Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 In a message dated 10/23/2006 12:17:13 A.M. Eastern Daylight Time, tracey.white@... writes: Have you ever been on a psychiatric ward? It's *not* the same as being on a regular hospital ward. You DON'T get a choice because if you go against what they want you to do, they would just as soon stick a needle in your leg, sedate you and put you in restraints and *force* the medicine down your throat, than they would deal with an "uncooperative patient." I have worked Psych units! If they don't give you a choice, it means they consider you unable to make decisions for yourself. Where was your health care agent through all of this????? No excuse for this to happen to ANYONE.Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Anne,Have you ever been on a psychiatric ward? It's *not* the same as being on a regular hospital ward. You DON'T get a choice because if you go against what they want you to do, they would just as soon stick a needle in your leg, sedate you and put you in restraints and *force* the medicine down your throat, than they would deal with an " uncooperative patient. " TraceyOn 10/19/06, AStep17427@... <AStep17427@...> wrote: In a message dated 10/19/2006 9:43:41 P.M. Eastern Daylight Time, marely66@... writes: Wow Anne...that was kinda rude! I prefer to think of it as HONEST. There is very little in this life that we don't have a choice about. I've found that many people will make choices and if the outcome isn't to their liking, will say they were forced to do it. Anne-- Tracey White (tracey.white@...)Life Partner to Piskur (Commitment Ceremony: 8/5/00) " They go dancing, around and around, without any cares; and her very first true love is holding her close; and for a moment, she isn't scared. " - Skin (Sarabeth) by Rascal Flatts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Anne,Fortunately I wasn't speaking from personal experience, but as someone with an Autism Spectrum Disorder (ASD) similar to Asperger's Syndrome, I have read *many* accounts of people with ASDs who were hospitalized and *forced* to take anti-psychotics " for their own good " after being *incorrectly* diagnosed with Schizophrenia and similar mental illnesses. These people would *not* have been forced to take their medications had they been diagnosed correctly, but the fact is that they were diagnosed with a mental illness they did not have, were *not* listened to by their doctors, and *were* forced to take unnecessary medications as a result. TraceyOn 10/23/06, AStep17427@... <AStep17427@...> wrote: In a message dated 10/23/2006 12:17:13 A.M. Eastern Daylight Time, tracey.white@... writes: I have worked Psych units! If they don't give you a choice, it means they consider you unable to make decisions for yourself. Where was your health care agent through all of this????? No excuse for this to happen to ANYONE.Anne -- Tracey White (tracey.white@...)Life Partner to Piskur (Commitment Ceremony: 8/5/00) " They go dancing, around and around, without any cares; and her very first true love is holding her close; and for a moment, she isn't scared. " - Skin (Sarabeth) by Rascal Flatts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 In a message dated 10/23/2006 10:30:57 A.M. Eastern Daylight Time, tracey.white@... writes: Fortunately I wasn't speaking from personal experience, but as someone with an Autism Spectrum Disorder (ASD) similar to Asperger's Syndrome, I have read *many* accounts of people with ASDs who were hospitalized and *forced* to take anti-psychotics "for their own good" after being *incorrectly* diagnosed with Schizophrenia and similar mental illnesses. These people would *not* have been forced to take their medications had they been diagnosed correctly, but the fact is that they were diagnosed with a mental illness they did not have, were *not* listened to by their doctors, and *were* forced to take unnecessary medications as a result. That's exactly why everyone should have a HCP on file. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 There was little they could do. > > > > In a message dated 10/23/2006 12:17:13 A.M. Eastern Daylight Time, > > tracey.white@... writes: > > > > > > I have worked Psych units! If they don't give you a choice, it means they > > consider you unable to make decisions for yourself. Where was your health > > care agent through all of this????? No excuse for this to happen to ANYONE. > > Anne > > > > > > > > -- > Tracey White (tracey.white@...) > Life Partner to Piskur (Commitment Ceremony: 8/5/00) " They go dancing, > around and around, without any cares; and her very first true love is > holding her close; and for a moment, she isn't scared. " - Skin (Sarabeth) by > Rascal Flatts > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 I've worked in a lot of psych hospitals as well. Almost anyone who is admitted to a hospital is in a crisis and, therefore, may not be making the best decisions. They may not be able to articulate all of their symptoms making diagnosis difficult. Any disease, psych or not, goes through stages of understanding, beginning with research communities and spreading out from there. Psychiatry, prior to the development of thorazine in the 1950's was truly barbaric. We HAVE truly come a long way. There is a lot of prejudice toward people who admit to others that they have any psych problem, more in the outside world than in the psych hospital, but psych hospitals are not without their prejudiced people sadly. Those people eventually get weeded out. Diagnosis is not only a science, it is an art. Hindsight is 20/20. Willow --- Tracey White <tracey.white@...