Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 > I went through some of the archives, but thought it would be easier > to just introduce myself and ask my questions!! > > HI, I am Amy!! I am not the Xolair user, it has been presrcibed for > my 12 y/o son. He is 5'2 and 88 lbs (don't know if his size matters > when it comes to the dosing)! Well, he is on Nexium (reflux), > Advair 500/50, singulair, zyrtech, nasonex and astilin (sp), > albuterol or zopenex and prednisone on occasion and daily nasal > rinse w/saline solution. He also gets allergy shots and this Xolair > thing is new. I am just wondering about insurance coverage (ours > will cover 90%), side effects and any kind of benefit after the > shots stop. I know that after 3-5 years of allergy shots, he could > be immune for 3-5 years, are their any lasting effects with Xolair > and, how long is it usually prescribed for and do any of you know if > this is safe for a growing adolescent? > > Thanks in advance!! > > Amy (mom to Mason, Garrett, Jordan & Logan) Welcome Amy Yes, my doctor said that Xolair is for adults but it looks like your doctor might be making an execption. I would ask him about this when you bring your son for his next visit... also, you may want to get a 2nd opinion. I am really blessed to have an insurance company that pays all but a small 40.00 copay per month...this is for 2 injections every two weeks. 10.00 a shot is pretty cheap considering how much the xolair costs. I do pay 1000.00 a month for coverage for me and the wife/ Doug in Arkansas Group founder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Hey nice group you have here. Hard to find support groups dealing with Xolair. As you can tell, I am new here. Brief history, never suffered asthma problems until I turned 30. I received a flu shot, got sick, than developed severe adult on set asthma. My sinus where always bad, but I could live with them, until the flu shot. Since than I have had about six sinus surgeries. I am scheduled for another in May, at the University of Penn. Doctor is Kennedy, widely known, who also supposedly helped " perfect " Orthoscopic nasal surgery. This is the second one he is doing, the last one he did helped for several years. My allergist was able to have me approved for Xolair. I am using, http://www.curascript.com/contus.shtml they have been very good. Yesterday I received my first shot, two injections. I am told I will get two injections, once a month. No co pay, thank God. I must tell you, about two hours after the injection, I felt immediate relief with my sinuses congestion. My asthma feels a little better, but I am not sure if thats from the Xolair, or just the changeability of it. I am currently on FloVent, Zytec, Singulair, Flonase, max air, (all of the doses of these medicines are double the recommended doses) and the occasion steroid dose when needed. Steroid use was greatly reduced in recent years. Had cataract surgery about 5 years ago, due to heavy steroid use when I was first diagnosed with asthma. Prior to Xolair, I think the double dose of Singulair really helped. Will keep the group advised of my progress, but again, a noticeable difference in sinus congestion. Also my allergists main reason for putting me on Xolair was sinus, as my asthma has remained persistent, but stable, and has not really flared up as it had in the past. Of course he had to submit that the medicine was for asthma to have insurance pay, I guess the IGE test showed high enough results for approval. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 ON a side note, for all with constant sinus congestion/mucous. You may want to have your ENT do a swab culture to determine the type of bacteria in your sinus. I had one done, the results where, Pseudomonas. This is a stubborn bacteria, regular antibiotics will not kill it. The one of choice is Cipro, used for about 30 days. All the other normal drugs for sinus infection will not work, thus the reason you will not feel any better. So if you are having constant sinus infections, and your normal drugs aren't working, have a culture done to determine what antibiotic you really need. > Hey nice group you have here. Hard to find support groups dealing > with Xolair. As you can tell, I am new here. Brief history, never > suffered asthma problems until I turned 30. I received a flu shot, > got sick, than developed severe adult on set asthma. My sinus where > always bad, but I could live with them, until the flu shot. Since > than I have had about six sinus surgeries. I am scheduled for > another in May, at the University of Penn. Doctor is Kennedy, > widely known, who also supposedly helped " perfect " Orthoscopic > nasal surgery. This is the second one he is doing, the last one he > did helped for several years. My allergist was able to have me > approved for Xolair. I am using, > http://www.curascript.com/contus.shtml they have been very good. > Yesterday I received my first shot, two injections. I am told I will > get two injections, once a month. No co pay, thank God. I must tell > you, about two hours after the injection, I felt immediate relief > with my sinuses congestion. My asthma feels a little better, but I > am not sure if thats from the Xolair, or just the changeability of > it. I am currently on FloVent, Zytec, Singulair, Flonase, max air, > (all of the doses of these medicines are double the recommended > doses) and the occasion steroid dose when needed. Steroid use was > greatly reduced in recent years. Had cataract surgery about 5 years > ago, due to heavy steroid use when I was first diagnosed with asthma. > Prior to Xolair, I think the double dose of Singulair really helped. > Will keep the group advised of my progress, but again, a noticeable > difference in sinus congestion. Also my allergists main reason for > putting me on Xolair was sinus, as my asthma has remained persistent, > but stable, and has not really flared up as it had in the past. Of > course he had to submit that the medicine was for asthma to have > insurance pay, I guess the IGE test showed high enough results for > approval. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Amy, Welcome to the group. I'm sure you will find, as I have, that Doug has set up an excellent community forum here to ask questions, get information, or sometimes just vent frustration! Regarding your son, I too thought that Xolair was for adults only, but with the amount of medication he is on your physician must be making an allowance. Yes, size matters with Xolair. The dosage is based on two factors - patient weight and IgE count. My guess is that your son will be on a very low dose, primarily based on his size. I had a great response to Xolair. Within 24 hours I could tell a difference. Today, even though I still have occasional asthma flares (usually coincidental with a sinus infection or other illness), my overall condition is greatly improved. The worst side effect I had with the shots was bruising. Xolair is very thick, and if injected too quickly will leave a bruise. Since I have started giving the shots myself (in the leg) there has been no bruising. Since your son is small, he may have a problem with this. Other than the bruising, I have had no other problems (i.e., residual soreness, swelling, etc.) I actually have more side effects from my allergy shots than I do from the Xolair! My allergist instructed me to not stop getting my allergy shots (also self-injected) and unless it is suspected that your son may 'grow out' of his allergies / asthma, I doubt he will ever stop getting the Xolair. He may, however, be able to reduce or eliminate the other medications, which is a good thing. Having grown up with asthma myself (I'm now 41 and have had severe asthma since I was 15) I can appreciate the frustration your son must feel. Being an adolescent is hard enough without dealing with a major medical problem too. I sincerely hope that the Xolair is effective for him. Believe me, it will make his life much better. Best wishes. Greg > I went through some of the archives, but thought it would be easier > to just introduce myself and ask my questions!! > > HI, I am Amy!! I am not the Xolair user, it has been presrcibed for > my 12 y/o son. He is 5'2 and 88 lbs (don't know if his size matters > when it comes to the dosing)! Well, he is on Nexium (reflux), > Advair 500/50, singulair, zyrtech, nasonex and astilin (sp), > albuterol or zopenex and prednisone on occasion and daily nasal > rinse w/saline solution. He also gets allergy shots and this Xolair > thing is new. I am just wondering about insurance coverage (ours > will cover 90%), side effects and any kind of benefit after the > shots stop. I know that after 3-5 years of allergy shots, he could > be immune for 3-5 years, are their any lasting effects with Xolair > and, how long is it usually prescribed for and do any of you know if > this is safe for a growing adolescent? > > Thanks in advance!! > > Amy (mom to Mason, Garrett, Jordan & Logan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 It is interesting that you can feel a difference within a short time after the shot. MAson is not very self aware, I will have to remember to have him think about the way he is feeling prior to the shot and ask him again a couple hours later. He isn't much help when it comes to the