Re: update on - sinus worse

March 30, 2004

Arrgh!

Mommy guilt: keeps complaining her sinus infection is still there, that

the " medicine isn't working " . She still has the raccoon eyes and is puffy in

the morning. But then she has periods where she rallies and is full of vim and

vigor (to put it politely), then periods where she's so easy to cry and you

think " sinus behavior " . Well, we had a showdown yesterday where I was trying to

figure out if she was really still sick or not. I tried to get her to

understand the importance of not saying she's sick if she isn't, and telling me

if

she is. Confusing for a five year old, I imagine, and I think was thinking

" What does she want me to say? "

I was grilling her gently, not quite believing she still has a sinus

infection because I see no more drainage. It occured to me she could have

swollen

shut, but I thought that impossible after two weeks of Ceftin, which is supposed

to be soooo good for sinus infections.

The end result is she told me she was fine and then recanted, saying " I lied "

and I had to figure out which she lied about. She lied about feeling better.

SIGH! WHAT??? So I had no clue what was going on, what was the truth and I was

sort of aggravated.

Well, to get to the point, I took her in and she's so infected now she

swelled shut and that's why the drainage stopped. GUILT!!!!!! I didn't make a

big

deal of that with her, I just told her " Boy, Em, you were right, you DO still

have a sinus infection! I'm glad you are able to know when you are sick and tell

me about it. I'm sorry I gave you such a hard time this morning " .

So we went to Augmentin, which is the drug we save for pneumonias and for our

Big Gun and I HATE that we're using it for sinus. I asked the ped if that was

okay, to be using our big gun and she sort of looked at me like, " This is

what you were saving it for, for when other abx aren't working " . This really

upsets me that it's come to this.

Our big gun, our go-to drug... this is the second time we've used it this

year already (first was for pneumonia). This trend really bothers me. I'm

waiting

until she doesn't have an active bacterial infection before I get her immune

panel drawn, but when will that be??? I'm dreading what the numbers will show.

If they are lower, that's devastating. If they are the same or better, I'll

feel her problems won't be taken seriously and she'll be sick all the time

without " impressing " the docs.

Well, I guess we just take it one step at a time. I know we've been very

fortunate that this hasn't happened before... sinus infection getting worse on

abx. We've had to go two courses to clear it, but it has never actually gotten

worse during treatment.

Should I be worried? I know sinus stuff is notoriously stubborn, even in

those with normal immune systems. I just hate to think of those bacteria in

there

having a party when doesn't have the antibodies to fight them.

We go back next Tues and if she isn't better they will CT her.

Thanks for letting me ramble and vent, I needed to do it with people who

would understand! Believe me, I know we've been lucky it's never come to this

before. But I don't know what that means, that after all the improvement she's

shown in her numbers over the last three years, now she's doing this. I assume

it's preschool and stress on her system of being exposed to so much?

(mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD,

dairy intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

March 30, 2004

In a message dated 3/30/04 7:19:15 AM Pacific Standard Time,

bunneegirl@... writes:

Should I be worried? I know sinus stuff is notoriously stubborn, even in

those with normal immune systems. I just hate to think of those bacteria in

there

having a party when doesn't have the antibodies to fight them.

Hi ,

First of all, don't feel guilty. It's so difficult to tell sometimes what

exactly is going on with our kids!! They are not the easiest of kids to " read. "

Secondly the abx alone will not open up her sinuses. You're right, it's a

strong one and is there to kill the bacteria. Have you guys tried five days

of Prednisone with the abx to open her up?? Bri's sinuses swell shut and this

is the only thing that ever works for him. Just keep the steroids short and

sweet----always keep the dose low.

Sandi--Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic

ear

infections, asthma, severe allergies, GERD, Tethered Cord Syndrome.

March 30, 2004

,

Please don't feel so bad that you and miscommunicated. My 7yo still

has trouble accurately telling me when her stomach hurts from refluxing! A

seven yo! I really thought that by seven a child could distinguish

symptoms. Guess not! {HUGS} Hope responds quickly to the Augmentin!

