Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 HI , I think that PIDS and the IDF are getting much more attention then they did years ago. We can only hope that good things will come out of it for all those affected. I remember feeling so very alone after Mark's diagnosis and more alone after being told that he (at that time) was only 1 of 3 children with this type of PID and that it was new and unheard of. One year after the discovery of the Cd5-Cd19 PID, Dr. Hostoffer got all the families together for a " crash " course (so to speak) lecture about this PID. Dr. H went over what they knew about it at that time and wanted us to meet each other. Meeting those other two families was bittersweet (and I am so thankful that I did) and we all were overwhelmed with emotion. Hearing Dr. Hostoffer tell all of us how each of these children had, had a close call with death at some point and that each had survived brought a rush of emotion to all of us. We had all just met that day but it was like we had known each other for a lifetime. I am grateful that he brought us together. Support, networking and groups like this are what make the difference in helping people to cope and deal with the unfortunate diseases of Primary Immune Deficiency and the like. I am glad that you found this group and I hope that you will find that type of support here. Autumn (Mom to Mark Cd5-Cd19 PID and ) 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 26, 2001 Report Share Posted March 26, 2001 HI , If you want to read more about the Cd5-Cd19 PID you can go to my Web-page and click on the Discovery Link. Much has changed since the web-page was first started and I need to update it someday soon. We now have further information from physicians in France and shortly have it was posted they found that there was a defect in the T-cells. To date, the physicians in Paris have yet to determine the mutation, they have a cell line going on all three boys. If they determine the mutation, then we will have much clearer details, including if this PID is X-linked or not. The Discovery link will explain what a Cd5+ bcell is. Thanks for the complement on my name, I have to give my Dad credit for that one!!! My web-page URL is: http://www.scid.net/cd5cd19pid Autumn (Mom to Mark Cd5-Cd19 PID and ) 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 26, 2001 Report Share Posted March 26, 2001 Autumn, Thank you so much for this sweet post! I've been overwhelmed by all of you. Your story made me cry my eyes out because I can picture so clearly what it must've been like for all of you in getting to meet other children like your own and knowing that FINALLY there was someone who understood!! The deficiency you're dealing with IS very rare. I've done lots of research through the years and it's one I've never heard of! I'm thinking that the " C " is for chromasones?? This group has been the blessing of a lifetime to me and then some! I STILL love your name! 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 26, 2001 Report Share Posted March 26, 2001 Thank you Autumn. I'll be sure to go check out your webpage! I was told when Chad was diagnosed that his is very rare.....only one in a million. But I think they must've had those numbers wrong, because I find a lot of people on the IDF website who have Hypogammaglobulinemia. I guess that now, it's more widely known than it was back then or it's just more easily diagnosed than it once was. Just reading the posts here in the group, I can see the advancements just in the two years Chad was off IVIG. So much more has been learned about it and about PID's in general. Sometimes, I think if they could just isolate the defective genes, maybe they could get an insight into finding a cure for some of these PID's. If they had been performing stem cell therapy back when Chad was a baby, he would've been a good candidate for it because he was so critical. I am glad for all of the SCID patients who are diagnosed earlier enough to benefit from it. That's a major leap in itself! Thank you again for your kindness. When I finish up with email, I'm heading over to your website. 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 26, 2001 Report Share Posted March 26, 2001 Autumn, Your website is VERY impressive! What a great thing to do to get the knowledge out there! It's just possible that you may find others when their mothers go searching for information and bring this to the attention of their doctors. From what I've understood, Mark has a high amount of B cells floating around on the surface but they're not really doing any work and he doesn't amount any response at all to vaccines. You must have really felt isolated during these years because Mark's deficiency is an extremely rare one. Only 7 cases found worldwide so far......that's a tough one! Have you ever seen the movie, " Lorenzo's Oil " ? Your story reminds me of Lorenzo's story. His parents went on to find a CURE for his specific illness if it's caught in time. Unfortunately, for Lorenzo, his was too far gone, but they did manage to keep it from progressing any further. He had Adrenyleukodystrophy or ALD. So many things in the movie would remind you of things that you've been through and your will to fight as Mark's mother. I could see Chad, my husband and me in it many times over. I think it's a good movie for all parents with PID children to see. It's a real tear jerker for sure. A friend of ours had seen it back in years past and recommend that we watch it because it reminded her of us with Chad, she said. It's an old movie and was about 6 years ago that we first watched it. I finally broke down and bought, " The Boy in the Plastic Bubble " because Chad has had to live in isolation all these years. He was so critical that those were the doctor's orders. Chad really related to that movie (the only person he'd ever seen that was like him) and wanted to know if we could get him a suit like that boy had so that he could go to school too. It's been rough on him and you might have seen in previous posts that this was his first year of trying school. After only two months in, he was so drastically sick that the immunologist told us to get him out right away and that he was going to have to go back on IVIG. I'm hoping for better things next year. Chad wants so badly to be with other children. We can't have anymore children (me heart patient, hubby cancer) so he's been a pretty lonely little boy. He handles it all well, just gets depressed sometimes that he doesn't at least have a sibling to keep him from being so lonely. Better things are coming though, gotta keep thinking that way. And we've made lots of progress from the former years. Thank you for sharing your story with me Autumn. Yours has to be one that all immunologists would be interested in. I think it's so great that your doctor was able to diagnose and isolate it from the other PID's and to reach out and find others who had the same problem. That's one caring doctor that you have and together, you just might find the cause and a way to stop it from happening to others. Try to see Lorenzo's Oil if you've never seen it. Hang in there and know that while I don't completely understand Mark's particular PID itself, I do understand your feelings. 