottom of why Prevnar is not (seemingly)

available in Australia to use instead of the pneumovax for pre and post

testing. Can someone tell me who the manufacturer is so I can do some

investigating?

, what bad experiences has Chad had from the pneumovax??

Re: Digest Number 884

> >

> >

> > > ,

> > > Thank you. Are Chad's wounds (little abrasions from playing) slow

to

> > heal?

> > > 's often are. I don't know if she could be anemic. I think I

will

> > call the

> > > Ped. tomorrow and ask if she thinks the bruising warrants a check-up

or

> > > blood work. It just keeps worrying me and she is being more active now

> > > with the warmer weather. The bruises are either small or medium, no

huge

> > > ones. I found on the internet about bruising a side-effect of steriod

> use

> > (oral)but

> > > not listed under corticosteriods, inhaled. She also has several broken

> > capillaries

> > > on her little face. She is very petite. She took allergy shots for 5

> > years and

> > > they started helping in a few months from the start date. She stopped

> > getting

> > > frequent ear infections and also stopped the frequent really runny

nose

> > from

> > > allergies. She tested allergic to most of the pollens and animals and

> > molds.

> > > The doctor decided to limit her treatment to the trees and grasses she

> > would

> > > be exposed to more here because there were too many he said to put in

> the

> > > shot. He said we really needed to commit to 5 years and the frequency

of

> > > shots went down over the years. Her arms were so small at first they

had

> > to

> > > divide the dose between both arms(age 3, but really small and tiny)

and

> > she

> > > was so brave every time for the 1st shot, but cried for the 2nd arm.

As

> > soon

> > > as possible she went to one shot. The allergist/immunologist required

we

> > > wait 30 min. before leaving the Ped. after the shot. never had

a

> > systemic reaction, usually got a big or small hive at the shot site

> though.

> > > Their arms would be sore. She sometimes needed Benadryl or used

Claritin

> > > if already taking it that day. Often, she did fine and didn't need any

> > med.

> > > The Allergist was very strict about the Ped. checking the Peak flow

> before

> > > and after the shots and not giving shots during an asthma flare. My

son

> > who

> > > has CVID also took shots and had some mild systemic reactions where he

> > > got asthma symptons/coughing after the shot--just sometimes--but it

> scared

> > > me. We learned to premedicate him with Benadryl and watch the allergy

> > > mold count on shot days. He started getting large hives at the site

and

> a

> > very

> > > sore arm once he was on maintance and getting shots every 2 weeks or

> > > maybe it was at 3 weeks apart. He did better on the once a week shots.

I

> > was

> > > glad when it was over for him. did fine. She is much improved.

> > Still has

> > > problems during early fall, we think it is the ragweed.

> > > Jan, mom to Ben age 13 and age 9

> > >

> > >

> > >

> > > 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.

> > >

> > >

[Guest guest]

had a high fever for several days after he received the PPV

(pneumonvax). I know you didn't ask me, but I thought I'd share:0) AND

I have to say that ph never got the prevnar! He WAS scheduled to

have it several times.. but he never got it-- WHAT was I thinking???

Somewhere in there with 2 sick kids I forgot he never got it-- he is

supposed to get it! ARRRGH... is supposed to get the Prevnar 2

years AFTER the PPV-- I looked up the reasons, but forget them at the

moment.

Also-the Prevnar insert says that the PPV works about the same... I have

to find that darn inseretr so I can type it in word for word. I was

wondering why I would get ph the new Prevnar when the PPV works the

same-- I'll try to find it today and send out the info

--

~Pattie~

" a person's a person, no matter how small " ~~ Dr. Seuss

[Guest guest]

had a high fever for several days after he received the PPV

(pneumonvax). I know you didn't ask me, but I thought I'd share:0) AND

I have to say that ph never got the prevnar! He WAS scheduled to

have it several times.. but he never got it-- WHAT was I thinking???

Somewhere in there with 2 sick kids I forgot he never got it-- he is

supposed to get it! ARRRGH... is supposed to get the Prevnar 2

years AFTER the PPV-- I looked up the reasons, but forget them at the

moment.

