Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 I am in Baton Rouge, La. I found a ped. immuno. at the New Orleans Children's Hospital thru the Moddell foundation website- is this related to the IDF? I will check with the IDF on the doctor I found anyway. Thanks for the info. I am learning so much from reading all the postings from this group. Re: Next Step? >Dear , > >You asked, " what should I do next? " One of the best things you can do >is find a group like this to talk, talk, talk. Every kid is different, >but this condition is rare and hard to find information on. 2nd thing >is to get in contact with the Immune Deficiency Foundation. Their toll >free number is 1-. They will send you educational >information that will help you and your doctors understand PIDS better. >Or if you want to let us know what state you are in, I can check and see >if you have a local chapter of IDF. Should you see an immunologist? >Yes, absolutely! But, it is not easy to find an immunologist who is >current on PID. So, I recommend calling the IDF or local IDF leader to >find out their recommendation for immunologists in your area who are >up-to-date and interested in PIDs. You need to know that many families >end up driving out of state to find a doctor who knows enough about PID >to treat it. Thankfully, that is changing, but it is vitally important >to be followed by someone who can guide your pediatrician through >this. We only see our immunologist once a year and last year skipped >it. Others see their immunologist a lot more often! > >You've already gotten the proper blood work and tests done that diagnose >PID, now you need to find a plan that will stabilize and get him >the optimal health. Many of our kids find that nice plateau that once >we adjust to it -- seems quite normal! > >I don't think you are at a cross roads -- you are at the starting line >-- and the gun has already sounded. Now it's up to you and your husband >to run with it! It will be overwhelming at times, but you really have >no choice but to run with all your might. Hopefully, is just slow >in developing his immune system and this will be a chapter in his book >you can just look back on and smile -- but, for now, it's there and has >to be dealt with. > >God bless you in your journey and welcome to the group. > >In His service, >Dale > > > J. Jennings " wrote: >> >> Thanks for the warm welcome to PedPID. I'm excited about finding others open to sharing their experience and knowledge in dealing with immune deficiency. >> >> I have 2 kids- 5 yr old and 2 1/2 yr old . is the picture of health, but has been sick for 8 months now. >> >> We are at a crossroads at this point. We aren't sure if we should take the next step of seeing an immunologist. >> >> has had constant sinus infections since 8/00, and has had 2 sinus surgeries. The first one in 11/00 his adenoids were removed and his sinuses flushed, and the 2nd time in 2/01 he only had his sinuses flushed. Blood work shows he is IGA, IGG, and IGM deficient (though not severely) and his Streptococcus pneumoniae antibodies are on the low end. Allergy testing was inconclusive. He also received a Pneumococcal Conjugate vaccine. >> >> >From his symptoms, we think he will need another sinus flushing soon. He is currently on an antibiotic, zyrtec, flonase, and Panmist-S (decongestant), but he is NOT getting better. I desperately want my wild little boy back! >> >> Therefore, should we see an immunologist next? We have been told by our ENT and Pediatrician that will just have to grow out of his immune deficiency and it is not necessary to see anyone else. My gut tells me we need another opinion, but I'm not sure who to go to next. Our ENT is very much against IVIG treatments, and our Pediatrician hasn't even mentioned the need to see an immunologist. We just want our little boy to get well. >> >> Thanks, >> >> Jennings >> >> This is not an acceptable aAnd if so, what a >> We are hesitant in seeing an immunologist because our ENT is totally against the idea, and he is someone we trust (he treats myself and my husband also). We need a referral from our pediatrician, >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 from Dale, Mom to Katy, CVID, age 16 Dear , No the Modell Foundation is not associated with the IDF. You have a wonderful IDF Chapter leader in Shreveport. Her name is Gail , she's an RN and a patient. Her phone is or her e-mail is GaandSBN@... I got to meet her and her husband in December and they were so gracious. Give her a call or e-mail her and tell her hello for me! I'm glad you've found an immunologist. We'll keep praying that your little one outgrows this mess. But, if not, you'll be armed and ready to fight! When Katy first became ill, we were paralyzed by fear and really didn't pursue everything we should have. It took us almost a year to get off our duffs and get busy. We were just totally shocked that she could be a competing gymnast one year and be totally incapacitated so quickly. We just didn't want to believe what our eyes told us especially since her doctor didn't think it was anything to concern ourselves about. I firmly believe she would have died within a year if we had not taken action. Also, you'll learn from this group that one of the major dangers comes not from CVID, but from scars and injury from repeated infections. Anything you can do to