RE: guilty about pneumonia

[Guest guest]

I'm feeling guilty here...

was diagnosed with pneumonia this morning, and I didn't second guess

myself until I told DH and he said, " And who KNOWS how long she's had it!!! "

because she's been coughing for 16 days. But I was waiting to take her in

because

her appetite was fine and no fevers at all.

I've been listening on the stethescope since last Wed because her cough

seemed worse by then. No wheezing, lungs sounded clear. Worse by Friday again,

but

still clear, but at least I put in a call to the ped and thoroughly went over

it all, she agreed with me it sounded like viral bronchitis. Who knows, I may

have even considered taking her in but my SIL shot me with a zinger that day,

I was saying that DH and MIL wanted me to take her in but I wasn't because she

had no fever and good energy. I said I didn't think I was normally the type

to take the risk if I thought she was very sick. And SIL zinged me with the

ever-so-sweetly put, " No, you're the most 'careful' person about that stuff I've

EVER SEEN " . Like I go to the doc all the time? She has NO idea. I NEVER take

in for anything unless I think it's a secondary bacterial infection. We

don't go in for sore throats, gastro viruses, anything like that (since she's

never had strep). And SIL is the one who forced an ER to give her daughter an

unnecessary SPINAL TAP (by threatening a lawsuit) when EMILY had pneumococcal

meningitis, which is NOT contagious and every doc at 's ICU patiently

explained that to her over and over and over again, that there was no way her

daughter could have it too even considering that the girls had been together.

I know I shouldn't let that stuff bother me, I should do like my mom always

says, " Consider the source... then ignore it " . But it ticks me off for her to

accuse me of being soooo " careful " , when I am actually pretty conservative due

to not wanting to catch whatever's at the docs, due to not wanting to pay

needless co-pays, etc. etc. After all these years, I know the signs and symptoms

of bacterial infections and that's the ONLY time we go in. Sheesh.

So anyway, I didn't take her in. I took our stethescope with us to an

out-of-town function this weekend and everything. Yesterday was HER 6th

BIRTHDAY(!!!)

and I have to be honest, I thought I heard some crackles then. But it was her

birthday, you know? And I wasn't sure... I have a cheapie stethescope from

walgreen's and you can hear the joints in your own fingers creaking when you use

it, for Pete's sake, so you really have to be careful what you're hearing.

I'm feeling guilty because I probably should have taken her in yesterday, but

since it was her birthday and mostly because she didn't have any fever at all

and felt okay (except for the terribly bothersome coughing), I just didn't.

Still no fever, her temp is actually low. But she still feels okay, not that

sick!

Oh, and many of you have been here -- this morning at 5am I was picturing

going in her room and finding her dead. See, she's been coughing all night for

two weeks. Last night she started with this really bad, choking cough, turning

red, gagging and urping at the end. I actually spent an hour online looking up

Pertussis! Her cough was still productive but you could tell it was getting

harder to bring up. I was more sure about the crackles, too.

So this morning I awaken at 5am because that's one of the times she's been

having coughing fits, only to realize she didn't cough all night as far as I

knew. As bad as her cough was the night before, there's no way she miraculously

didn't need to cough all night. So I pictured her as drowing in her own phlegm

while I slept. I crept in her room but it was messy and her floor really

creaks bad, and when she stirred I snuck out without feeling her. 15 minutes

later

I had to go in again, because what if she wasn't stirring, she was struggling?

I could hear her breathing deeply from the doorway that time so that

settled that. She got up earlier than usual and came downstairs and proceeded to

try to hack up everything she pooled overnight. I heard some wheezes on intake

for big coughs and that settled it, we were going to " sick hours " .

Doc said she could go back to school tomorrow if she felt like it, school

nurse said see how she feels, not to rush it. DH will probably want her to go

back, doesn't want her to miss much school. But part of me would like to let her

rest at home without additional germ exposure until the augmentin es has time

to start working. I dunno. Plus it's only Kindergarten, what will she miss --

nose-picking ettiquette? We can read and do workbook pages at home.

