Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Hi Darci, I assume it's a blinded and placebo-controlled study,right? So maybe your son is reacting to something in the placebo (does he have any kinds of food allergies?) and not to Zithro. Or is it a new formulation of Zithro? What's the purpose of the study? Peace Torsten > I'm upset!!! Our CF clinic is participating in a study on Zithromax and my son was started 3 weeks ago.(He is a big kid 88 lbs.) He started on 1000 mg 3 X a week, after the first week he complained of tummy trouble and red spots on his body. I dropped it down to 500 mg 3X a week. I thought this would work as he did not react until the 3rd dose that week. He complained again of stomached pain and he big red welts again. I am going to call his CF doc tomorrow. He has taken Zithro lot's of times before? > > Has anyone had this kind of reaction before? Does this mean that he cannot ever take this? Just down in the dumps, as this is supposed to really help CF lungs! > > Any suggestions? > > Sadly, > Darci 8 y/o with CF and 2 sibs nocf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Hi Darci, I assume it's a blinded and placebo-controlled study,right? So maybe your son is reacting to something in the placebo (does he have any kinds of food allergies?) and not to Zithro. Or is it a new formulation of Zithro? What's the purpose of the study? Peace Torsten > I'm upset!!! Our CF clinic is participating in a study on Zithromax and my son was started 3 weeks ago.(He is a big kid 88 lbs.) He started on 1000 mg 3 X a week, after the first week he complained of tummy trouble and red spots on his body. I dropped it down to 500 mg 3X a week. I thought this would work as he did not react until the 3rd dose that week. He complained again of stomached pain and he big red welts again. I am going to call his CF doc tomorrow. He has taken Zithro lot's of times before? > > Has anyone had this kind of reaction before? Does this mean that he cannot ever take this? Just down in the dumps, as this is supposed to really help CF lungs! > > Any suggestions? > > Sadly, > Darci 8 y/o with CF and 2 sibs nocf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Hi Darci, I assume it's a blinded and placebo-controlled study,right? So maybe your son is reacting to something in the placebo (does he have any kinds of food allergies?) and not to Zithro. Or is it a new formulation of Zithro? What's the purpose of the study? Peace Torsten > I'm upset!!! Our CF clinic is participating in a study on Zithromax and my son was started 3 weeks ago.(He is a big kid 88 lbs.) He started on 1000 mg 3 X a week, after the first week he complained of tummy trouble and red spots on his body. I dropped it down to 500 mg 3X a week. I thought this would work as he did not react until the 3rd dose that week. He complained again of stomached pain and he big red welts again. I am going to call his CF doc tomorrow. He has taken Zithro lot's of times before? > > Has anyone had this kind of reaction before? Does this mean that he cannot ever take this? Just down in the dumps, as this is supposed to really help CF lungs! > > Any suggestions? > > Sadly, > Darci 8 y/o with CF and 2 sibs nocf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Thank you everyone who has responded. My doctor went to the big CF conference in New Orleans. There they talked about zithromax being used and how the studies showed increased lung function. The study was small, but promising. So she is starting her patients on Zithro for 6 months as a study. I don't think there is a placebo involved. We are getting our meds from the pharmacy and paying for them ourselves. I'm just upset as he is not responding well to the zithromax due to the tummy aches and big red spots on him. He has taken this med for infections in the past. I will call today and see if he can go to 250 on Mon. Wed. and Fri. or if he has to stop it completely. Darci 8 y/o wcf 2 sibs nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Thank you everyone who has responded. My doctor went to the big CF conference in New Orleans. There they talked about zithromax being used and how the studies showed increased lung function. The study was small, but promising. So she is starting her patients on Zithro for 6 months as a study. I don't think there is a placebo involved. We are getting our meds from the pharmacy and paying for them ourselves. I'm just upset as he is not responding well to the zithromax due to the tummy aches and big red spots on him. He has taken this med for infections in the past. I will call today and see if he can go to 250 on Mon. Wed. and Fri. or if he has to stop it completely. Darci 8 y/o wcf 2 sibs nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Thank you everyone who has responded. My doctor went to the big CF conference in New Orleans. There they talked about zithromax being used and how the studies showed increased lung function. The study was small, but promising. So she is starting her patients on Zithro for 6 months as a study. I don't think there is a placebo involved. We are getting our meds from the pharmacy and paying for them ourselves. I'm just upset as he is not responding well to the zithromax due to the tummy aches and big red spots on him. He has taken this med for infections