Re: I'm new and my son is having surgery Thursday

[Guest guest]

In a message dated 12/5/2004 8:31:33 PM Eastern Standard Time,

itabitadog@... writes:

and is going to biopsy to see if reflux is

contributing (this I don't follow, Chase had reflux BAD as a baby,

but I'm not following connection as a 3 year old).

Reflux can happen from newborns to adults. Reflux can cause Asthma. So that

is why he is checking it. My son was born with reflux as many babies are. We

were told he would out grow it. We thought he outgrew it. He started getting

asthma so we took him to a allergist and he asked about reflux. He said that

could be it. Put him on Prilosec and his asthma is a rare occasion now. Like

a miracle. That is how I learned about it.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Hi and welcome.

My son is almost 2 and has been on IVIG for about 5 months. He has very low

normal numbers from all the IG's but makes no prevnar titers and is sick all

the time. I just want to throw that out there,in case they have tested

Chase's. Nick has that cough, that you swear is pnuemonia with how rattly

his chest is. The first time it ever went away was about a month after

starting IVIG. He is also dx with asthma and that cough and chest rattling

still comes back with every illness, but it now can go away for short

periods of time. Good luck with the surgery and keep us updated.

Amy,

mom to , 23 months, CVID, asthma, GERD, on prophalatic abx and IVIG

every 4 weeks, flovent, xopenex and albuterol, claritin. Allergic to milk,

soy and latex.. among other things.

I'm new and my son is having surgery Thursday

>

[Guest guest]

Hi, Charity. I am new to this group as well and can totally relate to what you

are, and have, gone through with trying to find answers and keeping Chase as

healthy as possible. My in-laws and own sister are willfully ignorant about

taking precautions (e.g., hand washing) and critisize us constantly...they just

don't get it. I could tell you one thousand stories but my guess is that most

of us have already been there...done that. Please know that we are all on your

side...obviously, you are NOT a hypochondriac. My daughter has IgA deficiency

too (and low everything else) and is doing 100% better with IVIG. But, she

still wakes up screaming bloody hell from gut pain (we think) and so we are

still looking for answers. My daughter just turned three as well. Happy

Birthday to Chase! Let us know how things go.

(mom to la--low and deficient Igs, variable T-cell function, was

severe chronic c.dif relapser, gut motility???, immune problems still under

investigation)

charity_ztel <itabitadog@...> wrote:

Hello everyone.

I'm a little nervous about posting, truthfully, simply because my

family's problems seem miniscule to some of yours and I feel like I

did when Chase (my son) was born and put in the NICU -- out of

place...

When Chase was born, he was 9 lbs 6.5 oz. A HUGE boy...but he had a

ton of fluid in his lungs, so off to NICU he went. He was so out of

place in that ward with all of those struggling little teeny babies.

But, there he was, struggling too, as large and pink as he was. So

twilight zone!

Fast forward 8 months later. He starts full time daycare (prior to

that he was part time daycare in a home day care, full time was in a

facility) and he starts up CHRONIC ear infections. I mean every 2

weeks. Pedi says it's normal until it went on for 5 months. Finally

refers us to ENT. ENT gives tubes, sends us on our way. Seems to fix

problem with ears, but at the same timeframe (12 months old) he

starts a junky cough. Pedi says " asthma " , gives us

nebulizer/steroids.

Fast-forward to 25 months old....13 months of steroids, 2x a day, no

improvement in the cough, constant colds and random illnesses. I

finally tell the doctor -- enough is enough, something is wrong.

Even asthmatics don't cough this much. I change pedis.

2nd Pedi, first visit, tells us that his son is IGA deficient and he

believes, from looking at Chase's chart that Chase is too. He refers

us to Immunologist/Allergist for testing. Fast forward 1 month.

Chase tests 16 total on IGA, do not know subclasses. IGM, IGG are

ok. Blood allergen testing elevated (270+ when should be under 90)

but individual serum testing would not be effective at his age, so

the only allergen testing done is for indoor allergies. Tests

positive for all indoor allergens. We get off the asthma steroids

and meds, try several diff allergy meds until we find Ryna 12x.

Expensive and extremely difficult to administer (thick) but works.

Put on amoxycillin for provolactic care for IGA, no IVIG since that

is not effective for IGA. Amoxycillin turns out to be like eating

Pez for Chase, so he gets taken off.

Chase has been on every antibiotic under the sun that I know of and

he has been unable to kick that cough that he has since he was 12

mos old. Immunologist says he cannot treat beyond Amoxycillin, sends

us back to Pedi. Pedis done all he can do, sends us to a different

ENT.