meds--the Doc was asking how he felt after the Astelin (the only spray taken at night) and he didn't know!! He rarely gets sinus infections, but is always congested! Well, the nasal rinse does wonders--he walks around the house sniffing!! hehe Amy > > Hey nice group you have here. Hard to find support groups dealing > > with Xolair. As you can tell, I am new here. Brief history, never > > suffered asthma problems until I turned 30. I received a flu shot, > > got sick, than developed severe adult on set asthma. My sinus > where > > always bad, but I could live with them, until the flu shot. Since > > than I have had about six sinus surgeries. I am scheduled for > > another in May, at the University of Penn. Doctor is > Kennedy, > > widely known, who also supposedly helped " perfect " Orthoscopic > > nasal surgery. This is the second one he is doing, the last one he > > did helped for several years. My allergist was able to have me > > approved for Xolair. I am using, > > http://www.curascript.com/contus.shtml they have been very good. > > Yesterday I received my first shot, two injections. I am told I > will > > get two injections, once a month. No co pay, thank God. I must > tell > > you, about two hours after the injection, I felt immediate relief > > with my sinuses congestion. My asthma feels a little better, but I > > am not sure if thats from the Xolair, or just the changeability of > > it. I am currently on FloVent, Zytec, Singulair, Flonase, max air, > > (all of the doses of these medicines are double the recommended > > doses) and the occasion steroid dose when needed. Steroid use was > > greatly reduced in recent years. Had cataract surgery about 5 > years > > ago, due to heavy steroid use when I was first diagnosed with > asthma. > > Prior to Xolair, I think the double dose of Singulair really > helped. > > Will keep the group advised of my progress, but again, a noticeable > > difference in sinus congestion. Also my allergists main reason for > > putting me on Xolair was sinus, as my asthma has remained > persistent, > > but stable, and has not really flared up as it had in the past. > Of > > course he had to submit that the medicine was for asthma to have > > insurance pay, I guess the IGE test showed high enough results for > > approval. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 MAson's IGE results were 115--his Doc said that was within range for the shot. He doesn't get sinus infections often, maybe 1 x a year. His is always nasally--congested, but the nasal rinse does wonders, the first day he used it, he wandered around the house sniffing, saying, I can breathe!! I am not sure if he is in tuned to his body enough to know how things work, he has lived like this his whole life, so it just seems normal to him. We were trying to figure out if the Astelin was working and he had no clue--even though at night, that is his only nasal spray. I will try to get him to think about the way he is feeling prior to the shot and then ask him again a couple hours later. Hopefully I can help him become a little more self aware. Thanks for the great info! Amy > > Hey nice group you have here. Hard to find support groups dealing > > with Xolair. As you can tell, I am new here. Brief history, never > > suffered asthma problems until I turned 30. I received a flu shot, > > got sick, than developed severe adult on set asthma. My sinus > where > > always bad, but I could live with them, until the flu shot. Since > > than I have had about six sinus surgeries. I am scheduled for > > another in May, at the University of Penn. Doctor is > Kennedy, > > widely known, who also supposedly helped " perfect " Orthoscopic > > nasal surgery. This is the second one he is doing, the last one he > > did helped for several years. My allergist was able to have me > > approved for Xolair. I am using, > > http://www.curascript.com/contus.shtml they have been very good. > > Yesterday I received my first shot, two injections. I am told I > will > > get two injections, once a month. No co pay, thank God. I must > tell > > you, about two hours after the injection, I felt immediate relief > > with my sinuses congestion. My asthma feels a little better, but I > > am not sure if thats from the Xolair, or just the changeability of > > it. I am currently on FloVent, Zytec, Singulair, Flonase, max air, > > (all of the doses of these medicines are double the recommended > > doses) and the occasion steroid dose when needed. Steroid use was > > greatly reduced in recent years. Had cataract surgery about 5 > years > > ago, due to heavy steroid use when I was first diagnosed with > asthma. > > Prior to Xolair, I think the double dose of Singulair really > helped. > > Will keep the group advised of my progress, but again, a noticeable > > difference in sinus congestion. Also my allergists main reason for > > putting me on Xolair was sinus, as my asthma has remained > persistent, > > but stable, and has not really flared up as it had in the past. > Of > > course he had to submit that the medicine was for asthma to have > > insurance pay, I guess the IGE test showed high enough results for > > approval. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Amy, I keep a diary almost every day detailing how I am feeling and what meds I am taking. I also keep track of peak flows on a daily basis. This way I can recall what happens and when, and hopefully make a determination as to why. This is easier said than done, though, unless you are on the computer all day like I am. A 12 year old is not likely to be so disciplined to keep up with this, but it does help. You didn't mention - is Mason the only one of your sons with asthma? Where is he 'in order'? Just curious. I have an older sister and a younger brother, both of whom have seasonal allergies, but neither of whom have suffered with year-round asthma. Greg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Greg, Mason is my oldest. All of my sons have asthma, but the other 3 only get it occasionally. I have 1 son who uses the nebulizer 5-10 x a season and the other 2 generally only get asthma if they are sick. I have a son who has strange allergies (one who only has asthma when ill) the whites of his eyes have bulged out--they said it was like a hive on the eye--this happened a few times and he is more prone to rashes and such, but it only happens a few times a year. Mason is the only one who is chronic. Mason does keep track of his peak flo--I have a basket of meds in my bathroom and every morning and evening I set out everything he needs to take and his peak flo meter and the chart and a pen to record it. I think I will add a notebook and ask him to write in his symptoms--like, if he woke at night, or had an attack during pe--we can just incorporate it into his regular med routine. I think that is an excellent idea!! Thank you! > Amy, > > I keep a diary almost every day detailing how I am feeling and what > meds I am taking. I also keep track of peak flows on a daily > basis. This way I can recall what happens and when, and hopefully > make a determination as to why. > > This is easier said than done, though, unless you are on the > computer all day like I am. A 12 year old is not likely to be so > disciplined to keep up with this, but it does help. > > You didn't mention - is Mason the only one of your sons with > asthma? Where is he 'in order'? Just curious. I have an older > sister and a younger brother, both of whom have seasonal allergies, > but neither of whom have suffered with year-round asthma. > > Greg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Well my sinus are so messed up, I guess a little improvement seems like a lot to me. Again, the asthma improvement may just be the way it varies on its on. All though I still feel pretty clear right now. I hope Xolair really works for me. Good luck with your son. -- - In , " Amy B. " <my4sons@h...> wrote: > It is interesting that you can feel a difference within a short > time after the shot. MAson is not very self aware, I will have to > remember to have him think about the way he is feeling prior to the > shot and ask him again a couple hours later. He isn't much help > when it comes to the meds--the Doc was asking how he felt after the > Astelin (the only spray taken at night) and he didn't know!! > He rarely gets sinus infections, but is always congested! Well, the > nasal rinse does wonders--he walks around the house sniffing!! hehe > > Amy > > > > Hey nice group you have here. Hard to find support groups > dealing > > > with Xolair. As you can tell, I am new here. Brief history, > never > > > suffered asthma problems until I turned 30. I received a flu > shot, > > > got sick, than developed severe adult on set asthma. My sinus > > where > > > always bad, but I could live with them, until the flu shot. > Since > > > than I have had about six sinus surgeries. I am scheduled for > > > another in May, at the University of Penn. Doctor is > > Kennedy, > > > widely known, who also supposedly helped " perfect " Orthoscopic > > > nasal surgery. This is the second one he is doing, the last one > he > > > did helped for several years. My allergist was able to have me > > > approved for Xolair. I am using, > > > http://www.curascript.com/contus.shtml they have been very > good. > > > Yesterday I received my first