in the past. I will call today and see if he can go to 250 on Mon. Wed. and Fri. or if he has to stop it completely. Darci 8 y/o wcf 2 sibs nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Darci, From your email it sounds like your doctor is putting all her CF patients on Zithromax only to see if it increases lung function. I'm wondering about her CF patients that already have lung function over 100% or who don't show much lung involvement, mainly digestive involvement (or neither)? Oh, well... People can develop an allergy to an antibiotic even if they've taken it before. It stinks but it happens. My son and I are both now allergic to sulfa antibiotics (such as Bactrim), and I hate that because for us it was always such a nice, cheap effective med against sinus infections. My daughter developed a penicillin allergy after taking it a couple times, so now she can only take a macrolide antibiotic when she gets strep throat. You said, " We are getting our meds from the pharmacy and paying for them ourselves. " I'm not sure what you mean by this but I do hope your doctor wrote the prescription for a 30-day supply. If not, and you're only getting the standard " Z-pack " or standard 6-day supply, then you're paying more than you have to. Do you have insurance? If so, they insurance will pay for a 30-day supply as long as the doctor writes the 'script that way. If the pharmacy or insurance company argues that this is not the FDA-approved dosing, then you need to inform them that it is different for people with CF. Your doctor is supposed to be informed enough to back you up on this -- that's part of her job -- but I don't know how well versed your doctor is in dealing with these issues. I don't know how much your 8-yr. old weighs, but maybe 500 mg. three times a week is too much for him. My son was 10-years old, and average weight when his doctor finally started prescribing antibiotics in the 500 mg. range. If your son is light weight, 500 mg. may be too much. Zithromax stays in the body for several days after discontinuing so this is building up in him. 250 mg. may be just right. My son (about 165 pounds, 6 ft. tall) has been taking 250 mg. daily since April 99. At this dose, for him, stomach upset isn't a problem, and I keep fingers crossed an allergy doesn't develop. Do let your doctor know about the hives right away. You don't want to risk other potentionally life-threatening allergic symptoms to develop, so the doctor needs to know about these symptoms. Kim Mom to (23 with cf and asthma) and (20 asthma no cf) Thank you everyone who has responded. My doctor went to the big CF conference in New Orleans. There they talked about zithromax being used and how the studies showed increased lung function. The study was small, but promising. So she is starting her patients on Zithro for 6 months as a study. I don't think there is a placebo involved. We are getting our meds from the pharmacy and paying for them ourselves. I'm just upset as he is not responding well to the zithromax due to the tummy aches and big red spots on him. He has taken this med for infections in the past. I will call today and see if he can go to 250 on Mon. Wed. and Fri. or if he has to stop it completely. Darci 8 y/o wcf 2 sibs nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Darci, From your email it sounds like your doctor is putting all her CF patients on Zithromax only to see if it increases lung function. I'm wondering about her CF patients that already have lung function over 100% or who don't show much lung involvement, mainly digestive involvement (or neither)? Oh, well... People can develop an allergy to an antibiotic even if they've taken it before. It stinks but it happens. My son and I are both now allergic to sulfa antibiotics (such as Bactrim), and I hate that because for us it was always such a nice, cheap effective med against sinus infections. My daughter developed a penicillin allergy after taking it a couple times, so now she can only take a macrolide antibiotic when she gets strep throat. You said, " We are getting our meds from the pharmacy and paying for them ourselves. " I'm not sure what you mean by this but I do hope your doctor wrote the prescription for a 30-day supply. If not, and you're only getting the standard " Z-pack " or standard 6-day supply, then you're paying more than you have to. Do you have insurance? If so, they insurance will pay for a 30-day supply as long as the doctor writes the 'script that way. If the pharmacy or insurance company argues that this is not the FDA-approved dosing, then you need to inform them that it is different for people with CF. Your doctor is supposed to be informed enough to back you up on this -- that's part of her job -- but I don't know how well versed your doctor is in dealing with these issues. I don't know how much your 8-yr. old weighs, but maybe 500 mg. three times a week is too much for him. My son was 10-years old, and average weight when his doctor finally started prescribing antibiotics in the 500 mg. range. If your son is light weight, 500 mg. may be too much. Zithromax stays in the body for several days after discontinuing so this is building up in him. 250 mg. may be just right. My son (about 165 pounds, 6 ft. tall) has been taking 250 mg. daily since April 99. At this