> wrote: > Anne, > > Fortunately I wasn't speaking from personal > experience, but as someone with > an Autism Spectrum Disorder (ASD) similar to > Asperger's Syndrome, I have > read *many* accounts of people with ASDs who were > hospitalized and *forced* > to take anti-psychotics " for their own good " after > being *incorrectly* > diagnosed with Schizophrenia and similar mental > illnesses. These people > would *not* have been forced to take their > medications had they been > diagnosed correctly, but the fact is that they were > diagnosed with a mental > illness they did not have, were *not* listened to by > their doctors, and > *were* forced to take unnecessary medications as a > result. > > Tracey > > On 10/23/06, AStep17427@... <AStep17427@...> > wrote: > > > > In a message dated 10/23/2006 12:17:13 A.M. > Eastern Daylight Time, > > tracey.white@... writes: > > > > > > I have worked Psych units! If they don't give you a > choice, it means they > > consider you unable to make decisions for > yourself. Where was your health > > care agent through all of this????? No excuse for > this to happen to ANYONE. > > Anne > > > > > > > > -- > Tracey White (tracey.white@...) > Life Partner to Piskur (Commitment Ceremony: > 8/5/00) " They go dancing, > around and around, without any cares; and her very > first true love is > holding her close; and for a moment, she isn't > scared. " - Skin (Sarabeth) by > Rascal Flatts > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 I love what you said here. > > > > > > In a message dated 10/23/2006 12:17:13 A.M. > > Eastern Daylight Time, > > > tracey.white@... writes: > > > > > > > > > > > I have worked Psych units! If they don't give you a > > choice, it means they > > > consider you unable to make decisions for > > yourself. Where was your health > > > care agent through all of this????? No excuse for > > this to happen to ANYONE. > > > Anne > > > > > > > > > > > > > > -- > > Tracey White (tracey.white@...) > > Life Partner to Piskur (Commitment Ceremony: > > 8/5/00) " They go dancing, > > around and around, without any cares; and her very > > first true love is > > holding her close; and for a moment, she isn't > > scared. " - Skin (Sarabeth) by > > Rascal Flatts > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2006 Report Share Posted October 31, 2006 They knew i had aspergers, they tried to cure me of it. Every psychiatrist i have ever encountered is an incompetant lying sc** bag who thinks he is " God on high " > > There was little they could do. > > > > Tracey White (tracey.white@) > > Life Partner to Piskur (Commitment Ceremony: 8/5/00) " They go > dancing, > > around and around, without any cares; and her very first true love is > > holding her close; and for a moment, she isn't scared. " - Skin > (Sarabeth) by > > Rascal Flatts > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2006 Report Share Posted November 1, 2006 Superion, I've seen a few of those kinds of Pyschiatrists as well. One thought I should be incredibly impressed by his degree. Needless to say, I wasn't. His ego was too large for me to read his diploma *lol* Hugs, -------------- Original message -------------- From: "superion7777" <superion7777@...> They knew i had aspergers, they tried to cure me of it.Every psychiatrist i have ever encountered is an incompetant lyingsc** bag who thinks he is "God on high">> There was little they could do.> > > > Tracey White (tracey.white@)> > Life Partner to Piskur (Commitment Ceremony: 8/5/00) "They go> dancing,> > around and around, without any cares; and her very first true love is> > holding her close; and for a moment, she isn't scared." - Skin> (Sarabeth) by> > Rascal Flatts> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2006 Report Share Posted November 4, 2006 I am sorry that you have had such bad experiences with psychiatrists. It IS hard to find the right person to open up every emotion, every experience to. Some people don't find the right person to work with. Some people can't find it within themselves to lay their lives bare to another's inspection and questions. I have worked with several psychiatrists through the years. Some were okay, some were terrible,and one literally saved my life. I'm not talking about suicide here (although there WERE times I felt suicidal). They listened to what I remembered