prevent repeated infections is to your advantage. God bless you as you continue to gather information and educate yourself. If you call Gail or IDF main office (1-), they will send you a LOT of information -- ask for the works! It's also all on line at www.primaryimmune.org In His service, Dale J. Jennings " wrote: > > I am in Baton Rouge, La. I found a ped. immuno. at the New Orleans > Children's Hospital thru the Moddell foundation website- is this > related to the IDF? I will check with the IDF on the doctor I found anyway. > > Thanks for the info. I am learning so much from reading all the postings > from this group. > > > Re: Next Step? > > >Dear , > > > >You asked, " what should I do next? " One of the best things you can do > >is find a group like this to talk, talk, talk. Every kid is different, > >but this condition is rare and hard to find information on. 2nd thing > >is to get in contact with the Immune Deficiency Foundation. Their toll > >free number is 1-. They will send you educational > >information that will help you and your doctors understand PIDS better. > >Or if you want to let us know what state you are in, I can check and see > >if you have a local chapter of IDF. Should you see an immunologist? > >Yes, absolutely! But, it is not easy to find an immunologist who is > >current on PID. So, I recommend calling the IDF or local IDF leader to > >find out their recommendation for immunologists in your area who are > >up-to-date and interested in PIDs. You need to know that many families > >end up driving out of state to find a doctor who knows enough about PID > >to treat it. Thankfully, that is changing, but it is vitally important > >to be followed by someone who can guide your pediatrician through > >this. We only see our immunologist once a year and last year skipped > >it. Others see their immunologist a lot more often! > > > >You've already gotten the proper blood work and tests done that diagnose > >PID, now you need to find a plan that will stabilize and get him > >the optimal health. Many of our kids find that nice plateau that once > >we adjust to it -- seems quite normal! > > > >I don't think you are at a cross roads -- you are at the starting line > >-- and the gun has already sounded. Now it's up to you and your husband > >to run with it! It will be overwhelming at times, but you really have > >no choice but to run with all your might. Hopefully, is just slow > >in developing his immune system and this will be a chapter in his book > >you can just look back on and smile -- but, for now, it's there and has > >to be dealt with. > > > >God bless you in your journey and welcome to the group. > > > >In His service, > >Dale > > > > > > J. Jennings " wrote: > >> > >> Thanks for the warm welcome to PedPID. I'm excited about finding others > open to sharing their experience and knowledge in dealing with immune > deficiency. > >> > >> I have 2 kids- 5 yr old and 2 1/2 yr old . is the > picture of health, but has been sick for 8 months now. > >> > >> We are at a crossroads at this point. We aren't sure if we should take > the next step of seeing an immunologist. > >> > >> has had constant sinus infections since 8/00, and has had 2 sinus > surgeries. The first one in 11/00 his adenoids were removed and his sinuses > flushed, and the 2nd time in 2/01 he only had his sinuses flushed. Blood > work shows he is IGA, IGG, and IGM deficient (though not severely) and his > Streptococcus pneumoniae antibodies are on the low end. Allergy testing was > inconclusive. He also received a Pneumococcal Conjugate vaccine. > >> > >> >From his symptoms, we think he will need another sinus flushing soon. > He is currently on an antibiotic, zyrtec, flonase, and Panmist-S > (decongestant), but he is NOT getting better. I desperately want my wild > little boy back! > >> > >> Therefore, should we see an immunologist next? We have been told by our > ENT and Pediatrician that will just have to grow out of his immune > deficiency and it is not necessary to see anyone else. My gut tells me we > need another opinion, but I'm not sure who to go to next. Our ENT is very > much against IVIG treatments, and our Pediatrician hasn't even mentioned the > need to see an immunologist. We just want our little boy to get well. > >> > >> Thanks, > >> > >> Jennings > >> > >> This is not an acceptable aAnd if so, what a > >> We are hesitant in seeing an immunologist because our ENT is totally > against the idea, and he is someone we trust (he treats myself and my > husband also). We need a referral from our pediatrician, > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 from Dale, Mom to Katy, CVID, age 16 Dear , No the Modell Foundation is not associated with the IDF. You have a wonderful IDF Chapter leader in Shreveport. Her name is Gail , she's an RN and a patient. Her phone is or her e-mail is GaandSBN@... I got to meet her and her husband in December and they were so gracious. Give her a call or e-mail her and tell her hello for me! I'm glad you've found an immunologist. We'll keep praying that your little one outgrows this mess. But, if not, you'll be armed and ready to fight! When Katy first became ill, we were paralyzed by fear and really didn't pursue everything we should have. It took us almost a year to get off our duffs and get busy. We were just totally shocked that she could be a