Re: im terrified, PLEASE SOMEONE TALK TO ME

[Guest guest]

Traci had pneumonia last year. Talk about feeling bad.. On the way to school,

she ask me what she should do if it hurt too much to walk? I pulled the car

over and talked to her. I found out that it hurt her to cough and breathe. She

had not told me any of this until that morning. I took her straight to the

doctor. He couldn't believe that she was functioning with lungs that looked as

bad as hers. She had no fever and just a little cough, nothing unusual. Needless

to say we went in for IVs. Her pain threshold is so high.

Lynette Carwana

[Guest guest]

,

had pneumonia 2 years ago. Her pulm IMMEDIATELY had her admitted to

the hospital...for 10 days. I know that doctors have different methods -

but if he has had this going on for this long - something needs to give.

I don't know what to tell you except maybe to ride them harder - and get

them to admit him. That's what they are paid for.

, Momma to (5 yow/cf)

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[Guest guest]

I don't know a lot about all of your concerns but one of them I do know a

little about. The zithromax thing, being on for 14 days, well, my daughter

takes

it Monday, Wednesday, and Friday. This has been since May of this year. She

was previously on Clindomycin for 3-6 weeks at a time since she has cultured

pseudomonis. When she started culturing staph they did a round of vancomycin,

tobramycin, and fortaz while in the hospital and started her on the zithromax

at the same time. She will be on that antibiotic until she is resistant to

it is my understanding.

I don't think I would worry too much about what the pharmacist said about 14

days being a long time to be on zithromax. I could be wrong, since your son

is younger than my daughter. I don't know. I just know that has

almost always been on some type of " maintance " antibiotic and those last for

months

at a time. There have been some times when she didn't take them because she

was doing so well but not often.

is a pretty " healthy " cfer. She was going in the hospital frequently

until we changed doctors. Since then she has only been in one time (last

May). I am very anxious to see what October and November bring. She usually

goes in toward the end of October and then for sure we will spend New Years in

the hospital. We have for the last 3 years at least. Maybe this year we will

skip both of our regular hospital dates. Wouldn't that be nice!!!!!

Anyway, good luck with your little boy and I hope things get better.

Sue Pettit

mom to (16 wocf) driving and being the most responsible 16 yo I have

ever seen, (13 wocf) playing football, band, and whatever else he can

get into, and (11 wcf) into all sports, running full speed doing all

she can and still doing great---diagnosed at 8 days of age at LeBonheur

Childrens Medical Center in Memphis, Tennessee, now seeing Doctor Lyrene (and

other

wonderful folks of course) at UAB Children's Hospital

[Guest guest]

--- In cfparents , findacureforcf@a... wrot

Hi, from my experinces with my son,

It sounds like your doctors are trying different oral antibiotics to

see if whatever organism he is fighting right now is susceptible.

IF they find the right one great, he will feel better, his sats will

rise and weight gain will start. If this is the wrong antibiotic

though 14 days of zithro will help a little but when the 14 days are

up he will be right back to the way he is now.(zithro will clear the

ear infections up)

You should try to get a sputum sample to the lab and make sure they

understand how to culture for a cystic fibrosis sputum because its

different then other typical sputum cultures.

Once they know whats growing they can run a sensitivity on it and

get the right antibiotic the first time.

For years my son could not cough up sputum on demand and he had to

have a deep gag culture done. Plus at five he was to young for a

good PFT test.

with my son we never noticied Pulmozyme to cause a increase in

cough. It actually helped calm his cough by decreasing the

viscocity of his sputum and allowing the cillia to do there thing.

what CF clinic are you dealing with?

good luck hope he gets better soon.

Angelina, mom of Mikey 10yrs wcf and two girls 18 and 15 wocf.

[Guest guest]

--- In cfparents , findacureforcf@a... wrot

Hi, from my experinces with my son,

It sounds like your doctors are trying different oral antibiotics to

see if whatever organism he is fighting right now is susceptible.

IF they find the right one great, he will feel better, his sats will

rise and weight gain will start. If this is the wrong antibiotic

though 14 days of zithro will help a little but when the 14 days are

up he will be right back to the way he is now.(zithro will clear the

ear infections up)

You should try to get a sputum sample to the lab and make sure they

understand how to culture for a cystic fibrosis sputum because its

different then other typical sputum cultures.

Once they know whats growing they can run a sensitivity on it and

get the right antibiotic the first time.