Pam

mom to 4

April 2, 2004

In a message dated 3/31/2004 1:24:14 AM Central Standard Time,

uahollem1@... writes:

> If they're low then it shows that she can't mount any numbers while

> infected and she's so low she can't recover from the infection. If she's high

then

> you know she is mounting a response, does it really matter what provokes it?

Ursula:

You're right -- and this is the position of Dr. Hans Ochs, whom we talked to

many moons ago as a sort of long distance second opinion. My reasoning is that

if her IgG is in the 300s daily and the illness boosts her up to the 500s,

then they'd consider that sort of normal, when in reality it may not be enough?

Please no one use this information to apply to their own case!! I'm just

throwing random numbers out to try to illustrate my hesitation.

I dunno. I guess it doesn't matter so much and I really just need to

concentrate on scheduling everything around the sinus rechecks and preschool and

Kate's 18 mo checkup and picking up one recently-fixed car (and figuring out how

to

pay for it) and dropping off another broken car (who's paying for

that?!?!?!)!!!! And so far we're at three doc visit co-pays ($15 each) and two

med

co-pays ($20 each) in the past three weeks. Arrgh!

(mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD,

dairy intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

April 2, 2004

Sandi:

Thank you for the advice. You know, you must feel like a broken record

continuing to repeat the steroid burst advice, but please keep in repeating

yourself

for those of us who forget when the info doesn't apply and don't remember the

next time it does.

I guess the Nasonex was supposed to help but she's so raw and friable that it

was too painful. Maybe oral is the way to go and I'll ask about it at the

recheck on Tuesday.

I'm also wondering about reflux relating to these sinus infections...

wrestling with the thought of doing no-dairy for Em, which fixes reflux for her,

or

considering Zantac.

Thanks again!

(mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD,

dairy intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

April 3, 2004

In a message dated 4/2/04 8:09:09 AM Pacific Standard Time,

bunneegirl@... writes:

You know, you must feel like a broken record

continuing to repeat the steroid burst advice, but please keep in repeating

yourself

for those of us who forget when the info doesn't apply and don't remember the

next time it does.

Hi ,

You read my mind!! This is exactly how I feel, but I know what a

difference a burst of steroids has made in 's life. Without them, he would

never

get well. So, I'll just keep reminding you Meanwhile, you must have some

lovely SINUS INFECTION BEHAVIOR at your house. Yikes, hang in there!!

Sandi--Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic

ear

infections, asthma, severe allergies, GERD, Tethered Cord Syndrome.

April 7, 2004

In a message dated 4/3/2004 7:24:34 PM Central Standard Time,

sassykay59@... writes:

> Meanwhile, you must have some

> lovely SINUS INFECTION BEHAVIOR at your house. Yikes, hang in there!!

>

Oh, Sandi, Don't You Know IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She wasn't so

bad the first week (sheesh) but it's getting worse and worse and worse, and

really, who can blame her? She had a sinus CT on Monday, we hope to hear

something today but have continued the Augmentin in the meantime. When the ped

calls,

I will ask about the short burst of steroids. I am well aware we are lucky

she hasn't had a more stubborn one before, but I am not liking how strong this

infection seems.

Add to that the fact Kate is hitting high toddlerhood... she has always been

soooooo easy and now she's getting an attitude!!!!! But my feeling is, I

survived EMILY, this has got to be a cakewalk. (in comparison only!)

Thanks again --

(mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD,

dairy intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

April 8, 2004

In a message dated 4/7/04 11:09:14 AM Pacific Daylight Time,

bunneegirl@... writes:

I am well aware we are lucky

she hasn't had a more stubborn one before, but I am not liking how strong

this

infection seems.

Hi ,

I think you'll be amazed if you try the steroids in conjunction with the

abx--I notice a difference in in about 48 hours. Yesterday, we took our

own visit to the Peds based on SIB/EIB. Well, it turns out that Bri has a

double ear infection, sinus infection and strep!!! No wonder he was grumpy. I

got a call a few days ago from the neighbor saying he was " being a pill. " Then,

two days ago he wasn't able to concentrate with the tutor so I knew something

was up. Of course, he hadn't complained about anything hurting. I can just

see it now, when he's grown up and married, he will be a butthead so his wife

will send him to the Docs!! I am working on getting him to manage his health

better, but he's had to live with infections so long he just ignores them.