about my life and helped me make sense of it. They parented me in the truest sense of the word and I found a happy life at the end of the tunnel. I do not know a lot about Aspergers. I am meeting people on a couple of lists that have it. With one notable exception, the people I am meeting who have Aspergers seem to have a chip on their shoulder. They all have dealt with multiple problems with their medical care and are literally at their wits end. Is Aspergers so new/rare/unknown that it's hard to diagnose? Just from the number of people on the two lists I'm on, it occurs enough that it shouldn't be unknown to most practitioners. I'm just wondering out loud, hoping someone will give me some more info. Willow --- superion7777 <superion7777@...> wrote: > They knew i had aspergers, they tried to cure me of > it. > Every psychiatrist i have ever encountered is an > incompetant lying > sc** bag who thinks he is " God on high " > > > > > There was little they could do. > > > > > > > Tracey White (tracey.white@) > > > Life Partner to Piskur (Commitment > Ceremony: 8/5/00) " They go > > dancing, > > > around and around, without any cares; and her > very first true love is > > > holding her close; and for a moment, she isn't > scared. " - Skin > > (Sarabeth) by > > > Rascal Flatts > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 I never wanted to be near psychitrists to begin with( i dont trust them) i was just forced to go. Aspergers is on the top of the autism spectrum. Its only just beginning to be understood. Thanks to those psychitrists i dont have know much about as either( several of the major components of as are gone.) Its collection of oddball traits. the more pscyhitric " stuff " you have the more as you are. As is a trade off- you lose the ability to socialize and motor coordition in exchange for some really wild abilities > > I am sorry that you have had such bad experiences with > psychiatrists. It IS hard to find the right person to > open up every emotion, every experience to. Some > people don't find the right person to work with. Some > people can't find it within themselves to lay their > lives bare to another's inspection and questions. > > I have worked with several psychiatrists through the > years. Some were okay, some were terrible,and one > literally saved my life. I'm not talking about suicide > here (although there WERE times I felt suicidal). They > listened to what I remembered about my life and helped > me make sense of it. They parented me in the truest > sense of the word and I found a happy life at the end > of the tunnel. > > I do not know a lot about Aspergers. I am meeting > people on a couple of lists that have it. With one > notable exception, the people I am meeting who have > Aspergers seem to have a chip on their shoulder. They > all have dealt with multiple problems with their > medical care and are literally at their wits end. > > Is Aspergers so new/rare/unknown that it's hard to > diagnose? Just from the number of people on the two > lists I'm on, it occurs enough that it shouldn't be > unknown to most practitioners. > > I'm just wondering out loud, hoping someone will give > me some more info. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 tcm_marks wrote: > > > Hello > > I was just allowed to post in this group and I hope to gain some > knowledge about PID. from Dale, Mom to Katy, 22 and married Welcome Theresa, I really think you are in the right place. I don't have time to write right now -- but hopefully others will explain more fully. If not -- I'll get back to you as soon as possible. Everyone is busy with Christmas these days. But welcome and best wishes for your journey to diagnosis! In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 tcm_marks wrote: > Theresa, I should add that the best place to start reading and learning is with the Immune Deficiency Foundation. That web site is www.primaryimmune.org or you can call them and ask for their Patient and Family Handbook at 1-800-666-0866. It's free. Gotta run, In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2006 Report Share Posted December 24, 2006 > > > My son has bronchiectasis. > > They have seen an immunologist but they don't seem to fit totally in > the PID catagory. This has been our problem throughout. They don't > seem to fit anywhere. Hi Theresa, Welcome to the group! I am pretty new to the group myself and I have learned so much by " listening " . My daughter is being followe for PID and does not fit neatly into any group either. She is still in the early stages of being watched and from what I have learned it can take up to 9 years to be diagnosed. I have a question for you about myself. I have PID as well and it was mentioned to me the other day by a doctor I do not normally see that I might have bronchiecstasis and to talk to the new pumonologist about it when I see him next momth. I do not know much about it and I was wondering whether you can tell me what you know. You can post or