dose, for him, stomach upset isn't a problem, and I keep fingers crossed an allergy doesn't develop. Do let your doctor know about the hives right away. You don't want to risk other potentionally life-threatening allergic symptoms to develop, so the doctor needs to know about these symptoms. Kim Mom to (23 with cf and asthma) and (20 asthma no cf) Thank you everyone who has responded. My doctor went to the big CF conference in New Orleans. There they talked about zithromax being used and how the studies showed increased lung function. The study was small, but promising. So she is starting her patients on Zithro for 6 months as a study. I don't think there is a placebo involved. We are getting our meds from the pharmacy and paying for them ourselves. I'm just upset as he is not responding well to the zithromax due to the tummy aches and big red spots on him. He has taken this med for infections in the past. I will call today and see if he can go to 250 on Mon. Wed. and Fri. or if he has to stop it completely. Darci 8 y/o wcf 2 sibs nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Darci, From your email it sounds like your doctor is putting all her CF patients on Zithromax only to see if it increases lung function. I'm wondering about her CF patients that already have lung function over 100% or who don't show much lung involvement, mainly digestive involvement (or neither)? Oh, well... People can develop an allergy to an antibiotic even if they've taken it before. It stinks but it happens. My son and I are both now allergic to sulfa antibiotics (such as Bactrim), and I hate that because for us it was always such a nice, cheap effective med against sinus infections. My daughter developed a penicillin allergy after taking it a couple times, so now she can only take a macrolide antibiotic when she gets strep throat. You said, " We are getting our meds from the pharmacy and paying for them ourselves. " I'm not sure what you mean by this but I do hope your doctor wrote the prescription for a 30-day supply. If not, and you're only getting the standard " Z-pack " or standard 6-day supply, then you're paying more than you have to. Do you have insurance? If so, they insurance will pay for a 30-day supply as long as the doctor writes the 'script that way. If the pharmacy or insurance company argues that this is not the FDA-approved dosing, then you need to inform them that it is different for people with CF. Your doctor is supposed to be informed enough to back you up on this -- that's part of her job -- but I don't know how well versed your doctor is in dealing with these issues. I don't know how much your 8-yr. old weighs, but maybe 500 mg. three times a week is too much for him. My son was 10-years old, and average weight when his doctor finally started prescribing antibiotics in the 500 mg. range. If your son is light weight, 500 mg. may be too much. Zithromax stays in the body for several days after discontinuing so this is building up in him. 250 mg. may be just right. My son (about 165 pounds, 6 ft. tall) has been taking 250 mg. daily since April 99. At this dose, for him, stomach upset isn't a problem, and I keep fingers crossed an allergy doesn't develop. Do let your doctor know about the hives right away. You don't want to risk other potentionally life-threatening allergic symptoms to develop, so the doctor needs to know about these symptoms. Kim Mom to (23 with cf and asthma) and (20 asthma no cf) Thank you everyone who has responded. My doctor went to the big CF conference in New Orleans. There they talked about zithromax being used and how the studies showed increased lung function. The study was small, but promising. So she is starting her patients on Zithro for 6 months as a study. I don't think there is a placebo involved. We are getting our meds from the pharmacy and paying for them ourselves. I'm just upset as he is not responding well to the zithromax due to the tummy aches and big red spots on him. He has taken this med for infections in the past. I will call today and see if he can go to 250 on Mon. Wed. and Fri. or if he has to stop it completely. Darci 8 y/o wcf 2 sibs nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 I'm allergic to Penicillian (and a host of other things, including red food dyes). I developed the allergy at some point when I was a kid...relatively early on, since I can just barely recall the three days of shots - two in the behind and one in the hip. Nasty hives, trip to the emergency room, etc. I haven't been able to take it since then. My docs think I'm weird because I can take Amoxicillian (which is related to Penicillian) with no problem at all...in fact, it's one of the few basic sinus-fixing antibiotics that I'm not allergic to. Anything I've ever welted on, I've never been able to take again (including a food allergy to a specific kind of apple turnover, of all things.) Same goes for the various laundry detergents and soaps I'm allergic to. Dunno about anyone else ever becoming " unallergic " to stuff... Shanna mom of Triana, age 2 wcf Re: Zithromax upset > Darci, > > From your email it sounds like your doctor is putting all her > CF patients on Zithromax only to see if it increases lung function. > > I'm wondering about her CF patients that already have lung function > over 