For years my son could not cough up sputum on demand and he had to

have a deep gag culture done. Plus at five he was to young for a

good PFT test.

with my son we never noticied Pulmozyme to cause a increase in

cough. It actually helped calm his cough by decreasing the

viscocity of his sputum and allowing the cillia to do there thing.

what CF clinic are you dealing with?

good luck hope he gets better soon.

Angelina, mom of Mikey 10yrs wcf and two girls 18 and 15 wocf.

[Guest guest]

Hi ,

I am sorry to hear that is so sick right now. I know that when

has been sick and her stats were below 95 they put her in right away. this

might be different though because she was only 2 at the time.

The pharmacist is wrong about the Zithromax though. It is usually prescribed

for five days only but that is not how they do it for people with CF. They are

prescribing it for more extended use for people with CF more often.

Didn't they x ray him at the ER? It sounds like you are getting the runaround.

He might need to go in for IV antibiotics. It might just make him feel better.

Good Luck, I hope he feels better soon.

im terrified, PLEASE SOMEONE TALK TO ME

Hi all, Well we ended up in the emergency room last night, woke up

crying that he was in pain in his ear. H e also has been coughing horribly but

his cf nurse said that was to be expected from the pulmozyme, well guess what,

has Pneumonia and a middle ear infection in both ears, the right one

having it worse. This is the second case of pneumonia he has had in 6 months.

The ER doctor told me that his o2 stats are a concern, we couldn't get them

above 94, that was even after a breathing treatment, He told me that if

isn't improved by tomorrow then we need to have him admitted to the hospital,

I'm scared, I called his pulmonogolist and they told me to up his vest and

nebulizer, so we are looking at 4 x vest and 4xneb, he has been placed on

zithromax for 14 days, the pharmacist told me that must have it bad

because

they don't normally prescribe that long on that antibiotic. I am upset with

myself because just 3 weeks ago we were in to see the pulm and had

that

cough, He was placed on bactrim for 14 days, and that was when he was placed

on

the pulmozyme, his cf nurse told me that he would get a cough to bring up the

mucus because that is what the medicine is supposed to do, has lost

another 3 pounds, which brings it to a total of 5 pounds. I should have

realized

that something wasn't right, I just assumed the cough was from the pulmozyme,

The pulmonogolist doesn't seem to worried about his o2 stats being low or

being admitted to the hospital, he just wants to be seen by his

regular

pediatrician, the ER doctor was ready to admit but he held out because

he wanted to have checked out with his pulm first. His pulm wants us

to wait until Thursday to see if he is improved and if then he isn't then we

would go into see him, also the ER doctor wrote a school note that says he

cannot return to school without being seen by the pulm DR first. Do you think

it

will matter if the ped sees him to ok him if he goes back to school, I

definitely want an x ray to make sure he is cleared of the pneumonia just to

be on the

safe side. I am sorry I am rambling I just have so much on my mind, Im scared

about his o2 stats, they will go back up right? I'm scared about his lungs,

I'm scared. Thanks to all for responding

, mommy of 5 years old w/cd/adhd/allergies and 2 years old

no cf

[Guest guest]

As I read some of the posts it made me realized that we are more

knowledgeble than a lot of these nitwits that call themselves

doctors.

I agree with , although I do not have 's experience.

Get another doctor! I can not believe that the pulmonologist is not

concerned with his O2! That jerk sounds like our first doctor, we

only saw him once, but that was enough.

> Hi ,

> I am sorry to hear that is so sick right now. I know that

when has been sick and her stats were below 95 they put her

in right away. this might be different though because she was only

2 at the time.

>

> The pharmacist is wrong about the Zithromax though. It is usually

prescribed for five days only but that is not how they do it for

people with CF. They are prescribing it for more extended use for

people with CF more often.

>

> Didn't they x ray him at the ER? It sounds like you are getting

the runaround. He might need to go in for IV antibiotics. It might

just make him feel better.

> Good Luck, I hope he feels better soon.

>

> im terrified, PLEASE SOMEONE TALK TO ME

>

>

> Hi all, Well we ended up in the emergency room last night,

woke up

> crying that he was in pain in his ear. H e also has been

coughing horribly but

> his cf nurse said that was to be expected from the pulmozyme,

well guess what,

> has Pneumonia and a middle ear infection in both ears,

the right one

> having it worse. This is the second case of pneumonia he has had

in 6 months.