send it to my personal email. Thank you in advance. Happy Holidays everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2006 Report Share Posted December 24, 2006 > > > My son has bronchiectasis. > > They have seen an immunologist but they don't seem to fit totally in > the PID catagory. This has been our problem throughout. They don't > seem to fit anywhere. Hi Theresa, Welcome to the group! I am pretty new to the group myself and I have learned so much by " listening " . My daughter is being followe for PID and does not fit neatly into any group either. She is still in the early stages of being watched and from what I have learned it can take up to 9 years to be diagnosed. I have a question for you about myself. I have PID as well and it was mentioned to me the other day by a doctor I do not normally see that I might have bronchiecstasis and to talk to the new pumonologist about it when I see him next momth. I do not know much about it and I was wondering whether you can tell me what you know. You can post or send it to my personal email. Thank you in advance. Happy Holidays everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2006 Report Share Posted December 25, 2006 hey I am so honored to seem to be able to add to the posts. So here it goes! As far as I know, I am no professional, the lungs have small branches that are tube like. These tubes are usually smooth and the cilia are able to move mucus easily. When you have bronchiectasis the smoothness is not there because of the floppiness of the tubes wh is damaged. I guess the tubes lose their strength in certain places. I would say something like when a swim suit loses its elasticity. It puckers up. This loss makes the cilia's job harder to move the mucus. It leaves pockets where the mucus sits and causes infections. Now from what I understand there are two types. You can have a type that seems to affect the whole tube or the kind that only seems to affect areas. It is hard to explain,for me, without showing you. The one kind can sometimes go back to normal the other can't. We waited over a year to see if the bronchiectasis would go away but it didn't. He has it all over. If it was localized they would remove it. It is in both lungs. One doctor has said it was about 50% of his lungs. The pulmonologist may want you to excerise your lungs. They told us to put him in sports so he could move that mucus. He also was given an acapella to use with a nebulizer. This is much easier (time consuming but easier) to do instead of the lung percussions. WE called that " the beatings " . We had to beat the back and front of his chests. I think you can even get a machine to do " the beatings " . You can find a lot of information on bronchiectasis by looking up cystic fibrosis. I also think the best hospital is in Denver. It is called something like National Jewish Hospital (something like that). I have never been there but it I have been told they deal with a lot of lung problems. lg4275 <lg4275@...> wrote: > > > My son has bronchiectasis. > > They have seen an immunologist but they don't seem to fit totally in > the PID catagory. This has been our problem throughout. They don't > seem to fit anywhere. Hi Theresa, Welcome to the group! I am pretty new to the group myself and I have learned so much by " listening " . My daughter is being followe for PID and does not fit neatly into any group either. She is still in the early stages of being watched and from what I have learned it can take up to 9 years to be diagnosed. I have a question for you about myself. I have PID as well and it was mentioned to me the other day by a doctor I do not normally see that I might have bronchiecstasis and to talk to the new pumonologist about it when I see him next momth. I do not know much about it and I was wondering whether you can tell me what you know. You can post or send it to my personal email. Thank you in advance. Happy Holidays everyone! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2006 Report Share Posted December 25, 2006 Welcome, Theresa! I think you will find yourself at home here. Most of the parents have had to advocate for their children and push for answers. You might be interested in reviewing the following publications: 1. Jeffery Modell Foundation's Physician Algorthim: http://www.info4pi.org/researchlibrary/index.cfm?section=researchlibrary & content\ =algorithm & CFID=13653963 & CFTOKEN=74808 2. The Immune Deficiency Foundation Diagnostic & Clinical Care Guidelines for Primary Immunodeficiency Diseases http://www.primaryimmune.org/pubs/book_diag/diag_and%20clin.htm It is not unusual for a physician to do incomplete testing, stop early at antibody function, etc... When there is a suspicion of a PID, sometimes you have to test and re-test before the true circumstances are known. Getting an opinion from an experienced immunologist is necessary. You mentioned National Jewish Medical & Research Center. They have top-noch faculty and resources to evaluate immune and pulmonary issues. I am pasting the website for the lung-line nurses, for those that are interested. The call is free: http://www.njc.org/contact/lung/index.aspx mom to CVIDer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2006 Report Share Posted December 25, 2006 thanks for the info. I have seen those websites. I just have not completely looked at them. I am interested in why you have to retest. I don't doubt the reasons for doing this. I just want to know how this helps. Thanks theresa Schulman <dietdoc@...