Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 , how many times a day do you do the nose wash? Carol > > > > > > > > I do not know what to think but I have been told by 3 immunologists and 3 ENTs > > > > that it is IMPERATIVE that we do nasal rinses daily to keep the overall bacteria > > > > rates down there fore the tissue can remain more healthy and less inflammed > > > > therefore preventing infections. I would be interested to know what others have > > > > been told because this has been for about the last 6 or 7 years that they have > > > > been pushing them. I am sure that it could change as far as the recommendations > > > > since they have only been used over that period of time. My son does have PID > > > > but this is the info we have at this time to work with. > > > > > > > > > > > > BARBIE > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 2-3 times daily, depending on how bad the sinuses are. We use a full bottle of the Neilmed spray bottle (not the netipot). Well...maybe your ped will realize that you are desperate, your kid isnt a " typical " kid with a " typical " winter cold, and you need more help than he is giving you. Obviously if you thought it could wait, you would have waited till Monday. At least you got some results. The coughing constantly is terrible and frustrating. Is he on a nebulizer? He has asthma, doesnt he? valarie mom to 3 w/cvid > > > > > > > > > > I do not know what to think but I have been told by 3 immunologists and 3 ENTs > > > > > that it is IMPERATIVE that we do nasal rinses daily to keep the overall bacteria > > > > > rates down there fore the tissue can remain more healthy and less inflammed > > > > > therefore preventing infections. I would be interested to know what others have > > > > > been told because this has been for about the last 6 or 7 years that they have > > > > > been pushing them. I am sure that it could change as far as the recommendations > > > > > since they have only been used over that period of time. My son does have PID > > > > > but this is the info we have at this time to work with. > > > > > > > > > > > > > > > BARBIE > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 2-3 times daily, depending on how bad the sinuses are. We use a full bottle of the Neilmed spray bottle (not the netipot). Well...maybe your ped will realize that you are desperate, your kid isnt a " typical " kid with a " typical " winter cold, and you need more help than he is giving you. Obviously if you thought it could wait, you would have waited till Monday. At least you got some results. The coughing constantly is terrible and frustrating. Is he on a nebulizer? He has asthma, doesnt he? valarie mom to 3 w/cvid > > > > > > > > > > I do not know what to think but I have been told by 3 immunologists and 3 ENTs > > > > > that it is IMPERATIVE that we do nasal rinses daily to keep the overall bacteria > > > > > rates down there fore the tissue can remain more healthy and less inflammed > > > > > therefore preventing infections. I would be interested to know what others have > > > > > been told because this has been for about the last 6 or 7 years that they have > > > > > been pushing them. I am sure that it could change as far as the recommendations > > > > > since they have only been used over that period of time. My son does have PID > > > > > but this is the info we have at this time to work with. > > > > > > > > > > > > > > > BARBIE > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Yes Valarie he has asthma, no nebulizer, they don't give those out in Canada, only to the severely asthmatic. With the sinus problem sometimes albuterol works, sometimes it does not. Today I gave him some and it got much quieter. Other days it does nothing for his cough. He is a cougher, not a wheezer. I will give him some every 4 hours today and tomorrow. Of course, maybe the Zithromax is also kicking in. But who cares what worked at this point, at least for this moment we can take a breather. Of course, the thing is to catch the sinuses quickly. My doc makes us wait a full 10 days before an antibiotic. Think that is a mistake. Now 30 plus days have passed and we are in crisis. Plus my son has trouble telling when his lungs are in trouble. He always points at his throat and says it is itchy. Carol > > > > > > > > > > > > I do not know what to think but I have been told by 3 immunologists and 3 ENTs > > > > > > that it is IMPERATIVE that we do nasal rinses daily to keep the overall bacteria > > > > > > rates down there fore the tissue can remain more healthy and less inflammed > > > > > > therefore preventing infections. I would be interested to know what others have > > > > > > been told because this has been for about the last 6 or 7 years that they have > > > > > > been pushing them. I am sure that it could change as far as the recommendations > > > > > > since they have only been