shot, two injections. I am told I > > will > > > get two injections, once a month. No co pay, thank God. I must > > tell > > > you, about two hours after the injection, I felt immediate > relief > > > with my sinuses congestion. My asthma feels a little better, > but I > > > am not sure if thats from the Xolair, or just the changeability > of > > > it. I am currently on FloVent, Zytec, Singulair, Flonase, max > air, > > > (all of the doses of these medicines are double the recommended > > > doses) and the occasion steroid dose when needed. Steroid use > was > > > greatly reduced in recent years. Had cataract surgery about 5 > > years > > > ago, due to heavy steroid use when I was first diagnosed with > > asthma. > > > Prior to Xolair, I think the double dose of Singulair really > > helped. > > > Will keep the group advised of my progress, but again, a > noticeable > > > difference in sinus congestion. Also my allergists main reason > for > > > putting me on Xolair was sinus, as my asthma has remained > > persistent, > > > but stable, and has not really flared up as it had in the > past. > > Of > > > course he had to submit that the medicine was for asthma to have > > > insurance pay, I guess the IGE test showed high enough results > for > > > approval. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Greg, My son has had asthma since about 18 months--That was when he was first hospitalized with croup--it waas a common thing until it occured to me that his dad has severe asthma, maybe MAson does too-- at that point (he was 4) I took him to an allergy/asthma speialist. We have only been getting treatment from teh reg perdiatrician, but the asthma interferes with his life so much, no sports, wheezing through PE, waking at night, etc...that I figured we needed to go back to a specialist--with all the asthmas meds he was taking, I ws surprised that he still had 3-4 attakcs a day! Well, the specialist put him on a lot of allergy meds, also allergy tested him, that was unbelievable, the kid is allergic to eveything! Anyway,t eh allergy meds have significantly reduced his need for albuterol, he iseds his inhaler aprox 1 x a day now and the nebulizer 3 x a week--this is a huge improvement, but when we went in for a recheck 1 month after the new protocol, he was still only blowing (not peak flo--into something attached to a pc) 52%, his IGE test came back 115--which meant that he can get the Xolair shot. I was told that within 3-6 months with the allergy and Xolair shots that we may be able to cutout almost all the other meds!! Wouldn't that be nice!! Thanks for the info--I Amnot sure if I will be able to give him his shot or if we need to go to a clinic for it! Amy > > I went through some of the archives, but thought it would be > easier > > to just introduce myself and ask my questions!! > > > > HI, I am Amy!! I am not the Xolair user, it has been presrcibed > for > > my 12 y/o son. He is 5'2 and 88 lbs (don't know if his size > matters > > when it comes to the dosing)! Well, he is on Nexium (reflux), > > Advair 500/50, singulair, zyrtech, nasonex and astilin (sp), > > albuterol or zopenex and prednisone on occasion and daily nasal > > rinse w/saline solution. He also gets allergy shots and this > Xolair > > thing is new. I am just wondering about insurance coverage (ours > > will cover 90%), side effects and any kind of benefit after the > > shots stop. I know that after 3-5 years of allergy shots, he > could > > be immune for 3-5 years, are their any lasting effects with Xolair > > and, how long is it usually prescribed for and do any of you know > if > > this is safe for a growing adolescent? > > > > Thanks in advance!! > > > > Amy (mom to Mason, Garrett, Jordan & Logan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Amy, This is the time of year I dread the most because my allergies historically get so bad. This will be the first time I have been through the season on Xolair. I'm keeping my fingers crossed! My biggest disappointment with Xolair is that I haven't really been able to cut back on the meds as significantly as I had hoped (I have cut back somewhat). What has happened, though, is that I respond MUCH better to them than before. In other words, if I get a bit tight, I can take Flovent for a few days and it will kick it right out, whereas before, I was taking Flovent all the time with only nominal relief. I wasn't taking huge doses of prednisone to treat my asthma - 20 mg every other day. For a guy my size (230 lbs) this is not a lot. Others who were on more significant doses have cut back considerably. The other disappointment I have found is that my peak flows have improved from about 