Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 Hello all, Thanks so much for the comforting words and advice, I thought the appointment was just another brick wall thrown into my face. The infectious disease ped. Said my son didn't look sick and couldn't have a immune system problem, she told me that kids with a compromised immune system struggle to gain weight. I had never heard of that the whole time I have been doing research. I did question her about why he was getting sick to often and she told me that kids are suppose to get sick 18+ times a year! So everything in a nut shell she was trying to tell me this is all normal. I demanded her to do a blood test so we can find out for sure. She had them draw his blood and they are going to test it for all the immune defiency stuff they also did a chest x-ray because she wanted to know what his lungs looked like when he isn't sick. So now we wait.... Thanks april_rock <april_rock@...> wrote: Just checking in to see how your son's infectious disease appt went? did they run a bunch of tests? Hope they are able to find something out soon!! APril > > She told me she hasn't seen a child get this sick so > often she calculated that my son is sick every 2-3 weeks. > > Hi , > This sounds similar to my son's pattern of infections before starting IVIG. He was sick every 2-3 weeks and his Ped refused to send him to an Immuno or test his immune system. I finally fired his Ped and we got proper help. > At first, I didn't want to put my son on Immunoglobins, because it was just ONE MORE THING for him to go through. He is also a cardiac kid--and has had three open heart surgeries. But the last year when he was sick so often, his spirit just started to sag. He was no longer the happy child, but angry and upset a lot. > The Immunologist suspected that first day that Bri had CVID, but didn't tell me until the bloodwork came back. After starting IVIG, Bri did not have one single ear or strep infection. He still has an occasional sinus infection, but that is to be expected. He can go to school now, without getting Pneumonia! > I just wanted to encourage you that you are doing the right thing. Don't stop until you get answers that you know make sense and are right!!! Please let us know what happens at the appointment. > Sandi, Mom to , age 15--CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 I am so sorry. But to me it does not make sense that she sent you to a ID doc and not an immunoligist. Did you Breastfeed your son? I am asking because sometimes if you did and then stopped a couple months later some kids get sick because their own systems have a hard time kicking in. Just a thought. BARBIE Re: ~ how'd appt go? Hello all, Thanks so much for the comforting words and advice, I thought the appointment was just another brick wall thrown into my face. The infectious disease ped. Said my son didn't look sick and couldn't have a immune system problem, she told me that kids with a compromised immune system struggle to gain weight. I had never heard of that the whole time I have been doing research. I did question her about why he was getting sick to often and she told me that kids are suppose to get sick 18+ times a year! So everything in a nut shell she was trying to tell me this is all normal. I demanded her to do a blood test so we can find out for sure. She had them draw his blood and they are going to test it for all the immune defiency stuff they also did a chest x-ray because she wanted to know what his lungs looked like when he isn't sick. So now we wait.... Thanks april_rock <april_rock (DOT) com> wrote: Just checking in to see how your son's infectious disease appt went? did they run a bunch of tests? Hope they are able to find something out soon!! APril > > She told me she hasn't seen a child get this sick so > often she calculated that my son is sick every 2-3 weeks. > > Hi , > This sounds similar to my son's pattern of infections before starting IVIG. He was sick every 2-3 weeks and his Ped refused to send him to an Immuno or test his immune system. I finally fired his Ped and we got proper help. > At first, I didn't want to put my son on Immunoglobins, because it was just ONE MORE THING for him to go through. He is also a cardiac kid--and has had three open heart surgeries. But the last year when he was sick so often, his spirit just started to sag. He was no longer the happy child, but angry and upset a lot. > The Immunologist suspected that first day that Bri had CVID, but didn't tell me until the bloodwork came back. After starting IVIG, Bri did not have one single ear or strep infection. He still has an occasional sinus infection, but that is to be expected. He can go to school now, without getting Pneumonia! > I just wanted to encourage you that you are doing the right thing. Don't stop until you get answers that you know make sense and are right!!! Please let us know what happens at the appointment. > Sandi, Mom to , age 15--CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 heather i am so sorry, what a fristrating time..why cant these Drs get their ego out of the way? I end up asking that alot!! I hope some of the tests come back quick..i know the IgG, A,M,E and sub IgG's came back in a few days on my son...apparently we are still waiting on others...said it could take up to 2 wks... April --- Shaheen <heatheranneshaheen@...