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Re: Drug interactions, ????, Venting

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Hi Kathy G.

None of the drugs you listed off triggered any danger warnings in the back

of my mind about interactions (my guys are on or have been on all the stuff

you listed except the enzymes and Dnase). Do you have a home copy of the

PDR (physicians desk reference) in your house? It's pretty cheap, in

paperback, and is a nice reference for those of us who don't trust

pharamcists 100% (remember Jen's prozac/prillosec exchange for baby

Josheph-- sheesh!). It tells what drugs are for, side effects, interaction

warnings, brand and generic names, etc. Also, it's a good idea to list off

all the drugs your daughter's on and ask about interactions every time you

get a new prescription (to the pharmascist and the doctor). My little ones

are on Albuterol (neb and inhalers), Serevent, Singulair, Pulmicort,

Beconase, Zantac, Zyrtech, Lodoxamide eye drops, Acidophilus, multi vits.,

extra vit. C, tums for calcium, and M's on maitenance Augmentin, they both

do lots of oral antibiotics for sinus stuff, and they both do several bursts

of oral Prelone a year. Like you, I've spent time thinking about what this

" medicine soup " might do to their little bodies over all the years they're

going to be on this stuff. Conclusion, they really need it, and there's not

a lot I can do about it, so try not to think about it.

As for the stress of the holiday season, depression, etc., hang in there.

Are you seeing anyone about the depression? Even if it's mild, there's a

lot they can do to help you deal with it. Ken and I have both been there,

and it's SO nice to get it under control. And yeah, the holidays are full

of stress. Sort of a 's law kind of thing in my family every year--

it's almost amusing to wait and see what the holiday drama of the year will

be each year. My extended family is currently having major health crises

(like my grandmother almost died last week, had a pacemaker put in, they

nicked a lung during the surgery; my mom's going in for surgery on a bone

thing at the back of her head soon and is having psychotic episodes, the

usual holiday kind of stuff).

As for my own little family (the one that really counts), three of us have

sinus infections now (Ken has yet to join the party), and I've been having

major " discussions " with the school nurses office about actually FOLLOWING

Kailin's asthma plan. We also had a run-in with Kailin's teacher today

about her having unlimited access to her inhaler (even though she had

permission from the nurse to have it in her backpack and there's a law in WI

allowing all kids to carry inhalers in school). The compromise is the

teacher will keep it in her desk, which I can live with for now. I also

gave in and scheduled an appointment with MY ENT today about the possibility

of doing something about my deviated septum and the damn small sinus

drainage opening on my left side (the side that gets infected so easily).

Fed up with being sick all the time, I then called my allergist and told him

I was ready to do the four years of allergy shots he'd proposed at my last

visit. Okay, I know I'm rambling, but I am coming to a point here. The

point, hmmmm, there was a point to all this, wasn't there? Oh yeah, the

point is that I'm actually HAPPY. Score about a thousand points for that

wonderful St. 's Wort stuff :-) And I'm even happy in the WINTER. I

suck at winter, one of the reasons I tried St. 's Wort in the first

place last year-- I always got mildly depressed in December, and it lasted

until about March.

So, why am I happy? Well, ER's new tonight, and I bought big boxes of

cordial cherries and mints (you know, the holiday thin mints) when I did

errands earlier. And M's doing well despite her sinus infection. And my

mother's SO pissed off at me that I don't think she'll call again till after

the holiday :-) And I've got two great little muffins, and Meagan only had a

1/2-hour-long tantrum today, as opposed to her two one-hour tantrums

yesterday :-) Okay, so I'm punchy from lack of sleep.

Hang in there Kathy, it'll get easier (and then harder, and then easier

again...). Hugs!!!

, mom of the Meagan and Kailin domestic crime ring ;-)

At 01:42 PM 12/16/99 EST, you wrote:

>From: KajeGood@...