> wrote: Welcome, Theresa! I think you will find yourself at home here. Most of the parents have had to advocate for their children and push for answers. You might be interested in reviewing the following publications: 1. Jeffery Modell Foundation's Physician Algorthim: http://www.info4pi.org/researchlibrary/index.cfm?section=researchlibrary & content\ =algorithm & CFID=13653963 & CFTOKEN=74808 2. The Immune Deficiency Foundation Diagnostic & Clinical Care Guidelines for Primary Immunodeficiency Diseases http://www.primaryimmune.org/pubs/book_diag/diag_and%20clin.htm It is not unusual for a physician to do incomplete testing, stop early at antibody function, etc... When there is a suspicion of a PID, sometimes you have to test and re-test before the true circumstances are known. Getting an opinion from an experienced immunologist is necessary. You mentioned National Jewish Medical & Research Center. They have top-noch faculty and resources to evaluate immune and pulmonary issues. I am pasting the website for the lung-line nurses, for those that are interested. The call is free: http://www.njc.org/contact/lung/index.aspx mom to CVIDer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2006 Report Share Posted December 26, 2006 Theresa, Thank you so much for your information. My appointment is in a couple of weeks so I will learn more then. I had one more question if you don't mind...I am not sure what an acapella is. > > > > > > My son has bronchiectasis. > > > > They have seen an immunologist but they don't seem to fit totally in > > the PID catagory. This has been our problem throughout. They don't > > seem to fit anywhere. > > Hi Theresa, > > Welcome to the group! I am pretty new to the group myself and I > have learned so much by " listening " . My daughter is being followe for > PID and does not fit neatly into any group either. She is still in > the early stages of being watched and from what I have learned it can > take up to 9 years to be diagnosed. > I have a question for you about myself. I have PID as well and it > was mentioned to me the other day by a doctor I do not normally see > that I might have bronchiecstasis and to talk to the new pumonologist > about it when I see him next momth. I do not know much about it and I > was wondering whether you can tell me what you know. You can post or > send it to my personal email. Thank you in advance. > Happy Holidays everyone! > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2006 Report Share Posted December 26, 2006 Theresa, Thank you so much for your information. My appointment is in a couple of weeks so I will learn more then. I had one more question if you don't mind...I am not sure what an acapella is. > > > > > > My son has bronchiectasis. > > > > They have seen an immunologist but they don't seem to fit totally in > > the PID catagory. This has been our problem throughout. They don't > > seem to fit anywhere. > > Hi Theresa, > > Welcome to the group! I am pretty new to the group myself and I > have learned so much by " listening " . My daughter is being followe for > PID and does not fit neatly into any group either. She is still in > the early stages of being watched and from what I have learned it can > take up to 9 years to be diagnosed. > I have a question for you about myself. I have PID as well and it > was mentioned to me the other day by a doctor I do not normally see > that I might have bronchiecstasis and to talk to the new pumonologist > about it when I see him next momth. I do not know much about it and I > was wondering whether you can tell me what you know. You can post or > send it to my personal email. Thank you in advance. > Happy Holidays everyone! > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2006 Report Share Posted December 26, 2006 My son has bronchiectasis. My daughter gets > recurrent pneumonia and sinus infections. She is on her 16 > antibiotic this year for infections. > > They have seen an immunologist but they don't seem to fit totally in > the PID catagory. This has been our problem throughout. They don't > seem to fit anywhere. They don't know why he has bronchiectasis. > They don't know why they are adrenally insufficient. They don't > seem to know why they have no HIB antibodies (my son also has no > antibodies for tetanus and low for dip). All of their Ig levels > seem normal. > > I actually do not know if I belong here looking for answers but I > would like to know what you all think. What road do I