> wrote: > Hello all, > > Thanks so much for the comforting words and > advice, I thought the appointment was just another > brick wall thrown into my face. > The infectious disease ped. Said my son didn't > look sick and couldn't have a immune system problem, > she told me that kids with a compromised immune > system struggle to gain weight. I had never heard of > that the whole time I have been doing research. I > did question her about why he was getting sick to > often and she told me that kids are suppose to get > sick 18+ times a year! > So everything in a nut shell she was trying to > tell me this is all normal. > I demanded her to do a blood test so we can find > out for sure. > > She had them draw his blood and they are going to > test it for all the immune defiency stuff they also > did a chest x-ray because she wanted to know what > his lungs looked like when he isn't sick. > > So now we wait.... > > Thanks > > april_rock <april_rock@...> wrote: > Just checking in to see how your son's > infectious disease appt went? > did they run a bunch of tests? Hope they are able to > find something > out soon!! > > APril > > > > > > She told me she hasn't seen a child get this sick > so > > often she calculated that my son is sick every 2-3 > weeks. > > > > Hi , > > This sounds similar to my son's pattern of > infections before > starting IVIG. He was sick every 2-3 weeks and his > Ped refused to > send him to an Immuno or test his immune system. I > finally fired his > Ped and we got proper help. > > At first, I didn't want to put my son on > Immunoglobins, because > it was just ONE MORE THING for him to go through. He > is also a > cardiac kid--and has had three open heart surgeries. > But the last > year when he was sick so often, his spirit just > started to sag. He > was no longer the happy child, but angry and upset a > lot. > > The Immunologist suspected that first day that Bri > had CVID, but > didn't tell me until the bloodwork came back. After > starting IVIG, > Bri did not have one single ear or strep infection. > He still has an > occasional sinus infection, but that is to be > expected. He can go to > school now, without getting Pneumonia! > > I just wanted to encourage you that you are doing > the right > thing. Don't stop until you get answers that you > know make sense and > are right!!! Please let us know what happens at the > appointment. > > Sandi, Mom to , age 15--CVID > > > > [Non-text portions of this message have been > removed] > > > > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with > Mobile. Try it now. > > [Non-text portions of this message have been > removed] > > When everything seems to be going against you, remember the airplane takes off against the wind, not with it. --Henry Ford ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 ---At our hospital, inf dis handles immunodeficiency and IVIG. I think it depends on the hospital. Our dr has been really good and is quite knowledgable. valarie In , Barbara Jimenez <mother5590@...> wrote: > > I am so sorry. But to me it does not make sense that she sent you to a ID doc and not an immunoligist. Did you Breastfeed your son? I am asking because sometimes if you did and then stopped a couple months later some kids get sick because their own systems have a hard time kicking in. Just a thought. > > BARBIE > > > > Re: ~ how'd appt go? > > Hello all, > > Thanks so much for the comforting words and advice, I thought the appointment was just another brick wall thrown into my face. > The infectious disease ped. Said my son didn't look sick and couldn't have a immune system problem, she told me that kids with a compromised immune system struggle to gain weight. I had never heard of that the whole time I have been doing research. I did question her about why he was getting sick to often and she told me that kids are suppose to get sick 18+ times a year! > So everything in a nut shell she was trying to tell me this is all normal. > I demanded her to do a blood test so we can find out for sure. > > She had them draw his blood and they are going to test it for all the immune defiency stuff they also did a chest x-ray because she wanted to know what his lungs looked like when he isn't sick. > > So now we wait.... > > Thanks > > april_rock <april_rock (DOT) com> wrote: > Just checking in to see