used over that period of time. My son does have PID > > > > > > but this is the info we have at this time to work with. > > > > > > > > > > > > > > > > > > BARBIE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Yes Valarie he has asthma, no nebulizer, they don't give those out in Canada, only to the severely asthmatic. With the sinus problem sometimes albuterol works, sometimes it does not. Today I gave him some and it got much quieter. Other days it does nothing for his cough. He is a cougher, not a wheezer. I will give him some every 4 hours today and tomorrow. Of course, maybe the Zithromax is also kicking in. But who cares what worked at this point, at least for this moment we can take a breather. Of course, the thing is to catch the sinuses quickly. My doc makes us wait a full 10 days before an antibiotic. Think that is a mistake. Now 30 plus days have passed and we are in crisis. Plus my son has trouble telling when his lungs are in trouble. He always points at his throat and says it is itchy. Carol > > > > > > > > > > > > I do not know what to think but I have been told by 3 immunologists and 3 ENTs > > > > > > that it is IMPERATIVE that we do nasal rinses daily to keep the overall bacteria > > > > > > rates down there fore the tissue can remain more healthy and less inflammed > > > > > > therefore preventing infections. I would be interested to know what others have > > > > > > been told because this has been for about the last 6 or 7 years that they have > > > > > > been pushing them. I am sure that it could change as far as the recommendations > > > > > > since they have only been used over that period of time. My son does have PID > > > > > > but this is the info we have at this time to work with. > > > > > > > > > > > > > > > > > > BARBIE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 ok...are you on the asthma board with me too? Thought I recognized you. Waiting a full ten days might work for " normal " kids, but for kids with immune problems that might not be such a good idea. I hope you can get into the immuno soon and hopefully he will write a plan of care to share with your primary care dr. I was wondering about the neb bc for my son, when he is coughing that bad then xopenex along with atrovent seems to help. I wonder if you could get atrovent in the inhaler? Also, we always up his inhaled steroids while ill. I hope your little guy is better soon. valarie > > > > > > > > > > > > > > I do not know what to think but I have been told by 3 immunologists and 3 ENTs > > > > > > > that it is IMPERATIVE that we do nasal rinses daily to keep the overall bacteria > > > > > > > rates down there fore the tissue can remain more healthy and less inflammed > > > > > > > therefore preventing infections. I would be interested to know what others have > > > > > > > been told because this has been for about the last 6 or 7 years that they have > > > > > > > been pushing them. I am sure that it could change as far as the recommendations > > > > > > > since they have only been used over that period of time. My son does have PID > > > > > > > but this is the info we have at this time to work with. > > > > > > > > > > > > > > > > > > > > > BARBIE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 ok...are you on the asthma board with me too? Thought I recognized you. Waiting a full ten days might work for " normal " kids, but for kids with immune problems that might not be such a good idea. I hope you can get into the immuno soon and hopefully he will write a plan of care to share with your primary care dr. I was wondering about the neb bc for my son, when he is coughing that bad then xopenex along with atrovent seems to help. I wonder if you could get atrovent in the inhaler? Also, we always up his inhaled steroids while ill. I hope your little guy is better soon. valarie > > > > > > > > > > > > > > I do not know what to think but I have been told by 3 immunologists and 3 ENTs > > > > > > > that it is IMPERATIVE that we do nasal rinses daily to keep the overall bacteria > > > > > > > rates down there fore the tissue can remain more healthy and less inflammed > > > > > > > therefore preventing infections. I would be interested to know what others have > > > > > > > been told because this has been for about the last 6 or 7 years that they have > > > > > > > been pushing them. I am sure that it could change as far as the recommendations > > > > > > > since they have only been used over that period of time. My son does have PID > > > > > > > but this is the info we have at this time to work with. > > > > > > > > > > > > > > > > > > > > > BARBIE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Thanks Valarie, yes I am on the asthma board too. Immunologist appointment Tuesday morning. They are closed tomorrow. I'll ask about Atrovent. Carol > > > > > > > > > > > > > > > > I do not know what to think but I have