Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Hi Maurita, From having two kids with longstanding sinus infections both requiring surgery as well as living through mold and living in the mold capital of the world . (The Pacific Northwest). Our docs strongly discourage any decongestants because of their drying properties. Our docs proclaim that when sinuses get dry they become irritated and inflamed and can increase the chance of an infection invading the tissue.They strongly urge nasal rinses and even Gentymycin rinses to keep the sinuses clear and moist . They also suggest nasocort or one of the other steroid topical sprays. Probably old info for you. There is also a spray called grape fruit seed extract that is a naturl antx that can work well to keep the sinus flora clear. It is not ingested but used in the nose like saline. Also Ursula has anyone suggest Cranactin a concentrated cranberry capsule to keep the urine acid. It has been shown to help decrease the incidence of kidney infections. Our urologist gave it to my daughter before her kidney reflux repair. has a duplicate renal system with basically 3 kidneys and 3 ureters. They did reimplantation when she was seven after several infections. She was back to school in less than 2 weeks. Much easier recovery for a child than an adult. Happy to share our experience. We will be doing another workup for in a couple of weeks for PID since she has not been tested since she was 7. She has all of the classic symptoms but since she and Lucas are not biologically related it all seems rather odd. Our ped is thinking something to do with the mold exposure. I will let you know what happens. BARBIE Lucas PID, ???? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Hi Maurita, From having two kids with longstanding sinus infections both requiring surgery as well as living through mold and living in the mold capital of the world . (The Pacific Northwest). Our docs strongly discourage any decongestants because of their drying properties. Our docs proclaim that when sinuses get dry they become irritated and inflamed and can increase the chance of an infection invading the tissue.They strongly urge nasal rinses and even Gentymycin rinses to keep the sinuses clear and moist . They also suggest nasocort or one of the other steroid topical sprays. Probably old info for you. There is also a spray called grape fruit seed extract that is a naturl antx that can work well to keep the sinus flora clear. It is not ingested but used in the nose like saline. Also Ursula has anyone suggest Cranactin a concentrated cranberry capsule to keep the urine acid. It has been shown to help decrease the incidence of kidney infections. Our urologist gave it to my daughter before her kidney reflux repair. has a duplicate renal system with basically 3 kidneys and 3 ureters. They did reimplantation when she was seven after several infections. She was back to school in less than 2 weeks. Much easier recovery for a child than an adult. Happy to share our experience. We will be doing another workup for in a couple of weeks for PID since she has not been tested since she was 7. She has all of the classic symptoms but since she and Lucas are not biologically related it all seems rather odd. Our ped is thinking something to do with the mold exposure. I will let you know what happens. BARBIE Lucas PID, ???? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Hi Maurita, From having two kids with longstanding sinus infections both requiring surgery as well as living through mold and living in the mold capital of the world . (The Pacific Northwest). Our docs strongly discourage any decongestants because of their drying properties. Our docs proclaim that when sinuses get dry they become irritated and inflamed and can increase the chance of an infection invading the tissue.They strongly urge nasal rinses and even Gentymycin rinses to keep the sinuses clear and moist . They also suggest nasocort or one of the other steroid topical sprays. Probably old info for you. There is also a spray called grape fruit seed extract that is a naturl antx that can work well to keep the sinus flora clear. It is not ingested but used in the nose like saline. Also Ursula has anyone suggest Cranactin a concentrated cranberry capsule to keep the urine acid. It has been shown to help decrease the incidence of kidney infections. Our urologist gave it to my daughter before her kidney reflux repair. has a duplicate renal system with basically 3 kidneys and 3 ureters. They did reimplantation when she was seven after several infections. She was back to school in less than 2 weeks. Much easier recovery for a child than an adult. Happy to share our experience. We will be doing another workup for in a couple of weeks for PID since she has not been tested since she was 7. She has all of the classic symptoms but since she and Lucas are not biologically related it all seems rather odd. Our ped is thinking something to do with the mold exposure. I will let you know what happens. BARBIE Lucas PID, ???? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 In the past many urologists used a medication calles Urase. But I have noticed more recently the use of cranactin. It is at the health food stores and is the active ingredient in cranberry juice that prevents the infections. My understanding is that it changes the acidity as part of the reason that it works but the rest they are not sure why. Fortunately has only had one UTI since her surgery 3 years ago. I need to have her followup but have not gotten around to it between the rest of our lives. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 In the past many urologists used a medication calles Urase. But I have noticed more recently the use of cranactin. It is at the health food stores and is the active ingredient in cranberry juice that prevents the infections. My understanding is that it changes the acidity as part of the reason that it works but the rest they are not sure why. Fortunately has only had one UTI since her surgery 3 years ago. I need to have her followup but have not gotten around to it between the rest of our lives. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Hi! We went to the allergist this am, and he is re-testing Wesley and 's ig levels, i had to ask about subclasses, and he acted like that was an " old school " way to test....but he agreed to do it anyway, but would not test the iga subclasses...he assured me only very specialized labs do that, i'm quite sure he is wrong about those things, so if 's iga is a little low, i will call our immunologist and ask him to test iga subclasses...for me, that was an important distinction. He also ordered the immunocap allergy blood test, but told me it's only about 50% accurate....but felt it was a reasonable request. He praised me for learning so much about all this, but assured me that my internet info was outdated.....i did not argue with him, but i thought, what i'm hearing from my friends is straight from the best immuno's in the nation/world, and though he is also an immunologist, it sounds to me like he has been outside the pid loop for quite a few years...Anywya, we will hopefully get some helpful info from the blood tests. The boys are now taking Duradryl, it's a super-duper dry-it-up syrup (also comes in pill form), it has an antihistamine, decongestant, adn several other things, which i don't knwo whtat are, but it is the most effective thing they've ever taken for relieving congestion and that awful post nasal drip. The ? remains, however, if there is any residual infection, makes me a bit nervous to just ignore that ?....I dont' wnat a long term infection just festering and leading to other more serious problems....Any one have any words of wisdom for me? Today is my husband's birthday, so i must run and get things ready! Hope you are all holding up well in the ongoing struggles. Warmly, Maurita ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Hi! We went to the allergist this am, and he is re-testing Wesley and 's ig levels, i had to ask about subclasses, and he acted like that was an " old school " way to test....but he agreed to do it anyway, but would not test the iga subclasses...he assured me only very specialized labs do that, i'm quite sure he is wrong about those things, so if 's iga is a little low, i will call our immunologist and ask him to test iga subclasses...for me, that was an important distinction. He also ordered the immunocap allergy blood test, but told me it's only about 50% accurate....but felt it was a reasonable request. He praised me for learning so much about all this, but assured me that my internet info was outdated.....i did not argue with him, but i thought, what i'm hearing from my friends is straight from the best immuno's in the nation/world, and though he is also an immunologist, it sounds to me like he has been outside the pid loop for quite a few years...Anywya, we will hopefully get some helpful info from the blood tests. The boys are now taking Duradryl, it's a super-duper dry-it-up syrup (also comes in pill form), it has an antihistamine, decongestant, adn several other things, which i don't knwo whtat are, but it is the most effective thing they've ever taken for relieving congestion and that awful post nasal drip. The ? remains, however, if there is any residual infection, makes me a bit nervous to just ignore that ?....I dont' wnat a long term infection just festering and leading to other more serious problems....Any one have any words of wisdom for me? Today is my husband's birthday, so i must run and get things ready! Hope you are all holding up well in the ongoing struggles. Warmly, Maurita ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Hi! We went to the allergist this am, and he is re-testing Wesley and 's ig levels, i had to ask about subclasses, and he acted like that was an " old school " way to test....but he agreed to do it anyway, but would not test the iga subclasses...he assured me only very specialized labs do that, i'm quite sure he is wrong about those things, so if 's iga is a little low, i will call our immunologist and ask him to test iga subclasses...for me, that was an important distinction. He also ordered the immunocap allergy blood test, but told me it's only about 50% accurate....but felt it was a reasonable request. He praised me for learning so much about all this, but assured me that my internet info was outdated.....i did not argue with him, but i thought, what i'm hearing from my friends is straight from the best immuno's in the nation/world, and though he is also an immunologist, it sounds to me like he has been outside the pid loop for quite a few years...Anywya, we will hopefully get some helpful info from the blood tests. The boys are now taking Duradryl, it's a super-duper dry-it-up syrup (also comes in pill form), it has an antihistamine, decongestant, adn several other things, which i don't knwo whtat are, but it is the most effective thing they've ever taken for relieving congestion and that awful post nasal drip. The ? remains, however, if there is any residual infection, makes me a bit nervous to just ignore that ?....I dont' wnat a long term infection just festering and leading to other more serious problems....Any one have any words of wisdom for me? Today is my husband's birthday, so i must run and get things ready! Hope you are all holding up well in the ongoing struggles. Warmly, Maurita ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Maurita, I anticipate hearing the results of and Wesleys latest tests-- are you expecting the IgG's to be out of range? Can you explain to me what the