how your son's infectious disease appt went? > did they run a bunch of tests? Hope they are able to find something > out soon!! > > APril > > > > > > She told me she hasn't seen a child get this sick so > > often she calculated that my son is sick every 2-3 weeks. > > > > Hi , > > This sounds similar to my son's pattern of infections before > starting IVIG. He was sick every 2-3 weeks and his Ped refused to > send him to an Immuno or test his immune system. I finally fired his > Ped and we got proper help. > > At first, I didn't want to put my son on Immunoglobins, because > it was just ONE MORE THING for him to go through. He is also a > cardiac kid--and has had three open heart surgeries. But the last > year when he was sick so often, his spirit just started to sag. He > was no longer the happy child, but angry and upset a lot. > > The Immunologist suspected that first day that Bri had CVID, but > didn't tell me until the bloodwork came back. After starting IVIG, > Bri did not have one single ear or strep infection. He still has an > occasional sinus infection, but that is to be expected. He can go to > school now, without getting Pneumonia! > > I just wanted to encourage you that you are doing the right > thing. Don't stop until you get answers that you know make sense and > are right!!! Please let us know what happens at the appointment. > > Sandi, Mom to , age 15--CVID > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 " kids are suppose to get sick 18+ times a year! " DO WHAT???? Find another dr. (just my opinion!) My son was overweight when he finally got diagnosed due to all of the steroids he had been fed for all of his infections. It's been a year since diagnosis and he still has some weight on him. That's like saying all PIDD kids are blond and blue eyed. They do not know enough about this to make that kind of a statement. Every child is different. (Sorry, but that struck a nerve for me. Even though I don't know as much as some of these Mom's, I do know from our experience, weight has not been the issue. His health, or lack of, has.) Where are you located? I would love for you to see our dr in Montgomery, Al. LOL www.caringbridge.org/visit/alexsmith @...: heatheranneshaheen@...: Tue, 26 Feb 2008 19:38:38 -0800Subject: Re: ~ how'd appt go? Hello all,Thanks so much for the comforting words and advice, I thought the appointment was just another brick wall thrown into my face.The infectious disease ped. Said my son didn't look sick and couldn't have a immune system problem, she told me that kids with a compromised immune system struggle to gain weight. I had never heard of that the whole time I have been doing research. I did question her about why he was getting sick to often and she told me that kids are suppose to get sick 18+ times a year!So everything in a nut shell she was trying to tell me this is all normal.I demanded her to do a blood test so we can find out for sure.She had them draw his blood and they are going to test it for all the immune defiency stuff they also did a chest x-ray because she wanted to know what his lungs looked like when he isn't sick.So now we wait....Thanks april_rock <april_rock@...> wrote:Just checking in to see how your son's infectious disease appt went?did they run a bunch of tests? Hope they are able to find something out soon!!APril>> She told me she hasn't seen a child get this sick so > often she calculated that my son is sick every 2-3 weeks.> > Hi ,> This sounds similar to my son's pattern of infections before starting IVIG. He was sick every 2-3 weeks and his Ped refused to send him to an Immuno or test his immune system. I finally fired his Ped and we got proper help.> At first, I didn't want to put my son on Immunoglobins, because it was just ONE MORE THING for him to go through. He is also a cardiac kid--and has had three open heart surgeries. But the last year when he was sick so often, his spirit just started to sag. He was no longer the happy child, but angry and upset a lot.> The Immunologist suspected that first day that Bri had CVID, but didn't tell me until the bloodwork came back. After starting IVIG, Bri did not have one single ear or strep infection. He still has an occasional sinus infection, but that is to be expected. He can go to school now, without getting Pneumonia!> I just wanted to encourage you that you are doing the right thing. Don't stop until you get answers that you know make sense and are right!!! Please let us know what happens at the appointment.