been told by 3 immunologists and 3 ENTs > > > > > > > > that it is IMPERATIVE that we do nasal rinses daily to keep the overall bacteria > > > > > > > > rates down there fore the tissue can remain more healthy and less inflammed > > > > > > > > therefore preventing infections. I would be interested to know what others have > > > > > > > > been told because this has been for about the last 6 or 7 years that they have > > > > > > > > been pushing them. I am sure that it could change as far as the recommendations > > > > > > > > since they have only been used over that period of time. My son does have PID > > > > > > > > but this is the info we have at this time to work with. > > > > > > > > > > > > > > > > > > > > > > > > BARBIE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Thanks Valarie, yes I am on the asthma board too. Immunologist appointment Tuesday morning. They are closed tomorrow. I'll ask about Atrovent. Carol > > > > > > > > > > > > > > > > I do not know what to think but I have been told by 3 immunologists and 3 ENTs > > > > > > > > that it is IMPERATIVE that we do nasal rinses daily to keep the overall bacteria > > > > > > > > rates down there fore the tissue can remain more healthy and less inflammed > > > > > > > > therefore preventing infections. I would be interested to know what others have > > > > > > > > been told because this has been for about the last 6 or 7 years that they have > > > > > > > > been pushing them. I am sure that it could change as far as the recommendations > > > > > > > > since they have only been used over that period of time. My son does have PID > > > > > > > > but this is the info we have at this time to work with. > > > > > > > > > > > > > > > > > > > > > > > > BARBIE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 my ds8 has CVID and asthma/allergies/reflux. After his CVID diagnosis, Our pedi now starts him on antibiotics as soon as I tell him that his cold has turned into an infection (and I do wait until I am sure)--no more waiting 10 days! so he does the nasal saline, 2 kinds of nose sprays, inhalers...he does not know how to blow his nose, so he gets frequent saline. It is a crime to make your son wait so long! you may need to get the immunologist to write a letter saying that as soon as he...gets a fever, mucus turns thicker, feels worse instead of better, blah-blah, whatever his usual infection symptoms are...he needs antibiotics begun. Maybe that would help. As I'm sure you know, it takes much longer to treat a sinus infection once it sets in so badly. In my experience (myself and 7 kids with asthma), atypical (read cough-variant) asthma kids sometimes do better with atrovent over albuterol or xopenex. My ds needs 2 puffs atrovent and 2 puffs albuterol as his " treatment " when he is experiencing symptoms. ) I also have igg subclass deficiencies, and get frequent sinus infections. we try to throw all the meds and rinses at me to keep the infections away Mindy, in Virginia, mom of seven > > ok...are you on the asthma board with me too? Thought I recognized you. > > Waiting a full ten days might work for " normal " kids, but for kids with > immune problems that might not be such a good idea. I hope you can get > into the immuno soon and hopefully he will write a plan of care to share > with your primary care dr. > > I was wondering about the neb bc for my son, when he is coughing that bad > then xopenex along with atrovent seems to help. I wonder if you could get > atrovent in the inhaler? Also, we always up his inhaled steroids while > ill. > > I hope your little guy is better soon. > > valarie > >> > > > > > > >> > > > > > > I do not know what to think but I have been told by 3 >> immunologists and 3 ENTs >> > > > > > > that it is IMPERATIVE that we do nasal rinses daily to keep >> the overall bacteria >> > > > > > > rates down there fore the tissue can remain more healthy and >> less inflammed >> > > > > > > therefore preventing infections. I would be interested to >> know what others have >> > > > > > > been told because this has been for about the last 6 or 7 >> years that they have >> > > > > > > been pushing them. I am sure that it could change as far as >> the recommendations >> > > > > > > since they have only been used over that period of time. My >> son does have PID >> > > > > > > but this is the info we have at this time to work with. >> > > > > > > >> > > > > > > >> > > > > > > BARBIE >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 my ds8 has CVID and asthma/allergies/reflux. After his CVID diagnosis, Our pedi now starts him on antibiotics as soon as I tell him that his cold has turned into an infection (and I do wait until I am sure)--no more waiting 10 days! so he does the nasal saline, 2 kinds of nose sprays, inhalers...he does not know how to blow his nose, so he gets frequent saline. It is a crime to make your son wait so long! you