any ideas?

[Guest guest]

Amy,

When my girls get psuedomonas our doctors put them on Collistin 3 times a day

and oral antibiotics Cipro and we use this for 3 months. Deb

[Guest guest]

Deb,

When Eilish gets pseudo. we do exactly the same cipro. and coli for three

months. Our clinic follows the Danish way of treatment and maybe yours does

also.

Re: Fw: Any Ideas?

> Amy,

> When my girls get psuedomonas our doctors put them on Collistin 3 times a

day

> and oral antibiotics Cipro and we use this for 3 months. Deb

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> 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]

Amy,

hello. I have no wisdom to share with you on this..but can symathize.

Our daughter, when she was 3 she was hositalized due to a partial

collapsed lung...middle lobe and we did not even know she was sick. We

found out due to the Xray she had at a regular CF appt. I am sorry to

hear that your daughter is sick all of a sudden with not much

improvement. Your story has been a reminder to me and an encouragement

to keep on keeping on even tho our daughter seems so healthy right now.

She will be 8 on the 30th of this mo.

You are in my thoughts! And I hope you get some wisdom from others and

that things improve.

-mom of 4, one with CF, and #5 due any time now with low birth

weight, poss. mecconium illieus/ poss. CF

[Guest guest]

Hi Amy,

's situation sounds almost exactly like Shantell's when she was 6

years old. Her problems persisted with a collapsed right middle lobe,

although she didn't really look or act that sick. The doctors gave me one

month to clear it up or it would have to be surgically reflated. I worked

day and night on her right lobe, pounding it endlessly. She was on

amoxicillin back in those days. Miraculously, it did clear up, but she's

had scarring in that area ever since. The aspergillus is a new thing for

us, too. Shantell became ill in January of this year, and cultured

aspergillus. She does have psuedo, has since she was 16. Like you,

we did home IV's with Tobra and Ceftazadine, which cleared her right up.

Because of her sinus problems in the past, are you sure that it is not pseudo in

her sinus cavities? Shantell cultures two different strains of pseudo, the

pseudo in her nose is resistant to Tobra, the pseudo in her sinuses is resistant

to Gentamycin. Have you tried Gentamyicin? Shantell used it a couple

of years ago (before Tobra), and it was the best drug out there for her.

Doctors took her off of it because they thought she would build up a

resistance. We're saving it for when she really needs it. Shantell

has always " hid her illness well. " In other words, she may look and feel

OK, but then she gets a full blown infection. Her sinus infections are the

hardest to predict. Headaches is the typical symptom, and that's hard to

determine in a 8 or 9 year old. You might try Cipro, that is what Shantell

used for quite some time if you think it may be her sinuses. Remember, the

sinuses drip down and infect the lungs. In the meantime, do you have a

hand held vibrator/percussor? Not just the vest. You need to sit

with her and put the hand held on her in this location at least every couple of

hours. Is that possible for you, do you work? These are just our

experiences, so I'm not sure if it will help you, but I hope so. I

remember feeling the same way you do, when they are sick you feel so

hopeless. Be strong and determined, don't let the CF get the best of you

or your daughter. It's hard work, but it can be overcome!

FG, mom of Shantell 19yr wcf

Any Ideas?

I'm coming out of lurker status to ask you a question about my 8 year old

daughter, . has been in excellent health for most of her 8

years. Some GI problems and 2 sinus surgeries, but overall great,

with PFTs over 100%. About 6 months ago, her PFTs began falling

some. The dr wasn't alarmed, and she had no other new symptoms, no

cough etc. Our next regular visit, her PFTs had dropped some more

into the low 80s. We discussed IVs although she has been pseud free

for over 1 year, and wasn't culturing anything per the sputum

culture. We decided to do a bronch to see what he could culture from

that to help him figure out why the reduction in PFTs. Right before

the bronch, he had us get a chest x-ray, which showed a partial collapse in the

lower right lobe. At this point, she is still not coughing at all,

and has shown no signs of tiredness, exercise reduction, etc. The

bronch was done at the end of April, and he got a huge mucus plug from that

lower right side. I just knew that would take care of the

problem. All that was cultured from the bronch was aspergillus and

another rare bacteria which I don't remember the name of, but it wasn't bad at

all, and was treated with 3 weeks of augmentin. We repeated the chest

x-ray 1 month later and PFTs. Everything was the exact

same. So we were scheduled for another bronch. That bronch

was done June 19 and although she didn't have any large mucus plugs like before,

she had lots of irritation and inflammation that the dr had not seen with the

last bronch, so we were admitted for IVs. We started on Tobra and

Ceftazadime and came home to finish up the IVs. The only thing to

culture out of the bronch was aspergillus again. 's IGE was very

low, so the thought was that she didn't have the allergic response to the

aspergillus, but now that test has come back showing she does.

is also being treated with sporanex for 3 weeks and 4 weeks of oral

steroids. We went back to the dr on Tuesday, and nothing has

improved. The x-ray sitll shows infiltrations and collaspes in the

middle and lower right lobe, and her PFTs were even a little bit lower than

before. We were told to do the IVs for 1 more week and then

discontinue. One day into that 3rd week, we have had to discontinue

the Tobra because started getting ringing in the ears. All of

that history to say, do you all have any ideas what all else we can

try? Does this sound like a problem with the

aspergillus? I have been an emotional wreck because I knew this day

would come but not this suddenly, and not where I feel like I am doing

everything the doctor says, and we are making no progress at

all. When we saw the dr on Tuesday, he said to finish out the IVs and

then go back to normal routine, and this may just be where she is

now. But I am having lots of problems accepting

that. Thanks for any input.

