Re: staph question

[Guest guest]

Firstly, you have the right to insist on a copy of all results of tests

performed on your child. This includes PFT's, blood work, etc.... Demand

they give you this info, then search the web for interpretation of your son's

PFT's if the docs won't go over it all with you. Is your child being seen at

an accredited CF center? If so, perhaps you should call the CF Foundation

(800 FIGHTCF) and report the center's unwillingness to work with you.

Amber

Nick's mom

[Guest guest]

This post made me write to all of you to see what you all think. My

husband has forbidden me from doing anything, but what happened to

us at the CF Foundation here in Memphis, TN. still is bugging the

heck out of me. When a was first diagnosed almost a year ago,

she was in bad shape, neumonia, collapsed lung, she was so skinny I

mean my poor baby was very sick. The x-ray showed some damaged to

her lungs. We went to the cf foundation , and the doctor that saw

her put her right away on cipro, he told us that the vest was too

expensive and we could not afford it! We had a Physiotherapist give

us a 20 mins drill on how to do chest pts. The dotor never

mentioned to us Tobi, Pulmozyme, or any other maintance drug that

could keep a healthy. I mentioned that I had noticed that

spring and fall were the months where her nose would go in a frenzy

suggesting to me allergies, well, he just told me, Oh, you can have

her tested for allergies I don't really care. Knowing good and well

that this is one way she gets more problems, it is a vicious cycle.

Now, he made sure that we signed all the papers for the foundation,

he would not let us go until we signed the papers. Later I wanted

to talk to him after the x-rays came back and he could not wait for

us, I waited outside his office for about 35 mins. and finally the

secretary told me he had gone home for the day and that he would

call me later. Well, the next day he call me and told me like he

was talking about the dog that got hit in the curve, that a had

bronchiastisia(sp), knowing what it meant, I held my tears, this so

called doctor does not have compassion, I asked him for somebody to

come to my house and teach me chest pt, guess what his answer was,

insurance won't pay for it, at that point I was ready to kill, and i

did not yet know how low class this doctor was. We were lucky

enough that my brother in law's next door neighbor is a doctor and

he made an appointment with another doctor right away. We went to

see our new doctor that same week, when we got out of there a

had a prescription for Tobi, pulmozyme, the vest was ordered,

granted it was denied by our insurance last month, but we still have

it( the insurance says luisa is too young to get any benefits from

the vest!!). He sat with me and gave me hope, you know I realize

that some doctors have no bed side manners but this was not a case

of bed side manners this was a case of incompetence, negligence I

guess he figure we were just a pair of ignorant human beings. I

talked to one of luisa's pediatritians, she has a child with asthma

and she said to me that if he is the doctor in there that day, she

will not take her child overthere!! What do you all think?, is this

normal, am I overreacting, I have for a whole year. He is the

reason we are not at a CF center. everybody says the other doctor

that works there is very good, makes me wonder, it is common

knowledge that this guy is not very good, I know that now after

talking to so many people that I have met, that either have a child

with cf or asthma.

Sorry for the long post but I had to get this out of my chest it was

killing me.

mom of a 9 wcf, Venanzio 6 nocf, Pepe 3 nocf

> Firstly, you have the right to insist on a copy of all results of

tests

> performed on your child. This includes PFT's, blood work,

etc.... Demand

> they give you this info, then search the web for interpretation of

your son's

> PFT's if the docs won't go over it all with you. Is your child

being seen at

> an accredited CF center? If so, perhaps you should call the CF

Foundation

> (800 FIGHTCF) and report the center's unwillingness to work with

you.

>

> Amber

> Nick's mom

[Guest guest]