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 27, 2001 Report Share Posted March 27, 2001 Hi , After Mark's diagnosis was made I went out and bought the movie " Lorenzo's Oil " (I had seen it at the theatre). After an adjustment period I wrote a letter to a and Augsuto Odone (Lorenzo's parents) and to another family in the US who has 3 sons with AT (seen on 20/20 and was responsible for helping to find critical information on this life-threatening PID) and also called Soloman who was responsible for changing the laws on live polio vaccines after his son (a Bruton's patient) contracted polio from a live vaccine. It did help to speak to these families. I never talked to the Odones personally (I did with the other families, however) but I did receive a letter from them encouraging me to never give up my fight. It is a movie for ALL parents to see. As far as Mark's B-cells go, you are correct. He measures just below normal levels of IgG, but what they are measuring is all Cd5+ Bcells. He has less then 2% circulating B-cells, and instead has about 98% Cd5+ B-cells in its place. He literally does not make ANY neoantigens or antibodies at all. The Web-page has served a great purpose. The physicians in Paris (same ones that did the Gene therapy trials in SCID children) stumbled across my web-page when they were researching information on Cd5+ B-cells as they were working on mice that had this defect. It led them to Dr. Hostoffer and a study began on the three boys in the US in efforts to understand this PID and to try and locate the mutation. We did learn from Paris that these boys B-cells are all naive, fetal B-cells unable to do anything. They are still working on the cell line. Shortly after that, a lecture was given in Singapore (they have some excellent B-cell experts there) and we may be sending blood samples across the world again. There are physicians working to try to understand this PID, for a variety of reasons. There has never been any cases in medical history with levels of Cd5+ B-cells this high (not even with CLL cancer patients). Nor has Dr. H ever seen any child (prior to these boys) fail to make a mark on the page at all to polysaccharides. Mark also does not make other antibodies, as well. We realize that it is unrealistic to think that there will ever be a cure for these 7 boys, (so we have been told) but I never give up hope.....EVER. We also have told the physicians that we will never allow them to turn our children into guinea pigs. It is important that we weed out some of the testing and leave it to what is going to help understand this PID strictly, and thus in turn, help these boys. I do not pretend that some days are more difficult then others and it is VERY hard to be " first in line " with a PID that is new and unheard of. The physicians know enough about Mark's PID to know that it is a moderate to severe PID and one that will certainly have autoimmune complications (we are already witnessing this in Mark with his LCV, autoimmune thyroid issues and IBD). This is why we want Mark to live as normal a life as possible....he goes to school, plays in the band, is a Boy Scout and does Karate. We want his life to be full of LIFE and not ever be made to feel that he is some sort of " science project " for physicians. We strive to make his life one that is quality, verses quantity. Taking each day one day at a time helps! Thanks for your interest, understanding and support. Autumn (Mom to Mark Cd5-Cd19 PID and ) 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 27, 2001 Report Share Posted March 27, 2001 Autumn, If I had a hat on, that sucker would be flying off my head after reading this!! I am so proud of the position you take in all this!! I know you don't feel it at times, but you have amazing strength! I've been told that too (because of my being a heart patient, hubby having had cancer and then Chad with PID) but sometimes, I feel about as weak as they come, you know? Like you, I want Chad to live as normally as possible and this isolation thing has really been hard. But he is getting better than the baby years, it's just that all the germs kids carry make him so sick that it puts him back into the danger zone. We've worked so long and so hard to try to get him past that, that I don't want to go back to those days of being admitted to the hospital in serious condition over and over again. I try to take him places that are open areas (like the park) so that he's not in a closed in area with kids and with minimizing the contact this way, he's done much better. But school was a nightmare as far as his health went. His immunologist thinks that after we get him built back up with the IVIG, that we might can try it again next year. Or we may see if we can go with sending him to summer school and having him tutored after school during the winter months. With summer school, he'd be able to have contact with other kids, but not be at such a high risk of exposure. Like you, we have vetoed many tests and procedures through the years and we like the fact that they are holding Chad's immune testing to the minumum that they need. We could probably do more extensive testing and find out exactly which genes are involved and what all the cells are doing, but unless he makes a worse decline, we're holding as are. It would interest me to see what exactly is going on with his B cells, but I would only do that if they were running other tests at the same time and could do all the bloodwork in one sitting. Like when he's reevaluated in 6 months, I wouldn't mind doing the Cd5+B testing because he does have a B cell problem. I think they could probably do that while doing the others and we wouldn't be putting him through anything further. But since it's not a routine thing, I'm not sure the immunologist would want to do it. Hang in there and keep fighting Autumn. It could be that Mark has this for the same reason that Lorenzo did. You just never know what God can intervene and do. He kept Chad alive