100% or who don't show much lung involvement, mainly digestive > involvement (or neither)? Oh, well... > > People can develop an allergy to an antibiotic even if they've taken > it before. It stinks but it happens. My son and I are both now > allergic to sulfa antibiotics (such as Bactrim), and I hate that > because for us it was always such a nice, cheap effective med against > sinus infections. > > My daughter developed a penicillin allergy after taking it a couple > times, so now she can only take a macrolide antibiotic when she gets > strep throat. > > You said, " We are getting our meds from the pharmacy and paying for > them ourselves. " I'm not sure what you mean by this but I do hope your > doctor wrote the prescription for a 30-day supply. If not, and you're > only getting the standard " Z-pack " or standard 6-day supply, then > you're paying more than you have to. Do you have insurance? If so, > they insurance will pay for a 30-day supply as long as the doctor > writes the 'script that way. If the pharmacy or insurance company > argues that this is not the FDA-approved dosing, then you need to > inform them that it is different for people with CF. Your doctor > is supposed to be informed enough to back you up on this -- that's > part of her job -- but I don't know how well versed your doctor is in > dealing with these issues. > > I don't know how much your 8-yr. old weighs, but maybe 500 mg. three > times a week is too much for him. My son was 10-years old, and average > weight when his doctor finally started prescribing antibiotics in the > 500 mg. range. If your son is light weight, 500 mg. may be too much. > Zithromax stays in the body for several days after discontinuing so > this is building up in him. 250 mg. may be just right. > > My son (about 165 pounds, 6 ft. tall) has been taking 250 mg. daily > since April 99. At this dose, for him, stomach upset isn't a problem, > and I keep fingers crossed an allergy doesn't develop. > > Do let your doctor know about the hives right away. You don't want > to risk other potentionally life-threatening allergic symptoms to > develop, so the doctor needs to know about these symptoms. > > Kim > Mom to (23 with cf and asthma) and (20 asthma no cf) > > > > Thank you everyone who has responded. My doctor went to the big CF > conference in New Orleans. There they talked about zithromax being > used and how the studies showed increased lung function. The study > was small, but promising. So she is starting her patients on Zithro > for 6 months as a study. I don't think there is a placebo involved. > We are getting our meds from the pharmacy and paying for them > ourselves. I'm just upset as he is not responding well to the > zithromax due to the tummy aches and big red spots on him. He has > taken this med for infections in the past. I will call today and see > if he can go to 250 on Mon. Wed. and Fri. or if he has to stop it > completely. > > Darci > 8 y/o wcf 2 sibs nocf > > > ------------------------------------------- > 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. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 I'm allergic to Penicillian (and a host of other things, including red food dyes). I developed the allergy at some point when I was a kid...relatively early on, since I can just barely recall the three days of shots - two in the behind and one in the hip. Nasty hives, trip to the emergency room, etc. I haven't been able to take it since then. My docs think I'm weird because I can take Amoxicillian (which is related to Penicillian) with no problem at all...in fact, it's one of the few basic sinus-fixing antibiotics that I'm not allergic to. Anything I've ever welted on, I've never been able to take again (including a food allergy to a specific kind of apple turnover, of all things.) Same goes for the various laundry detergents and soaps I'm allergic to. Dunno about anyone else ever becoming " unallergic " to stuff... Shanna mom of Triana, age 2 wcf Re: Zithromax upset > Darci, > > From your email it sounds like your doctor is putting all her > CF patients on Zithromax only to see if it increases lung function. > > I'm wondering about her CF patients that already have lung function > over 100% or who don't show much lung involvement, mainly digestive > involvement (or neither)? Oh, well... > > People can develop an allergy to an antibiotic even if they've taken > it before. It stinks but it happens. My son and I are both now > allergic to sulfa antibiotics (such as Bactrim), and I hate that > because for us it was always such a nice, cheap effective med against > sinus infections. > > My daughter developed a penicillin allergy after taking it a couple > times, so now she can only take a macrolide antibiotic when she gets > strep throat. > > You said, " We are getting our meds from the pharmacy and paying for > them ourselves. " I'm not sure what you mean by this but I do hope your > doctor wrote the prescription for a 30-day supply. If not, and you're > only getting the standard " Z-pack " or standard 6-day supply, then > you're paying more than you have to. Do you have insurance? If so, > they insurance will pay for a 30-day supply as long as the doctor > writes the 'script that way. If the pharmacy or insurance company > argues that this is not the