Amy I. (mom of 3, 1 with cf)

[Guest guest]

Hi Amy,

's situation sounds almost exactly like Shantell's when she was 6

years old. Her problems persisted with a collapsed right middle lobe,

although she didn't really look or act that sick. The doctors gave me one

month to clear it up or it would have to be surgically reflated. I worked

day and night on her right lobe, pounding it endlessly. She was on

amoxicillin back in those days. Miraculously, it did clear up, but she's

had scarring in that area ever since. The aspergillus is a new thing for

us, too. Shantell became ill in January of this year, and cultured

aspergillus. She does have psuedo, has since she was 16. Like you,

we did home IV's with Tobra and Ceftazadine, which cleared her right up.

Because of her sinus problems in the past, are you sure that it is not pseudo in

her sinus cavities? Shantell cultures two different strains of pseudo, the

pseudo in her nose is resistant to Tobra, the pseudo in her sinuses is resistant

to Gentamycin. Have you tried Gentamyicin? Shantell used it a couple

of years ago (before Tobra), and it was the best drug out there for her.

Doctors took her off of it because they thought she would build up a

resistance. We're saving it for when she really needs it. Shantell

has always " hid her illness well. " In other words, she may look and feel

OK, but then she gets a full blown infection. Her sinus infections are the

hardest to predict. Headaches is the typical symptom, and that's hard to

determine in a 8 or 9 year old. You might try Cipro, that is what Shantell

used for quite some time if you think it may be her sinuses. Remember, the

sinuses drip down and infect the lungs. In the meantime, do you have a

hand held vibrator/percussor? Not just the vest. You need to sit

with her and put the hand held on her in this location at least every couple of

hours. Is that possible for you, do you work? These are just our

experiences, so I'm not sure if it will help you, but I hope so. I

remember feeling the same way you do, when they are sick you feel so

hopeless. Be strong and determined, don't let the CF get the best of you

or your daughter. It's hard work, but it can be overcome!

FG, mom of Shantell 19yr wcf

Any Ideas?

I'm coming out of lurker status to ask you a question about my 8 year old

daughter, . has been in excellent health for most of her 8

years. Some GI problems and 2 sinus surgeries, but overall great,

with PFTs over 100%. About 6 months ago, her PFTs began falling

some. The dr wasn't alarmed, and she had no other new symptoms, no

cough etc. Our next regular visit, her PFTs had dropped some more

into the low 80s. We discussed IVs although she has been pseud free

for over 1 year, and wasn't culturing anything per the sputum

culture. We decided to do a bronch to see what he could culture from

that to help him figure out why the reduction in PFTs. Right before

the bronch, he had us get a chest x-ray, which showed a partial collapse in the

lower right lobe. At this point, she is still not coughing at all,

and has shown no signs of tiredness, exercise reduction, etc. The

bronch was done at the end of April, and he got a huge mucus plug from that

lower right side. I just knew that would take care of the

problem. All that was cultured from the bronch was aspergillus and

another rare bacteria which I don't remember the name of, but it wasn't bad at

all, and was treated with 3 weeks of augmentin. We repeated the chest

x-ray 1 month later and PFTs. Everything was the exact

same. So we were scheduled for another bronch. That bronch

was done June 19 and although she didn't have any large mucus plugs like before,

she had lots of irritation and inflammation that the dr had not seen with the

last bronch, so we were admitted for IVs. We started on Tobra and

Ceftazadime and came home to finish up the IVs. The only thing to

culture out of the bronch was aspergillus again. 's IGE was very

low, so the thought was that she didn't have the allergic response to the

aspergillus, but now that test has come back showing she does.

is also being treated with sporanex for 3 weeks and 4 weeks of oral

steroids. We went back to the dr on Tuesday, and nothing has

improved. The x-ray sitll shows infiltrations and collaspes in the

middle and lower right lobe, and her PFTs were even a little bit lower than

before. We were told to do the IVs for 1 more week and then

discontinue. One day into that 3rd week, we have had to discontinue

the Tobra because started getting ringing in the ears. All of

that history to say, do you all have any ideas what all else we can

try? Does this sound like a problem with the

aspergillus? I have been an emotional wreck because I knew this day

would come but not this suddenly, and not where I feel like I am doing

everything the doctor says, and we are making no progress at

all. When we saw the dr on Tuesday, he said to finish out the IVs and

then go back to normal routine, and this may just be where she is

now. But I am having lots of problems accepting

that. Thanks for any input.

Amy I. (mom of 3, 1 with cf)

[Guest guest]

Hi All :-)

Madison(5) has some

new, and not so new symptoms this week and I am trying to figure them out,

so figured I'd come to the experts and see whatcha think.

