question

[Guest guest]

Your right recessive means 25% chance, like you we have two sons with CVID.

God Bless,

, , 12 yr with CVID, severe steroid dependent asthma, GERD, much

more, Cameron

6 yr old with CVID, severe steroid depend. asthma. Rodney 12 yr old,

10 yr old.

Re: Question

> Hi,

> My immunologist told me there is a 10% chance (during lifetime) same for

> the next generations and for parent (mom or dad). However I have two

> children and both have low IGG and one has also low IGA.

>

> Nica

>

> On Fri, 16 Feb 2001 10:01:38 -0600 " sandraray "

> writes:

> > What are the chances that the new baby will be IgG deficient as well?

> > My oldest child is non-PID, so I'm thinking the chances are 50-50.

> > Is that about right?

> >

> > Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

> > asthma, chronic sinusitis, and allergies), and Duncan Avery due

> > 5/17/01

> >

> >

> >

[Guest guest]

Traci--Just one point in response--YES, an overall okay IgG level can

mask important deficiencies in subclasses. Very important to check them

out!! Maurita, mom to Wes sel IgA def, chronic sinusitus, still

unbelievably active, , and

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[Guest guest]

Traci--Just one point in response--YES, an overall okay IgG level can

mask important deficiencies in subclasses. Very important to check them

out!! Maurita, mom to Wes sel IgA def, chronic sinusitus, still

unbelievably active, , and

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[Guest guest]

Traci--Just one point in response--YES, an overall okay IgG level can

mask important deficiencies in subclasses. Very important to check them

out!! Maurita, mom to Wes sel IgA def, chronic sinusitus, still

unbelievably active, , and

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[Guest guest]

Thanks Maurita, But why do these doctors refuse to chech her

subclasses?-Traci Hayli and Sydni's mom

[Guest guest]

Thanks Maurita, But why do these doctors refuse to chech her

subclasses?-Traci Hayli and Sydni's mom

[Guest guest]

Not sure if this was sent yet, so here is my question again-thanx

traci

[Guest guest]

Not getting most mail again but I'll ask a question anyway.

has a cold now (fun, fun...still on Omnicef for both ears) -- will

Donatussin work for drying up the fluid behind her eardrums as well as the

cold symptoms? She hated the Dimetapp Infant and I don't think I'll be able

to force that down again.

Donatussin is gross too, but she's had it so many times before she can

tolerate it.

She won't blow her nose and won't allow bulb syringe, so other than steamy

baths and meds, is there anything to help with the congestion? She hates it

and is crabby and crying all the time because of it. Also complaining about

her mouth... ???

Thanks --

(mom to , age 2, polysaccharide antibody def, IgA def)

[Guest guest]

kelly,

when colton has a cold we use J & J vapor bath and pedimist(its a nasal saline

in a mist} it seems to be the best nasal spray because they cant even feel it

going in their nose. also, sudafed elixir and triaminic nightime i think its

the one with tylenol in it. the dr said you can use it during the day it

doesnt make colton sleepy those are the ones i like. colton is on zyrtec for

maintaince.

hope this helps,

charlotte mother of brandon 15, jordan 11, and colton cvid

[Guest guest]

Maurita,

Do you see Dr. Gupta at UCI in Orange county? We see him also. I am mostly

a lurker here as I don't have much time to respond, but your post caught my

interest.

We live in Orange County CA and I have 2 sons with CVID. One of them has an

appt on Weds also.

Let me know if this is the same Dr. Gupta. I thought I was the only So CA on

the list.

( 15 CVID, 9 CVID, 16 allergies)

[Guest guest]

Traci--no one has actually refused to check subclasses, just one doc who

argued with me, but relented..he was just an allergist/immuno who had

worked with our immuno years ago on pid research, but obviously had not

kept up with what was discovered! We just happened to be chekcing

allergies, and he wanted to recheck the ig levels.

We see Dr. Gupta Wednesday. Hopefully he will be of help once again.

'

Maurita, mom to Wesley, ,

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[Guest guest]

,

As the mom of a teen with CVID I would like to know how your boys

are doing? We live in TX. Have you seen any improvement in health or

IGG levels with your older son? Sorry to bug you, but I appreciate any info

and hope your boys are doing well.

Jan, mom to Ben 13 CVID, SDS, and 10 allergies, asthma

Mediscribe@... wrote:

> Maurita,

>

> Do you see Dr. Gupta at UCI in Orange county? We see him also. I am mostly

> a lurker here as I don't have much time to respond, but your post caught my

> interest.

> We live in Orange County CA and I have 2 sons with CVID. One of them has an

> appt on Weds also.

>

> Let me know if this is the same Dr. Gupta. I thought I was the only So CA on

> the list.