> Sandi, Mom to , age 15--CVID> > [Non-text portions of this message have been removed]>---------------------------------Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 AS if being OBESE means that people are healthy. I know I am talking extremes. BARBIE Re: ~ how'd appt go? Hello all,Thanks so much for the comforting words and advice, I thought the appointment was just another brick wall thrown into my face.The infectious disease ped. Said my son didn't look sick and couldn't have a immune system problem, she told me that kids with a compromised immune system struggle to gain weight. I had never heard of that the whole time I have been doing research. I did question her about why he was getting sick to often and she told me that kids are suppose to get sick 18+ times a year!So everything in a nut shell she was trying to tell me this is all normal.I demanded her to do a blood test so we can find out for sure.She had them draw his blood and they are going to test it for all the immune defiency stuff they also did a chest x-ray because she wanted to know what his lungs looked like when he isn't sick.So now we wait....Thanks april_ rock <april_rock (DOT) com> wrote:Just checking in to see how your son's infectious disease appt went?did they run a bunch of tests? Hope they are able to find something out soon!!APril- -- In groups (DOT) com, sassykay59@. .. wrote:>> She told me she hasn't seen a child get this sick so > often she calculated that my son is sick every 2-3 weeks.> > Hi ,> This sounds similar to my son's pattern of infections before starting IVIG. He was sick every 2-3 weeks and his Ped refused to send him to an Immuno or test his immune system. I finally fired his Ped and we got proper help.> At first, I didn't want to put my son on Immunoglobins, because it was just ONE MORE THING for him to go through. He is also a cardiac kid--and has had three open heart surgeries. But the last year when he was sick so often, his spirit just started to sag. He was no longer the happy child, but angry and upset a lot.> The Immunologist suspected that first day that Bri had CVID, but didn't tell me until the bloodwork came back. After starting IVIG, Bri did not have one single ear or strep infection. He still has an occasional sinus infection, but that is to be expected. He can go to school now, without getting Pneumonia!> I just wanted to encourage you that you are doing the right thing. Don't stop until you get answers that you know make sense and are right!!! Please let us know what happens at the appointment. > Sandi, Mom to , age 15--CVID> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 I have to chime in on this one. We have a new immunologist (due to a cross country move) who doesn't believe my son has CVID either. One of his big " criteria " is that my son is overweight (thank you steriods). Every time we've gone to him, he's weighed my son and blamed his asthma, tiredness, fatigue, etc. on his weight (we're talking 20 or 30 pounds on a 6' tall teen). It has made me furious. I would find a new doctor if you could. Unfortunately for us, now that my son's been off SCIG for many months (due to the brilliant doctor), he refuses to see a new doctor or to restart treatment. He " likes " not having CVID or the treatments. Doctors like this are a nightmare. You have my sympathy. Sue in NY On Wed, Feb 27, 2008 at 10:43 AM, Barbara Jimenez <mother5590@...> wrote: > AS if being OBESE means that people are healthy. I know I am talking > extremes. > > BARBIE > > Re: ~ how'd appt go? > > Hello all,Thanks so much for the comforting words and advice, I thought > the appointment was just another brick wall thrown into my face.Theinfectious disease ped. Said my son didn't look sick and couldn't have a > immune system problem, she told me that kids with a compromised immune > system struggle to gain weight. I had never heard of that the whole time I > have been doing research. I did question her about why he was getting sick > to often and she told me that kids are suppose to get sick 18+ times a > year!So everything in a nut shell she was trying to tell me this is all > normal.I demanded her to do a blood test so we can find out for sure.Shehad them draw his blood and they are going to test it for all the immune > defiency stuff they also did a chest x-ray because she wanted to know what > his lungs looked like when he isn't sick.So now we wait....Thanks > april_ rock <april_rock (DOT) com> wrote:Just checking in to see > how your son's infectious > disease appt went?did they run a bunch of tests? Hope they are able to > find something out soon!!APril- -- In groups (DOT) com, > sassykay59@. .. wrote:>> She told me she hasn't seen a child get this sick > so > often she calculated that my son is sick every 2-3 weeks.> > Hi > ,> This sounds similar to my son's pattern of infections before > starting IVIG. He was sick every 2-3 weeks and his Ped refused to send him > to an Immuno or test his immune system. I finally fired his Ped and we got > proper help.> At first, I didn't want to put my son on Immunoglobins, > because it was just ONE MORE THING for him to go through. He is also a > cardiac kid--and has had three open heart surgeries. But the last year when > he was sick so often, his spirit just started to sag. He was no longer the > happy child, but angry and upset a lot.