Fast forward to last week. ENT is extremely concerned by x-ray and

office exam. Says he detects possible permanent sinus damage. Wants

to do immediate exploratory and biopsy of his sinus membranes to

find out what we are dealing with up there. Figures if he can find

out what bacteria is growing up there, maybe we can determine what

antibiotic treatment we can use (my thoughts: " there's another one

he hasn't been on? " ). Also going to check adenoids and possible

remove, check to see if he needs 2nd set of ear tubes -- still lots

of fluid in ears, and is going to biopsy to see if reflux is

contributing (this I don't follow, Chase had reflux BAD as a baby,

but I'm not following connection as a 3 year old).

I want answers, but as any parent, I'm nervous about him going under

and I'm even more nervous about the answers. I feel bad about how

full his sinuses are. I'm a chronic migraine sufferer, I have tested

positive for every allergen except mold, and I too am IGA deficient

(total number is 31). I know how his head must feel every day when

he wakes up. Sad thing -- I don't think he knows what it is to have

a " clear " head. Like all of you, we just want our kids to be healthy.

So there I go with my pity party, which I shouldn't because

thankfully my son is overall healthy considering.

What ticks me off the most, though, is people in my family. KNOWING

Chase has surgery this week, my sister-in-law brought her very sick

child to my son's bday party yesterday and had her around my 11 mo

old daughter. So my daughter has been exposed to his virus and if

she gets it, will expose my son and may delay his procedure. It

amazes me how strangers and even your own family have no

consideration for others and just pass their germs on to others. I

probably would have never noticed if it weren't for Chase's

challenges. I'm constantly washing his hands, washing the toys and

stuff around here when kids leave or when one of them are sick, and

constantly having to find ways to politely get people (older ones

especially) out of their face in public.

sorry to vent my first time in, but there's no one I know who

understands. My own sister thinks I'm a hypochondriac when it comes

to my son. She actually told me that she thinks I " need " him to be

sick for me to be " healthy " ...What kind of nonsense is that? The

visits to the doctor are aggravatingly constant, the prescriptions

expensive, and the answers are always dead ends. And I have

it " good " in comparison to most. As you can see, I feel up against

the wall here and I'm glad I found a place where others talk about

this stuff.

Thanks for listening/reading. I promise next time I won't be so long

winded.

Charity, mother of Chase, 3 years old yesterday. IGA deficient,

chronic sinus/ear infections, headaches, and moody as all heck.

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.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

Charity:

First off, welcome! I hope you will get as much out of this wonderful group

as I have, and I've been here for years. I've decided that pretty much nobody

on earth understands what we go through other than other parents of PID kids. I

know what you are going through with your sister, people just cannot get the

info through their thick skulls.

When we determined that 's GERD was from dairy, we mentioned to someone

she's allergic to dairy (in hindsight, it's more of a dairy intolerance, but

the general layperson doesn't care about the difference). My sister-in-law told

me and I QUOTE: " When I heard you are saying is allergic to dairy I

laughed hysterically " . Can you believe that garbage??? I remember that horrible

feeling, feeling so shocked and offended and defensive and disgusted. Like I

would make this up, right?! She backed off once she found out the symptoms

was having, but I'll never forget her " laughter " , like it's funny at all.

She still to this day has the mistaken impression that the pneumococcal

meningitis she had at five months old CAUSED her immune disorder. I don't know

how

many hundreds of times I've corrected her, that the PID is what made her

vulnerable to the meningitis. Sheesh.

I think there are some people who think it's " special " that you have

something like this to deal with, it's almost like a wierd type of jealousy.

They

think we are trying to get attention or something. I've learned with people like

that to tell them verrrrrry little, or nothing. They'll hear of what's going on

through the grapevine, but you don't have to get all defensive when they

accuse you of exaggerating or whatever.

Please don't feel " out of place " at all. There are many many families on this

site, with immensely varying degrees of problems and other complications. The

fact is, a sick child is an unfortunate thing to cope with, even if the

sicknesses aren't life threatening or whatever. Everybody wants a healthy child

and

if you don't feel your child is as healthy as he can be, you have every right

to find a way to cope with that!

My MIL is always telling me about this handicapped child or that child with

chemo she sees on TV or at the mall or somewhere, her intention being that I

should be grateful 's problems are not worse. Doesn't work -- still

has her problems and now I feel bad about the poor child with chemo or

sympathize with the challenges the handicapped child and parents face! Hearing

about

the misery of others only makes me concerned FOR them, it doesn't lessen my

compassion or concern for my own child's situation!