Sandi--Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic

ear

infections, asthma, severe allergies, GERD, Tethered Cord Syndrome.

April 11, 2007

Hang in there ! We need guidance on the sinus thing still too.

Will she take Augmentin? Jake is on Amoxicillan AND Augmentin at the

same time right now. He'll take amox but is hysterical with the aug.

My 5 yr old won't accurately describe symptoms either. He runs like

the energizer bunny no matter how sick he is. Then we feel guilty

when one of the doctors says " you sent him to school like this??? "

We keep a calendar-just blank pages-where we write down every single

symptom and then let the doctors figure out the patterns. It helps.

How is she doing now? Janet

>

> Arrgh!

>

> Mommy guilt: keeps complaining her sinus infection is still

there, that

> the " medicine isn't working " . She still has the raccoon eyes and

is puffy in

> the morning. But then she has periods where she rallies and is

full of vim and

> vigor (to put it politely), then periods where she's so easy to

cry and you

> think " sinus behavior " . Well, we had a showdown yesterday where I

was trying to

> figure out if she was really still sick or not. I tried to get her

to

> understand the importance of not saying she's sick if she isn't,

and telling me if

> she is. Confusing for a five year old, I imagine, and I think

was thinking

> " What does she want me to say? "

>

> I was grilling her gently, not quite believing she still has a

sinus

> infection because I see no more drainage. It occured to me she

could have swollen

> shut, but I thought that impossible after two weeks of Ceftin,

which is supposed

> to be soooo good for sinus infections.

>

> The end result is she told me she was fine and then recanted,

saying " I lied "

> and I had to figure out which she lied about. She lied about

feeling better.

> SIGH! WHAT??? So I had no clue what was going on, what was the

truth and I was

> sort of aggravated.

>

> Well, to get to the point, I took her in and she's so infected now

she

> swelled shut and that's why the drainage stopped. GUILT!!!!!! I

didn't make a big

> deal of that with her, I just told her " Boy, Em, you were right,

you DO still

> have a sinus infection! I'm glad you are able to know when you are

sick and tell

> me about it. I'm sorry I gave you such a hard time this morning " .

>

> So we went to Augmentin, which is the drug we save for pneumonias

and for our

> Big Gun and I HATE that we're using it for sinus. I asked the ped

if that was

> okay, to be using our big gun and she sort of looked at me

like, " This is

> what you were saving it for, for when other abx aren't working " .

This really

> upsets me that it's come to this.

>

> Our big gun, our go-to drug... this is the second time we've used

it this

> year already (first was for pneumonia). This trend really bothers

me. I'm waiting

> until she doesn't have an active bacterial infection before I get

her immune

> panel drawn, but when will that be??? I'm dreading what the

numbers will show.

> If they are lower, that's devastating. If they are the same or

better, I'll

> feel her problems won't be taken seriously and she'll be sick all

the time

> without " impressing " the docs.

>

> Well, I guess we just take it one step at a time. I know we've

been very

> fortunate that this hasn't happened before... sinus infection

getting worse on

> abx. We've had to go two courses to clear it, but it has never

actually gotten

> worse during treatment.

>

> Should I be worried? I know sinus stuff is notoriously stubborn,

even in

> those with normal immune systems. I just hate to think of those

bacteria in there

> having a party when doesn't have the antibodies to fight

them.

>

> We go back next Tues and if she isn't better they will CT her.

>

> Thanks for letting me ramble and vent, I needed to do it with

people who

> would understand! Believe me, I know we've been lucky it's never

come to this

> before. But I don't know what that means, that after all the

improvement she's

> shown in her numbers over the last three years, now she's doing

this. I assume

> it's preschool and stress on her system of being exposed to so

much?

>

> (mom to Kate, born 9/19/02, dairy intolerant; and , age

5, GERD,

> dairy intolerant -- currently has polysaccharide antibody def,

previously had

> transient IgG, IgA, t-cell & other defs)

>

April 11, 2007