Crappy birthday, huh!! Sort of matches our crappy Christmas!!!

(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]

hi! i am brand new here, but i will ask this anyways, if its of no use to u,

sorry!

my dd 5 gets that same tiem of cough ALL the time, she alwasy has bronchitis

or pnemonia. anyways, has the dr ever tried orapred for the cough? after MANY

things the gave her (nebulizer and all) one dose of orapred and it stops!

also to tame the cough at night, see if they can try pancof or tannihist. they

were the only too that would help her through the night (she also has mild

asthma).

hope thats of some use, if not sorry, just thought i would post something

thats actually helped my dd, not much else does!

maggie

mommy to kaitlin 5 -pid

courtney 4 adhd

maggie

[Guest guest]

Well, ,

We'd make great pen pals! Rebekah has had a cough for 2 weeks. I'll gone

back and forth between calling and not calling, bringing her in and not

bringing her in. The town is riddled with flu, gastro virus, strep, mono,

and mycoplamic pneumonia. If she just has a virus, bringing her in would be

STUPID. Think of the " friends " we'd pick up at the clinic.

So, I called the immuno on Friday and they " forgot " to call me back. Turns

out they wanted her on zithromax. Well, on Saturday, I was coughing like

crazy and had developed pleurisy spots again. Yes, I'd be coughing along

with her. My dh never finishes his antibiotics and he had an entire 14 day

round of Augmentin sitting in the cabinet. That stuff was GREAT! Within

hours, I could talk again and the cough was better. So, I started Rebekah

on the only pediatric antibiotic I had left in the house: zithromax! LOL

Our wonderful ped slips me undiluted antibiotics to keep around for just

this kind of event.

So, I guess I made the right call. I wish I had a stethoscope to listen for

crackles. I don't know what I'd be listening for, but it would help me

decide whether to take her in or not.

Now, two other kids are coughing like crazy. Do I take them in or not?

Sigh.

Oh, and regardless of what we've had, there hasn't been a lick of fever!

These " are they sick or not " decisions are SO hard.

And your SIL is a nut (pardon my judgmental attitude). I think you do a

great job protecting . Nose-picking etiquette! What a hoot!

Pam

mom to 4

Rebekah, 5, CVID and ??

Re: guilty about pneumonia

I'm feeling guilty here...

was diagnosed with pneumonia this morning, and I didn't second guess

myself until I told DH and he said, " And who KNOWS how long she's had it!!! "

[Guest guest]

Maggie, GERD is gastro esophageal reflux disease….

As for waiting it out, once they are diagnosed there is usually a

treatment plan for when you bring them in…….And, after you’ve dealt with

this stuff a few/many times, you usually know when its just viral or

when they need antibiotics…..

As for me, I am still more cautious with Jake at this point. We do not

have a diagnosis…He is not following a typical course of immune

deficiency as he has more trouble with viral infections and typically

doesn’t get the bacterial infections associated with immune deficiency.

My son has neutropenia issues…..but doesn’t drop as low as other kids

and seems to have trouble earlier if his counts get to the worrisome

level…..Some of these kids on here don’t even have the counts as good as

my Jake, and they seem to do okay with the counts being low…..Until we

get a handle on the diagnosis for , I think I will be very

cautious….but last year Jake was hospitalized once a month for various

viral illnesses….He got rotovirus and within 12 hours of diarrhea and

vomiting he was hypoglycemia and acidotic (low blood sugar and low CO2

in the blood). He was hospitalized and it took over 12 pokes to get his

IV in. A month later he got another gastro bug…..and within

, 2yo, cyclic neutropenia, IgG deficiency with sub class 3

deficiency, Secretory IgA deficient, Low T cells, Low C4, Iron

deficiency anemia (resolved)

igh, 4 3/4, Mild CP, Chronic ear and sinus infections IgE deficient.