50% predicted to only about 65% of predicted. My allergist says that I have had asthma for so long that this will probably not improve much. I still want to prove him wrong, and I exercise a lot to try to improve this. The best news is that I hardly ever use the rescue inhaler any more. I still carry one with me almost all the time out of 26 years of habit, but some times I consciously leave it at home as a test. So far it hasn't been a problem. I have always hated to use that thing, and have been embarassed to use it in public. I would only use it in the privacy of a rest room, my office, or my car, unless I had no choice. I think this aversion might be somewhat universal, because I can only recall ever seeing two other people using one publicly, and believe me, I am very sensitive to this. All the best to you and your son. My mom has gone through many, many days and nights of anguish worrying about me, as I am sure you have with Mason. If it works, Xolair will change your life as much as it will his. Good luck. Greg > Greg, > My son has had asthma since about 18 months--That was when he was > first hospitalized with croup--it waas a common thing until it > occured to me that his dad has severe asthma, maybe MAson does too- - > at that point (he was 4) I took him to an allergy/asthma speialist. > We have only been getting treatment from teh reg perdiatrician, but > the asthma interferes with his life so much, no sports, wheezing > through PE, waking at night, etc...that I figured we needed to go > back to a specialist--with all the asthmas meds he was taking, I ws > surprised that he still had 3-4 attakcs a day! Well, the specialist > put him on a lot of allergy meds, also allergy tested him, that was > unbelievable, the kid is allergic to eveything! Anyway,t eh allergy > meds have significantly reduced his need for albuterol, he iseds his > inhaler aprox 1 x a day now and the nebulizer 3 x a week--this is a > huge improvement, but when we went in for a recheck 1 month after > the new protocol, he was still only blowing (not peak flo--into > something attached to a pc) 52%, his IGE test came back 115--which > meant that he can get the Xolair shot. I was told that within 3-6 > months with the allergy and Xolair shots that we may be able to > cutout almost all the other meds!! Wouldn't that be nice!! > Thanks for the info--I Amnot sure if I will be able to give him his > shot or if we need to go to a clinic for it! > > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 -, Welcome!! Most everyone here is using Andy Cutler's chelation protocol to remove mercury/and other heavy metals. This involves using Alpha Lipoic Acid, DMSA or other chelators. There is tons of information in the files. Chelation has helped many children here, I am preparing to chelate my two children at this time. I know that chelating with ALA is not expensive. You can buy this supplement at the store. However, you cannot chelate if he has any metal fillings. Those need to be replaced by a mercury free dentist. Many here are also using vitmamins and minerals, and natural substances to treat viruses, yeast, and aid in chelation. I know that this chelation method will remove mercury from the brain. Many methods do not do this. My daugher is 10 and received a lot of mercury in her vaccinations. She has mercury poisoning from this. Unless you son was never vaccinated, chances are that he has metals as well. Have you ever done a hair analysis on him? This can be performed through Doctors Data Inc. If you decide to do that you can post the results here an others will interpret if and guide you in chelating him accordingly. Not to overwelm you but there is tons of useful and helpful information on this board. It helped me find out what is really wrong with my son. Why he is PDD. And how I can help him. I am glad you joined! Have a great day! -- In , " pinkbeachskate " <garcias4@...> wrote: > > Hi, everyone! I'm , my 10yo son, , has > autism/adhd/odd/ocd. I have tried detoxing my son using the Japanese > detox foot pads twice, so far couldn't finish either time due to $$ > issues. I have noticed improvements, and hopefully one day we'll get > to complete a detox. I like the foot pads, because they are > relatively cheap, non-invasive, totally natural, and they work pretty > well. Has anyone else done a complete foot pad detox, and if so, what > were the results? What are most of you using for chelation/detox? Is > there a big difference between the two? Any info. will be greatly > appreciated. Have a fabulous day - > Quote Link to comment Share on other sites More sharing options...
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