CF Treatment Question

[Guest guest]

Hi again. I have a question regarding the way other CF Centers treat when

something is cultured in the lungs of children with CF. Here is my story. One

of my son's w/cf qualified to go to the national Junior Olympic championships

in FL for the decathalon. My other son Cory also w/cf began to feel like he

was getting an infection the day before we were to leave so I called the CF

center and asked them to call in a prescription for an antibiotic to take with

us. Cory ended up in the hospital in Florida due to serum poisoning from the new

sulfer based antiobiotic that was prescribed. Florida doctors took him off of

Both Cephalexin and Sulfam since both could cause reaction. This all happened

in July. I called in for appointment after we got back and was set up for

October date by appointment clerk. Cory wasn't feeling great, but he wasn't

feeling awful until about 2 weeks before appointment. When we got to the

clinic,

I asked why they prescribed a new medication in this situation. I was told

that at our quarterly visit in May, Cory had cultured two new organisms. I

can't tell you what they are because of the medical names and my high emotional

level at that time (I was very upset). I have asked for copy of the results but

have yet to get this. My reply was to ask why, if Cory cultured these

organisms in May, was it July that this was addressed. The doctor told me that

it

was their practice to culture sputum so that they knew what was growing in the

lungs but they did not treat it until the patient began feeling bad. Now,

since Cory has been off antibiotics since July he is doing very poorly. The

Sulfam, which he had a reaction to, is the only medication that fights the

organism efficiently, and I may have to put him in the hospital for IV

antibiotics.

Is this common practice not to treat what is growing in the lungs of CF person

until that person is getting ill? Seem a bit reactive instead of proactive

to me. This is not the first time he cultured something new that I was not

notified. When I ask about this I was told that it was up to me to call them to

get this information.

Edi Logan single mother of Cory 16 w/cf and 15 w/cf (who came in

14th nationally in the decathalon)

[Guest guest]

In a message dated 10/17/2003 2:10:28 PM Central Daylight Time,

Edinal1@... writes:

Edi Logan

I know each clinic is different but our clinic is very aggressive and I like

that! When my girls have something we don't mess around they get rid of it. I

would think you would have the right to do what you think it right for your

child. I would talk to the doctors more about this. Deb A

[Guest guest]

Edi,

The only thing they don't immediately treat in our clinic is

aspergillus(sp?) unless you have wheezing/asthma as well as cf. Eilish

cultures it maybe once a year then its not there. But for anything else

they treat aggressively and straight away. We also can have all tests

photocopied then and there if we want to. Why wait and let the

organisms take further hold? Seems strange.

(Australia)

CF Treatment Question

Hi again. I have a question regarding the way other CF Centers treat

when

something is cultured in the lungs of children with CF. Here is my

story. One

of my son's w/cf qualified to go to the national Junior Olympic

championships

in FL for the decathalon. My other son Cory also w/cf began to feel

like he

was getting an infection the day before we were to leave so I called the

CF

center and asked them to call in a prescription for an antibiotic to

take with

us. Cory ended up in the hospital in Florida due to serum poisoning from

the new

sulfer based antiobiotic that was prescribed. Florida doctors took him

off of

Both Cephalexin and Sulfam since both could cause reaction. This all

happened

in July. I called in for appointment after we got back and was set up

for

October date by appointment clerk. Cory wasn't feeling great, but he

wasn't

feeling awful until about 2 weeks before appointment. When we got to

the clinic,

I asked why they prescribed a new medication in this situation. I was

told

that at our quarterly visit in May, Cory had cultured two new organisms.

I

can't tell you what they are because of the medical names and my high

emotional

level at that time (I was very upset). I have asked for copy of the

results but

have yet to get this. My reply was to ask why, if Cory cultured these

organisms in May, was it July that this was addressed. The doctor told

me that it

was their practice to culture sputum so that they knew what was growing

in the

lungs but they did not treat it until the patient began feeling bad.

Now,

since Cory has been off antibiotics since July he is doing very poorly.

The

Sulfam, which he had a reaction to, is the only medication that fights

the

organism efficiently, and I may have to put him in the hospital for IV

antibiotics.

Is this common practice not to treat what is growing in the lungs of CF

person

until that person is getting ill? Seem a bit reactive instead of

proactive

to me. This is not the first time he cultured something new that I was

not

notified. When I ask about this I was told that it was up to me to call

them to

get this information.

Edi Logan single mother of Cory 16 w/cf and 15 w/cf (who came

in

14th nationally in the decathalon)

[Guest guest]

At our clinic, at least with Abby, the practice has been this: If

non-mucoid Pseudomonas is cultured they hammer the hell out of it

hoping to eradicate it because if it reaches the mucoid stage it's

there for good. Which I've learned is not the end of the world

either since it can be fairly effectively managed these days. But if

a bug is cultured that is very sensitive to antibiotics and there is

no active infection they might leave it alone. The reason they do is

because bacteria are territorial and once a bug colonizes studies

suggest that they keep other ones (possibly more dangerous ones) beat

back) They seem to make a lot of decisions on a case by case basis

and have been very aggressive in treating the non-mucoid Pa in Abby

but leaving alone the " heavy growth " of Proteus miribilis. If anyone

has ever had this bug (in theirs or their kid's lungs) let me know

because I have some questions.