Libby, 10 y/o, healthy who loves playing basketball and tap dancing.

Kaitlyn, 13 y/o, mild asthma, otherwise healthy with a typical 13 going

on 30 attitude.....

Warren, husband of 6 years, IDDM using an insulin pump at present.

Re: guilty about pneumonia

oh! i love this site!! u guys are making me think!!!!!

2 questions:

1- why do i keep seeing the word " gerd " after some stuff, what is that?

2- why do i keep seeing everyone discussing bringing in there kids late

to

the drs and waiting it out. i ussualy try to wait it out with kaitlin,

it

sounds as if u guys are refering that it makes them worse?? like for

example. she

just had sinusitus (chronic) she got 2 weeks zythromax. did nuthin. then

got

30 days augmentin. did nuthin and actually got bronchitis 2 weeks into

the

augmentin which then turned into pnemonia. then she got 10 days biaxin,

almost

went to er cause she had a fever of 104.5 for 6 days on the biaxin. by

day 10 the

pnemonia cleared but still sinustis bad so they gave her 20 days

omnicef.

(still on the omnicef) thats ALOT of anti b " s!!! no missed days!! if i

had

brought her in at the first sight of sinusitis, are u guys saying that

it might

ot have gotten all out of hand?????

ok, sorry for the novel!!!

maggie

[Guest guest]

In a message dated 1/18/2005 4:33:12 PM Central Standard Time,

pmork@... writes:

> So, I guess I made the right call. I wish I had a stethoscope to listen for

> crackles. I don't know what I'd be listening for, but it would help me

> decide whether to take her in or not.

>

Pam:

Thanks for your reply, especially supporting the fact that my SIL is a nut!

You can get a stethoscope at Walgreen's for $9.99 or so. What helps is

listening to a couple different kids when they are healthy, getting used to

hearing

the " balloon " blowing up sound of a clear lung. When is " working on " a

pneumonia but it's not full blown yet, I'll hear little wheezy squeaks at the

start of a bad cough, but not during regular breathing. It has been my

experience that sometimes when that's happening the ped hears something and

sometimes

they don't. That's why I waited this time. I can't afford a $25 co-pay to hear

" her lungs are clear " and end up going back again in two days when it's bad

enough to hear all the time.

If she is wheezing on exhale, she goes in (she does not have asthma, only

wheezes with pneumonia). If I hear crackles, they can be barely noticeable or

they can sound like quiet velcro!!! " Crackle " is a very good term, that's just

what it sounds like. To be sure, I sit there forever listening, moving the

stethoscope all over, to different areas to be sure I'm not missing something.

There are other noises you could hear, rales, other terms, but for us she

wheezes

or crackles or nothing. I noticed a couple days ago she sounded more dense,

deeper or more solid on the right side. In hindsight, that was a big clue, as

the ped says she has pneumonia on the right side. But I waited until I heard

crackles.

The catch is that you have to keep your finger or thumb very still on the

head of the otoscope or you hear your hand creaking and sliding around. I don't

know if more expensive equipment does this too.

Another trick is to listen with the scope and have them say, " EE-EE " . If it

comes out sounding like " AA-AA " , that's called " E to A change " and is a sign of

pneumonia. didn't have this this time, but that was the only sign the

first time she had pneumonia last year. At that time I was hearing the squeaks

with coughs and her appetite was down.

The next time, she had a fever, looked very sick, no appetite at all, some

squeaks and crackles, but I wasn't sure about the crackles, I guess I couldn't

believe what I was hearing. The ped was sure what HE was hearing.

