Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Good morning- I have been on the sidelines reading posts for quite some time. I don't think I've ever posted but now I'm hoping someone can help me My son is 18 and was diagnosed with PID when he was 6. He received IVIG every 3 weeks until he was around 10 when he was 'trialed' off but failed. He was put back on IVIG until 3/2010 when we decided to 'trial' him off again. He received pre and post pneumococcal titers about 4 months after stopping IVIG and mounted a slight response and his IGG was around 650. He was doing okay until October 2011 when he started having sinus infections. His IGG and titers were assessed again and his IGG was 538 and the pneumococcal hadn't changed. From October 2011 to January 2012 he has had 4 sinus infections. We re-assessed his IGG and titers. His IGG is now 415 and his pneumococcal titers have dropped... With that being said, his immunologist has changed is diagnoses from PID to CVID. What is the difference betweent he two? And, right now he is covered through BCMH to pay for this infusions which will start soon. What are my options for payment when he reaches the age of 21 when the insurance doesn't pay for it? Thank you so much for ANY help I am BEYOND upset that the infusions have to restart; he is also very upset... If you would prefer to contact me privately, my email is sds44001@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 He is still in H.S. Re: CVID Full time employment for him with decent benefits. Is he a full time college student? Ursula mom to Macey (16, CVID) wife to Les (CVID) On Jan 20, 2012, at 9:33 AM, " Molly " <sds44001@...> wrote: > Good morning- > I have been on the sidelines reading posts for quite some time. I don't think I've ever posted but now I'm hoping someone can help me > > My son is 18 and was diagnosed with PID when he was 6. He received IVIG every 3 weeks until he was around 10 when he was 'trialed' off but failed. He was put back on IVIG until 3/2010 when we decided to 'trial' him off again. He received pre and post pneumococcal titers about 4 months after stopping IVIG and mounted a slight response and his IGG was around 650. He was doing okay until October 2011 when he started having sinus infections. His IGG and titers were assessed again and his IGG was 538 and the pneumococcal hadn't changed. From October 2011 to January 2012 he has had 4 sinus infections. We re-assessed his IGG and titers. His IGG is now 415 and his pneumococcal titers have dropped... > > With that being said, his immunologist has changed is diagnoses from PID to CVID. > > What is the difference betweent he two? > And, right now he is covered through BCMH to pay for this infusions which will start soon. What are my options for payment when he reaches the age of 21 when the insurance doesn't pay for it? > > Thank you so much for ANY help > > I am BEYOND upset that the infusions have to restart; he is also very upset... > > If you would prefer to contact me privately, my email is sds44001@.... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 He is still in H.S. Re: CVID Full time employment for him with decent benefits. Is he a full time college student? Ursula mom to Macey (16, CVID) wife to Les (CVID) On Jan 20, 2012, at 9:33 AM, " Molly " <sds44001@...> wrote: > Good morning- > I have been on the sidelines reading posts for quite some time. I don't think I've ever posted but now I'm hoping someone can help me > > My son is 18 and was diagnosed with PID when he was 6. He received IVIG every 3 weeks until he was around 10 when he was 'trialed' off but failed. He was put back on IVIG until 3/2010 when we decided to 'trial' him off again. He received pre and post pneumococcal titers about 4 months after stopping IVIG and mounted a slight response and his IGG was around 650. He was doing okay until October 2011 when he started having sinus infections. His IGG and titers were assessed again and his IGG was 538 and the pneumococcal hadn't changed. From October 2011 to January 2012 he has had 4 sinus infections. We re-assessed his IGG and titers. His IGG is now 415 and his pneumococcal titers have dropped... > > With that being said, his immunologist has changed is diagnoses from PID to CVID. > > What is the difference betweent he two? > And, right now he is covered through BCMH to pay for this infusions which will start soon. What are my options for payment when he reaches the age of 21 when the insurance doesn't pay for it? > > Thank you so much for ANY help > > I am BEYOND upset that the infusions have to restart; he is also very upset... > > If you would prefer to contact me privately, my email is sds44001@.... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 I could swear I read that they can be covered under parents until age 26 in certain circumstances, It was in an issue of Ig Living in the past year or so I think (back issues are online I think). As long as he's getting an education he can be covered though college I believe and then he will need to get a good job with great insurance but he might want to consider SCIG as its cheaper (meaning more likely to be able to afford huge co pays or full cost OOP), can be done at home and he won't miss work for an infusion when the time comes. Your post kinda scares me, was he healthy the year he was off IG? Were 6 months off and doing great, planning a major move in fact since we don't need to be tied to our immuno and states insurance but if they can crash and burn after that long off its worrisome but I look at your sons numbers and can't figure out why they pulled him off in the first place. I've always been told IG needs to be around the 1000 mark, especially in someone who can't mount and hold a full response. ---- " S. " <sds44001@...> wrote: > He is still in H.S. > > Re: CVID > > Full time employment for him with decent benefits. Is he a full time college student? > > Ursula > mom to Macey (16, CVID) wife to Les (CVID) > > On Jan 20, 2012, at 9:33 AM, " Molly " <sds44001@...> wrote: > > > Good morning- > > I have been on the sidelines reading posts for quite some time. I don't think I've ever posted but now I'm hoping someone can help me > > > > My son is 18 and was diagnosed with PID when he was 6. He received IVIG every 3 weeks until he was around 10 when he was 'trialed' off but failed. He was put back on IVIG until 3/2010 when we decided to 'trial' him off again. He received pre and post pneumococcal titers about 4 months after stopping IVIG and mounted a slight response and his IGG was around 650. He was doing okay until October 2011 when he started having sinus infections. His IGG and titers were assessed again and his IGG was 538 and the pneumococcal hadn't changed. From October 2011 to January 2012 he has had 4 sinus infections. We re-assessed his IGG and titers. His IGG is now 415 and his pneumococcal titers have dropped... > > > > With that being said, his immunologist has changed is diagnoses from PID to CVID. > > > > What is the difference betweent he two? > > And, right now he is covered through BCMH to pay for this infusions which will start soon. What are my options for payment when he reaches the age of 21 when the insurance doesn't pay for it? > > > > Thank you so much for ANY help > > > > I am BEYOND upset that the infusions have to restart; he is also very upset... > > > > If you would prefer to contact me privately, my email is sds44001@.... > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 I could swear I read that they can be covered under parents until age 26 in certain circumstances, It was in an issue of Ig Living in the past year or so I think (back issues are online I think). As long as he's getting an education he can be covered though college I believe and then he will need to get a good job with great insurance but he might want to consider SCIG as its cheaper (meaning more likely to be able to afford huge co pays or full cost OOP), can be done at home and he won't miss work for an infusion when the time comes. Your post kinda scares me, was he healthy the year he was off IG? Were 6 months off and doing great, planning a major move in fact since we don't need to be tied to our immuno and states insurance but if they can crash and burn after that long off its worrisome but I look at your sons numbers and can't figure out why they pulled him off in the first place. I've always been told IG needs to be around the 1000 mark, especially in someone who can't mount and hold a full response. ---- " S. " <sds44001@...> wrote: > He is still in H.S. > > Re: CVID > > Full time employment for him with decent benefits. Is he a full time college student? > > Ursula > mom to Macey (16, CVID) wife to Les (CVID) > > On Jan 20, 2012, at 9:33 AM, " Molly " <sds44001@...> wrote: > > > Good morning- > > I have been on the sidelines reading posts for quite some time. I don't think I've ever posted but now I'm hoping someone can help me > > > > My son is 18 and was diagnosed with PID when he was 6. He received IVIG every 3 weeks until he was around 10 when he was 'trialed' off but failed. He was put back on IVIG until 3/2010 when we decided to 'trial' him off again. He received pre and post pneumococcal titers about 4 months after stopping IVIG and mounted a slight response and his IGG was around 650. He was doing okay until October 2011 when he started having sinus infections. His IGG and titers were assessed again and his IGG was 538 and the pneumococcal hadn't changed. From October 2011 to January 2012 he has had 4 sinus