> The ER doctor told me that his o2 stats are a concern, we

couldn't get them

> above 94, that was even after a breathing treatment, He told me

that if

> isn't improved by tomorrow then we need to have him admitted to

the hospital,

> I'm scared, I called his pulmonogolist and they told me to up

his vest and

> nebulizer, so we are looking at 4 x vest and 4xneb, he has been

placed on

> zithromax for 14 days, the pharmacist told me that must

have it bad because

> they don't normally prescribe that long on that antibiotic. I am

upset with

> myself because just 3 weeks ago we were in to see the pulm and

had that

> cough, He was placed on bactrim for 14 days, and that was when

he was placed on

> the pulmozyme, his cf nurse told me that he would get a cough to

bring up the

> mucus because that is what the medicine is supposed to do,

has lost

> another 3 pounds, which brings it to a total of 5 pounds. I

should have realized

> that something wasn't right, I just assumed the cough was from

the pulmozyme,

> The pulmonogolist doesn't seem to worried about his o2 stats

being low or

> being admitted to the hospital, he just wants to be seen

by his regular

> pediatrician, the ER doctor was ready to admit but he

held out because

> he wanted to have checked out with his pulm first. His

pulm wants us

> to wait until Thursday to see if he is improved and if then he

isn't then we

> would go into see him, also the ER doctor wrote a school note

that says he

> cannot return to school without being seen by the pulm DR first.

Do you think it

> will matter if the ped sees him to ok him if he goes back to

school, I

> definitely want an x ray to make sure he is cleared of the

pneumonia just to be on the

> safe side. I am sorry I am rambling I just have so much on my

mind, Im scared

> about his o2 stats, they will go back up right? I'm scared about

his lungs,

> I'm scared. Thanks to all for responding

>

> , mommy of 5 years old w/cd/adhd/allergies and

2 years old

> no cf

>

>

>

[Guest guest]

Is this pulmonologist 's CF doc? It doesn't sound like it to me.

Have any cultures been taken (throat or sputum) to see what bacteria

is fighting? That's something that should be done right away if

it hasn't already been done. I'm mostly surprised that the pulmo doc

wants you to see the pediatrician. And I'm also surprised that he wants

to wait until Thursday. Perhaps he's thinking it's a virus??? I know

that if Kate was coughing like that, had low O2 sats, and was losing

weight, her docs would admit her right away. I would definitely try to

get in to see a CF doc somewhere. If that's just not possible right

away, then go see the pediatrician and get the culture taken. (That way

the culture will probably be ready by Thursday for the pulmo

appointment.) I'm guessing you'll have to coach them on how to do the

culture. Also ask the pediatrician to arrange for an xray if one hasn't

been done and check the O2 saturation again.

You're right about this being a scary situation. And it's so much

harder when you're getting conflicting opinions from your doctors.

Please let us know how is doing.

Jane

Mom of Kate, 4 w/cf

im terrified, PLEASE SOMEONE TALK TO ME

Hi all, Well we ended up in the emergency room last night, woke

up

crying that he was in pain in his ear. H e also has been coughing

horribly but

his cf nurse said that was to be expected from the pulmozyme, well guess

what,

has Pneumonia and a middle ear infection in both ears, the right

one

having it worse. This is the second case of pneumonia he has had in 6

months.

The ER doctor told me that his o2 stats are a concern, we couldn't get

them

above 94, that was even after a breathing treatment, He told me that if

isn't improved by tomorrow then we need to have him admitted to the

hospital,

I'm scared, I called his pulmonogolist and they told me to up his vest

and

nebulizer, so we are looking at 4 x vest and 4xneb, he has been placed

on

zithromax for 14 days, the pharmacist told me that must have it

bad because

they don't normally prescribe that long on that antibiotic. I am upset

with

myself because just 3 weeks ago we were in to see the pulm and

had that

cough, He was placed on bactrim for 14 days, and that was when he was

placed on

the pulmozyme, his cf nurse told me that he would get a cough to bring

up the

mucus because that is what the medicine is supposed to do, has

lost

another 3 pounds, which brings it to a total of 5 pounds. I should have

realized

that something wasn't right, I just assumed the cough was from the

pulmozyme,

The pulmonogolist doesn't seem to worried about his o2 stats being low

or

being admitted to the hospital, he just wants to be seen by his

regular

pediatrician, the ER doctor was ready to admit but he held out

because

he wanted to have checked out with his pulm first. His pulm

wants us

to wait until Thursday to see if he is improved and if then he isn't

then we

would go into see him, also the ER doctor wrote a school note that says

he

cannot return to school without being seen by the pulm DR first. Do you

think it

will matter if the ped sees him to ok him if he goes back to school, I

definitely want an x ray to make sure he is cleared of the pneumonia

just to be on the

safe side. I am sorry I am rambling I just have so much on my mind, Im

scared

about his o2 stats, they will go back up right? I'm scared about his

lungs,

I'm scared. Thanks to all for responding

, mommy of 5 years old w/cd/adhd/allergies and 2

years old

no cf

[Guest guest]

.. The Pharacist is wrong about the Zithomax - many times our Dr. puts

them on stuff for 3-4 weeks. I would ask the Drs. at what point would They

consider hospitalization or home IV's.