Also-the Prevnar insert says that the PPV works about the same... I have

to find that darn inseretr so I can type it in word for word. I was

wondering why I would get ph the new Prevnar when the PPV works the

same-- I'll try to find it today and send out the info

--

~Pattie~

" a person's a person, no matter how small " ~~ Dr. Seuss

[Guest guest]

Hi ,

Thanks for your e-mail. I will hang in there. You too, okay? Take care.

Have a wonderful Easter. I will be out-of-town for a few days. Lee

[Guest guest]

,

Thanks for the tip with the Augmentin. I have been giving the antibiotic

to at the same time he has his Pediasure supplement, to reduce

stomach upset. Interestingly, I read the product information sheet today

for the first time since first started using Augmentin and it

mentions pale stools as a serious side effect of the drug. Hmmmm. Has me

thinking. Could the pale stools be a spin off of all the treatment

Augmentin used last year for the repeatitive pneumonias?? Does anyone know

why/how an antibiotic would cause pale stools?? Any leads so I have a basis

on where to head for researching would be appreciated!

The pale stools first started in November last year, AFTER another round

of Augmentin had finished. It continued until January, when the routine

prophylactic Serptra was stopped to trial the likelihood of that med being

the cause of s h/aches. With the diagnosis of CPH, Indomethicin was

started as h/ache prophylactic. began normal coloured stools a week

after the Septra stopped, but they returned within 3 weeks (while off

both Septra and Augmentin). Abdominal pain has remained constant. Another

3 weeks later and was on 14 days of Amoxcillan for his throat

infection, then changed to another 14 days of Augmentin for pneumonia and

tonsilitis, with no break between.

I think the immunos question of how well does off prophylactic

antibiotics has been answered! Regardless, as soon as this Augmentin course

is finished, he will be back on to the Septra once more, as a prophylactic

for his kidneys, let alone his respiratory system.

Re: Pneumovax

> >

> >

> > > had a high fever for several days after he received the PPV

> > > (pneumonvax). I know you didn't ask me, but I thought I'd share:0)

AND

> > > I have to say that ph never got the prevnar! He WAS scheduled to

> > > have it several times.. but he never got it-- WHAT was I thinking???

> > > Somewhere in there with 2 sick kids I forgot he never got it-- he is

> > > supposed to get it! ARRRGH... is supposed to get the Prevnar 2

> > > years AFTER the PPV-- I looked up the reasons, but forget them at the

> > > moment.

> > >

> > > Also-the Prevnar insert says that the PPV works about the same... I

have

> > > to find that darn inseretr so I can type it in word for word. I was

> > > wondering why I would get ph the new Prevnar when the PPV works

the

> > > same-- I'll try to find it today and send out the info

> > >

> > > --

> > > ~Pattie~

> > > " a person's a person, no matter how small " ~~ Dr. Seuss

> > >

> > >

> > >

> > > 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.

> > >

> > >

[Guest guest]

The only thing I can think of is lack of bile in the stool which is the

color. Has anyone done in liver function tests? It can be transient. BARBIE

[Guest guest]

,

Have you been told anything at all about the pale stools?

, Chad's mom

[Guest guest]

,No, I havent been told anything at all about the pale stools. No one

seems to know what is going on.

Re: Pneumovax

> ,

>

> Have you been told anything at all about the pale stools?

>

> , Chad's mom

>

>

> 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.

>

>

[Guest guest]

My boys both had elevated liver enzymes-- due to the SDS-- it is very

common in SDS. Tends to get beetter with age-- because they have

pancreatic insufficiency (fat malabsorption) they have pale/pasty yellow

stools A lot-- they do take pancreatic enzymes when they eat & they

help-- but they never have normal stools.

--

~Pattie~

" a person's a person, no matter how small " ~~ Dr. Seuss

[Guest guest]

I wanted to add that dark green or bright green stools indicate that

food is moving too quickly through the bowels...

floating stoools indicate that there is fat being malabsorbed ---

--

~Pattie~

" a person's a person, no matter how small " ~~ Dr. Seuss

[Guest guest]

Our $.02: In 's case, her Prevnar response alone could land her on IGIV

because she's already had pneumococcal meningitis. Immuno feels she has a

particular susceptibility to this. But I guess that's not a common reason.