need to > travel to get some answers? > from Dale, Mom to Katy, CVID, age 22, married Theresa, sorry I couldn't answer more fully last time. I had company arriving. When I just read through your post, it makes me wonder if you have found a doctor who is well versed with immune deficiencies. There are a lot of doctors who know to check the IgG level, but don't know what to do after that. Is your doctor recommending any other tests? You see, IgG levels are the easy part to check -- any doctor can do that. If the levels are low -- well, that's the problem. But in some cases the immune system is not functioning well even when the numbers are okay. The immune system is a very complex group of problems. If your doctor is not well versed in immune deficiencies (and most are not), I highly recommend that you and your family contact the Immune Defiency Foundation and get a recommendation to a Clinical Immunologist who can thoroughly check out your children. It certainly sounds to me that they are missing some important immune function -- like building antibodies and protecting the lungs. That tells me that something is seriously wrong. I would highly recommend a trip to National Jewish (since you mention that one) or finding another one near you. You may even have to travel out of state. If you want to post your general location to the group -- we may be able to recommend a doctor in your area. Maybe your doctor is doing these tests, and you are just asking questions in advance, but, if not, please seek a doctor who will do the testing. Now, it's expensive to see a doctor out of your area -- but you only need to do it once in order to get the initial diagnosis and there are ways to make it less expensive. After that they should be able to work with your pediatrician to maintain their health. But, it is vitally important to get a definite diagnosis. Your child has already experienced lung damage and if we could prevent further damage, it would be well worth a trip to a higher level doctor. Please, please, please, talk to the Immune Deficiency Foundation about finding a doctor to thoroughly check out their immune function and get them help. It's not enough to say that their IgG levels are okay. We have a lot of kids on this site whose numbers are fine -- but the function is not. There are additional tests that need to be done to determine what's missing. Please, please, look into finding a clinical immunologist who can do thorough testing. The Immune Deficiency Foundation's number is 1-800-296-4433 and they can direct you to an immunologist that is closest to your area. Let us know if you have further questions, In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2006 Report Share Posted December 26, 2006 My son has bronchiectasis. My daughter gets > recurrent pneumonia and sinus infections. She is on her 16 > antibiotic this year for infections. > > They have seen an immunologist but they don't seem to fit totally in > the PID catagory. This has been our problem throughout. They don't > seem to fit anywhere. They don't know why he has bronchiectasis. > They don't know why they are adrenally insufficient. They don't > seem to know why they have no HIB antibodies (my son also has no > antibodies for tetanus and low for dip). All of their Ig levels > seem normal. > > I actually do not know if I belong here looking for answers but I > would like to know what you all think. What road do I need to > travel to get some answers? > from Dale, Mom to Katy, CVID, age 22, married Theresa, sorry I couldn't answer more fully last time. I had company arriving. When I just read through your post, it makes me wonder if you have found a doctor who is well versed with immune deficiencies. There are a lot of doctors who know to check the IgG level, but don't know what to do after that. Is your doctor recommending any other tests? You see, IgG levels are the easy part to check -- any doctor can do that. If the levels are low -- well, that's the problem. But in some cases the immune system is not functioning well even when the numbers are okay. The immune system is a very complex group of problems. If your doctor is not well versed in immune deficiencies (and most are not), I highly recommend that you and your family contact the Immune Defiency Foundation and get a recommendation to a Clinical Immunologist who can thoroughly check out your children. It certainly sounds to me that they are missing some important immune function -- like building antibodies and protecting the lungs. That tells me that something is seriously wrong. I would highly recommend a trip to National Jewish (since you mention that one) or finding another one near you. You may even have to travel out of state. If you want to post your general location to the group -- we may be able to recommend a doctor in your area. Maybe your doctor is doing these tests, and you are just asking questions in advance, but, if not, please seek a doctor who will do the testing. Now, it's expensive