As far as the reflux question, I believe there is a theory that reflux can

back up all the way to the sinuses and eustacian tubes, contributing to ear and

sinus infections. Our docs have never mentioned it, but it may be some new

research. Maybe that's what your ENT is talking about. Sounds like your new ENT

is on the ball though -- and that's a great thing. Culturing to find out what's

up there is a great idea. They can do testing on any pathogens present to

determine what meds will work against them instead of just shooting in the dark.

And yes, there's lots and lots of antibiotics out there, including IV

varieties, maybe there's something you actually haven't tried! Sometimes it

isn't even

that the med was wrong, it just needed a longer course. Sinus infections are

notoriously stubborn and often require longer courses of antibiotics to kick.

We all know that feeling of aggravation when inconsiderate people bring their

sick kids over. Especially people that should know better!!!! We probably all

have about 50 stories of times that has happened to us!!! The only way I know

of to really prevent it is to contact everyone right before an event (family

dinner, etc.) and ASK point blank is anybody sick at all in any way. You can

always have an excuse at hand if you think somebody is going to give you a hard

time ( " Chase has surgery this week and his doctor has said he is NOT allowed

to catch even a cold beforehand! " or " Chase's doctor wants to do some further

testing and they have to postpone the tests if he catches anything " .) I've had

to say (when someone complained it's " just " a cold) " Every cold gets

leads to a secondary bacterial infection. She has been on antibiotics so

frequently this year that her doctor is worried about antibiotic resistance and

superinfection. So we have to be very careful to avoid even colds. "

Hope some of that helps. It's so nice to have a place where so many people

understand.

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

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

other defs... and also to Kate, age 2, dairy intolerant-related eczema)

[Guest guest]

Charity:

First off, welcome! I hope you will get as much out of this wonderful group

as I have, and I've been here for years. I've decided that pretty much nobody

on earth understands what we go through other than other parents of PID kids. I

know what you are going through with your sister, people just cannot get the

info through their thick skulls.

When we determined that 's GERD was from dairy, we mentioned to someone

she's allergic to dairy (in hindsight, it's more of a dairy intolerance, but

the general layperson doesn't care about the difference). My sister-in-law told

me and I QUOTE: " When I heard you are saying is allergic to dairy I

laughed hysterically " . Can you believe that garbage??? I remember that horrible

feeling, feeling so shocked and offended and defensive and disgusted. Like I

would make this up, right?! She backed off once she found out the symptoms

was having, but I'll never forget her " laughter " , like it's funny at all.

She still to this day has the mistaken impression that the pneumococcal

meningitis she had at five months old CAUSED her immune disorder. I don't know

how

many hundreds of times I've corrected her, that the PID is what made her

vulnerable to the meningitis. Sheesh.

I think there are some people who think it's " special " that you have

something like this to deal with, it's almost like a wierd type of jealousy.

They

think we are trying to get attention or something. I've learned with people like

that to tell them verrrrrry little, or nothing. They'll hear of what's going on

through the grapevine, but you don't have to get all defensive when they

accuse you of exaggerating or whatever.

Please don't feel " out of place " at all. There are many many families on this

site, with immensely varying degrees of problems and other complications. The

fact is, a sick child is an unfortunate thing to cope with, even if the

sicknesses aren't life threatening or whatever. Everybody wants a healthy child

and

if you don't feel your child is as healthy as he can be, you have every right

to find a way to cope with that!

My MIL is always telling me about this handicapped child or that child with

chemo she sees on TV or at the mall or somewhere, her intention being that I

should be grateful 's problems are not worse. Doesn't work -- still

has her problems and now I feel bad about the poor child with chemo or

sympathize with the challenges the handicapped child and parents face! Hearing

about

the misery of others only makes me concerned FOR them, it doesn't lessen my

compassion or concern for my own child's situation!

As far as the reflux question, I believe there is a theory that reflux can

back up all the way to the sinuses and eustacian tubes, contributing to ear and

sinus infections. Our docs have never mentioned it, but it may be some new

research. Maybe that's what your ENT is talking about. Sounds like your new ENT

is on the ball though -- and that's a great thing. Culturing to find out what's

up there is a great idea. They can do testing on any pathogens present to

determine what meds will work against them instead of just shooting in the dark.

And yes, there's lots and lots of antibiotics out there, including IV

varieties, maybe there's something you actually haven't tried! Sometimes it

isn't even

that the med was wrong, it just needed a longer course. Sinus infections are

notoriously stubborn and often require longer courses of antibiotics to kick.