>

>Hi (help) All,

>

> has had reactions of a rash to sulfa drugs in the past. It's called

>eurothema multiforme. An ugly rash! All over her body. Swollen

>extremities, target like circles everywhere! I was shocked.

>

>Speaking of meds -- does anyone have the same concerns I do about medicine

>interactions? is currently taking: Beclovent (inhaled steriods 16.8

>mg) 2 puffs 2x per day. She was on Flovent but it was too strong for her.

>Before that she was on another inhaled steroid. She has the unit doses of

>Albuterol 2x per day through the nebulizer and she has a puffer for

>emergencies (ie:gym class) at school, The Creon 10's enzymes. She's up to

>the maximum dose for her weight (5 per meal 3 per snack). In addition, we

>recently started Zantac (15mg syrup) 3 ml 2x daily. Of course multivitamins

>2x per day and the most recent addition Actigall (60 mg suspension --

>refrigerated) 4 ml 2x daily for 4 - 6 months! I'm worried it's too much for

>her little body to handle. Chia pestis is reeking havoc! Any ideas on drug

>interactions?????

>

>She is all gunky again so I called the Lung Center about adding some kind of

>antibiotic. said, " nasal mucus has been green 5 days before starting a

>treatment course of antibiotics " . That's not necessarily the rule in

>Buffalo's Children's Hospital. I agree with the: " They don't want to

>over-treat and end

>up with more resistance. " I guess that is their philosophy however those

>statements seem to contradict. Oh well, I'm trusting the professionals.

>

> We have the same trouble with the sinus bologna. Basically I am screaming

>here! Now they want her to complete the 14 days of cefzill and then add a

>Dnase treatment to her regimen. I guess this (Dnase) is a thinner of some

>sort. Or is this an antibiotic?

>

>We just started the vest last Friday. Of course 2x per day. It's not as

>easy to use as a lot of people make it sound. Stop after albuterol treatment

>/ cough / stop every 15 minute automatically? / cough / etc. It's cramping my

>morning routine. She already gets up at 6:30 and she's only five. We only

>have one bathroom and there are 4 of us to get ready. Eat, dressed, blah,

>blah, blah... I get up at 5:30, Joe 6:00 and the kids 6:30 (Ps - no

>shower!!!!!) Joe is out of the house by 6:45 and me and the kids by 7:45.

>It's hard. Then throw in a class of Learning disabled and mentally retarded

>students all day! ZOW! Jen, you are a saint!

>

>Don't forget I've already been diagnosed as mildly depressed. I think all

>this with the CF and the holidays coming up is just throwing me for a loop.

>

>Get this... to top it all off had to come home from school yesterday

>with me of course (they couldn't find a sub until the last minute!). She had

>a 100 fever and was feeling sick to her stomach. After a 2 hour nap she

>puked 2x! Then I was on the phone with the Lung Center again because I

>wasn't sure if I SHOULD GIVE HER ENZYMES BEFORE FEEDING HER FREEZY POPS OR

>SALTINES! Was I just yelling? Sorry. Then... the cherry of it all, the

>schools cookie exchange was at my house at 4PM! I could have just......

>well, let's leave it at that. Maybe it was just one of those days.

>

>I took today off to stay home with her. I am praying now that doesn't

>get sick. Too bad I can't go shopping.

>

>On a lighter note. Our pageant for church is on Sunday - the kids will be

>sheep this year. Baaaaaaaaaah. was Jesus 2 years ago (hard to top that

>role) and was my angel! As always. Our CF Christmas party is Sunday

>too. It is always really nice. Santa - gifts for everyone. Cookie

>decorating, clowns, Sabre tooth (Buffalo Sabres mascot), pictures of the kids

>w/ Santa and great food! No beer though " bummer " . Maureen, I even promised I

>wouldn't puke! LOL

>

>Sorry this got so long. I of course needed to vent again. I apologize for

>not being there for the rest of you, but I'm going through my own stress

>right now. My thoughts are with you all.