to see a doctor out of your area -- but you only need to do it once in order to get the initial diagnosis and there are ways to make it less expensive. After that they should be able to work with your pediatrician to maintain their health. But, it is vitally important to get a definite diagnosis. Your child has already experienced lung damage and if we could prevent further damage, it would be well worth a trip to a higher level doctor. Please, please, please, talk to the Immune Deficiency Foundation about finding a doctor to thoroughly check out their immune function and get them help. It's not enough to say that their IgG levels are okay. We have a lot of kids on this site whose numbers are fine -- but the function is not. There are additional tests that need to be done to determine what's missing. Please, please, look into finding a clinical immunologist who can do thorough testing. The Immune Deficiency Foundation's number is 1-800-296-4433 and they can direct you to an immunologist that is closest to your area. Let us know if you have further questions, In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 sorry about my last post. I forgot to sign it, OOPS! Anyway an acapella is a plastic device that hooks up to a nebulizer. You use it by blowing into the mouthpiece while the nebulizer is on. When you breath throught the device it causes a flutter in the airways which helps to clear the mucus. You can google it by putting in acapella breathing device or the Flutter. I know there are other things you can use. My son was given this (it comes in different sizes) because of his age. He was seven at the time when he used it the most. We use to do the percussions by hand. My wrists and hands were killing me after awhile. Glad to answer any questions. Good luck with your appointment. Theresa lg4275 <lg4275@...> wrote: Theresa, Thank you so much for your information. My appointment is in a couple of weeks so I will learn more then. I had one more question if you don't mind...I am not sure what an acapella is. > > > > > > My son has bronchiectasis. > > > > They have seen an immunologist but they don't seem to fit totally in > > the PID catagory. This has been our problem throughout. They don't > > seem to fit anywhere. > > Hi Theresa, > > Welcome to the group! I am pretty new to the group myself and I > have learned so much by " listening " . My daughter is being followe for > PID and does not fit neatly into any group either. She is still in > the early stages of being watched and from what I have learned it can > take up to 9 years to be diagnosed. > I have a question for you about myself. I have PID as well and it > was mentioned to me the other day by a doctor I do not normally see > that I might have bronchiecstasis and to talk to the new pumonologist > about it when I see him next momth. I do not know much about it and I > was wondering whether you can tell me what you know. You can post or > send it to my personal email. Thank you in advance. > Happy Holidays everyone! > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 sorry about my last post. I forgot to sign it, OOPS! Anyway an acapella is a plastic device that hooks up to a nebulizer. You use it by blowing into the mouthpiece while the nebulizer is on. When you breath throught the device it causes a flutter in the airways which helps to clear the mucus. You can google it by putting in acapella breathing device or the Flutter. I know there are other things you can use. My son was given this (it comes in different sizes) because of his age. He was seven at the time when he used it the most. We use to do the percussions by hand. My wrists and hands were killing me after awhile. Glad to answer any questions. Good luck with your appointment. Theresa lg4275 <lg4275@...> wrote: Theresa, Thank you so much for your information. My appointment is in a couple of weeks so I will learn more then. I had one more question if you don't mind...I am not sure what an acapella is. > > > > > > My son has bronchiectasis. > > > > They have seen an immunologist but they don't seem to fit totally in > > the PID catagory. This has been our problem throughout. They don't > > seem to fit anywhere. > > Hi Theresa, > > Welcome to the group! I am pretty new to the group myself and I > have learned so much by " listening " . My daughter is being followe for > PID and does not fit neatly into any group either. She is still in > the early stages of being watched and from what I have learned it can > take up to 9 years to be diagnosed. > I have a question for you about myself. I have PID as well and it > was mentioned to me the other day by a doctor I do not normally see > that I might have bronchiecstasis and to talk to the new pumonologist > about it when I see him next momth. I do not know much about it and I > was wondering whether you can tell me what you know. You can post or > send it to my personal email. Thank you in advance. > Happy Holidays everyone! > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 