>

> ( 15 CVID, 9 CVID, 16 allergies)

>

> 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]

--yes! I'm sure it's the same--Sudhir Gupta--i thought i was the

only one in So Ca, too! I'm in Fullerton, how about you?

I was very encouraged by the visit with dr. Gupta. He said to keep an

annual eye on Wesley's IgG levels, they did not currently warrant IVIG

consideration, but that may indeed change. He could not comment on if

they had dropped, as the original labwork was done at a different lab, as

we all knwo, you cannot compare. He also said that Selective IgA def.

simply means that is the only problem with the immune system, no other

parts affected, it did not mean that he has no iga (but he has none, i'm

not sure how i got mixed up, i was so sure he meant -on the last visit-

that designation referred to his complete lack of it--oh, welll, just

semantics).

For me, he ran a bunch more tests to screen autoimmune stuff. I'll get

the results next wed. He said, even if i do have an autoim. thing, a

pregnancy would not accelerate its development, could, in fact, slow down

its development. That was the first green light i was looking for, and

so relieved to find it. He also has his specialty in OB, and was humbly

offended that my ob's thought he would have no such knowlege, and said he

has taken a number of women w/pid's thru pregnancy, and that IVIG had

helped quite a few women with miscarriage histories similar to mine. His

wife is a practicing OB, and she also heads up the IVIG infusion center

at UCI hospital, in Orange. So i may consider her for my care should

we conceive again....no problem in getting her to consult with my immuno,

eh? He declined my request to be my OB dr, too....

Wesley has LOOKED awful for a few days, and had a really awful day

behaviorally today....i keep looking for clear symptoms...he is terrible

at articulating how he feels physically. Any ideas on how i can teach

him to be alert to things like sore throat, headache, achiness? These

are usually my first symptoms...any one else's pumpkins have other subtle

initial symptoms? Most of you seem to see big dramatic ones.

One last thing--sorrythis is so long--Dr. Gupta said that there is

nothing that boosts antibody production. The problem with probiotics,

HSO's, etc, is that the " healthy " bacteria become pathogenic in PID

people. So either way, that stuff is dangerous. Glad to know!

Maurita, mom to Wesley, 6, iga def, , 5, 2, and is potty

training himself! Whoopeee!!!!!!!!!

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[Guest guest]

Just a question I have not been able to clarify. I have heard both ways thay

hypo and dysgamm are the same as CVID and the hypo and dys are separate

immune disorders. Anything in writing anywhere? My immuno says that you have

to wait and see if it is CVID. Based on whether they get the autoimmune

concerns. Lucas has hypogamm and dysgamm and initally no IgA and now a low

IgM which makes me think that he is possibly CVID he also has bowel problems

that get much better with prednisone when we treat his moderately severe

asthma. I know it is still wait and see and does not really matter but I am

interested. Barbie

[Guest guest]

Just a question I have not been able to clarify. I have heard both ways thay

hypo and dysgamm are the same as CVID and the hypo and dys are separate

immune disorders. Anything in writing anywhere? My immuno says that you have

to wait and see if it is CVID. Based on whether they get the autoimmune

concerns. Lucas has hypogamm and dysgamm and initally no IgA and now a low

IgM which makes me think that he is possibly CVID he also has bowel problems

that get much better with prednisone when we treat his moderately severe

asthma. I know it is still wait and see and does not really matter but I am

interested. Barbie

[Guest guest]

:

Don't know for sure but I would guess they mean Selective IgA -- only because

I was told you sometimes see someone else in the family line with Selective

IgA when there's a CVID patient.

Hope that helps, but it's just a guess.

OH!!! But my next question would be, who told them that? Because when they

did the first tests for her ped didn't really understand them, and he

told us Selected IgA def, even though all numbers were low (he just didn't

know any better). Then further testing by immuno found all sorts of problems,

CVID, antibody problems, etc. Then after she turned two yrs old some numbers

came up, hence the " latest " diagnosis in my signature. It's always

complicated, isn't it.

(mom to , age 2-1/2, polysaccharide antibody def, IgA def)

[Guest guest]

:

Don't know for sure but I would guess they mean Selective IgA -- only because

I was told you sometimes see someone else in the family line with Selective

IgA when there's a CVID patient.

Hope that helps, but it's just a guess.

OH!!! But my next question would be, who told them that? Because when they

did the first tests for her ped didn't really understand them, and he

told us Selected IgA def, even though all numbers were low (he just didn't

know any better). Then further testing by immuno found all sorts of problems,

CVID, antibody problems, etc. Then after she turned two yrs old some numbers

came up, hence the " latest " diagnosis in my signature. It's always

complicated, isn't it.