The first time she ever had pneumonia it hit really fast. I don't even

remember her having a cough, then all of a sudden one day she woke up fine, but

when

I was changing her clothes I noticed she was breathing really fast and her

chest was sucking in and out with her breathing. She seemed to start to get a

fever right before my eyes. I told DH she wasn't breathing right and took her to

the peds. Her white count was 19,000 and extreme left shift. She was wheezing

but I didn't know that. The chest retracting like that is respiratory

distress and an emergency. I didn't know that, but Mommy's instinct did. DH was

amazed when I called to tell him bacterial pneumonia... he was amazed I knew to

take her in.

So it's a matter of trying to know every sign and looking for any or all of

them, guessing, using instinct, flying by the seat of your pants, etc.

etc.!!!!!!!!

With no fever, I'm wondering if it's mycoplasma pneumonia or maybe viral. She

does sound worse today, but still feels better than you'd guess by hearing

her lungs. That's why I'm thinking Mycoplasma, ( " walking pneumonia " ), because

with that one they say you are sicker than you look. She doesn't look that sick

but her lungs sound gross.

(mom to , age 6, dairy intolerant-related GERD -- currently has

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

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 1/18/2005 9:49:46 PM Central Standard Time,

rn4premies@... writes:

> I felt terrible that I had let it get that bad

:

Don't feel bad, we just do the best we can. I try to be so judicious about

when to go in, I figure if I go in every time she has a sniffle they won't take

us seriously. I think it's a rule, we either go in two days to early or one

day too late! Really, that's not so bad, it's pretty close!

(mom to , age 6, dairy intolerant-related GERD -- currently has

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

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 1/18/2005 10:46:37 PM Central Standard Time,

thedonicoherd@... writes:

> if i had

> brought her in at the first sight of sinusitis, are u guys saying that it

> might

> ot have gotten all out of hand?????

>

Maggie:

It's hard to say. But if there are bacteria in there, and they are

multiplying, it makes sense that the longer you wait, the more time those little

buggers

have to build up more and more numbers, and it will be harder to wipe them

all out. But you also don't want to go to the peds with every sniffle, you'll be

like the boy who cried wolf and you'll also be broke... plus you'll be

exposed unnecessarily to all the germs in the doctor's offices.

That's why it's so frustrating -- knowing when to wait and when to go in.

I've gotten so sick of guessing that I bought an otoscope ($20), an Ear Check

device that is supposed to monitor the presence of fluid in the ear ($50 but

grandma paid), and a stethoscope ($10). The cost of those instruments is far

less than the money I would have wasted going to the ped with every suggestion

of an infection.

Perhaps it would be okay to wait and watch more, but you know the saying,

" Once bitten, twice shy " . got pneumococcal meningitis after an unresolved

ear infection as a baby. To be honest, that will probably never happen again,

it's very rare and her PID was much, much, much worse at that point, plus she

was only 5-1/2 months old and naturally more vulnerable anyway. But we almost

lost her and I will probably never again be able to wait and watch the way a

non-PID parent might.

Over time I've watched and noted all the signs that gets for the

various infections, and I've gotten better at guessing. But it's true, I beat

myself

up when I go in unnecessarily and beat myself up more when I wait too long.

And with her PID being more minor at this point than most, it probably

wouldn't kill her to wait more. But I just can't!!!

(mom to , age 6, dairy intolerant-related GERD -- currently has

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

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

[Guest guest]

hi. sorry for all the questions!!! im just tryingto learn.

1- my dd just had the mycoplasma pnemonia, walking pnemonia and she looked

absolutely fine. i argured with it even being pnemonia!! in case that helps u.

2- when ur kids get bronchitis or pnemonia do they seem to not work on them??

or do they use stronger antibiotics then like zythromax or augmentin or

biaxin?

thanks everyone, u hav no IDEA how much this is all helping me!!!

maggie

[Guest guest]

Maggie:

usually gets Augmentin ES for pneumonias, though she got zithromax

once. They always work for her, and that's why she's not on IVIG. As long as the

abx are working, they don't feel she needs additional treatment.