>

>Big hugs and strength to everyone now and always,

>Kathy G. (depressed mother of 2 beautiful children - ARUGH!!!!!!!!!!)

>

>>***********************

>This is a secular 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.

>

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

>

>

>

>Come chat at our webpage! http://members.tripod.com/cfparents/

>

>

>_________________________________________________

>Post message: cfparentsonelist

>Subscribe: cfparents-subscribeonelist

>Unsubscribe: cfparents-unsubscribeonelist

>List owner: cfparents-owneronelist

>_________________________________________________

>

>

>

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Dear Kathy,

Hang in there !!!! Holiday depression is a well known thing, my gosh, they

even talk about it on TV. So please know that you aren't in this boat

alone. And then there is the depression which comes from having a child

with a serious health condition. No big TV discussions on that subject, but

you have to know you are not alone in this either. I suspect all of us on

this list go thru it at one time or another. I know I surely do. Especially

in this winter time when the days are short and colds/flus circulate

everywhere, affecting our very susceptible kids.

As far as the drug interactions, well I wonder the same kinds of things. I

especially think, " How did this kid make it thru the first 6 years of her

life without this stuff, and now she is a walking pharmacy? " I hate to say

it, but I think we just have to accept it.

Here in my house the current crazy-maker is wondering when will we be able

to buy the Christmas gifts, groceries, etc., for the holidays? Since my

husband is self-employed as a consultant, he doesn't have regular paychecks,

but is paid for work billed. So our big question is whether the check for

last month's billings, will arrive in time to buy the Christmas gifts BEFORE

the actual event. (Sort of difficult to explain to kids why Santa might

come late this year.) Dan's business does well, but being self-employed can

make you a bit tense in these matters. I am sure that something will work

out, but this makes me crazy all year long too, not just at the holidays.

My suggestion is to indulge yourself a little. You deserve a holiday treat

too! If you are a chocoholic, buy some real gooey goody. If you especially

like eggnog or mulled cider (with or without combustion) have a big glass.

Put on your favorite holiday music, and sing along with it. Make cookies

with your kids. Drive around and look at the crazy lights. Just find

something to take your mind off your cares, and enjoy the holidays more.

Best wishes for a wonderful holiday!

(mother of , who is DYING to make a gingerbread house, and ,

who almost passed out in glee when we switched on the lights on our house

yesterday - Yeah, I know we're late)

Drug interactions, ????, Venting

> From: KajeGood@...

>

> Hi (help) All,

>

> has had reactions of a rash to sulfa drugs in the past. It's

called

> eurothema multiforme. An ugly rash! All over her body. Swollen

> extremities, target like circles everywhere! I was shocked.

>

> Speaking of meds -- does anyone have the same concerns I do about medicine

> interactions? is currently taking: Beclovent (inhaled steriods

16.8

> mg) 2 puffs 2x per day. She was on Flovent but it was too strong for her.

> Before that she was on another inhaled steroid. She has the unit doses of

> Albuterol 2x per day through the nebulizer and she has a puffer for

> emergencies (ie:gym class) at school, The Creon 10's enzymes. She's up to

> the maximum dose for her weight (5 per meal 3 per snack). In addition, we

> recently started Zantac (15mg syrup) 3 ml 2x daily. Of course

multivitamins

> 2x per day and the most recent addition Actigall (60 mg suspension --

> refrigerated) 4 ml 2x daily for 4 - 6 months! I'm worried it's too much

for

> her little body to handle. Chia pestis is reeking havoc! Any ideas on

drug

> interactions?????

>

> She is all gunky again so I called the Lung Center about adding some kind

of

> antibiotic. said, " nasal mucus has been green 5 days before

starting a

> treatment course of antibiotics " . That's not necessarily the rule in

> Buffalo's Children's Hospital. I agree with the: " They don't want to

> over-treat and end

> up with more resistance. " I guess that is their philosophy however those

> statements seem to contradict. Oh well, I'm trusting the professionals.