infections. We re-assessed his IGG and titers. His IGG is now 415 and his pneumococcal titers have dropped... > > > > With that being said, his immunologist has changed is diagnoses from PID to CVID. > > > > What is the difference betweent he two? > > And, right now he is covered through BCMH to pay for this infusions which will start soon. What are my options for payment when he reaches the age of 21 when the insurance doesn't pay for it? > > > > Thank you so much for ANY help > > > > I am BEYOND upset that the infusions have to restart; he is also very upset... > > > > If you would prefer to contact me privately, my email is sds44001@.... > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Under the new insurance stuff you can keep your children on your insurance until the age of 26. They did this in the hopes of helping those young adults keep insurance until they are able to find a good job with benefits. So that should not be a huge concern yet. CVID (Common Variable Immunodeficiency Disorder) is a type of PID (Primary Immunodeficiency Disorder). I am surprised you were able to get insurance coverage for infusions with just the diagnosis of PID, but all insurances are different. As for the previous person asking why he was taken off infusions with those Ig numbers...everybody functions at different levels. My son's numbers are not near 1000 even on infusions, but his infections have gone down so much that the Immunologist feels good with his current levels. Some people need to be closer to 1200+ to have less infections. Most Immunologists treat the patient's symptoms so if at those numbers her son was pretty much infection-free then they probably felt it was ok to trial off of the infusions. All doctors and patients are so different which makes it so hard to compare treatments and numbers. > > Good morning- > I have been on the sidelines reading posts for quite some time. I don't think I've ever posted but now I'm hoping someone can help me > > My son is 18 and was diagnosed with PID when he was 6. He received IVIG every 3 weeks until he was around 10 when he was 'trialed' off but failed. He was put back on IVIG until 3/2010 when we decided to 'trial' him off again. He received pre and post pneumococcal titers about 4 months after stopping IVIG and mounted a slight response and his IGG was around 650. He was doing okay until October 2011 when he started having sinus infections. His IGG and titers were assessed again and his IGG was 538 and the pneumococcal hadn't changed. From October 2011 to January 2012 he has had 4 sinus infections. We re-assessed his IGG and titers. His IGG is now 415 and his pneumococcal titers have dropped... > > With that being said, his immunologist has changed is diagnoses from PID to CVID. > > What is the difference betweent he two? > And, right now he is covered through BCMH to pay for this infusions which will start soon. What are my options for payment when he reaches the age of 21 when the insurance doesn't pay for it? > > Thank you so much for ANY help > > I am BEYOND upset that the infusions have to restart; he is also very upset... > > If you would prefer to contact me privately, my email is sds44001@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Under the new insurance stuff you can keep your children on your insurance until the age of 26. They did this in the hopes of helping those young adults keep insurance until they are able to find a good job with benefits. So that should not be a huge concern yet. CVID (Common Variable Immunodeficiency Disorder) is a type of PID (Primary Immunodeficiency Disorder). I am surprised you were able to get insurance coverage for infusions with just the diagnosis of PID, but all insurances are different. As for the previous person asking why he was taken off infusions with those Ig numbers...everybody functions at different levels. My son's numbers are not near 1000 even on infusions, but his infections have gone down so much that the Immunologist feels good with his current levels. Some people need to be closer to 1200+ to have less infections. Most Immunologists treat the patient's symptoms so if at those numbers her son was pretty much infection-free then they probably felt it was ok to trial off of the infusions. All doctors and patients are so different which makes it so hard to compare treatments and numbers. > > Good morning- > I have been on the sidelines reading posts for quite some time. I don't think I've ever posted but now I'm hoping someone can help me > > My son is 18 and was diagnosed with PID when he was 6. He received IVIG every 3 weeks until he was around 10 when he was 'trialed' off but failed. He was put back on IVIG until 3/2010 when we decided to 'trial' him off again. He received pre and post pneumococcal