Joe

> Edi,

>

> The only thing they don't immediately treat in our clinic is

> aspergillus(sp?) unless you have wheezing/asthma as well as cf.

Eilish

> cultures it maybe once a year then its not there. But for anything

else

> they treat aggressively and straight away. We also can have all

tests

> photocopied then and there if we want to. Why wait and let the

> organisms take further hold? Seems strange.

>

> (Australia)

>

> CF Treatment Question

>

>

> Hi again. I have a question regarding the way other CF Centers

treat

> when

> something is cultured in the lungs of children with CF. Here is my

> story. One

> of my son's w/cf qualified to go to the national Junior Olympic

> championships

> in FL for the decathalon. My other son Cory also w/cf began to feel

> like he

> was getting an infection the day before we were to leave so I

called the

> CF

> center and asked them to call in a prescription for an antibiotic to

> take with

> us. Cory ended up in the hospital in Florida due to serum poisoning

from

> the new

> sulfer based antiobiotic that was prescribed. Florida doctors took

him

> off of

> Both Cephalexin and Sulfam since both could cause reaction. This all

> happened

> in July. I called in for appointment after we got back and was set

up

> for

> October date by appointment clerk. Cory wasn't feeling great, but

he

> wasn't

> feeling awful until about 2 weeks before appointment. When we got

to

> the clinic,

> I asked why they prescribed a new medication in this situation. I

was

> told

> that at our quarterly visit in May, Cory had cultured two new

organisms.

> I

> can't tell you what they are because of the medical names and my

high

> emotional

> level at that time (I was very upset). I have asked for copy of the

> results but

> have yet to get this. My reply was to ask why, if Cory cultured

these

> organisms in May, was it July that this was addressed. The doctor

told

> me that it

> was their practice to culture sputum so that they knew what was

growing

> in the

> lungs but they did not treat it until the patient began feeling bad.

> Now,

> since Cory has been off antibiotics since July he is doing very

poorly.

> The

> Sulfam, which he had a reaction to, is the only medication that

fights

> the

> organism efficiently, and I may have to put him in the hospital for

IV

> antibiotics.

> Is this common practice not to treat what is growing in the lungs

of CF

> person

> until that person is getting ill? Seem a bit reactive instead of

> proactive

> to me. This is not the first time he cultured something new that I

was

> not

> notified. When I ask about this I was told that it was up to me to

call

> them to

> get this information.

> Edi Logan single mother of Cory 16 w/cf and 15 w/cf (who

came

> in

> 14th nationally in the decathalon)

>

>

>

[Guest guest]

Hi Edi,

there is an everlasting discussion, whether bugs have to be treated

agressively or not. As long as it's not pseudomonas aeruginosa or

burkholderia cepacia, I would agree with your doc.

BUT to me it is not tolerable that you don't receive a full report about the

lab results immediately and without any questions from your side. You are

their client, you pay their bills and it's the health of your kids. And you

have to have the chance for a second opinion and for that you need the full

report. I don't think that the clinic has the right to withhold that data

from you.

Peace

Torsten, dad of Fiona 6wcf and Sebastian 4months wocf

e-mail: torstenkrafft@...

CF Treatment Question

> Hi again. I have a question regarding the way other CF Centers treat when

> something is cultured in the lungs of children with CF. Here is my story.

One

> of my son's w/cf qualified to go to the national Junior Olympic

championships

> in FL for the decathalon. My other son Cory also w/cf began to feel like

he

> was getting an infection the day before we were to leave so I called the

CF

> center and asked them to call in a prescription for an antibiotic to take

with

> us. Cory ended up in the hospital in Florida due to serum poisoning from

the new

> sulfer based antiobiotic that was prescribed. Florida doctors took him off

of

> Both Cephalexin and Sulfam since both could cause reaction. This all

happened

> in July. I called in for appointment after we got back and was set up for

> October date by appointment clerk. Cory wasn't feeling great, but he

wasn't

> feeling awful until about 2 weeks before appointment. When we got to the

clinic,

> I asked why they prescribed a new medication in this situation. I was

told

> that at our quarterly visit in May, Cory had cultured two new organisms. I

> can't tell you what they are because of the medical names and my high

emotional

> level at that time (I was very upset). I have asked for copy of the

results but

> have yet to get this. My reply was to ask why, if Cory cultured these

> organisms in May, was it July that this was addressed. The doctor told me

that it

> was their practice to culture sputum so that they knew what was growing in

the

> lungs but they did not treat it until the patient began feeling bad. Now,

> since Cory has been off antibiotics since July he is doing very poorly.

The

> Sulfam, which he had a reaction to, is the only medication that fights the

> organism efficiently, and I may have to put him in the hospital for IV

antibiotics.

> Is this common practice not to treat what is growing in the lungs of CF

person

> until that person is getting ill? Seem a bit reactive instead of

proactive

> to me. This is not the first time he cultured something new that I was

not

> notified. When I ask about this I was told that it was up to me to call

them to

> get this information.

> Edi Logan single mother of Cory 16 w/cf and 15 w/cf (who came in

> 14th nationally in the decathalon)

>

>

> -------------------------------------------

> 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.

>

> ------------------------------------

>

>

>