>

> We have the same trouble with the sinus bologna. Basically I am

screaming

> here! Now they want her to complete the 14 days of cefzill and then add a

> Dnase treatment to her regimen. I guess this (Dnase) is a thinner of some

> sort. Or is this an antibiotic?

>

> We just started the vest last Friday. Of course 2x per day. It's not as

> easy to use as a lot of people make it sound. Stop after albuterol

treatment

> / cough / stop every 15 minute automatically? / cough / etc. It's cramping

my

> morning routine. She already gets up at 6:30 and she's only five. We

only

> have one bathroom and there are 4 of us to get ready. Eat, dressed, blah,

> blah, blah... I get up at 5:30, Joe 6:00 and the kids 6:30 (Ps - no

> shower!!!!!) Joe is out of the house by 6:45 and me and the kids by 7:45.

> It's hard. Then throw in a class of Learning disabled and mentally

retarded

> students all day! ZOW! Jen, you are a saint!

>

> Don't forget I've already been diagnosed as mildly depressed. I think all

> this with the CF and the holidays coming up is just throwing me for a

loop.

>

> Get this... to top it all off had to come home from school

yesterday

> with me of course (they couldn't find a sub until the last minute!). She

had

> a 100 fever and was feeling sick to her stomach. After a 2 hour nap she

> puked 2x! Then I was on the phone with the Lung Center again because I

> wasn't sure if I SHOULD GIVE HER ENZYMES BEFORE FEEDING HER FREEZY POPS OR

> SALTINES! Was I just yelling? Sorry. Then... the cherry of it all, the

> schools cookie exchange was at my house at 4PM! I could have just......

> well, let's leave it at that. Maybe it was just one of those days.

>

> I took today off to stay home with her. I am praying now that

doesn't

> get sick. Too bad I can't go shopping.

>

> On a lighter note. Our pageant for church is on Sunday - the kids will be

> sheep this year. Baaaaaaaaaah. was Jesus 2 years ago (hard to top

that

> role) and was my angel! As always. Our CF Christmas party is

Sunday

> too. It is always really nice. Santa - gifts for everyone. Cookie

> decorating, clowns, Sabre tooth (Buffalo Sabres mascot), pictures of the

kids

> w/ Santa and great food! No beer though " bummer " . Maureen, I even

promised I

> wouldn't puke! LOL

>

> Sorry this got so long. I of course needed to vent again. I apologize

for

> not being there for the rest of you, but I'm going through my own stress

> right now. My thoughts are with you all.

>

> Big hugs and strength to everyone now and always,

> Kathy G. (depressed mother of 2 beautiful children - ARUGH!!!!!!!!!!)

>

> > ***********************

> This is a secular 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.

>

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

>

>

>

> Come chat at our webpage! http://members.tripod.com/cfparents/

>

>

> _________________________________________________

> Post message: cfparentsonelist

> Subscribe: cfparents-subscribeonelist

> Unsubscribe: cfparents-unsubscribeonelist

> List owner: cfparents-owneronelist

> _________________________________________________

>

>

>

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Mo, , - I wrote this super long post to reply to and

but I got booted offline! Yikes. Now I'm so tired I don't even have

time to do it again. Or energy. went to school this Am. She had a

normal temp at 8AM. By 10AM it was back up to 101.7. The nurse incharge of

home visits for the RSV study came out. She said her lungs are clear but

shes got some kind of sinus infection going on.

I am soooooooooo thankful for my on-line buddies. Your posts really cheered

me up. (((((((((((((((HUGS)))))))))))))))) Kathy G. (Springville, NY - not

Springhill silly!) Call me sometime - I love beer and wings!

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DNase is an enzyme (hence the " -ase " at the end of the

word).

The way it is supposed to work is by *chopping up* the

dna of the mucous in the airways. I don't know if it

distinguishes between mucous dna and lung dna or not.