titers about 4 months after stopping IVIG and mounted a slight response and his IGG was around 650. He was doing okay until October 2011 when he started having sinus infections. His IGG and titers were assessed again and his IGG was 538 and the pneumococcal hadn't changed. From October 2011 to January 2012 he has had 4 sinus infections. We re-assessed his IGG and titers. His IGG is now 415 and his pneumococcal titers have dropped... > > With that being said, his immunologist has changed is diagnoses from PID to CVID. > > What is the difference betweent he two? > And, right now he is covered through BCMH to pay for this infusions which will start soon. What are my options for payment when he reaches the age of 21 when the insurance doesn't pay for it? > > Thank you so much for ANY help > > I am BEYOND upset that the infusions have to restart; he is also very upset... > > If you would prefer to contact me privately, my email is sds44001@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 My son jacobs levels are around 700 and before he started ivig treatments they were at 1100 and he started ivig due to the frequency and severity of infections. So you really need to take the whole situation into consideration. I am also so stressed and worried about trying " trialing off " -justine (mom of jacob 6 SAD) On Jan 20, 2012 10:49 AM, " S. " <sds44001@...> wrote: > > You are right April, our immunologist felt his numbers were okay and he > didn't have infections until WELL after being off IVIG. He wasn't started > on IVIG just on the diagnosis of PID. When he was around 5, he had 5 > pneumonias within 1 1/2 years...he was a sick little boy. I don't know how > to handle the diagnoses with him. He is really upset. It was HIS choice > to start on the IVIG in October but he said NO. He wanted to wait and see. > But when we saw the doc this week, and he was made aware of his IGG level > and his chances of a bad infection, he decided to go back on the. He is > really sad though. He does get his IVIG at home; it's the way to go if you > can. His immunologist has me scared because she told us that he is at > greater risk of cancer and autoimmune troubles. Those scare me to death. > I'm really glad I found this support group. I've really never needed it > until now. Our daughter was on IVIG for 2 1/2 years but thankfully outgrew > her deficiency. Thank you all for the information you have offered. > > From: n2katz2003@... > Date: Fri, 20 Jan 2012 15:44:19 +0000 > Subject: Re: CVID > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Under the new insurance stuff you can keep your children on your > insurance until the age of 26. They did this in the hopes of helping those > young adults keep insurance until they are able to find a good job with > benefits. So that should not be a huge concern yet. > > > > CVID (Common Variable Immunodeficiency Disorder) is a type of PID (Primary > Immunodeficiency Disorder). I am surprised you were able to get insurance > coverage for infusions with just the diagnosis of PID, but all insurances > are different. > > > > As for the previous person asking why he was taken off infusions with > those Ig numbers...everybody functions at different levels. My son's > numbers are not near 1000 even on infusions, but his infections have gone > down so much that the Immunologist feels good with his current levels. > Some people need to be closer to 1200+ to have less infections. Most > Immunologists treat the patient's symptoms so if at those numbers her son > was pretty much infection-free then they probably felt it was ok to trial > off of the infusions. All doctors and patients are so different which > makes it so hard to compare treatments and numbers. > > > > > > > > > > Good morning- > > > I have been on the sidelines reading posts for quite some time. I don't > think I've ever posted but now I'm hoping someone can help me > > > > > > My son is 18 and was diagnosed with PID when he was 6. He received IVIG > every 3 weeks until he was around 10 when he was 'trialed' off but failed. > He was put back on IVIG until 3/2010 when we decided to 'trial' him off > again. He received pre and post pneumococcal titers about 4 months after > stopping IVIG and mounted a slight response and his IGG was around 650. He > was doing okay until October 2011 when he started having sinus infections. > His IGG and titers were assessed again and his IGG was 538 and the > pneumococcal hadn't changed. From October 2011 to January 2012 he has had > 4 sinus infections. We re-assessed his IGG and titers. His IGG is now 415 > and his pneumococcal titers have dropped... > > > > > > With that being said, his immunologist has changed is diagnoses from PID > to CVID. > > > > > > What is the difference betweent he