may need to get the immunologist to write a letter saying that as soon as he...gets a fever, mucus turns thicker, feels worse instead of better, blah-blah, whatever his usual infection symptoms are...he needs antibiotics begun. Maybe that would help. As I'm sure you know, it takes much longer to treat a sinus infection once it sets in so badly. In my experience (myself and 7 kids with asthma), atypical (read cough-variant) asthma kids sometimes do better with atrovent over albuterol or xopenex. My ds needs 2 puffs atrovent and 2 puffs albuterol as his " treatment " when he is experiencing symptoms. ) I also have igg subclass deficiencies, and get frequent sinus infections. we try to throw all the meds and rinses at me to keep the infections away Mindy, in Virginia, mom of seven > > ok...are you on the asthma board with me too? Thought I recognized you. > > Waiting a full ten days might work for " normal " kids, but for kids with > immune problems that might not be such a good idea. I hope you can get > into the immuno soon and hopefully he will write a plan of care to share > with your primary care dr. > > I was wondering about the neb bc for my son, when he is coughing that bad > then xopenex along with atrovent seems to help. I wonder if you could get > atrovent in the inhaler? Also, we always up his inhaled steroids while > ill. > > I hope your little guy is better soon. > > valarie > >> > > > > > > >> > > > > > > I do not know what to think but I have been told by 3 >> immunologists and 3 ENTs >> > > > > > > that it is IMPERATIVE that we do nasal rinses daily to keep >> the overall bacteria >> > > > > > > rates down there fore the tissue can remain more healthy and >> less inflammed >> > > > > > > therefore preventing infections. I would be interested to >> know what others have >> > > > > > > been told because this has been for about the last 6 or 7 >> years that they have >> > > > > > > been pushing them. I am sure that it could change as far as >> the recommendations >> > > > > > > since they have only been used over that period of time. My >> son does have PID >> > > > > > > but this is the info we have at this time to work with. >> > > > > > > >> > > > > > > >> > > > > > > BARBIE >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 What asthma board is this? I'm interested in joining that one as well. Thanks, le mom to: Tristen 5: cvid, asthma, reflux, peanut allergy Kaitlyn 8: healthy Sent from my iPad On Jan 2, 2011, at 1:30 PM, " carriepal " <carriepal@...> wrote: > Thanks Valarie, yes I am on the asthma board too. Immunologist > appointment Tuesday morning. They are closed tomorrow. I'll ask about Atrovent. > > Carol > > > > > > > > > > > > > > > > > > > > I do not know what to think but I have been told by 3 immunologists and 3 ENTs > > > > > > > > > that it is IMPERATIVE that we do nasal rinses daily to keep the overall bacteria > > > > > > > > > rates down there fore the tissue can remain more healthy and less inflammed > > > > > > > > > therefore preventing infections. I would be interested to know what others have > > > > > > > > > been told because this has been for about the last 6 or 7 years that they have > > > > > > > > > been pushing them. I am sure that it could change as far as the recommendations > > > > > > > > > since they have only been used over that period of time. My son does have PID > > > > > > > > > but this is the info we have at this time to work with. > > > > > > > > > > > > > > > > > > > > > > > > > > > BARBIE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 What asthma board is this? I'm interested in joining that one as well. Thanks, le mom to: Tristen 5: cvid, asthma, reflux, peanut allergy Kaitlyn 8: healthy Sent from my iPad On Jan 2, 2011, at 1:30 PM, " carriepal " <carriepal@...> wrote: > Thanks Valarie, yes I am on the asthma board too. Immunologist > appointment Tuesday morning. They are closed tomorrow. I'll ask about Atrovent. > > Carol > > > > > > > > > > > > > > > > > > > > I do not know what to think but I have been told by 3 immunologists and 3 ENTs > > > > > > > > > that it is IMPERATIVE that we do nasal rinses daily to keep the overall bacteria > > > > > > > > > rates down there fore the tissue can remain more healthy and less inflammed > > > > > > > > > therefore preventing infections. I would be interested to know what others have > > > > > > > > > been told because this has been for about the last 6 or 7 years that they have > > > > > > > > > been pushing them. I am sure that it could change as far as the recommendations > > > > > > > > > since they have only been used over that period of time. My son does have PID > > > > > > > > > but this is the info we have at this time to work with. > > > > > > > > > > > > > > > > > > > > > > > > > > > BARBIE > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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