> The Immunologist suspected that > first day that Bri had CVID, but didn't tell me until the bloodwork came > back. After starting IVIG, Bri > did not have one single ear or strep infection. He still has an occasional > sinus infection, but that is to be expected. He can go to school now, > without getting Pneumonia!> I just wanted to encourage you that you are > doing the right thing. Don't stop until you get answers that you know make > sense and are right!!! Please let us know what happens at the appointment. > > Sandi, Mom to , age 15--CVID> > [Non-text portions of this message have > been removed]>--- --------- --------- --------- ---Be a better friend, > newshound, and know-it-all with Mobile. Try it now.[Non-text portions > of this message have been removed] > > ____________ _________ _________ _________ _________ _________ _ > > Shed those extra pounds with MSN and The Biggest Loser! > > http://biggestloser .msn.com/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Hi.. Yes I was shocked when she said that to me, I felt like she was acting like this was all a waste of her time and she had better things to do. I hope that if the blood test results come back and indiacate a problem, that she changes her tune. I would get another doc, but I was referred to her from my new ped who suspected a problem and wanted him to get tested. I really don't think kids are suppose to get sick that much especially every month. My kids have all been very healthy. Why is it such a coincidence that he starts having trouble fighting off infections right at 11 months old 25 days before his first birthday. That is why my ped thinks he has a immune system problem. The whole thing about the mother protecting her baby with her antibodies, but the mother can't protect there baby forever, so at a year old the babys body is suppose to start fighting off infections and building the immune system. I am absolutely sure he has some kind of compromised immune system problem. And if he doesn't and the blood tests show everything normal, then I will believe it. But I am not just going to believe a doc who tells me, without doing tests! Thanks again for all the heart warming advice,I truly don't know what I would do with out this group! Thanks laura smith <iamlaurasmith@...> wrote: " kids are suppose to get sick 18+ times a year! " DO WHAT???? Find another dr. (just my opinion!) My son was overweight when he finally got diagnosed due to all of the steroids he had been fed for all of his infections. It's been a year since diagnosis and he still has some weight on him. That's like saying all PIDD kids are blond and blue eyed. They do not know enough about this to make that kind of a statement. Every child is different. (Sorry, but that struck a nerve for me. Even though I don't know as much as some of these Mom's, I do know from our experience, weight has not been the issue. His health, or lack of, has.) Where are you located? I would love for you to see our dr in Montgomery, Al. LOL www.caringbridge.org/visit/alexsmith @...: heatheranneshaheen@...: Tue, 26 Feb 2008 19:38:38 -0800Subject: Re: ~ how'd appt go? Hello all,Thanks so much for the comforting words and advice, I thought the appointment was just another brick wall thrown into my face.The infectious disease ped. Said my son didn't look sick and couldn't have a immune system problem, she told me that kids with a compromised immune system struggle to gain weight. I had never heard of that the whole time I have been doing research. I did question her about why he was getting sick to often and she told me that kids are suppose to get sick 18+ times a year!So everything in a nut shell she was trying to tell me this is all normal.I demanded her to do a blood test so we can find out for sure.She had them draw his blood and they are going to test it for all the immune defiency stuff they also did a chest x-ray because she wanted to know what his lungs looked like when he isn't sick.So now we wait....Thanks april_rock <april_rock@...> wrote:Just checking in to see how your son's infectious disease appt went?did they run a bunch of tests? Hope they are able to find something out soon!!APril--- In , sassykay59@... wrote:>> She told me she hasn't seen a child get this sick so > often she calculated that my son is sick every 2-3 weeks.> > Hi ,> This sounds similar to my son's pattern of infections before starting IVIG. He was sick every 2-3 weeks and his Ped refused to send him to an Immuno or test his immune system. I finally fired his Ped and we got proper help.