two? > > > And, right now he is covered through BCMH to pay for this infusions > which will start soon. What are my options for payment when he reaches the > age of 21 when the insurance doesn't pay for it? > > > > > > Thank you so much for ANY help > > > > > > I am BEYOND upset that the infusions have to restart; he is also very > upset... > > > > > > If you would prefer to contact me privately, my email is sds44001@... > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 My son jacobs levels are around 700 and before he started ivig treatments they were at 1100 and he started ivig due to the frequency and severity of infections. So you really need to take the whole situation into consideration. I am also so stressed and worried about trying " trialing off " -justine (mom of jacob 6 SAD) On Jan 20, 2012 10:49 AM, " S. " <sds44001@...> wrote: > > You are right April, our immunologist felt his numbers were okay and he > didn't have infections until WELL after being off IVIG. He wasn't started > on IVIG just on the diagnosis of PID. When he was around 5, he had 5 > pneumonias within 1 1/2 years...he was a sick little boy. I don't know how > to handle the diagnoses with him. He is really upset. It was HIS choice > to start on the IVIG in October but he said NO. He wanted to wait and see. > But when we saw the doc this week, and he was made aware of his IGG level > and his chances of a bad infection, he decided to go back on the. He is > really sad though. He does get his IVIG at home; it's the way to go if you > can. His immunologist has me scared because she told us that he is at > greater risk of cancer and autoimmune troubles. Those scare me to death. > I'm really glad I found this support group. I've really never needed it > until now. Our daughter was on IVIG for 2 1/2 years but thankfully outgrew > her deficiency. Thank you all for the information you have offered. > > From: n2katz2003@... > Date: Fri, 20 Jan 2012 15:44:19 +0000 > Subject: Re: CVID > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Under the new insurance stuff you can keep your children on your > insurance until the age of 26. They did this in the hopes of helping those > young adults keep insurance until they are able to find a good job with > benefits. So that should not be a huge concern yet. > > > > CVID (Common Variable Immunodeficiency Disorder) is a type of PID (Primary > Immunodeficiency Disorder). I am surprised you were able to get insurance > coverage for infusions with just the diagnosis of PID, but all insurances > are different. > > > > As for the previous person asking why he was taken off infusions with > those Ig numbers...everybody functions at different levels. My son's > numbers are not near 1000 even on infusions, but his infections have gone > down so much that the Immunologist feels good with his current levels. > Some people need to be closer to 1200+ to have less infections. Most > Immunologists treat the patient's symptoms so if at those numbers her son > was pretty much infection-free then they probably felt it was ok to trial > off of the infusions. All doctors and patients are so different which > makes it so hard to compare treatments and numbers. > > > > > > > > > > Good morning- > > > I have been on the sidelines reading posts for quite some time. I don't > think I've ever posted but now I'm hoping someone can help me > > > > > > My son is 18 and was diagnosed with PID when he was 6. He received IVIG > every 3 weeks until he was around 10 when he was 'trialed' off but failed. > He was put back on IVIG until 3/2010 when we decided to 'trial' him off > again. He received pre and post pneumococcal titers about 4 months after > stopping IVIG and mounted a slight response and his IGG was around 650. He > was doing okay until October 2011 when he started having sinus infections. > His IGG and titers were assessed again and his IGG was 538 and the > pneumococcal hadn't changed. From October 2011 to January 2012 he has had > 4 sinus infections. We re-assessed his IGG and titers. His IGG is now 415 > and his pneumococcal titers have dropped... > > > > > > With that being said, his immunologist has changed is diagnoses from PID > to CVID. > > > > > > What is the difference betweent he two? > > > And, right now he is covered through BCMH to pay for this infusions > which will start soon. What are my options for payment when he reaches the > age of 21 when the insurance doesn't pay for it? > > > > > > Thank you so much for ANY help > > > > > > I am BEYOND upset that the infusions have to restart; he is also very > upset... > > > > > > If you would prefer to contact me privately, my email is sds44001@... > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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