Guest guest Posted December 16, 1999 Report Share Posted December 16, 1999 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 >_________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 1999 Report Share Posted December 16, 1999 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 > _________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 1999 Report Share Posted December 17, 1999 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 1999 Report Share Posted December 17, 1999 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. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 1999 Report Share Posted December 18, 1999 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! > Quote Link to comment Share on other sites More sharing options...
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