At some point we'll have to consider quality of life issues (getting sick so

often) and maybe even the thought of permanent lung scarring (I have no idea

at what point they consider that), but for now she's holding her own with

treatment antibiotics.

(mom to , age 6, dairy intolerant-related GERD -- currently has

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

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

[Guest guest]

ivig? is that what the immunoglubulin infusions are? so ur daughter doesnt

get them , but takes antibiotics alot? how old is she again? how often would u

say she gets antibiotics? is she on any other meds??

im sorry, im asking cause i guess thats roughly where im at. quality of life

issues. i homeschool so being around tons of kids isnt an issue, but we still

have group play and dance, etc. kaitlins antibiotics work but ususaly after a

2nd dose or days and days into it. she has only been hospitalized once, but

several trips to er.

oh and thanks for all the info on breastfeeding!!! when i have my next(

hopefully sooner than later!) i will defietnly look into the crib by the bed and

the maya sling. that ALWAYS bothered me about breast feeding!! and its true how

many people touch your tiny baby!! argh... kaitlin was born at what we

thought was 36 weeks (water leaking) but when she was born the said she was more

like 34 (undeveloped lungs landed her in nicu for a few days). dont know how

that

miss judgment happened. and i was VERY sick with her. i got pregnant with my

2nd daughter only 3 months after the birth of my first and was never sick with

her at all. although she has adhd.

thanks for allllllllll theinfo!!

maggie

[Guest guest]

hi! someone just posted about a child who was 6 and possibly getting a tube?

the child weighed 35 pounds.

my younger daughter is having issues as she always has with eating. what is

all this talk about stomach stuff?? can someine explain what the stomach has to

do with immune stuff?? im lost! she is 4 1/2 26 pounds and that is only after

6 months of periactin in which she gained a whole 2 pounds at maximum dose!

the ped only says if she loses any more weight she will be in the hospital on

iv. but something is DEFINETLY wrong with her eating. she has adhd and ive

tried blamming the adhd for it, but i cnat make it fit feeling wise in my gut.

any ideas? or thoughts?

maggie

[Guest guest]

Ursula:

The first time she had pneumonia they did an x-ray, the rest they just

treated with abx with no scans or anything. Her lungs sound worse today and the

ped

said if she isn't better by Friday he wants to see her. Perhaps if that

happens I should ask him to have a look. Can you educate me on why you'd do a CT

instead of x-ray -- I'm not familiar with the difference.

Also, although mycoplasma pneumonia seems to be atypical in the general

community, is it more typical in the PID community? Seems like I've heard a lot

of

reports of mycoplasma over the years, considering it's supposed to be less

common in general.

Thanks --

(mom to , age 6, dairy intolerant-related GERD -- currently has

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

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 1/19/2005 11:45:01 AM Central Standard Time,

rn4premies@... writes:

> they do try amoxicillin

:

We never ever do amoxicillin. had it maybe three or four times and it

never worked, so they don't even bother with it.

(mom to , age 6, dairy intolerant-related GERD -- currently has

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

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

[Guest guest]

takes amoxicillian and septra for prophalatic abx along with the

IVIG, then when he gets a really bad sinus infection he goes on augmentin ES

and for pneumonia he takes zithromax. That seems to be our protocol so far.

He also takes breathing treatments and inhaled steriods daily and they get

increased for bronchitis or pneumonia.

Amy,

mom to , 2 years old, CVID, asthma, GERD, on prophalatic abx

(rotating Septra and Amoxicillin) and IVIG (Carimune NF) every 4 weeks,

flovent, xopenex, albuterol and claritin. Allergic to milk, soy and latex..

among other things. Visit Nick's Caringbridge site at

http://www3.caringbridge.org/ne/nicholasb/

Re: guilty about pneumonia

>

> Maggie:

>

> usually gets Augmentin ES for pneumonias, though she got zithromax

> once. They always work for her, and that's why she's not on IVIG. As long

> as the

> abx are working, they don't feel she needs additional treatment.