FDA-approved dosing, then you need to > inform them that it is different for people with CF. Your doctor > is supposed to be informed enough to back you up on this -- that's > part of her job -- but I don't know how well versed your doctor is in > dealing with these issues. > > I don't know how much your 8-yr. old weighs, but maybe 500 mg. three > times a week is too much for him. My son was 10-years old, and average > weight when his doctor finally started prescribing antibiotics in the > 500 mg. range. If your son is light weight, 500 mg. may be too much. > Zithromax stays in the body for several days after discontinuing so > this is building up in him. 250 mg. may be just right. > > My son (about 165 pounds, 6 ft. tall) has been taking 250 mg. daily > since April 99. At this dose, for him, stomach upset isn't a problem, > and I keep fingers crossed an allergy doesn't develop. > > Do let your doctor know about the hives right away. You don't want > to risk other potentionally life-threatening allergic symptoms to > develop, so the doctor needs to know about these symptoms. > > Kim > Mom to (23 with cf and asthma) and (20 asthma no cf) > > > > Thank you everyone who has responded. My doctor went to the big CF > conference in New Orleans. There they talked about zithromax being > used and how the studies showed increased lung function. The study > was small, but promising. So she is starting her patients on Zithro > for 6 months as a study. I don't think there is a placebo involved. > We are getting our meds from the pharmacy and paying for them > ourselves. I'm just upset as he is not responding well to the > zithromax due to the tummy aches and big red spots on him. He has > taken this med for infections in the past. I will call today and see > if he can go to 250 on Mon. Wed. and Fri. or if he has to stop it > completely. > > Darci > 8 y/o wcf 2 sibs nocf > > > ------------------------------------------- > 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. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 I'm allergic to Penicillian (and a host of other things, including red food dyes). I developed the allergy at some point when I was a kid...relatively early on, since I can just barely recall the three days of shots - two in the behind and one in the hip. Nasty hives, trip to the emergency room, etc. I haven't been able to take it since then. My docs think I'm weird because I can take Amoxicillian (which is related to Penicillian) with no problem at all...in fact, it's one of the few basic sinus-fixing antibiotics that I'm not allergic to. Anything I've ever welted on, I've never been able to take again (including a food allergy to a specific kind of apple turnover, of all things.) Same goes for the various laundry detergents and soaps I'm allergic to. Dunno about anyone else ever becoming " unallergic " to stuff... Shanna mom of Triana, age 2 wcf Re: Zithromax upset > Darci, > > From your email it sounds like your doctor is putting all her > CF patients on Zithromax only to see if it increases lung function. > > I'm wondering about her CF patients that already have lung function > over 100% or who don't show much lung involvement, mainly digestive > involvement (or neither)? Oh, well... > > People can develop an allergy to an antibiotic even if they've taken > it before. It stinks but it happens. My son and I are both now > allergic to sulfa antibiotics (such as Bactrim), and I hate that > because for us it was always such a nice, cheap effective med against > sinus infections. > > My daughter developed a penicillin allergy after taking it a couple > times, so now she can only take a macrolide antibiotic when she gets > strep throat. > > You said, " We are getting our meds from the pharmacy and paying for > them ourselves. " I'm not sure what you mean by this but I do hope your > doctor wrote the prescription for a 30-day supply. If not, and you're > only getting the standard " Z-pack " or standard 6-day supply, then > you're paying more than you have to. Do you have insurance? If so, > they insurance will pay for a 30-day supply as long as the doctor > writes the 'script that way. If the pharmacy or insurance company > argues that this is not the FDA-approved dosing, then you need to > inform them that it is different for people with CF. Your doctor > is supposed to be informed enough to back you up on this -- that's > part of her job -- but I don't know how well versed your doctor is in > dealing with these issues. > > I don't know how much your 8-yr. old weighs, but maybe 500 mg. three > times a week is too much for him. My son was 10-years old, and average > weight when his doctor finally started prescribing antibiotics in the > 500 mg. range. If your son is light weight, 500 mg. may be too much. > Zithromax stays in the body for several days after discontinuing so > this is building up in him. 250 mg. may be just right. > > My son (about 165 pounds, 6 ft. tall) has been taking 250 mg. daily > since April 99. At this dose, for him, stomach upset isn't a problem, > and I keep fingers crossed an allergy doesn't develop. > > Do let your doctor know about the hives right away. You don't want > to risk other potentionally life-threatening allergic symptoms to > develop, so the doctor needs to know about these