More new labs back so I have to revise my signature, although there will

probably be more changes. IgA still low, even though they didn't do the " low

titer plate " like they should have. Her IgG came up great (yeah!) but didn't

check subclasses this time and I'm told that the #s aren't anything to

celebrate if the function isn't there. IgM is fine now too! But T-cells have

dropped. ?????????????

(hey, if it's not one thing....)

(mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not

on IGIV yet)

changed to

(mom to , age 2, antibody def, IgA def, partial T-cell def (CD3 &

CD19) - not on IGIV yet)

P.S. The famous immuno we talked to about mentioned that at the age of

two he would only expect her IgG to be in the 400's -- just info for other

parents of toddlers wondering about their level.

[Guest guest]

Our $.02: In 's case, her Prevnar response alone could land her on IGIV

because she's already had pneumococcal meningitis. Immuno feels she has a

particular susceptibility to this. But I guess that's not a common reason.

More new labs back so I have to revise my signature, although there will

probably be more changes. IgA still low, even though they didn't do the " low

titer plate " like they should have. Her IgG came up great (yeah!) but didn't

check subclasses this time and I'm told that the #s aren't anything to

celebrate if the function isn't there. IgM is fine now too! But T-cells have

dropped. ?????????????

(hey, if it's not one thing....)

(mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not

on IGIV yet)

changed to

(mom to , age 2, antibody def, IgA def, partial T-cell def (CD3 &

CD19) - not on IGIV yet)

P.S. The famous immuno we talked to about mentioned that at the age of

two he would only expect her IgG to be in the 400's -- just info for other

parents of toddlers wondering about their level.

[Guest guest]

- Macey has similar levels. Her IgG is 496 and pneumovax levels are

protective but not responding. She has had

two pneumonias and several sinus infections as well as several ear infections

since stopping. We have an agreement with

our pediatrician to aggressively treat any confirmed bacterial infections (xray,

CT or elevated wbc) with Rocephin shots

(1-2 gm injections) and vantin antibiotic. We also do a CT of her chest every

year to make sure her lung scarring

hasn't progressed from the pneumonias. Our agreement is that as long as her

lung function tests don't decline, her

coloring is good, no extreme fatigue (she always seems alittle tired) and no

blood infections then we will not restart

IVIG. Also complicating IVIG would be that Macey has few veins left and would

require another medi-port to continue

infusions. Also she had started having reactions to the infusions before they

were discontinued last year. She is 15

months out of her last infusion. We have also discussed using IM IgG if there

is a difficult infection to clear.

Boosting to clear the infection instead of just all out restarting infusions.

We will redraw Ig and pneumococcal levels

in the late fall and unless the pneumococcal levels are unprotective or the IgG

is less than 200 then she'll hopefully

continue off.

Anyway, that's what we're going through.

Ursula Holleman

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

Sensory Integration Disorder, Diabetes

Insipidus)

http://maceyh.home.att.net

[Guest guest]

,

I do know that IGG levels can be checked at anytime. It is the pre/post

titers to the immunization that need a minimum of at least 3 months to have

the IVIG totally out of your system. That is always what I have been told

even by Dr. Cunningham-Rundles at the conference this summer. She usually

pulls her patients off in April to test in September. I know at one point

gave a GREAT explanation as to why dealing with the half life of the

IVIG. Again, that is what we have been going by. I know you are scared and

it is the toughest decision to make when your child is sick and you are

afraid of repeating another pneumonia illness again. We have pulled Cassie

off of IVIG two times now because the immunologist has hopes that she may one

day outgrow her deficiency. Both times she has not mounted any response to

the immunizations and we were immediately restarted on the IVIG. Now, we

probably will not retest for a while. If someone else out there knows any

different, please let us know what you have heard. Hope everyone had a

wonderful weekend. Looks like Fall is right around the corner

Belinda Rose,

Mom to Allyssa (9) and Cassie (6), igg immunodeficient, asthma, chronic

sinusitis, IVIG for 4 years.

