Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 Your right recessive means 25% chance, like you we have two sons with CVID. God Bless, , , 12 yr with CVID, severe steroid dependent asthma, GERD, much more, Cameron 6 yr old with CVID, severe steroid depend. asthma. Rodney 12 yr old, 10 yr old. Re: Question > Hi, > My immunologist told me there is a 10% chance (during lifetime) same for > the next generations and for parent (mom or dad). However I have two > children and both have low IGG and one has also low IGA. > > Nica > > On Fri, 16 Feb 2001 10:01:38 -0600 " sandraray " > writes: > > What are the chances that the new baby will be IgG deficient as well? > > My oldest child is non-PID, so I'm thinking the chances are 50-50. > > Is that about right? > > > > Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., > > asthma, chronic sinusitis, and allergies), and Duncan Avery due > > 5/17/01 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 Traci--Just one point in response--YES, an overall okay IgG level can mask important deficiencies in subclasses. Very important to check them out!! Maurita, mom to Wes sel IgA def, chronic sinusitus, still unbelievably active, , and ________________________________________________________________ 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 May 31, 2001 Report Share Posted May 31, 2001 Traci--Just one point in response--YES, an overall okay IgG level can mask important deficiencies in subclasses. Very important to check them out!! Maurita, mom to Wes sel IgA def, chronic sinusitus, still unbelievably active, , and ________________________________________________________________ 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 May 31, 2001 Report Share Posted May 31, 2001 Traci--Just one point in response--YES, an overall okay IgG level can mask important deficiencies in subclasses. Very important to check them out!! Maurita, mom to Wes sel IgA def, chronic sinusitus, still unbelievably active, , and ________________________________________________________________ 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 June 1, 2001 Report Share Posted June 1, 2001 Thanks Maurita, But why do these doctors refuse to chech her subclasses?-Traci Hayli and Sydni's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Thanks Maurita, But why do these doctors refuse to chech her subclasses?-Traci Hayli and Sydni's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 Not sure if this was sent yet, so here is my question again-thanx traci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 Not getting most mail again but I'll ask a question anyway. has a cold now (fun, fun...still on Omnicef for both ears) -- will Donatussin work for drying up the fluid behind her eardrums as well as the cold symptoms? She hated the Dimetapp Infant and I don't think I'll be able to force that down again. Donatussin is gross too, but she's had it so many times before she can tolerate it. She won't blow her nose and won't allow bulb syringe, so other than steamy baths and meds, is there anything to help with the congestion? She hates it and is crabby and crying all the time because of it. Also complaining about her mouth... ??? Thanks -- (mom to , age 2, polysaccharide antibody def, IgA def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 kelly, when colton has a cold we use J & J vapor bath and pedimist(its a nasal saline in a mist} it seems to be the best nasal spray because they cant even feel it going in their nose. also, sudafed elixir and triaminic nightime i think its the one with tylenol in it. the dr said you can use it during the day it doesnt make colton sleepy those are the ones i like. colton is on zyrtec for maintaince. hope this helps, charlotte mother of brandon 15, jordan 11, and colton cvid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 Maurita, Do you see Dr. Gupta at UCI in Orange county? We see him also. I am mostly a lurker here as I don't have much time to respond, but your post caught my interest. We live in Orange County CA and I have 2 sons with CVID. One of them has an appt on Weds also. Let me know if this is the same Dr. Gupta. I thought I was the only So CA on the list. ( 15 CVID, 9 CVID, 16 allergies) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 Traci--no one has actually refused to check subclasses, just one doc who argued with me, but relented..he was just an allergist/immuno who had worked with our immuno years ago on pid research, but obviously had not kept up with what was discovered! We just happened to be chekcing allergies, and he wanted to recheck the ig levels. We see Dr. Gupta Wednesday. Hopefully he will be of help once again. ' Maurita, mom to Wesley, , ________________________________________________________________ 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 June 5, 2001 Report Share Posted June 5, 2001 , As the mom of a teen with CVID I would like to know how your boys are doing? We live in TX. Have you seen any improvement in health or IGG levels with your older son? Sorry to bug you, but I appreciate any info and hope your boys are doing well. Jan, mom to Ben 13 CVID, SDS, and 10 allergies, asthma Mediscribe@... wrote: > Maurita, > > Do you see Dr. Gupta at UCI in Orange county? We see him also. I am mostly > a lurker here as I don't have much time to respond, but your post caught my > interest. > We live in Orange County CA and I have 2 sons with CVID. One of them has an > appt on Weds also. > > Let me know if this is the same Dr. Gupta. I thought I was the only So CA on > the list. > > ( 15 CVID, 9 CVID, 16 allergies) > > 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 June 7, 2001 Report Share Posted June 7, 2001 --yes! I'm sure it's the same--Sudhir Gupta--i thought i was the