symptoms. > > Kim > Mom to (23 with cf and asthma) and (20 asthma no cf) > > > > Thank you everyone who has responded. My doctor went to the big CF > conference in New Orleans. There they talked about zithromax being > used and how the studies showed increased lung function. The study > was small, but promising. So she is starting her patients on Zithro > for 6 months as a study. I don't think there is a placebo involved. > We are getting our meds from the pharmacy and paying for them > ourselves. I'm just upset as he is not responding well to the > zithromax due to the tummy aches and big red spots on him. He has > taken this med for infections in the past. I will call today and see > if he can go to 250 on Mon. Wed. and Fri. or if he has to stop it > completely. > > Darci > 8 y/o wcf 2 sibs nocf > > > ------------------------------------------- > 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. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Shanna, My daughter was allergic to Red Dye #40 but she isn't any more. And reading your post is like someone just shined a light into my eyes! MAYBE, my daughter was never allergic to penicillin in the first place! Liquid Amoxicillian -- to which she did develop hives -- is colored pink! IF Amoxicillian is colored pink by Red dye #40, perhaps that's why she got hives in the first place. I figured out the dye allergy in a weird way. Ever since she was about 2 years old, she developed excema on the backs of her calves, behind her knees, and inside the crook of her arms. Sometimes the backs of her legs were so bad it looked like they'd been burned with a blow torch. Nothing her allergist tried did any good. When she was about 3, I think, I took her to the pediatrician because I suspected she had asthma. He put her on alupent syrup -- the same med he'd put on a couple years earlier right before his CF diagnosis. Well, her wheezing cleared up but her legs got worse. (She wheezes like a frieght train during an asthma flare up, but when 's asthma flares, he just sounds sort of out of breath). Anyway, her legs got really bad so I took her back to their allergy specialist, who took a scraping, said she was culturing staph, and put her on an antibiotic and prescribed Aveeno baths, a prescription hydrocortisone lotion, and Vaseline Intensive Care Lotion's special dermatology formula for severely dry skin. I finally got her legs back under control and several days later my youngest sister came to visit and brought the kids a packet of red Kool-Aid as a treat (back then, I never bought Kool-Aid). The next day, 's legs flared up again. I got them cleared up, then she needed Alupent again, and again the excema returned. Finally (okay, so I'm slow!), I wondered if it was red food coloring. I went to the grocery store and found the packet of Kool-Aid and read the ingredients, then I went to our pharmacy and asked them to look up the ingredients in alupent. Bingo. Both had red dye #40. was such a trooper about dropping red from her diet. She felt so special! Whenever there was a party at school, I'd send a Kool-Aid drink box with her as a treat instead of drinking whatever red party punch some well-meaning homeroom mother would bring. In those days, the Kool-Aid drink boxes did *not* have red dye #40, though their packets of mix did. Sadly, that changed and they started putting red dye in the drink boxes. But she was so good about it. Whenever she'd get M&Ms, she'd trade me all her red ones and choose different colors from my bag. But like I said, she can eat red now. Funny story... Just a couple years ago told me that when she was a little girl, whenever I'd look at the crooks of her arms saying, " You have excema in your arms, " she always thought I was saying, " You have eggs in your arms. " And that's what she'd tell her friends if they ever asked about the rash, " I just have eggs in my arms! " Anyway, I have heard about people becoming unallergic to all sorts of things, so it's possible about meds too. I know that some people with CF have gone into the hospital to become desensitized to an antibiotic to which they are allergic. One person told me it involved close monitoring in ICU to be sure there wasn't a life-threatening reaction, and they do IV benedryl at the same time. Kim Mom to (23 with cf and asthma) and (20 asthma no cf) > > Thank you everyone who has responded. My doctor went to the big CF > > conference in New Orleans. There they talked about zithromax being > > used and how the studies showed increased lung function. The study > > was small, but promising. So she is starting her patients on Zithro > > for 6 months as a study. I don't think there is a placebo involved. > > We are getting our meds from the pharmacy and paying for them > > ourselves. I'm just upset as he is not responding well to the > > zithromax due to the tummy aches and big red spots on him. He has > > taken this med for infections in the past. I will call today and see > > if he can go to 250 on Mon. Wed. and Fri. or if he has to stop it > > completely. > > > > Darci > > 8 y/o wcf 2 sibs nocf > > > > > > ------------------------------------------- > > 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. > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
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