when the pediatrician was doubtful of him surviving his first year. And he literally pulled him from the clutches of death several times over. Keep your faith and keep that mother's heart of yours who wants to let her son LIVE instead of exist! Those were my exact words to Chad's former pediatrician recently when we had our falling out. I'm tired of him just " existing " , I want him to be able to live!! The lesser of two evils would be to let him live until 20 as opposed to him existing to the ripe old age of 70, per say. Although my hopes are that as he gets older, the severity of things will lesson and he'll be able to live a relatively normal life. We changed peds and got back to our former immunologist and now have better treatment taking place. Never say never. God gives children like Mark, Chad and all the others here to parents who he knows will stand up for their rights and who will give their own lives up to do what it takes to take care of his special children. They each have a very special purpose in this life. We might not ever get to know what it is, but it's there. I'll be following Mark's story Autumn. I'm so glad that you were able to talk with some of these other parents that you mentioned. Your case is a lot like Lorenzo's in that you're one of the pioneers here. My brother has a problem similar to Lorenzo and I kept trying to get him to contact The Myelin Project to see if maybe Lorenzo's Oil could help it. He's older than me, has lived with it for many years, but now, it's progressing to the point of paralysis. My mother has finally convinced him to get back to the neurologist. He's a single parent and put his kids first in order, like you and I do, so I can't blame him for putting off his own illness to take care of their needs. Now that they're basically grown, maybe he'll look further into things. Keep in touch. I'll be praying for you and Mark and for your entire family and the doctors who are trying to help you. Sending lots of love and care your way, 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 27, 2001 Report Share Posted March 27, 2001 Autumn, If I had a hat on, that sucker would be flying off my head after reading this!! I am so proud of the position you take in all this!! I know you don't feel it at times, but you have amazing strength! I've been told that too (because of my being a heart patient, hubby having had cancer and then Chad with PID) but sometimes, I feel about as weak as they come, you know? Like you, I want Chad to live as normally as possible and this isolation thing has really been hard. But he is getting better than the baby years, it's just that all the germs kids carry make him so sick that it puts him back into the danger zone. We've worked so long and so hard to try to get him past that, that I don't want to go back to those days of being admitted to the hospital in serious condition over and over again. I try to take him places that are open areas (like the park) so that he's not in a closed in area with kids and with minimizing the contact this way, he's done much better. But school was a nightmare as far as his health went. His immunologist thinks that after we get him built back up with the IVIG, that we might can try it again next year. Or we may see if we can go with sending him to summer school and having him tutored after school during the winter months. With summer school, he'd be able to have contact with other kids, but not be at such a high risk of exposure. Like you, we have vetoed many tests and procedures through the years and we like the fact that they are holding Chad's immune testing to the minumum that they need. We could probably do more extensive testing and find out exactly which genes are involved and what all the cells are doing, but unless he makes a worse decline, we're holding as are. It would interest me to see what exactly is going on with his B cells, but I would only do that if they were running other tests at the same time and could do all the bloodwork in one sitting. Like when he's reevaluated in 6 months, I wouldn't mind doing the Cd5+B testing because he does have a B cell problem. I think they could probably do that while doing the others and we wouldn't be putting him through anything further. But since it's not a routine thing, I'm not sure the immunologist would want to do it. Hang in there and keep fighting Autumn. It could be that Mark has this for the same reason that Lorenzo did. You just never know what God can intervene and do. He kept Chad alive when the pediatrician was doubtful of him surviving his first year. And he literally pulled him from the clutches of death several times over. Keep your faith and keep that mother's heart of yours who wants to let her son LIVE instead of exist! Those were my exact words to Chad's former pediatrician recently when we had our falling out. I'm tired of him just " existing " , I want him to be able to live!! The lesser of two evils would be to let him live until 20 as opposed to him existing to the ripe old age of 70, per say. Although my hopes are that as he gets older, the severity of things will lesson and he'll be able to live a relatively normal life. We changed peds and got back to our former immunologist and now have better treatment taking place. Never say never. God gives children like Mark, Chad and all the others here to parents who he knows will stand up for their rights and who will give their own lives up to do what it takes to take care of his special children. They each have a very special purpose in this life. We might not ever get to know what it is, but it's there. I'll be following Mark's story Autumn. I'm so glad that you were able to talk with some of these other parents that you mentioned. Your case is a lot like Lorenzo's in that you're one of the pioneers here. My brother has a problem similar to Lorenzo and I kept trying to get him to contact The Myelin Project to see if maybe Lorenzo's Oil could help it. He's older than me, has lived with it for many years, but now, it's progressing to the point of paralysis. My mother has finally convinced him to get back to the neurologist. He's a single parent and put his kids first in order, like you and I do, so I can't blame him for putting off his own illness to take care of their needs. Now that they're basically grown, maybe he'll look further into things. Keep in touch. I'll be praying for you and Mark and for your entire family and the doctors who are trying to help you. Sending lots of love and care your way, 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...
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