only one in So Ca, too! I'm in Fullerton, how about you? I was very encouraged by the visit with dr. Gupta. He said to keep an annual eye on Wesley's IgG levels, they did not currently warrant IVIG consideration, but that may indeed change. He could not comment on if they had dropped, as the original labwork was done at a different lab, as we all knwo, you cannot compare. He also said that Selective IgA def. simply means that is the only problem with the immune system, no other parts affected, it did not mean that he has no iga (but he has none, i'm not sure how i got mixed up, i was so sure he meant -on the last visit- that designation referred to his complete lack of it--oh, welll, just semantics). For me, he ran a bunch more tests to screen autoimmune stuff. I'll get the results next wed. He said, even if i do have an autoim. thing, a pregnancy would not accelerate its development, could, in fact, slow down its development. That was the first green light i was looking for, and so relieved to find it. He also has his specialty in OB, and was humbly offended that my ob's thought he would have no such knowlege, and said he has taken a number of women w/pid's thru pregnancy, and that IVIG had helped quite a few women with miscarriage histories similar to mine. His wife is a practicing OB, and she also heads up the IVIG infusion center at UCI hospital, in Orange. So i may consider her for my care should we conceive again....no problem in getting her to consult with my immuno, eh? He declined my request to be my OB dr, too.... Wesley has LOOKED awful for a few days, and had a really awful day behaviorally today....i keep looking for clear symptoms...he is terrible at articulating how he feels physically. Any ideas on how i can teach him to be alert to things like sore throat, headache, achiness? These are usually my first symptoms...any one else's pumpkins have other subtle initial symptoms? Most of you seem to see big dramatic ones. One last thing--sorrythis is so long--Dr. Gupta said that there is nothing that boosts antibody production. The problem with probiotics, HSO's, etc, is that the " healthy " bacteria become pathogenic in PID people. So either way, that stuff is dangerous. Glad to know! Maurita, mom to Wesley, 6, iga def, , 5, 2, and is potty training himself! Whoopeee!!!!!!!!! ________________________________________________________________ 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 July 14, 2001 Report Share Posted July 14, 2001 Just a question I have not been able to clarify. I have heard both ways thay hypo and dysgamm are the same as CVID and the hypo and dys are separate immune disorders. Anything in writing anywhere? My immuno says that you have to wait and see if it is CVID. Based on whether they get the autoimmune concerns. Lucas has hypogamm and dysgamm and initally no IgA and now a low IgM which makes me think that he is possibly CVID he also has bowel problems that get much better with prednisone when we treat his moderately severe asthma. I know it is still wait and see and does not really matter but I am interested. Barbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Just a question I have not been able to clarify. I have heard both ways thay hypo and dysgamm are the same as CVID and the hypo and dys are separate immune disorders. Anything in writing anywhere? My immuno says that you have to wait and see if it is CVID. Based on whether they get the autoimmune concerns. Lucas has hypogamm and dysgamm and initally no IgA and now a low IgM which makes me think that he is possibly CVID he also has bowel problems that get much better with prednisone when we treat his moderately severe asthma. I know it is still wait and see and does not really matter but I am interested. Barbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2001 Report Share Posted September 29, 2001 : Don't know for sure but I would guess they mean Selective IgA -- only because I was told you sometimes see someone else in the family line with Selective IgA when there's a CVID patient. Hope that helps, but it's just a guess. OH!!! But my next question would be, who told them that? Because when they did the first tests for her ped didn't really understand them, and he told us Selected IgA def, even though all numbers were low (he just didn't know any better). Then further testing by immuno found all sorts of problems, CVID, antibody problems, etc. Then after she turned two yrs old some numbers came up, hence the " latest " diagnosis in my signature. It's always complicated, isn't it. (mom to , age 2-1/2, polysaccharide antibody def, IgA def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2001 Report Share Posted September 29, 2001 : Don't know for sure but I would guess they mean Selective IgA -- only because I was told you sometimes see someone else in the family line with Selective IgA when there's a CVID patient. Hope that helps, but it's just a guess. OH!!! But my next question would be, who told them that? Because when they did the first tests for her ped didn't really understand them, and he told us Selected IgA def, even though all numbers were low (he just didn't know any better). Then further testing by immuno found all sorts of problems, CVID, antibody problems, etc. Then after she turned two yrs old some numbers came up, hence the " latest " diagnosis in my signature. It's always complicated, isn't it. (mom to , age 2-1/2, polysaccharide antibody def, IgA def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2001 Report Share Posted September 29, 2001 : Don't know for sure but I would guess they mean Selective IgA -- only because I was told you sometimes see someone else in the family line with Selective IgA when there's a CVID patient. Hope that helps, but it's just a