> At first, I didn't want to put my son on Immunoglobins, because it was just ONE MORE THING for him to go through. He is also a cardiac kid--and has had three open heart surgeries. But the last year when he was sick so often, his spirit just started to sag. He was no longer the happy child, but angry and upset a lot.> The Immunologist suspected that first day that Bri had CVID, but didn't tell me until the bloodwork came back. After starting IVIG, Bri did not have one single ear or strep infection. He still has an occasional sinus infection, but that is to be expected. He can go to school now, without getting Pneumonia!> I just wanted to encourage you that you are doing the right thing. Don't stop until you get answers that you know make sense and are right!!! Please let us know what happens at the appointment.> Sandi, Mom to , age 15--CVID> > [Non-text portions of this message have been removed]>---------------------------------Be a better friend, newshound, and know-it-all with Mobile. Try it now.[Non-text portions of this message have been removed] __________________________________________________________ Shed those extra pounds with MSN and The Biggest Loser! http://biggestloser.msn.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Shaheen <heatheranneshaheen@...> wrote: >>>>>>>>>>>I did question her about why he was getting sick so often and she told me that kids are suppose to get sick 18+ times a year!<<<<<<<<< Ironically, my child's primary symptom of an immune deficiency was that he was almost never sick & could not stay sick for more than a few hours when he did get sick. Then after his short-lived illnesses, he declined in cognitive abilities, fine and gross motor and had no energy for weeks. He had low IgG and IgM. - --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 I will second the idea of seeing an immunologist over seeing an infectious disease specialist. We have seen both and while both were very competent doctors and treated us well I just thought the immunologist had a firmer grasp on the PID syndrome. Our ID doc had many types of patients in his office, from those with odd skin infections or the weird body infection to those with HIV/AIDS. He then tried to take on my CVID husband. He was pretty good about not trying to compare my husband to his AIDS patients but would slip up every now and then. Eventually he admitted he didn't know the whole gamut of PID labs and treatments and refereed us to an immunologist in a city 3 hours away. Ursula - mom to (14) and Macey (12, CVID) http://www.primaryimmune.org http://www.jmfworld.org http://caringbridge.org/ga/macey/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 " I would get another doc, but I was referred to her from my new ped who suspected a problem and wanted him to get tested " I would encourage you to call the IDF and get suggestions for immunos in your area. You can always say that a " disease specific organization " said to get a full workup by an immuno. Your peds doc will either appreciate that you took the bull by the horns or will be annoyed that you are advocating for your child and, in that case, I'd consider finding another doc... (Before my daughter was diagnosed, we tried to work with our docs and not step on egos...all big missteps when you have a PID child that needs a proper workup. It took us 1 year and 20 minutes for a correct diagnosis. The 20 minutes diagnosis occurred with an immuno that the IDF is familiar with.) http://www.primaryimmune.org/contact.asp " I am absolutely sure he has some kind of compromised immune system problem. " Then, you must make sure that proper testing is done. Even with the best docs, blood does get lost, the wrong tests are run, etc. You need to familiarize yourself with the tests that are required and be systematic in making sure that they were done and you have the results on hand. There is a tendency for docs that are biased (e.g., focusing on appearance v. clinical symptoms) to interpret results to support their view--rather than really looking at the labs in terms of the clinical symptoms. A PID is based on laboratory work *and* clinical. So, if the doctor is not looking at the clinical picture (and it sounds like your ID doc is not) then the lab work may not be properly interpreted. I'd make sure that you can get an objective pair of eyes to look at the results...once they are in. " And if he doesn't and the blood tests show everything normal, then I will believe it. " Also, keep in mind that most children here have had repeat studies. It is unusual to be diagnosed with a PID, or have it completely ruled out on the basis on 1 set of early phase tests. For examples, IgG, IgA, IgM, and titer levels are helpful but one can have a much more complex immune problem that involves other pathways. That's why you need an immuno for a complete workup. Best wishes, mom to CVIDer Quote Link to comment Share on other sites More sharing options...
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