You are the best judge of how he is responding. Don't wait too long or for

Friday to make a decision.

Its a holiday weekend coming up so be careful.

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

,

Hey, sounds like you are going through a lot right now.... If I can

help..... all of the antibiotics my has been prescribed have been for 14

days at a time. They always do that with CF---to make sure they knock it out...

you're not dealing with an average pneumonia... the pharmacist shouldn't have

scared you like that. Sure, the general population goes on stuff for 10 days at

a time but she should educate herself on CF.. Also his 02 sats will come back

up.. Of course they are going to be down if he has pneumonia.. That means he had

inflammation and extra mucus in his lungs which decreases surface area for gas

exchange. A couple of days of vest and nebs and pulmonary toilet should improve

that. The thing with CF, most other docs don't understand the whole dynamic..

You really can't look at 02 sats like that in this condition.. There are

probably times at home when our kids sats dip a bit. it comes with the

territory... The best way to bring up those sats is to 1.) kill or decrease the

number of bacteria living in the lungs, causing the problem, (Zithromax will do

it), 2.) decrease inflammation (which is why they often put kids on short runs

of steroids) also studies have shown that zithromax has that effect on cf lungs

--it's unknown why), and 3.)bronchodilate to improve gas exchange (nebs), 4.)

pulmonary toilet - to clear out all the excess mucus (chest pt). You are doing

it right... you are a good mom, I know you love a lot but be confident

in your CF docs.. they are giving you great tools to care for him. Hang in

there , you know, we are a special group of people, us CF parents~~~ we

have a special calling to care for and love these great kids. You did the right

thing, but hang in there.. and don't forget to take care of you... Maybe a nice

bubble bath and a book It's hard work but we are good at aren't we?

Love,

, Mom to Allie 5

with CF, Connor 3 without CF and a new one on the way !!!!!!! and a Critical

Care RN... wait, I am doing too much, I should take a bubble bath with a good

book too!

im terrified, PLEASE SOMEONE TALK TO ME

Hi all, Well we ended up in the emergency room last night, woke up

crying that he was in pain in his ear. H e also has been coughing horribly

but

his cf nurse said that was to be expected from the pulmozyme, well guess

what,

has Pneumonia and a middle ear infection in both ears, the right one

having it worse. This is the second case of pneumonia he has had in 6

months.

The ER doctor told me that his o2 stats are a concern, we couldn't get them

above 94, that was even after a breathing treatment, He told me that if

isn't improved by tomorrow then we need to have him admitted to the

hospital,

I'm scared, I called his pulmonogolist and they told me to up his vest and

nebulizer, so we are looking at 4 x vest and 4xneb, he has been placed on

zithromax for 14 days, the pharmacist told me that must have it bad

because

they don't normally prescribe that long on that antibiotic. I am upset with

myself because just 3 weeks ago we were in to see the pulm and had

that

cough, He was placed on bactrim for 14 days, and that was when he was placed

on

the pulmozyme, his cf nurse told me that he would get a cough to bring up

the

mucus because that is what the medicine is supposed to do, has lost

another 3 pounds, which brings it to a total of 5 pounds. I should have

realized

that something wasn't right, I just assumed the cough was from the

pulmozyme,

The pulmonogolist doesn't seem to worried about his o2 stats being low or

being admitted to the hospital, he just wants to be seen by his

regular

pediatrician, the ER doctor was ready to admit but he held out

because

he wanted to have checked out with his pulm first. His pulm wants us

to wait until Thursday to see if he is improved and if then he isn't then we

would go into see him, also the ER doctor wrote a school note that says he

cannot return to school without being seen by the pulm DR first. Do you

think it

will matter if the ped sees him to ok him if he goes back to school, I

definitely want an x ray to make sure he is cleared of the pneumonia just to

be on the

safe side. I am sorry I am rambling I just have so much on my mind, Im

scared

about his o2 stats, they will go back up right? I'm scared about his lungs,

I'm scared. Thanks to all for responding

, mommy of 5 years old w/cd/adhd/allergies and 2 years

old

no cf

[Guest guest]