>

> At some point we'll have to consider quality of life issues (getting sick

> so

> often) and maybe even the thought of permanent lung scarring (I have no

> idea

> at what point they consider that), but for now she's holding her own with

> treatment antibiotics.

>

> (mom to , age 6, dairy intolerant-related GERD -- currently has

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

> other

> defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

>

>

>

[Guest guest]

they take antibiotics every day?????

ok... what type of doctors are handling ur children, regular peds

andimmunologist/allergists???

maggie

[Guest guest]

i live in palm bch county so thats only 2 hrs away!! i will absolutely look

into that!! thanks!!

the drs, are being what i feel is lax on her diagnosis. its do this or nuthin

type feeling. well what about the fact she has green stuff pouring out her

nose right now and this is after 9 1/2 weeks of 4 antibiotics?? doesnt that seem

of concern????

maggie

[Guest guest]

Hi Maggie,

For , they almost never use anything but Augmentin, Biaxin or double to

triple doses of Zithromax, they do try amoxicillin, but that is only early in

the course of an infection and 1/2 the time they end up switching to a stronger

one. Also they treat for a minimum of 14-21 days if not longer, for any

infection.

mom to - CVID, asthma, GERD

Re: guilty about pneumonia

hi. sorry for all the questions!!! im just tryingto learn.

1- my dd just had the mycoplasma pnemonia, walking pnemonia and she looked

absolutely fine. i argured with it even being pnemonia!! in case that helps

u.

2- when ur kids get bronchitis or pnemonia do they seem to not work on them??

or do they use stronger antibiotics then like zythromax or augmentin or

biaxin?

thanks everyone, u hav no IDEA how much this is all helping me!!!

maggie

[Guest guest]

Macey is on a daily maintenance dose of Septra. Septra is supposed to cover

her for pneumonia. When she does get it though we use Zyrthromax. We start

with a shot of Rocephin in the office and then do 10 days of Zithromax.

When our non-PID had pneumonia last year after her knee surgery we

used Omnicef and it worked well. My husband is on a daily maintenance dose

of Biaxin for pneumonia coverage.

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

has ever had a CT of her lungs? Even if there isn't scarring it

would provide a baseline look.

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

Maggie you mention that sometimes the antibiotics don't work until after a

second dose. It is common for immune deficient patients to need longer

courses of antibiotics than usual and so most doctors with these patients

just prescribe the extended course from the beginning. As your daughter is

further evaluated and you develop a treatment plan with your doctors you

will detail out how she will be dosed, evaluated, handled by on call docs

and treated. You should consider trying to attend the IDF Family Conference

in Orlando in June. The initial information is on the IDF website

(www.primaryimmune.org).

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

- CT's can provide a more defined, deeper look than xray. Especially

High resolution CT's (HRCT). Basically it goes xray, CT, MRI. Each has a

more pronounced picture and shows things alittle better. MRI's are usually

a sedated test for under 10 yr olds so we've avoided it (Macey's had a brain

MRI and 's had a knee MRI - though she didn't need sedation she did

great). CT's (macey calls them the " doughnut " ) can help distinguish between

acute and chronic or diseased problems. Macey's lungs and sinuses have

become so bad that we don't even do xrays anymore because all they tend to

do is read them as infected and it's just old scar tissue. The CT will show

more recent involvement and how pronounced it is. We are fortunate with our

insurance that the copay for xray and CT is the same and both are reimbursed

the same. So we figure we'll get the best view and treat from that. We

have several free-standing imaging centers here so getting an appointment

for a CT sometimes can happen on the same day but usually its the first one

the very next morning.

Mycoplasma pneumonia is also known as walking pneumonia and unfortunately is

becoming very common in the general public.