competing gymnast one year and be totally incapacitated so quickly. We just didn't want to believe what our eyes told us especially since her doctor didn't think it was anything to concern ourselves about. I firmly believe she would have died within a year if we had not taken action. Also, you'll learn from this group that one of the major dangers comes not from CVID, but from scars and injury from repeated infections. Anything you can do to prevent repeated infections is to your advantage. God bless you as you continue to gather information and educate yourself. If you call Gail or IDF main office (1-), they will send you a LOT of information -- ask for the works! It's also all on line at www.primaryimmune.org In His service, Dale J. Jennings " wrote: > > I am in Baton Rouge, La. I found a ped. immuno. at the New Orleans > Children's Hospital thru the Moddell foundation website- is this > related to the IDF? I will check with the IDF on the doctor I found anyway. > > Thanks for the info. I am learning so much from reading all the postings > from this group. > > > Re: Next Step? > > >Dear , > > > >You asked, " what should I do next? " One of the best things you can do > >is find a group like this to talk, talk, talk. Every kid is different, > >but this condition is rare and hard to find information on. 2nd thing > >is to get in contact with the Immune Deficiency Foundation. Their toll > >free number is 1-. They will send you educational > >information that will help you and your doctors understand PIDS better. > >Or if you want to let us know what state you are in, I can check and see > >if you have a local chapter of IDF. Should you see an immunologist? > >Yes, absolutely! But, it is not easy to find an immunologist who is > >current on PID. So, I recommend calling the IDF or local IDF leader to > >find out their recommendation for immunologists in your area who are > >up-to-date and interested in PIDs. You need to know that many families > >end up driving out of state to find a doctor who knows enough about PID > >to treat it. Thankfully, that is changing, but it is vitally important > >to be followed by someone who can guide your pediatrician through > >this. We only see our immunologist once a year and last year skipped > >it. Others see their immunologist a lot more often! > > > >You've already gotten the proper blood work and tests done that diagnose > >PID, now you need to find a plan that will stabilize and get him > >the optimal health. Many of our kids find that nice plateau that once > >we adjust to it -- seems quite normal! > > > >I don't think you are at a cross roads -- you are at the starting line > >-- and the gun has already sounded. Now it's up to you and your husband > >to run with it! It will be overwhelming at times, but you really have > >no choice but to run with all your might. Hopefully, is just slow > >in developing his immune system and this will be a chapter in his book > >you can just look back on and smile -- but, for now, it's there and has > >to be dealt with. > > > >God bless you in your journey and welcome to the group. > > > >In His service, > >Dale > > > > > > J. Jennings " wrote: > >> > >> Thanks for the warm welcome to PedPID. I'm excited about finding others > open to sharing their experience and knowledge in dealing with immune > deficiency. > >> > >> I have 2 kids- 5 yr old and 2 1/2 yr old . is the > picture of health, but has been sick for 8 months now. > >> > >> We are at a crossroads at this point. We aren't sure if we should take > the next step of seeing an immunologist. > >> > >> has had constant sinus infections since 8/00, and has had 2 sinus > surgeries. The first one in 11/00 his adenoids were removed and his sinuses > flushed, and the 2nd time in 2/01 he only had his sinuses flushed. Blood > work shows he is IGA, IGG, and IGM deficient (though not severely) and his > Streptococcus pneumoniae antibodies are on the low end. Allergy testing was > inconclusive. He also received a Pneumococcal Conjugate vaccine. > >> > >> >From his symptoms, we think he will need another sinus flushing soon. > He is currently on an antibiotic, zyrtec, flonase, and Panmist-S > (decongestant), but he is NOT getting better. I desperately want my wild > little boy back! > >> > >> Therefore, should we see an immunologist next? We have been told by our > ENT and Pediatrician that will just have to grow out of his immune > deficiency and it is not necessary to see anyone else. My gut tells me we > need another opinion, but I'm not sure who to go to next. Our ENT is very > much against IVIG treatments, and our Pediatrician hasn't even mentioned the > need to see an immunologist. We just want our little boy to get well. > >> > >> Thanks, > >> > >> Jennings > >> > >> This is not an acceptable aAnd if so, what a > >> We are hesitant in seeing an immunologist because our ENT is totally > against the idea, and he is someone we trust (he treats myself and my > husband also). We need a referral from our pediatrician, > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 from Dale, Mom to Katy, CVID, age 16 Dear , No the Modell Foundation is not associated with the IDF. You have a wonderful IDF Chapter leader in Shreveport. Her name is Gail , she's an RN and a patient. Her phone is or her e-mail is GaandSBN@... I got to meet her and her husband in December and they