guess. OH!!! But my next question would be, who told them that? Because when they did the first tests for her ped didn't really understand them, and he told us Selected IgA def, even though all numbers were low (he just didn't know any better). Then further testing by immuno found all sorts of problems, CVID, antibody problems, etc. Then after she turned two yrs old some numbers came up, hence the " latest " diagnosis in my signature. It's always complicated, isn't it. (mom to , age 2-1/2, polysaccharide antibody def, IgA def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2001 Report Share Posted September 29, 2001 - selective would just usually mean that the deficiency is limited to only one immune area. Either just an IgG or just an IgA or just an antibody problem. There is a PID called Selective antibody deficiency because usually the antibodies don't respond to vaccination but the patient could have normal IgG levels. Did they say which area is deficient? Selective to me would mean it's just limited to that one area. Many CVID patients have family members with IgA deficiency. Macey has CVID and I've been diagnosed with a complement deficiency. Both are different parts of the immune process but somehow they think it's related. What type of treatment have they suggested for your niece? -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ http://groups.yahoo.com/group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2001 Report Share Posted September 29, 2001 - selective would just usually mean that the deficiency is limited to only one immune area. Either just an IgG or just an IgA or just an antibody problem. There is a PID called Selective antibody deficiency because usually the antibodies don't respond to vaccination but the patient could have normal IgG levels. Did they say which area is deficient? Selective to me would mean it's just limited to that one area. Many CVID patients have family members with IgA deficiency. Macey has CVID and I've been diagnosed with a complement deficiency. Both are different parts of the immune process but somehow they think it's related. What type of treatment have they suggested for your niece? -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ http://groups.yahoo.com/group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2001 Report Share Posted September 29, 2001 ursula she told me that they told her something to this affect that her body could take care of protein but not sugar coated, i belive that is what she said, but i will find out more this week, they are going to try to trick a response from her..whatever that means..they have her on preventative antibiotics, she also has asthma and are treating her for that as well..thanks for all the info karen --- uahollem@... wrote: > - selective would just usually mean that the > deficiency is limited to only one immune area. > Either > > http://groups.yahoo.com/group/PedPID > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2001 Report Share Posted September 29, 2001 ursula she told me that they told her something to this affect that her body could take care of protein but not sugar coated, i belive that is what she said, but i will find out more this week, they are going to try to trick a response from her..whatever that means..they have her on preventative antibiotics, she also has asthma and are treating her for that as well..thanks for all the info karen --- uahollem@... wrote: > - selective would just usually mean that the > deficiency is limited to only one immune area. > Either > > http://groups.yahoo.com/group/PedPID > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Sounds like a polysacchride antibody deficiency. The " trick " would probably be the new Prevnar vaccination which is conjugated and is known to try to trick the IgM to switch to the IgG antibody which tends not to happen with antibody deficiency. Good luck -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ http://groups.yahoo.com/group/PedPI D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Sounds like a polysacchride antibody deficiency. The " trick " would probably be the new Prevnar vaccination which is conjugated and is known to try to trick the IgM to switch to the IgG antibody which tends not to happen with antibody deficiency. Good luck -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ http://groups.yahoo.com/group/PedPI D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 's doctors have told me that his " immune system is full > of holes--it picks and chooses what will work and what won't work with no > real pattern to it " . Some of his antibodies work, others don't--both with > polysaccharide and proteins. There seems to be no rhyme or reason to how > his sub-class numbers come out--sometimes it's low in 1 and 4, sometimes > it's 1 and 3, and the last time it was 1 and 2. Same with his IgG's and > IgM's, These numbers have a large fluctuation to them--except the IgG's > while on IVIG. > > Just my .02. > > -mom to , 8, dysgammalgobulinemia, etc; ,10; ,3. > , I am considering sending your e-mail on to our ped. The " hole in the immune system " theory seems to sound exactly like Autumn. She'll mount partial responses with both b & t cell tests; her IgG #'s fluctuate, especially between subclasses 1,2, & 4; she's sick all the time, but not always for the same reason. In this respect, she sounds just like . The only difference is that Autumn is not considered an IVIG candidate. Do your docs have any research (other than anecdotes) to back up their theory? Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG Def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 5 months Quote Link to comment Share on other sites More sharing options...
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