Mycoplasma is a major cause of respiratory infections in school-aged

children and young adults. It is most common between the ages of 5 and 15,

accounting for 70% of pneumonias in children aged 9 to 15. Mycoplasma can be

contagious with close contact.

http://www.drgreene.com/21_416.html

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

Wenoka-

A private and/or anonymous database would be awesome! I bet if we parents put

our heads together we can do more good for our children and the public.

Maggie-

" can someine explain what the stomach has to

do with immune stuff?? "

Can't expain it, Maggie. But THERE IS A CONNECTION! I assume you mean a

gut-immune connection? The NIH is investigating this right now and still

accepting participants. (mom to la gut/immune problems).

Dale-

This is the longest we have ever gone between IVIG treatments (4.5 weeks) and,

of course, out daughter is now getting a rash on her bottom and very

uncomfortable. I am never doing this again. Thanks for your post about rare

antibodies in IVIG having a shorter half life. You are awesome.

thedonicoherd@... wrote:

hi! someone just posted about a child who was 6 and possibly getting a tube?

the child weighed 35 pounds.

my younger daughter is having issues as she always has with eating. what is

all this talk about stomach stuff?? im lost! she is 4 1/2 26 pounds and that is

only after

6 months of periactin in which she gained a whole 2 pounds at maximum dose!

the ped only says if she loses any more weight she will be in the hospital on

iv. but something is DEFINETLY wrong with her eating. she has adhd and ive

tried blamming the adhd for it, but i cnat make it fit feeling wise in my gut.

any ideas? or thoughts?

maggie

[Guest guest]

In a message dated 1/18/2005 8:46:49 PM Pacific Standard Time,

thedonicoherd@... writes:

why do i keep seeing everyone discussing bringing in there kids late to

the drs and waiting it out. i ussualy try to wait it out with kaitlin, it

sounds as if u guys are refering that it makes them worse??

Hi Maggie,

We are always doing this juggling act--if we take them in too soon, the

Docs can't see anything clinical yet. If we wait too long, the infection is

harder to treat. On top of all of that, we can see when our kids are getting

infected (by their behavior) sooner than the Docs can see anything. So, we're

always trying to get it just right in taking them in.

I have a few terms I use here--one of them is SINUS INFECTION BEHAVIOR. It

refers to the behavior my son has when he is actively infected. Most here

see the same thing. Our usually sweet kiddos get downright difficult and

somewhat belligerent. For my son, it is his coping mechanism--he tries to just

ignore the pain.

So...when I first see the Sinus Infection Behavior (or ear infection

behavior or the dreaded BOTH infections behavior), I try to wait a little while

before taking him in. But it's hard to wait it out!!

Sandi, Mom to , age 11. Polysaccharide deficiency, IgG1 subclass

deficiency, Tetrology of Fallot, Pulmonary valve transplant (2003), Mitral valve

stenosis, chronic ear, nose and throat infections--including strep, COPD,

asthma,

severe allergies (including meds), Carnitine deficiency, GERD, suspected

Velocardiofacial syndrome.

[Guest guest]

In a message dated 1/19/2005 7:36:22 AM Pacific Standard Time,

thedonicoherd@... writes:

or do they use stronger antibiotics then like zythromax or augmentin or

biaxin?

Maggie,

Yes, and sometimes they get a shot of Rocephin before the oral antibiotics.

Pneumonia is treated very aggressively by most Docs--especially with our

kids.

Sandi, Mom to , age 11. Polysaccharide deficiency, IgG1 subclass

deficiency, Tetrology of Fallot, Pulmonary valve transplant (2003), Mitral valve

stenosis, chronic ear, nose and throat infections--including strep, COPD,

asthma,

severe allergies (including meds), Carnitine deficiency, GERD, suspected

Velocardiofacial syndrome.

[Guest guest]

Our pediatrician prescribes the antibiotics based on a treatment plan

developed by our pediatric immunologist. But we see the ped for everything

and save the immunologist for every 6 months visit.

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/