Dale Thanks I have talked to someone at IDF. I have seen a doctor. His name is Dr. Infante. He doubts they have PID. These were his recommendations Logan, my 6 yr old daughter, should be put on antibiotics daily. Zach, my 9yr old son, could have a trial IVIG if his lung disease gets worse. Hey, I am no doctor, but I do know something is not right. I guess the thing that bothers me is if it is not immune then what is it? Why is everything they have idiopathic? They don't know the cause of the adrenal gland problem. They don't know why my son gets UTI or why he has bronchiectasis. They don't know why she has so many sinus respiratory infections or why she has an adrenal problem. I do not want to take them to the wrong doctor and I know they are lucky. I know it can be worse but as a mom I feel it is my job to do the best I can for them. SO I search for answers OR someone who may find them as an interesting case. I just got back from seeing a kidney specialist. We had to see this Dr just to make sure everything is okay. She has recommended the kids see infecious disease and genetic doctors. The peds doctor agrees so it looks like I will be seeing more doctors with them since the immune doctor didn't add much. I don't mind taking them I just hope it helps. We are in San , Texas. We just arrived here in San and I am making the rounds. The kids and I have been meeting all the specialist here. We have to break in the new doctors. Thanks for your help Theresa Dale Weatherford <dale@...> wrote: My son has bronchiectasis. My daughter gets > recurrent pneumonia and sinus infections. She is on her 16 > antibiotic this year for infections. > > They have seen an immunologist but they don't seem to fit totally in > the PID catagory. This has been our problem throughout. They don't > seem to fit anywhere. They don't know why he has bronchiectasis. > They don't know why they are adrenally insufficient. They don't > seem to know why they have no HIB antibodies (my son also has no > antibodies for tetanus and low for dip). All of their Ig levels > seem normal. > > I actually do not know if I belong here looking for answers but I > would like to know what you all think. What road do I need to > travel to get some answers? > from Dale, Mom to Katy, CVID, age 22, married Theresa, sorry I couldn't answer more fully last time. I had company arriving. When I just read through your post, it makes me wonder if you have found a doctor who is well versed with immune deficiencies. There are a lot of doctors who know to check the IgG level, but don't know what to do after that. Is your doctor recommending any other tests? You see, IgG levels are the easy part to check -- any doctor can do that. If the levels are low -- well, that's the problem. But in some cases the immune system is not functioning well even when the numbers are okay. The immune system is a very complex group of problems. If your doctor is not well versed in immune deficiencies (and most are not), I highly recommend that you and your family contact the Immune Defiency Foundation and get a recommendation to a Clinical Immunologist who can thoroughly check out your children. It certainly sounds to me that they are missing some important immune function -- like building antibodies and protecting the lungs. That tells me that something is seriously wrong. I would highly recommend a trip to National Jewish (since you mention that one) or finding another one near you. You may even have to travel out of state. If you want to post your general location to the group -- we may be able to recommend a doctor in your area. Maybe your doctor is doing these tests, and you are just asking questions in advance, but, if not, please seek a doctor who will do the testing. Now, it's expensive to see a doctor out of your area -- but you only need to do it once in order to get the initial diagnosis and there are ways to make it less expensive. After that they should be able to work with your pediatrician to maintain their health. But, it is vitally important to get a definite diagnosis. Your child has already experienced lung damage and if we could prevent further damage, it would be well worth a trip to a higher level doctor. Please, please, please, talk to the Immune Deficiency Foundation about finding a doctor to thoroughly check out their immune function and get them help. It's not enough to say that their IgG levels are okay. We have a lot of kids on this site whose numbers are fine -- but the function is not. There are additional tests that need to be done to determine what's missing. Please, please, look into finding a clinical immunologist who can do thorough testing. The Immune Deficiency Foundation's number is 1-800-296-4433 and they can direct you to an immunologist that is closest to your area. Let us know if you have further questions, In His service, dale __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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