[Guest guest]

,

I do know that IGG levels can be checked at anytime. It is the pre/post

titers to the immunization that need a minimum of at least 3 months to have

the IVIG totally out of your system. That is always what I have been told

even by Dr. Cunningham-Rundles at the conference this summer. She usually

pulls her patients off in April to test in September. I know at one point

gave a GREAT explanation as to why dealing with the half life of the

IVIG. Again, that is what we have been going by. I know you are scared and

it is the toughest decision to make when your child is sick and you are

afraid of repeating another pneumonia illness again. We have pulled Cassie

off of IVIG two times now because the immunologist has hopes that she may one

day outgrow her deficiency. Both times she has not mounted any response to

the immunizations and we were immediately restarted on the IVIG. Now, we

probably will not retest for a while. If someone else out there knows any

different, please let us know what you have heard. Hope everyone had a

wonderful weekend. Looks like Fall is right around the corner

Belinda Rose,

Mom to Allyssa (9) and Cassie (6), igg immunodeficient, asthma, chronic

sinusitis, IVIG for 4 years.

[Guest guest]

Ursula,

We had the same reference #'s they used for Caelen. The hospital orders all

the specialty labs from Quest Diagnostics out of California. Hope this helps.

Belinda Rose,

Mom to Allyssa and Cassie, igg immunodeficient,asthma, sinusitis, IVIG

[Guest guest]

Ursula,

We had the same reference #'s they used for Caelen. The hospital orders all

the specialty labs from Quest Diagnostics out of California. Hope this helps.

Belinda Rose,

Mom to Allyssa and Cassie, igg immunodeficient,asthma, sinusitis, IVIG

[Guest guest]

I meant to say that our local children's hospital uses Quest Diagnostics.

Hope that did not sound too confusing.

Belinda Rose

[Guest guest]

I meant to say that our local children's hospital uses Quest Diagnostics.

Hope that did not sound too confusing.

Belinda Rose

[Guest guest]

the Ig's can be checked at anytime but during IVIG they won't be the patient's.

The Ig's will be passive (meaning the

patient's system didn't have to do anything to get them, they were just infused

in). To get active immunity (something

the patients' system does itself to replenish the numbers) levels the patient

must be off IVIG for 3 months. It's

possible that he went off in early April and had levels drawn in late June.

that would make 3 months. In 98 when

Macey was trialed off the first time I know Dr. Harville ordered the testing

done 2 weeks early because Macey had been

septic with the line infection and we needed to know if IVIG should be

continued. Levels came back still low and she

was restarted.

Ursula Holleman

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

Sensory Integration Disorder, Diabetes

Insipidus)

http://maceyh.home.att.net

[Guest guest]

the Ig's can be checked at anytime but during IVIG they won't be the patient's.

The Ig's will be passive (meaning the

patient's system didn't have to do anything to get them, they were just infused

in). To get active immunity (something

the patients' system does itself to replenish the numbers) levels the patient

must be off IVIG for 3 months. It's

possible that he went off in early April and had levels drawn in late June.

that would make 3 months. In 98 when

Macey was trialed off the first time I know Dr. Harville ordered the testing

done 2 weeks early because Macey had been

septic with the line infection and we needed to know if IVIG should be

continued. Levels came back still low and she

was restarted.

Ursula Holleman

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

Sensory Integration Disorder, Diabetes

Insipidus)

http://maceyh.home.att.net

[Guest guest]

I'm not familiar with those reference ranges so I apologize if I made it sound

like the 200 was the gold standard. Go

by what the lab running the test lists as a reference range. Using that it

would seem that Caelan's levels are

unprotective. Do you mind if I ask what lab resulted the blood work for your

doctor? I'm always curious to see new

ranges and new labs that are doing immune testing.

Ursula Holleman

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

Sensory Integration Disorder, Diabetes

Insipidus)

http://maceyh.home.att.net

[Guest guest]

Ursula,

On the sheet it says " THis test was develped and its performance

characteristics determined by Quest Diagnostics, Nichols Insititute. It has

not been cleared or approved by the FDA. The FDA has determined that such

clearance or approval is not necessary. Quest Diagnostics Inc. San

Capistrano CA.

I know that previous tests we have had were performed by Children's

Immunoparameters lab in Florida.

[Guest guest]

The 200 number is used with the pneumovax titer levels at some lab facilities.

Ursula Holleman

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

Sensory Integration Disorder, Diabetes

Insipidus)

http://maceyh.home.att.net