diagnosis and prophalactic antibiotics

[Guest guest]

Hi. I posted a few months ago about my son. We had just found out he

had low vaccine responses, and I had not been able to get what his

diagnosis was. I asked his immuno this week if he has immune

deficiency and he said he has an antibody deficiency. From what I

have read this is a broad spectrum of deficiencies. Is that right?

What I have read also said they are a primary immune deficiency, so

what is the difference between antibody deficiency and immune

deficiency? Sorry for my ignorance.

Also the dr said after he gets over his current illness, he wants to

start him on a prophalactic abx, Bactrim. I know many of you must

have kids on prophalactic abx, do they have problems with superbugs,

and fugnal infections as a result. My daughter also has a serious

autoimmune disease and is maintained on steroids and chemo, and has

fought infections also for a long time. She went about a yr and a

half of constant abx for recurrent sinus and resp infections. The

abx got less and less effective, eventually she started getting the

superbugs that were antibiotic resistant, and impossible to get rid

of, then also got the dreaded fungal pulmonary infections too. After

several months of fighting serious infections, her dr(who is both

their immunologist and primary treating dr), told me she was in

danger of fatal infection if she got another, and all the

antibiotics had brought all this on. He said she can only do

antibiotics if life threatening infection. SO that is what we do now

and when she is on antibiotcs even when life saving they always

cause big problems now, with C diff infections, etc. So we now

treat her recurrent sinus infections with recurrent surgeries,

anytihng to keep her off abx. So of course this makes me very leary

about putting my son on daily Bactrim. The dr said if he still gets

breakthough infections we will do IVIG. Is it better to go straight

to IVIG, or is this common to do daily abx first then IVIG. ANy

help appreciated.

[Guest guest]

Selective antibody deficiency is probably what he is referring to. Most

older doctors consider an immune deficiency to be the broad spectrum of all

b-cells and sometimes a t-cell involvement. Your son probably has trouble

responding to vaccinations, developing his own antibodies to viruses and

bacteria but his other immune numbers might still be ok.

Antibody deficiency is a PID.

Our daughter has been off and on daily antibiotics since she was 2.

Superbugs are always a risk and worry. " Breakthrough " infections tend to be

handled by a more specific illness warranted antibiotic while the daily dose

is a more broad range " catch all " . Fungal or yeast infections can occur

with continued antibiotic use. Many patients use probiotics which replace

the good bacteria in the gut that is killed off by the drugs. Some patients

are also on a scheduled dose of anti-fungal med. Just depends.

The chemo your daughter is getting is having an effect on her t-cells. Your

sons deficiency is with his b-cells. In my laypersons opinion the t-cell

system fights more in the body so when it's killed off by any type of drug

opportunistic infections are going to run rampant. T-cells also fight

fungal infections so they weren't around to that either. While the yeast

will probably grow where the oral meds kill off the intestinal flora he does

still have a t-cell system to fight yeast in other areas that she is lacking

(resp, blood, heart, etc.).

Was your daughter on IV abx. or oral? Our daughter Macey has had several

sinus surgeries after oral and IV failed but ultimately the sinus surgeries

have failed too. We do sinus lavage with a Rhinoflow machine proactively

and chest CPT for different symptoms of drainage. That has helped alot.

My husband also has CVID and he has chosen to take daily abx with more

selective abx for breakthrough. He's been diagnosed 5 yrs now and chosen

not to do IgG replacement. Macey does both abx and IgG. It's a point of

contention around here what his quality of life would be like if he would

just give in and start.

Some doctors do like to start out with a trial of daily meds and see if that

will keep things under control. Keep the system sterile and hopefully

nothing will take hold.

Ursula - mom to Macey (10,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

Ursula - mom to Macey (10,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

[Guest guest]

Ursula,

Thank you so much for all the info. It really helps. You are right

he had normal or high levels of his immunoglubulins. He also has low

lymphs on all his cbc's, and I think from what I have read that is

part of it in some. Do you know if lymphopenia goes with PID, and

what type it goes with? I would assume it goes with any immune

deficiency drug related or otherwise. I know we always see it on my

daughter's cbc.

My daughter has done both IV and oral abx. We also have done the

nasal washes for years with her along with Flonase, and many of the

other sinus sprays. The trouble is when she is really badly

inflammed and infected the washes just kill her head from the

increased pressure of the water. They work well right after a

surgery for a couple of months until it all starts back up. Her

sinuses stay severely diseased all the time, no matter what we do.

Again, I really appreciate your help.