(mom to , age 2-1/2, polysaccharide antibody def, IgA def)

[Guest guest]

:

Don't know for sure but I would guess they mean Selective IgA -- only because

I was told you sometimes see someone else in the family line with Selective

IgA when there's a CVID patient.

Hope that helps, but it's just a guess.

OH!!! But my next question would be, who told them that? Because when they

did the first tests for her ped didn't really understand them, and he

told us Selected IgA def, even though all numbers were low (he just didn't

know any better). Then further testing by immuno found all sorts of problems,

CVID, antibody problems, etc. Then after she turned two yrs old some numbers

came up, hence the " latest " diagnosis in my signature. It's always

complicated, isn't it.

(mom to , age 2-1/2, polysaccharide antibody def, IgA def)

[Guest guest]

- selective would just usually mean that the

deficiency is limited to only one immune area. Either

just an IgG or just an IgA or just an antibody problem.

There is a PID called Selective antibody deficiency

because usually the antibodies don't respond to

vaccination but the patient could have normal IgG

levels. Did they say which area is deficient?

Selective to me would mean it's just limited to that one

area.

Many CVID patients have family members with IgA

deficiency. Macey has CVID and I've been diagnosed with

a complement deficiency. Both are different parts of

the immune process but somehow they think it's related.

What type of treatment have they suggested for your

niece?

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

http://groups.yahoo.com/group/PedPID

[Guest guest]

- selective would just usually mean that the

deficiency is limited to only one immune area. Either

just an IgG or just an IgA or just an antibody problem.

There is a PID called Selective antibody deficiency

because usually the antibodies don't respond to

vaccination but the patient could have normal IgG

levels. Did they say which area is deficient?

Selective to me would mean it's just limited to that one

area.

Many CVID patients have family members with IgA

deficiency. Macey has CVID and I've been diagnosed with

a complement deficiency. Both are different parts of

the immune process but somehow they think it's related.

What type of treatment have they suggested for your

niece?

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

http://groups.yahoo.com/group/PedPID

[Guest guest]

ursula she told me that they told her something to

this affect that her body could take care of protein

but not sugar coated, i belive that is what she said,

but i will find out more this week, they are going to

try to trick a response from her..whatever that

means..they have her on preventative antibiotics, she

also has asthma and are treating her for that as

well..thanks for all the info karen

--- uahollem@... wrote:

> - selective would just usually mean that the

> deficiency is limited to only one immune area.

> Either

>

> http://groups.yahoo.com/group/PedPID

>

__________________________________________________

[Guest guest]

ursula she told me that they told her something to

this affect that her body could take care of protein

but not sugar coated, i belive that is what she said,

but i will find out more this week, they are going to

try to trick a response from her..whatever that

means..they have her on preventative antibiotics, she

also has asthma and are treating her for that as

well..thanks for all the info karen

--- uahollem@... wrote:

> - selective would just usually mean that the

> deficiency is limited to only one immune area.

> Either

>

> http://groups.yahoo.com/group/PedPID

>

__________________________________________________

[Guest guest]

Sounds like a polysacchride antibody deficiency.

The " trick " would probably be the new Prevnar

vaccination which is conjugated and is known to try to

trick the IgM to switch to the IgG antibody which tends

not to happen with antibody deficiency.

Good luck

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

http://groups.yahoo.com/group/PedPI

D

[Guest guest]

Sounds like a polysacchride antibody deficiency.

The " trick " would probably be the new Prevnar

vaccination which is conjugated and is known to try to

trick the IgM to switch to the IgG antibody which tends

not to happen with antibody deficiency.

Good luck

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

http://groups.yahoo.com/group/PedPI

D

[Guest guest]

's doctors have told me that his " immune system is full

> of holes--it picks and chooses what will work and what won't work with no

> real pattern to it " . Some of his antibodies work, others don't--both with

> polysaccharide and proteins. There seems to be no rhyme or reason to how

> his sub-class numbers come out--sometimes it's low in 1 and 4, sometimes

> it's 1 and 3, and the last time it was 1 and 2. Same with his IgG's and

> IgM's, These numbers have a large fluctuation to them--except the IgG's

> while on IVIG.

>

> Just my .02.

>

> -mom to , 8, dysgammalgobulinemia, etc; ,10; ,3.

>

,

I am considering sending your e-mail on to our ped. The " hole in the immune

system " theory seems to sound exactly like Autumn. She'll mount partial

responses with both b & t cell tests; her IgG #'s fluctuate, especially

between subclasses 1,2, & 4; she's sick all the time, but not always for the

same reason. In this respect, she sounds just like . The only

difference is that Autumn is not considered an IVIG candidate. Do your docs

have any research (other than anecdotes) to back up their theory?

Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG Def., asthma,

chronic sinusitis, and allergies), and Duncan Avery, 5 months