Twice this week,

while eating, she got up and told me her heart was "beeping" (thinking

palpitations) and her stomach immediatly got upset and she didn't want

to eat anymore. She's only mentioned her heart "beeping" once or

twice before ever, so to have her do it twice in one week is odd.

Wondering what affect eating was having on her that might cause something

like this. First time was during dinner, and the second time during

breakfast, so different types of food. Any ideas?? Should mention

that she has Mitral Valve Regurgitation that I assume may or may not be

a piece to this puzzle, although she's never had any symptoms before.

We again seem to

be dealing with a possible problem with her clotting. Monday morning

they did blood gases at the end of her sleep study, so had to prick her

finger and as we have dealt with in the past, she bled like crazy and it

took about 5 minutes of steady pressure for me to get it to stop enough

for a band aide. She's also bruising more than usual right now.....used

to them on her shins, but there are a number of about dime sized bruises

on her thighs and on her arms thats not something we see usually.

Just not sure if this is something we need to figure out if she is not

due for surgury anytime soon...in other words, is she at any risk

if this is left as is. Also wondering if its possible for an issue

with clotting to come and go?? We have done PT and PTT testing that

was slightly abnormal, but further testing looked okay, so we have not

been concerned about this. Interestingly, we don't see a problem

with bleeding from surguries and things like that, but see it during less

invasive things like finger pricks, shots, and her skin biopsy. Makes

no sense, but something seems to be odd in this respect.

Thanks for any thoughts

you all might have for me!! My mind isn't working too well right

now, so I really need the collective minds here!!

BIG hugs,

Kass, proud mom

to Chance(9 on Sunday), Madison(5 1/2)....both with mito, and Abby(4)

[Guest guest]

Kass,

I request an echo card., and when your at the cardioligist ask if this could

be automonic. They may want to give her a tilt table test. My cardioligist

told me she had a child with such bad Autonomic Dysfunction that she passed

out everytime she went to take a bite of food.

Good Luck,

Robin

[Guest guest]

Hey guys!

Can you tell me what the tilt table test is and what they do it for?

Thanks,

Horsley

Re: any ideas?

Kass,I request an echo card., and when your at the cardioligist ask if this could be automonic. They may want to give her a tilt table test. My cardioligist told me she had a child with such bad Autonomic Dysfunction that she passed out everytime she went to take a bite of food.Good Luck,RobinPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi Kass,

By no means an expert here, just wanted to pop in and say hi! I've

been logging onto this group for a couple of weeks now, trying to get

more information......

HAPPY BIRTHDAY CHANCE!

We were out of town this past week, but home now and hope to send you

some news soon.

Hugs,

Kathy

> Hi All :-)

>

> Madison(5) has some new, and not so new symptoms this week and I am

> trying to figure them out, so figured I'd come to the experts and

see

> whatcha think.

>

> Twice this week, while eating, she got up and told me her heart was

> " beeping " (thinking palpitations) and her stomach immediatly got

upset

> and she didn't want to eat anymore. She's only mentioned her heart

> " beeping " once or twice before ever, so to have her do it twice in

one

> week is odd. Wondering what affect eating was having on her that

might

> cause something like this. First time was during dinner, and the

second

> time during breakfast, so different types of food. Any ideas??

Should

> mention that she has Mitral Valve Regurgitation that I assume may

or may

> not be a piece to this puzzle, although she's never had any symptoms

> before.

>

> We again seem to be dealing with a possible problem with her

clotting.

> Monday morning they did blood gases at the end of her sleep study,

so

> had to prick her finger and as we have dealt with in the past, she

bled

> like crazy and it took about 5 minutes of steady pressure for me to

get

> it to stop enough for a band aide. She's also bruising more than

usual

> right now.....used to them on her shins, but there are a number of

about

> dime sized bruises on her thighs and on her arms thats not

something we

> see usually. Just not sure if this is something we need to figure

out

> if she is not due for surgury anytime soon...in other words, is

she at

> any risk if this is left as is. Also wondering if its possible for

an

> issue with clotting to come and go?? We have done PT and PTT

testing

> that was slightly abnormal, but further testing looked okay, so we

have

> not been concerned about this. Interestingly, we don't see a

problem

> with bleeding from surguries and things like that, but see it during

> less invasive things like finger pricks, shots, and her skin biopsy.

> Makes no sense, but something seems to be odd in this respect.

>

> Thanks for any thoughts you all might have for me!! My mind isn't

> working too well right now, so I really need the collective minds

here!!

>

> BIG hugs,

> Kass, proud mom to Chance(9 on Sunday), Madison(5 1/2)....both with

> mito, and Abby(4)

[Guest guest]

Kass,

Just wondering if Madison has ever had any reflux

tests? I know that sounds weird, but since it's

during a meal it's a possibility. Anyway, just a

thought. I think my daughter, , was about 5 when

she started complaining about weird things in her

heart... she explained it as pain, but it sounds

similar... she had a 2 day holter monitor on and was

diagnosed with Mitral Valve Prolapse (hmm

interesting, huh?). Good luck. Keep us posted!!

__________________________________________________