immunocap allergy blood test is? And Happy Birthday to your husband! I hope all is going well in your pregnancy, Take care, , and s mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Maurita, I anticipate hearing the results of and Wesleys latest tests-- are you expecting the IgG's to be out of range? Can you explain to me what the immunocap allergy blood test is? And Happy Birthday to your husband! I hope all is going well in your pregnancy, Take care, , and s mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Maurita, I anticipate hearing the results of and Wesleys latest tests-- are you expecting the IgG's to be out of range? Can you explain to me what the immunocap allergy blood test is? And Happy Birthday to your husband! I hope all is going well in your pregnancy, Take care, , and s mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Maurita - I've never heard of IgA subclasses. Do you know where I can find out more information on it? Macey's ped is the only one who still checks her IgG subclasses, Duke and the local immunologist really aren't too interested. Ursula - Macey's mom (5 yr old with CVID) http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Maurita - I've never heard of IgA subclasses. Do you know where I can find out more information on it? Macey's ped is the only one who still checks her IgG subclasses, Duke and the local immunologist really aren't too interested. Ursula - Macey's mom (5 yr old with CVID) http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Barbie - is the urine acid measured as the ph in her UA tests? I've never heard of the Cranactin but I have constant UTI's so it might be beneficial to me. I feel like I swim in cranberry juice most of the time. Ursula - Macey's mom (5 yr old with CVID) http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Barbie - is the urine acid measured as the ph in her UA tests? I've never heard of the Cranactin but I have constant UTI's so it might be beneficial to me. I feel like I swim in cranberry juice most of the time. Ursula - Macey's mom (5 yr old with CVID) http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Ursula, Not sure if this will help you or not but was just checked last week for IgA subclasses (also referred to as subsets). They were drawn from a Children's Hospital and were a " send out " . The subsets are IgA 1 and IgA 2...Hope this helps. Autumn (Mom to Mark Cd5-Cd19 PID and ) Re: New Allergy blood test available > Maurita - I've never heard of IgA subclasses. Do you know where I can find > out more information on it? Macey's ped is the only one who still checks > her IgG subclasses, Duke and the local immunologist really aren't too > interested. > > > Ursula - Macey's mom (5 yr old with CVID) > http://home.att.net/~maceyh > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Ursula, Not sure if this will help you or not but was just checked last week for IgA subclasses (also referred to as subsets). They were drawn from a Children's Hospital and were a " send out " . The subsets are IgA 1 and IgA 2...Hope this helps. Autumn (Mom to Mark Cd5-Cd19 PID and ) Re: New Allergy blood test available > Maurita - I've never heard of IgA subclasses. Do you know where I can find > out more information on it? Macey's ped is the only one who still checks > her IgG subclasses, Duke and the local immunologist really aren't too > interested. > > > Ursula - Macey's mom (5 yr old with CVID) > http://home.att.net/~maceyh > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 thanks. no info found yet but i'll get back to it this weekend. Ursula - Macey's mom (5 yr old with CVID) http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 thanks. no info found yet but i'll get back to it this weekend. Ursula - Macey's mom (5 yr old with CVID) http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 thanks. no info found yet but i'll get back to it this weekend. Ursula - Macey's mom (5 yr old with CVID) http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 IVIG is of no use to Iga deficiency, either subclass. It is produced in the mucosa, and is useful only there, but some of it goes to the blood. It never goes from blood to mucosa, though, and for those with NO iga (Selective IgA def), as many of you well know, it can throw the pt. into anaphylactic shock, so great discretion must be used in determining the need for it. Poeple with only iga def do not get IVIG. Maurita ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 IVIG is of no use to Iga deficiency, either subclass. It is produced in the mucosa, and is useful only there, but some of it goes to the blood. It never goes from blood to mucosa, though, and for those with NO iga (Selective IgA def), as many of you well know, it can throw the pt. into anaphylactic shock, so great discretion must be used in determining the need for it. Poeple with only iga def do not get IVIG. Maurita ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 IVIG is of no use to Iga deficiency, either subclass. It is produced in the mucosa, and is useful only there, but some of it goes to the blood. It never goes from blood to mucosa, though, and for those with NO iga (Selective IgA def), as many of you well know, it can throw the pt. into anaphylactic shock, so great discretion must be used in determining the need for it. Poeple with only iga def do not get IVIG. Maurita ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 Maurita, We never had any subclasses checked until recently and I am still waiting for the results. In terms of intelligence that is very interesting. Grace is and always has been gifted. Caelan is also very smart and somewhat advanced for his age. Weird. Grace Caroline 8/14/97 Caelan 8/26/99 Quote Link to comment Share on other sites More sharing options...
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