,

I will be " thinking " about you and yours during this furstating,

terrifing time. My son only 2and half was admitted at a time less

severe than this. His doc would have wanted to see him

immediately...everyone correct in saying get a sputum sample to test

for the type of bacteria and their resistance. has had infant

PFT's (we just recieved machine at our hospital for younger children

this and it is passed by FDA)AWESOME! about 5 times now and that

helps to determine alot. He has also had bronchs everytime as well.

s wasn't as bad as they had thought he grew out less than

10,0000 staph although he seemed very, very sick our doc was even

afraid. She had started him on ivs in hospital and chose to leave

him on those even with the " good " results of the broch. He is doing

well now and I wish all the best for . Crystal

> Is this pulmonologist 's CF doc? It doesn't sound like it

to me.

> Have any cultures been taken (throat or sputum) to see what bacteria

> is fighting? That's something that should be done right

away if

> it hasn't already been done. I'm mostly surprised that the pulmo

doc

> wants you to see the pediatrician. And I'm also surprised that he

wants

> to wait until Thursday. Perhaps he's thinking it's a virus??? I

know

> that if Kate was coughing like that, had low O2 sats, and was losing

> weight, her docs would admit her right away. I would definitely

try to

> get in to see a CF doc somewhere. If that's just not possible right

> away, then go see the pediatrician and get the culture taken.

(That way

> the culture will probably be ready by Thursday for the pulmo

> appointment.) I'm guessing you'll have to coach them on how to do

the

> culture. Also ask the pediatrician to arrange for an xray if one

hasn't

> been done and check the O2 saturation again.

>

>

>

> You're right about this being a scary situation. And it's so much

> harder when you're getting conflicting opinions from your doctors.

> Please let us know how is doing.

>

>

>

> Jane

>

> Mom of Kate, 4 w/cf

>

>

>

> im terrified, PLEASE SOMEONE TALK TO ME

>

>

>

> Hi all, Well we ended up in the emergency room last night,

woke

> up

> crying that he was in pain in his ear. H e also has been coughing

> horribly but

> his cf nurse said that was to be expected from the pulmozyme, well

guess

> what,

> has Pneumonia and a middle ear infection in both ears, the

right

> one

> having it worse. This is the second case of pneumonia he has had in

6

> months.

> The ER doctor told me that his o2 stats are a concern, we couldn't

get

> them

> above 94, that was even after a breathing treatment, He told me

that if

>

> isn't improved by tomorrow then we need to have him admitted to the

> hospital,

> I'm scared, I called his pulmonogolist and they told me to up his

vest

> and

> nebulizer, so we are looking at 4 x vest and 4xneb, he has been

placed

> on

> zithromax for 14 days, the pharmacist told me that must

have it

> bad because

> they don't normally prescribe that long on that antibiotic. I am

upset

> with

> myself because just 3 weeks ago we were in to see the pulm and

> had that

> cough, He was placed on bactrim for 14 days, and that was when he

was

> placed on

> the pulmozyme, his cf nurse told me that he would get a cough to

bring

> up the

> mucus because that is what the medicine is supposed to do,

has

> lost

> another 3 pounds, which brings it to a total of 5 pounds. I should

have

> realized

> that something wasn't right, I just assumed the cough was from the

> pulmozyme,

> The pulmonogolist doesn't seem to worried about his o2 stats being

low

> or

> being admitted to the hospital, he just wants to be seen by

his

> regular

> pediatrician, the ER doctor was ready to admit but he held

out

> because

> he wanted to have checked out with his pulm first. His pulm

> wants us

> to wait until Thursday to see if he is improved and if then he isn't

> then we

> would go into see him, also the ER doctor wrote a school note that

says

> he

> cannot return to school without being seen by the pulm DR first. Do

you

> think it

> will matter if the ped sees him to ok him if he goes back to

school, I

> definitely want an x ray to make sure he is cleared of the pneumonia

> just to be on the

> safe side. I am sorry I am rambling I just have so much on my mind,

Im

> scared

> about his o2 stats, they will go back up right? I'm scared about his

> lungs,

> I'm scared. Thanks to all for responding

>

> , mommy of 5 years old w/cd/adhd/allergies and 2

> years old

> no cf

>

>

>