were so gracious. Give her a call or e-mail her and tell her hello for me! I'm glad you've found an immunologist. We'll keep praying that your little one outgrows this mess. But, if not, you'll be armed and ready to fight! When Katy first became ill, we were paralyzed by fear and really didn't pursue everything we should have. It took us almost a year to get off our duffs and get busy. We were just totally shocked that she could be a competing gymnast one year and be totally incapacitated so quickly. We just didn't want to believe what our eyes told us especially since her doctor didn't think it was anything to concern ourselves about. I firmly believe she would have died within a year if we had not taken action. Also, you'll learn from this group that one of the major dangers comes not from CVID, but from scars and injury from repeated infections. Anything you can do to prevent repeated infections is to your advantage. God bless you as you continue to gather information and educate yourself. If you call Gail or IDF main office (1-), they will send you a LOT of information -- ask for the works! It's also all on line at www.primaryimmune.org In His service, Dale J. Jennings " wrote: > > I am in Baton Rouge, La. I found a ped. immuno. at the New Orleans > Children's Hospital thru the Moddell foundation website- is this > related to the IDF? I will check with the IDF on the doctor I found anyway. > > Thanks for the info. I am learning so much from reading all the postings > from this group. > > > Re: Next Step? > > >Dear , > > > >You asked, " what should I do next? " One of the best things you can do > >is find a group like this to talk, talk, talk. Every kid is different, > >but this condition is rare and hard to find information on. 2nd thing > >is to get in contact with the Immune Deficiency Foundation. Their toll > >free number is 1-. They will send you educational > >information that will help you and your doctors understand PIDS better. > >Or if you want to let us know what state you are in, I can check and see > >if you have a local chapter of IDF. Should you see an immunologist? > >Yes, absolutely! But, it is not easy to find an immunologist who is > >current on PID. So, I recommend calling the IDF or local IDF leader to > >find out their recommendation for immunologists in your area who are > >up-to-date and interested in PIDs. You need to know that many families > >end up driving out of state to find a doctor who knows enough about PID > >to treat it. Thankfully, that is changing, but it is vitally important > >to be followed by someone who can guide your pediatrician through > >this. We only see our immunologist once a year and last year skipped > >it. Others see their immunologist a lot more often! > > > >You've already gotten the proper blood work and tests done that diagnose > >PID, now you need to find a plan that will stabilize and get him > >the optimal health. Many of our kids find that nice plateau that once > >we adjust to it -- seems quite normal! > > > >I don't think you are at a cross roads -- you are at the starting line > >-- and the gun has already sounded. Now it's up to you and your husband > >to run with it! It will be overwhelming at times, but you really have > >no choice but to run with all your might. Hopefully, is just slow > >in developing his immune system and this will be a chapter in his book > >you can just look back on and smile -- but, for now, it's there and has > >to be dealt with. > > > >God bless you in your journey and welcome to the group. > > > >In His service, > >Dale > > > > > > J. Jennings " wrote: > >> > >> Thanks for the warm welcome to PedPID. I'm excited about finding others > open to sharing their experience and knowledge in dealing with immune > deficiency. > >> > >> I have 2 kids- 5 yr old and 2 1/2 yr old . is the > picture of health, but has been sick for 8 months now. > >> > >> We are at a crossroads at this point. We aren't sure if we should take > the next step of seeing an immunologist. > >> > >> has had constant sinus infections since 8/00, and has had 2 sinus > surgeries. The first one in 11/00 his adenoids were removed and his sinuses > flushed, and the 2nd time in 2/01 he only had his sinuses flushed. Blood > work shows he is IGA, IGG, and IGM deficient (though not severely) and his > Streptococcus pneumoniae antibodies are on the low end. Allergy testing was > inconclusive. He also received a Pneumococcal Conjugate vaccine. > >> > >> >From his symptoms, we think he will need another sinus flushing soon. > He is currently on an antibiotic, zyrtec, flonase, and Panmist-S > (decongestant), but he is NOT getting better. I desperately want my wild > little boy back! > >> > >> Therefore, should we see an immunologist next? We have been told by our > ENT and Pediatrician that will just have to grow out of his immune > deficiency and it is not necessary to see anyone else. My gut tells me we > need another opinion, but I'm not sure who to go to next. Our ENT is very > much against IVIG treatments, and our Pediatrician hasn't even mentioned the > need to see an immunologist. We just want our little boy to get well. > >> > >> Thanks, > >> > >> Jennings > >> > >> This is not an acceptable aAnd if so, what a > >> We are hesitant in seeing an immunologist because our ENT is totally > against the idea, and he is someone we trust (he treats myself and my > husband also). We need a referral from our pediatrician, > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 DALE YOU ALSO HAVE MY PERMISSION TO USE MY LETTER..KAREN --- Autti wrote: > Thanks Dale, > > It was me that asked for permission. Could you > please re-send your letter > to the group. Yours did not show up in my box > either. I will delete all > email addresses on each letter that I have > permission to use. > > Diane~Did you get my email? Let me know if you need > any further help. Good > luck! > > Autumn (Mom to Mark Cd5-Cd19 PID and ) > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 DALE YOU ALSO HAVE MY PERMISSION TO USE MY LETTER..KAREN --- Autti wrote: > Thanks Dale, > > It was me that asked for permission. Could you > please re-send your letter > to the group. Yours did not show up in my box > either. I will delete all > email addresses on each letter that I have > permission to use. > > Diane~Did you get my email? Let me know if you need > any further help. Good > luck! > > Autumn (Mom to Mark Cd5-Cd19 PID and ) > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 Sorry, I thought my e-mail address was at the top of each letter -- it is Dale@.... And yes, it changed when I dropped AOL. Dale Autti wrote: > > Dear Dale, > > Thank you for your email response, it was thoughtful and wonderfully > spiritual, as always. I need to clarify something however, my question was > not about the anthrax scare...I am not panicking about that, but more about > what is happening in general from the plane crashes, loss of thousands of > live, the potential for more terrorism and from the war that will be > on-going. Either way, your response would have answered either question or > fear and I thank you and appreciate your thoughts. I like you, have been > glued to the TV set since this all happened. I finally had to " turn it all > off " and do something else. One of the most comforting things that I have > found right now is spending time with my children. If I watch any TV or a > movie of some sort I make sure it is a comedy. I tried to send you a > personal email but it bounced back twice. I had some personal things that I > wanted to ask you. Could you please send me your email address again, > thanks. Be well my friend. > > Autumn (Mark Cd5-Cd19 PID and ) > > 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 October 13, 2001 Report Share Posted October 13, 2001 Sorry, I thought my e-mail address was at the top of each letter -- it is Dale@.... And yes, it changed when I dropped AOL. Dale Autti wrote: > > Dear Dale, > > Thank you for your email response, it was thoughtful and wonderfully > spiritual, as always. I need to clarify something however, my question was > not about the anthrax scare...I am not panicking about that, but more about > what is happening in general from the plane crashes, loss of thousands of > live, the potential for more terrorism and from the war that will be > on-going. Either way, your response would have answered either question or > fear and I thank you and appreciate your thoughts. I like you, have been > glued to the TV set since this all happened. I finally had to " turn it all > off " and do something else. One of the most comforting things that I have > found right now is spending time with my children. If I watch any TV or a > movie of some sort I make sure it is a comedy. I tried to send you a > personal email but it bounced back twice. I had some personal things that I > wanted to ask you. Could you please send me your email address again, > thanks. Be well my friend. > > Autumn (Mark Cd5-Cd19 PID and ) > > 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 October 13, 2001 Report Share Posted October 13, 2001 Sorry, I thought my e-mail address was at the top of each letter -- it is Dale@.... And yes, it changed when I dropped AOL. Dale Autti wrote: > > Dear Dale, > > Thank you for your email response, it was thoughtful and wonderfully > spiritual, as always. I need to clarify something however, my question was > not about the anthrax scare...I am not panicking about that, but more about > what is happening in general from the plane crashes, loss of thousands of > live, the potential for more terrorism and from the war that will be > on-going. Either way, your response would have answered either question or > fear and I thank you and appreciate your thoughts. I like you, have been > glued to the TV set since this all happened. I finally had to " turn it all > off " and do something else. One of the most comforting things that I have > found right now is spending time with my children. If I watch any TV or a > movie of some sort I make sure it is a comedy. I tried to send you a > personal email but it bounced back twice. I had some personal things that I > wanted to ask you. Could you please send me your email address again, > thanks. Be well my friend. > > Autumn (Mark Cd5-Cd19 PID and ) > > 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 November 12, 2001 Report Share Posted November 12, 2001 Dear Dale, You can count on my prayers for Thursday (and each and every day!!). Let us know how things turn out when you are able to. Warmest Regards, Autumn (Mark Cd5-Cd19 PID and ) Quote Link to comment Share on other sites More sharing options...
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