Following is one of the over two-hundred abstracts on

Medline ( http://igm.nlm.nih.gov/index.html ) about

dnase and cystic fibrosis. This one is from Dec. '98,

so it's fairly current:

TITLE: Long-term effects of aerosolised rhDNase on

pulmonary disease progression in patients with cystic

fibrosis.

AUTHORS: Milla CE

AUTHOR AFFILIATION: Cystic Fibrosis Center,

University of Minnesota, Minneapolis, USA.

SOURCE: Thorax 1998 Dec;53(12):1014-7

CITATION IDS: PMID: 10195070 UI: 99210974

ABSTRACT: BACKGROUND: After multiple studies,

including clinical trials, suggested some mild

clinical benefits from the use of rhDNase by patients

with cystic fibrosis, a widespread acceptance of the

drug has followed. However, long-term effects,

specifically on lung disease progression, have not

been demonstrated. Experience with the use of this

drug in a single cystic fibrosis centre is presented

and compared with the trends seen in the patient

population of the centre before the introduction of

the drug. METHODS: Patients with cystic fibrosis

routinely followed at the University of Minnesota

Cystic Fibrosis Center and prescribed rhDNase for at

least two years were included in this retrospective

study. Data on spirometric parameters (FEV1 and

FEV1/FVC), allometric index, and admissions to

hospital were retrieved from the centre's database for

the two years preceding the prescription of rhDNase

and the two years that followed. Trends in pulmonary

function and allometric index were analysed by mixed

linear modelling, and hospital admission rates for

both periods were calculated and compared. RESULTS:

One hundred and ninety patients met the inclusion

criteria for the study. In the two years preceding the

prescription of rhDNase the trends noted were those of

a mild decline in FEV1, a stable FEV1/FVC, and a mild

improvement in allometric index. In the two years that

followed the prescription of rhDNase a mild decline in

all these parameters occurred which was a significant

change from the previous period (all p < 0.009). There

was no difference between females and males in the

trends experienced after the start of rhDNase. By

logistic regression analysis only the presence of

malnutrition at the time of prescription was

associated with a positive trend after the

introduction of rhDNase. No significant change in the

hospital admission rates occurred, with rates of 0.52

(0.16) and 0.56 (0.21) admissions/patient/year for the

periods before and after the prescription of rhDNase,

respectively. CONCLUSIONS: The introduction of rhDNase

to the regimen of patients with cystic fibrosis cared

for at this centre has not been followed by a positive

trend in lung function and nutritional parameters.

There are some differences between this patient

population and those who participated in previous

studies which may help to explain the contrasting

findings of this study. However, it is also possible

that factors other than mucus clearance need to be

improved to achieve a favourable response in disease

progression. Patients on this treatment should be

followed closely and the benefit judged on an

individual basis. More studies are needed to define

better the specific indications and use of this form

of treatment.

=====

....just because you CAN doesn't necesarily mean you SHOULD.

__________________________________________________

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Kathy,

Sheesh Springhill, Springville, Springhole, whatever, quit being so

precise, all the same to a Canuck. Of course here we choose names like

Moosenee & Moose Factory! I've had to put up a map of the US next to my

puter so I can try to figure out where everyone lives.

I think we should find a central spot and plan a FAfCF Board Meeting. Of

course, an inaugural meeting would require a weekend without kids or

spouses. Since meeting Jen was such a great experience (she didn't turn

out to be an ax murderer afterall) maybe if we start planning now, we could

put it together for July or August. Whaddaya think?

Hope 's sinus probs are better today.

Big hugs from the deep freeze,

Mo

>From: KajeGood@...

>

clear but

>shes got some kind of sinus infection going on.

>

>I am soooooooooo thankful for my on-line buddies. Your posts really cheered

>me up. (((((((((((((((HUGS)))))))))))))))) Kathy G. (Springville, NY - not

>Springhill silly!) Call me sometime - I love beer and wings!

>

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