RE: guilty about pneumonia

[Guest guest]

In a message dated 1/19/2005 8:58:53 PM Eastern Standard Time,

sassykay59@... writes:

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.

Yeah it's a funny thing. My Brittany and I always new when she was getting

an infection. I would take her in to see the doctor then. I remember him

saying to me " you can wait until she gets it before you bring her in. " This was

before we knew she had an Immune Def. Now he doesn't say it anymore. (LOL)

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 1/19/2005 8:58:53 PM Eastern Standard Time,

sassykay59@... writes:

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.

Yeah it's a funny thing. My Brittany and I always new when she was getting

an infection. I would take her in to see the doctor then. I remember him

saying to me " you can wait until she gets it before you bring her in. " This was

before we knew she had an Immune Def. Now he doesn't say it anymore. (LOL)

Janet, Mom to Brittany, CVID, age 14

[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

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What we do for Blake:

When he starts to show signs that something " funky " is starting up,

we place a call to the Pediatrician. Then we wait for 5-7 days. If he

is worse(usually is) he goes to see the Ped. What is soooo great

about this Ped. is she has a room that is not used except for

children who have issues such as Blake or CF. This room is cleaned

down every day, & when we show up with Blake they take us in the back

door & right into the room. The Pediatrician will make the Dx &

usually sends him for a CAT scan of the sinuses & x-rays of the

chest. Then we go from there as to what abx he is placed on.

Because of his severe allergies to the oral meds, Blake is more than

not placed on IV meds. The standard for him is 21 days.

If he continues after day 14 with any issue he goes to the

Immunologist & Pulmonologist, they in turn will do scans so they can

compare & see what needs to be done next. Usually he sees the

Immunologist every 2 months(his orders) & the Pulmo. is visited every

3-4 weeks. At the Immuno & Pulmo. PFT's are done because of the Lung

issues Blake has had all of his life (his PFT's have never been over

40%). But the main one that handles Blake's antibiotic & line care

is the Pulmonologist.She acts as the Primary Care Doc. due to the

inurance we have on Blake. When the Peiatrician gets them up &

running she calls the Pulmo. who always follows up to make sure he is

getting better. most of the time he is off the meds. at 21 days.

Then the " waiting for the other shoe to drop " game begins.

(mom to Blake 12, soon to be 13 .....going on 30 CVID with

completet T-Cell Dysfunction....IVIG every 2 weeks....Asthma,GERD,

Intergrated Sensory Motor Skills Delays,CAPD, LOVES to read.... &

really thinks he is indestructable!!!!)

[Guest guest]

In a message dated 1/19/2005 10:04:02 AM Central Standard Time,

thedonicoherd@... writes:

> 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??

>

Maggie: Yes, IVIG is IntraVenous ImmunoGlobulin. The immuno wanted to

start it when she was 1-1/2, her numbers were pretty bad and they thought it

was a permanent PID. We hesitated, I wanted to do research first, I was afraid

of the treatment. Did a ton of research, got tired of seeing her sick and

decided we wanted IVIG. Went for the next round of tests and at age 2 her IgG

had

popped up to the low 500s and the immuno said she was no longer a candidate for

IVIG! Just when I had decided it was the best idea!!!

is on no regular meds. She takes prevacid when her reflux is bothering

her, but not daily. Last year's preschool was her first year in a school

setting. She had three sinus infections in the fall along with probably four

colds,

a gastro virus, then two pneumonias in late Winter/early Spring, another

gastro virus, a resistant sinus infection, then in June an ear infection with a

ruptured eardrum. She had Ceftin, Omnicef, Zithromax or Augmentin, depending on

what it was and what she had just had the infection before. She was fine from

late June to the start of school.

So far this school year (K) she has had three ear infections, four colds, two

gastro viruses and a pneumonia. She has had Omnicef and Augmentin.

Her lungs sound worse today so I'm thinking the Augmentin isn't the right

med, maybe she has mycoplasma or viral. I think mycoplasma based on her being

sicker than she looks. She does not look very sick!

She's supposed to have her 6th birthday party here with her friends on

Saturday. I keep wavering but I think we'll end up postponing it. Any time she

runs

around or gets excited she has terrible coughing fits and that's no fun.

She'll be okay if we change it -- she's had a ton of experience in missing

events

from being sick. She's pretty used to it and we'll make it up to her. It's

all girls from the neighborhood so it would be easy to change. I'm just not

sure yet!

(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 10:04:02 AM Central Standard Time,

thedonicoherd@... writes:

> 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??

>

Maggie: Yes, IVIG is IntraVenous ImmunoGlobulin. The immuno wanted to

start it when she was 1-1/2, her numbers were pretty bad and they thought it

was a permanent PID. We hesitated, I wanted to do research first, I was afraid

of the treatment. Did a ton of research, got tired of seeing her sick and

decided we wanted IVIG. Went for the next round of tests and at age 2 her IgG

had

popped up to the low 500s and the immuno said she was no longer a candidate for

IVIG! Just when I had decided it was the best idea!!!

is on no regular meds. She takes prevacid when her reflux is bothering

her, but not daily. Last year's preschool was her first year in a school

setting. She had three sinus infections in the fall along with probably four

colds,

a gastro virus, then two pneumonias in late Winter/early Spring, another

gastro virus, a resistant sinus infection, then in June an ear infection with a

ruptured eardrum. She had Ceftin, Omnicef, Zithromax or Augmentin, depending on

what it was and what she had just had the infection before. She was fine from

late June to the start of school.

So far this school year (K) she has had three ear infections, four colds, two

gastro viruses and a pneumonia. She has had Omnicef and Augmentin.

Her lungs sound worse today so I'm thinking the Augmentin isn't the right

med, maybe she has mycoplasma or viral. I think mycoplasma based on her being

sicker than she looks. She does not look very sick!

She's supposed to have her 6th birthday party here with her friends on

Saturday. I keep wavering but I think we'll end up postponing it. Any time she

runs

around or gets excited she has terrible coughing fits and that's no fun.

She'll be okay if we change it -- she's had a ton of experience in missing

events

from being sick. She's pretty used to it and we'll make it up to her. It's

all girls from the neighborhood so it would be easy to change. I'm just not

sure yet!

(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]

thank you everyone! u have all been so helpfull!!! just wanted to say

thanks!! my dd is going to ent today. they are going to send her for ct

scan of

her sinuses and im sure they will do surgery on them for something cause they

are a horrible mess!!!

maggie

[Guest guest]

thank you everyone! u have all been so helpfull!!! just wanted to say

thanks!! my dd is going to ent today. they are going to send her for ct

scan of

her sinuses and im sure they will do surgery on them for something cause they

are a horrible mess!!!

maggie