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Jen,

What a trot of bad luck and illness lately. I hope your all on your way

back up again. Eilish gets a strep. pneu. vaccination, I just picked

the script up today. Could Mallory not have this also?

(Australia)

update on us: winter is nasty for bugs

I have not been able to follow messages in at least a month. The

kids have had one bug after another, including the stomach bug that

lasted 8 days (literally, kids laying on couches and recliners crying

with belly aches...) Mollie (the diabetic) of course went into

insulin shock b/c she couldn't keep anything down, had to use the

glucagon pen then run all over town middle of the night trying to

find an open pharmacy that wasn't out of them!!! Then came CF type

gunk in the kids with CF, nasty coughs, etc. ph got a port

somewhere in the middle of this. Then got what we thought was

a virus...headache all weekend and fever/lethargia, that was it, he

denied sore throat, ear ache, etc. 3 days later, c/o earache so I

took him to the doc. Pediatrician lifts up his shirt and says, how

long has he had this rash (geez, I have 7 sick kids, one who had

surgery two days ago, he is 8, dressess himself, guess her lights are

brighter than ours to boot, I had no clue) He was covered....scarlet

fever, strep! so then we treat him with a shot b/c he was too sick

for oral a/b's to work. The CF doc treats the CF kids

prophylactically with penvk....but gets really sick anyway,

high fever, nasty cough, etc. Finally, culture results showed (in

addition to pseudo and maltophilia and citrobacter, which are

regulars he seems to be colonized with), strep pneumo! Some of you

might remember we had quite a battle with strep pneumo about 2 yrs

ago when Mallory had a pocket of strep pneumo in her sinus (found in

sinus surgery) and then when the other kids started getting sick, the

pediatrician cultured their nasal passages, long story short, the

whole family took clindamycin. This is a very resistent bug in

Tennessee, only sensitive to clind. and to vanco, which of course is

iv. So, we will see if gets better. He just finished a tune

up in early January so its really too soon for ivs again i fpossible.

Oh, and Mallory's heartrate is back up again. Those of you who

remember that issue, every visit for the past yr it has been about

130 or 140 and sometimes higher (to compare, is usually 60 and

ph 80). At her age, it should not be this high. WE did an ekg

which was normal, and then, magically, three days into her last

tuneup in January it resolved and her heartrate was back into the

90's and so we thought somehow it was the tuneup or her port being

accessed (the doc said it can't be just that the port was accessed).

Anyway, it stayed down for about 3-4 weeks and now it back up again.

It was 149 at pft, but then I think only about 130 at clinic, but

still too high, no one really knows why, unless it is related to her

OSA. So, she is getting an echocardiogram next week and then we may

have to do another sleep study.

anyway, hows that for a down and dirty update.....

I hope everyone is ok. If anyone replies, if you don't mind, please

copy it to me personally as well (ron88jen@...), as I am

currently on webread only. too busy to scan through all the mails.

same if anyone needs anything specific from me or wants to know

anything.

the good news is, we are heading to disney in a week (the 22nd),

rented a house down there with a pool. going with my sister and her

3 yo daughter sara who also has CF.

take care all

Jen,

Mommy of 7, incl. ph 3 with CF, port; Mallory 5 with CF, port,

OSA, asthma; 7 with CF, port, asthma; Madison 6, 8,

Mollie 10 with juvenile diabetes, and Miranda 11

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THey have had pneumovax and the new one prevnar, but apparently

neither cover the strep pneumo strain. so far as I know, there is

not a strep pneumo vaccine available here. anyone else know?

thanks for the advice

Jen

> Jen,

>

> What a trot of bad luck and illness lately. I hope your all on your

way

> back up again. Eilish gets a strep. pneu. vaccination, I just

picked

> the script up today. Could Mallory not have this also?

>

> (Australia)

>

> update on us: winter is nasty for bugs

>

>

> I have not been able to follow messages in at least a month. The

> kids have had one bug after another, including the stomach bug that

> lasted 8 days (literally, kids laying on couches and recliners

crying

> with belly aches...) Mollie (the diabetic) of course went into

> insulin shock b/c she couldn't keep anything down, had to use the

> glucagon pen then run all over town middle of the night trying to

> find an open pharmacy that wasn't out of them!!! Then came CF type

> gunk in the kids with CF, nasty coughs, etc. ph got a port

> somewhere in the middle of this. Then got what we thought

was

> a virus...headache all weekend and fever/lethargia, that was it, he

> denied sore throat, ear ache, etc. 3 days later, c/o earache so I

> took him to the doc. Pediatrician lifts up his shirt and says, how

> long has he had this rash (geez, I have 7 sick kids, one who had

> surgery two days ago, he is 8, dressess himself, guess her lights

are

> brighter than ours to boot, I had no clue) He was

covered....scarlet

> fever, strep! so then we treat him with a shot b/c he was too sick

> for oral a/b's to work. The CF doc treats the CF kids

> prophylactically with penvk....but gets really sick anyway,

> high fever, nasty cough, etc. Finally, culture results showed (in

> addition to pseudo and maltophilia and citrobacter, which are

> regulars he seems to be colonized with), strep pneumo! Some of

you

> might remember we had quite a battle with strep pneumo about 2 yrs

> ago when Mallory had a pocket of strep pneumo in her sinus (found

in

> sinus surgery) and then when the other kids started getting sick,

the

> pediatrician cultured their nasal passages, long story short, the

> whole family took clindamycin. This is a very resistent bug in

> Tennessee, only sensitive to clind. and to vanco, which of course

is

> iv. So, we will see if gets better. He just finished a

tune

> up in early January so its really too soon for ivs again i

fpossible.

> Oh, and Mallory's heartrate is back up again. Those of you who

> remember that issue, every visit for the past yr it has been about

> 130 or 140 and sometimes higher (to compare, is usually 60

and

> ph 80). At her age, it should not be this high. WE did an ekg

> which was normal, and then, magically, three days into her last

> tuneup in January it resolved and her heartrate was back into the

> 90's and so we thought somehow it was the tuneup or her port being

> accessed (the doc said it can't be just that the port was

accessed).

> Anyway, it stayed down for about 3-4 weeks and now it back up

again.

> It was 149 at pft, but then I think only about 130 at clinic, but

> still too high, no one really knows why, unless it is related to

her

> OSA. So, she is getting an echocardiogram next week and then we

may

> have to do another sleep study.

> anyway, hows that for a down and dirty update.....

> I hope everyone is ok. If anyone replies, if you don't mind,

please

> copy it to me personally as well (ron88jen@a...), as I am

> currently on webread only. too busy to scan through all the

mails.

> same if anyone needs anything specific from me or wants to know

> anything.

> the good news is, we are heading to disney in a week (the 22nd),

> rented a house down there with a pool. going with my sister and

her

> 3 yo daughter sara who also has CF.

> take care all

> Jen,

> Mommy of 7, incl. ph 3 with CF, port; Mallory 5 with CF, port,

> OSA, asthma; 7 with CF, port, asthma; Madison 6, 8,

> Mollie 10 with juvenile diabetes, and Miranda 11

>

>

>

>

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