I personally would go to the hospital Administrator. Tell him what you

told us & /or send it to him (or her).They should know when a doctor

isn't do the right thing by your child(the patient)-he should be willing

to call in for another opinion in that clinic. We don't expect them to

be God's...., just willing to learn as we are. I would continue to go to

the one who really is helping your child............That is the bottom

line. However , how many other children are NOT getting as good of care

as is out there by other docs...........??? I hope all is well with your

little precious one & continues to improve

LOVE & HUGS, grandmomBEv

Re: staph question

This post made me write to all of you to see what you all think. My

husband has forbidden me from doing anything, but what happened to

us at the CF Foundation here in Memphis, TN. still is bugging the

heck out of me. When a was first diagnosed almost a year ago,

she was in bad shape, neumonia, collapsed lung, she was so skinny I

mean my poor baby was very sick. The x-ray showed some damaged to

her lungs. We went to the cf foundation , and the doctor that saw

her put her right away on cipro, he told us that the vest was too

expensive and we could not afford it! We had a Physiotherapist give

us a 20 mins drill on how to do chest pts. The dotor never

mentioned to us Tobi, Pulmozyme, or any other maintance drug that

could keep a healthy. I mentioned that I had noticed that

spring and fall were the months where her nose would go in a frenzy

suggesting to me allergies, well, he just told me, Oh, you can have

her tested for allergies I don't really care. Knowing good and well

that this is one way she gets more problems, it is a vicious cycle.

Now, he made sure that we signed all the papers for the foundation,

he would not let us go until we signed the papers. Later I wanted

to talk to him after the x-rays came back and he could not wait for

us, I waited outside his office for about 35 mins. and finally the

secretary told me he had gone home for the day and that he would

call me later. Well, the next day he call me and told me like he

was talking about the dog that got hit in the curve, that a had

bronchiastisia(sp), knowing what it meant, I held my tears, this so

called doctor does not have compassion, I asked him for somebody to

come to my house and teach me chest pt, guess what his answer was,

insurance won't pay for it, at that point I was ready to kill, and i

did not yet know how low class this doctor was. We were lucky

enough that my brother in law's next door neighbor is a doctor and

he made an appointment with another doctor right away. We went to

see our new doctor that same week, when we got out of there a

had a prescription for Tobi, pulmozyme, the vest was ordered,

granted it was denied by our insurance last month, but we still have

it( the insurance says luisa is too young to get any benefits from

the vest!!). He sat with me and gave me hope, you know I realize

that some doctors have no bed side manners but this was not a case

of bed side manners this was a case of incompetence, negligence I

guess he figure we were just a pair of ignorant human beings. I

talked to one of luisa's pediatritians, she has a child with asthma

and she said to me that if he is the doctor in there that day, she

will not take her child overthere!! What do you all think?, is this

normal, am I overreacting, I have for a whole year. He is the

reason we are not at a CF center. everybody says the other doctor

that works there is very good, makes me wonder, it is common

knowledge that this guy is not very good, I know that now after

talking to so many people that I have met, that either have a child

with cf or asthma.

Sorry for the long post but I had to get this out of my chest it was

killing me.

mom of a 9 wcf, Venanzio 6 nocf, Pepe 3 nocf

> Firstly, you have the right to insist on a copy of all results of

tests

> performed on your child. This includes PFT's, blood work,

etc.... Demand

> they give you this info, then search the web for interpretation of

your son's

> PFT's if the docs won't go over it all with you. Is your child

being seen at

> an accredited CF center? If so, perhaps you should call the CF

Foundation

> (800 FIGHTCF) and report the center's unwillingness to work with

you.

>

> Amber

> Nick's mom

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

------------------------------------

[Guest guest]

MRSA is Methicillian resistand staph areaus...it is resistant to

penicillian...so the same.

Keep asking questions..I drive my clinic NUTS, but I get the answers I need to

understand..dont give up on that..hang in there. Paige has MRSA...she has

cultured it for almost 2 years...she may have to go into the hosptial soon.

I just dont know..so I keep asking..and asking. Its amazing how they leave out

the " little " details...that we NEED sometimes.

Hang in there mom,

Mom to KM 8 wocf, and Paige 3 wcf, and author of " Juggling Cystic Fibrosis. A

Health Journal "

staph question

Can someone please explain the difference (if there is any) between

penicillin resistant staph and methicillin restitant staph. I've

been told my son's staph is penicillin resistant, does that mean

MRSA? I've also been told that his pseudomonas is nothing to be

concerned about and they aren't going to treat it, then 2 weeks later

they put him on cipro and tobi and decided not to give him IV because

his pft's are up (although I don't know how they could say they were

up, because they told me when i asked about the last ones, i was told

they were invalid and they refused to give me the results).

I'm getting frustrated with what I don't know.

Thanks,

Steph (mom of Iain, 6, wcf)