-- In , " Ursula Holleman " <uahollem1@...>

wrote:

>

> Selective antibody deficiency is probably what he is referring

to. Most

> older doctors consider an immune deficiency to be the broad

spectrum of all

> b-cells and sometimes a t-cell involvement. Your son probably has

trouble

> responding to vaccinations, developing his own antibodies to

viruses and

> bacteria but his other immune numbers might still be ok.

>

> Antibody deficiency is a PID.

>

> Our daughter has been off and on daily antibiotics since she was

2.

> Superbugs are always a risk and worry. " Breakthrough " infections

tend to be

> handled by a more specific illness warranted antibiotic while the

daily dose

> is a more broad range " catch all " . Fungal or yeast infections can

occur

> with continued antibiotic use. Many patients use probiotics which

replace

> the good bacteria in the gut that is killed off by the drugs.

Some patients

> are also on a scheduled dose of anti-fungal med. Just depends.

>

> The chemo your daughter is getting is having an effect on her t-

cells. Your

> sons deficiency is with his b-cells. In my laypersons opinion the

t-cell

> system fights more in the body so when it's killed off by any type

of drug

> opportunistic infections are going to run rampant. T-cells also

fight

> fungal infections so they weren't around to that either. While

the yeast

> will probably grow where the oral meds kill off the intestinal

flora he does

> still have a t-cell system to fight yeast in other areas that she

is lacking

> (resp, blood, heart, etc.).

>

> Was your daughter on IV abx. or oral? Our daughter Macey has had

several

> sinus surgeries after oral and IV failed but ultimately the sinus

surgeries

> have failed too. We do sinus lavage with a Rhinoflow machine

proactively

> and chest CPT for different symptoms of drainage. That has helped

alot.

>

> My husband also has CVID and he has chosen to take daily abx with

more

> selective abx for breakthrough. He's been diagnosed 5 yrs now and

chosen

> not to do IgG replacement. Macey does both abx and IgG. It's a

point of

> contention around here what his quality of life would be like if

he would

> just give in and start.

>

> Some doctors do like to start out with a trial of daily meds and

see if that

> will keep things under control. Keep the system sterile and

hopefully

> nothing will take hold.

>

> Ursula - mom to Macey (10,CVID) and (13)

> http://members.cox.net/maceyh

>

> Immune Deficiency Foundation http://www.primaryimmune.org

> Pediatric PID email list

> Modell Foundation http://jmfworld.org

> Ursula - mom to Macey (10,CVID) and (13)

> http://members.cox.net/maceyh

>

> Immune Deficiency Foundation http://www.primaryimmune.org

> Pediatric PID email list

> Modell Foundation http://jmfworld.org

>

[Guest guest]

In a message dated 4/6/2006 7:32:26 PM Central Standard Time,

smoot732000@... writes:

> The dr said if he still gets

> breakthough infections we will do IVIG. Is it better to go straight

> to IVIG, or is this common to do daily abx first then IVIG. ANy

> help appreciated.

>

Like so many things with PIDs, I think different docs have different

opinions. 's ID/Immuno did not even consider putting on prophylactic

abx,

she mentioned it as a possible therapy but stated she considered the risk of

superbugs too great. This was back when 's PID was much worse. When we

balked at IVIG (I wanted to do some research myself before I agreed to IVIG),

she

didn't offer abx in the meantime, she only suggested isolation. Now, I have to

interject that I didn't have utmost confidence in this doc, she never did a

thing that ever helped . Just telling you one doc's opinion on the matter.

Once improved up to the level of only having an antibody def., that doc

and others in the practice never mentioned proph. abx again... they expected

her just to sink or swim, which is what we've been doing pretty much from day

one anyway. Not that I'm bitter!

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 4/6/2006 7:32:26 PM Central Standard Time,

smoot732000@... writes:

> The dr said if he still gets

> breakthough infections we will do IVIG. Is it better to go straight

> to IVIG, or is this common to do daily abx first then IVIG. ANy

> help appreciated.

>

Like so many things with PIDs, I think different docs have different

opinions. 's ID/Immuno did not even consider putting on prophylactic

abx,

she mentioned it as a possible therapy but stated she considered the risk of

superbugs too great. This was back when 's PID was much worse. When we

balked at IVIG (I wanted to do some research myself before I agreed to IVIG),

she

didn't offer abx in the meantime, she only suggested isolation. Now, I have to

interject that I didn't have utmost confidence in this doc, she never did a

thing that ever helped . Just telling you one doc's opinion on the matter.

Once improved up to the level of only having an antibody def., that doc

and others in the practice never mentioned proph. abx again... they expected

her just to sink or swim, which is what we've been doing pretty much from day

one anyway. Not that I'm bitter!

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)