We all know that feeling of aggravation when inconsiderate people bring their

sick kids over. Especially people that should know better!!!! We probably all

have about 50 stories of times that has happened to us!!! The only way I know

of to really prevent it is to contact everyone right before an event (family

dinner, etc.) and ASK point blank is anybody sick at all in any way. You can

always have an excuse at hand if you think somebody is going to give you a hard

time ( " Chase has surgery this week and his doctor has said he is NOT allowed

to catch even a cold beforehand! " or " Chase's doctor wants to do some further

testing and they have to postpone the tests if he catches anything " .) I've had

to say (when someone complained it's " just " a cold) " Every cold gets

leads to a secondary bacterial infection. She has been on antibiotics so

frequently this year that her doctor is worried about antibiotic resistance and

superinfection. So we have to be very careful to avoid even colds. "

Hope some of that helps. It's so nice to have a place where so many people

understand.

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

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

other defs... and also to Kate, age 2, dairy intolerant-related eczema)

[Guest guest]

Care:

I think it's a coping mechanism, this comfort level we get with our

children's illnesses when they are so frequent.

I sometimes get this weird feeling of " something looming " when is

well... waiting for the other shoe to drop or something. You get so accustomed

to

the panic you don't know what in the world to do with yourself when it's calm.

I remember way back when was first diagnosed and her PID was much more

severe. We had to panic and run to the ER any time she had a high fever, as

the ped and immuno were worried she could get pneumococcal meningitis again. At

first that fear, that wondering, it just killed me, I was so stressed and on

edge. After a couple years of that, and of course some improvement in her PID,

it turned around so that I felt like I was on the ball when she was sick...

we're moving, we're doing something, we're working to get her well. We know what

we're fighting (sometimes), and we're fighting it, now we can relax or at

least settle in to the fight, which we've become so used to.

Of course, it's been five years since her most deadly infection, so I'm

feeling like we probably don't have that danger at hand anymore, so that helps

of

course.

I am horrified that your family mocks you. Do you have doctors backing up

your claims about these allergies and other problems? Well then, you know what

the facts are. As for what your family says, and as my mom would say, " Consider

the source... then ignore it. " Easier said than done sometimes, but you have

to just admit to yourself that you don't understand where they are coming from

and then turn the other cheek. People can be so strange, can't they?

Again, I have found that the less you talk about it, the less scepticism you

get from people who think you're making it up. After all, if somebody thinks

you are making something up to get attention, they have to admit that doesn't

make sense when you aren't even talking about it or getting that attention for

it. That's how I handled my SIL who " laughed hysterically " at my concern over

's dairy intolerance.

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

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

other defs... and also to Kate, born 9/19/02, dairy intolerant)

[Guest guest]

Care:

I think it's a coping mechanism, this comfort level we get with our

children's illnesses when they are so frequent.

I sometimes get this weird feeling of " something looming " when is

well... waiting for the other shoe to drop or something. You get so accustomed

to

the panic you don't know what in the world to do with yourself when it's calm.

I remember way back when was first diagnosed and her PID was much more

severe. We had to panic and run to the ER any time she had a high fever, as

the ped and immuno were worried she could get pneumococcal meningitis again. At

first that fear, that wondering, it just killed me, I was so stressed and on

edge. After a couple years of that, and of course some improvement in her PID,

it turned around so that I felt like I was on the ball when she was sick...

we're moving, we're doing something, we're working to get her well. We know what

we're fighting (sometimes), and we're fighting it, now we can relax or at

least settle in to the fight, which we've become so used to.

Of course, it's been five years since her most deadly infection, so I'm

feeling like we probably don't have that danger at hand anymore, so that helps

of

course.

I am horrified that your family mocks you. Do you have doctors backing up

your claims about these allergies and other problems? Well then, you know what

the facts are. As for what your family says, and as my mom would say, " Consider

the source... then ignore it. " Easier said than done sometimes, but you have

to just admit to yourself that you don't understand where they are coming from

and then turn the other cheek. People can be so strange, can't they?

Again, I have found that the less you talk about it, the less scepticism you

get from people who think you're making it up. After all, if somebody thinks

you are making something up to get attention, they have to admit that doesn't

make sense when you aren't even talking about it or getting that attention for

it. That's how I handled my SIL who " laughed hysterically " at my concern over

's dairy intolerance.

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

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

other defs... and also to Kate, born 9/19/02, dairy intolerant)