We are still waiting on Ambry results. 2 negative sweat tests 7 & 8-super low.baby still sick - Pulmonoligist found low IGM level -32- in her bloodwrk-said we need to be seen by immunologist-this has definitely been a roller coaster ride-and not an amusing one- we go from one possible DX to another theory-I'm still pushing though-my pediatrician scoffed at the idea at anything other than the basic sweat test to diagnose CF-I'm changing her pediatrician-he's the one that sent me to the pulmo.doc.and has become a complete jack-ass in her treatment-He said the genetic testing is crazy and not true CF,he would not give me the referral for the immunologist until we had the bloodwork repeated-fine-I did it. I get that point-This baby has been sick for 5 months now, it's all her chest-I should get the results from the immunoglobulin panel tomm. Thanks for all your support along the way- Also, she wakes up from her naps and any sleeping time with her head drenched in sweat-WET-she has always done this-I feel like it's geting worse? Any experience with this? Thanks, Kelly.
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being sent to immunologist for low IGM?
- Thread starter AlexsMom
- Start date
We are still waiting on Ambry results. 2 negative sweat tests 7 & 8-super low.baby still sick - Pulmonoligist found low IGM level -32- in her bloodwrk-said we need to be seen by immunologist-this has definitely been a roller coaster ride-and not an amusing one- we go from one possible DX to another theory-I'm still pushing though-my pediatrician scoffed at the idea at anything other than the basic sweat test to diagnose CF-I'm changing her pediatrician-he's the one that sent me to the pulmo.doc.and has become a complete jack-ass in her treatment-He said the genetic testing is crazy and not true CF,he would not give me the referral for the immunologist until we had the bloodwork repeated-fine-I did it. I get that point-This baby has been sick for 5 months now, it's all her chest-I should get the results from the immunoglobulin panel tomm. Thanks for all your support along the way- Also, she wakes up from her naps and any sleeping time with her head drenched in sweat-WET-she has always done this-I feel like it's geting worse? Any experience with this? Thanks, Kelly.
We are still waiting on Ambry results. 2 negative sweat tests 7 & 8-super low.baby still sick - Pulmonoligist found low IGM level -32- in her bloodwrk-said we need to be seen by immunologist-this has definitely been a roller coaster ride-and not an amusing one- we go from one possible DX to another theory-I'm still pushing though-my pediatrician scoffed at the idea at anything other than the basic sweat test to diagnose CF-I'm changing her pediatrician-he's the one that sent me to the pulmo.doc.and has become a complete jack-ass in her treatment-He said the genetic testing is crazy and not true CF,he would not give me the referral for the immunologist until we had the bloodwork repeated-fine-I did it. I get that point-This baby has been sick for 5 months now, it's all her chest-I should get the results from the immunoglobulin panel tomm. Thanks for all your support along the way- Also, she wakes up from her naps and any sleeping time with her head drenched in sweat-WET-she has always done this-I feel like it's geting worse? Any experience with this? Thanks, Kelly.
We are still waiting on Ambry results. 2 negative sweat tests 7 & 8-super low.baby still sick - Pulmonoligist found low IGM level -32- in her bloodwrk-said we need to be seen by immunologist-this has definitely been a roller coaster ride-and not an amusing one- we go from one possible DX to another theory-I'm still pushing though-my pediatrician scoffed at the idea at anything other than the basic sweat test to diagnose CF-I'm changing her pediatrician-he's the one that sent me to the pulmo.doc.and has become a complete jack-ass in her treatment-He said the genetic testing is crazy and not true CF,he would not give me the referral for the immunologist until we had the bloodwork repeated-fine-I did it. I get that point-This baby has been sick for 5 months now, it's all her chest-I should get the results from the immunoglobulin panel tomm. Thanks for all your support along the way- Also, she wakes up from her naps and any sleeping time with her head drenched in sweat-WET-she has always done this-I feel like it's geting worse? Any experience with this? Thanks, Kelly.
We are still waiting on Ambry results. 2 negative sweat tests 7 & 8-super low.baby still sick - Pulmonoligist found low IGM level -32- in her bloodwrk-said we need to be seen by immunologist-this has definitely been a roller coaster ride-and not an amusing one- we go from one possible DX to another theory-I'm still pushing though-my pediatrician scoffed at the idea at anything other than the basic sweat test to diagnose CF-I'm changing her pediatrician-he's the one that sent me to the pulmo.doc.and has become a complete jack-ass in her treatment-He said the genetic testing is crazy and not true CF,he would not give me the referral for the immunologist until we had the bloodwork repeated-fine-I did it. I get that point-This baby has been sick for 5 months now, it's all her chest-I should get the results from the immunoglobulin panel tomm. Thanks for all your support along the way- Also, she wakes up from her naps and any sleeping time with her head drenched in sweat-WET-she has always done this-I feel like it's geting worse? Any experience with this? Thanks, Kelly.
We are still waiting on Ambry results. 2 negative sweat tests 7 & 8-super low.baby still sick - Pulmonoligist found low IGM level -32- in her bloodwrk-said we need to be seen by immunologist-this has definitely been a roller coaster ride-and not an amusing one- we go from one possible DX to another theory-I'm still pushing though-my pediatrician scoffed at the idea at anything other than the basic sweat test to diagnose CF-I'm changing her pediatrician-he's the one that sent me to the pulmo.doc.and has become a complete jack-ass in her treatment-He said the genetic testing is crazy and not true CF,he would not give me the referral for the immunologist until we had the bloodwork repeated-fine-I did it. I get that point-This baby has been sick for 5 months now, it's all her chest-I should get the results from the immunoglobulin panel tomm. Thanks for all your support along the way- Also, she wakes up from her naps and any sleeping time with her head drenched in sweat-WET-she has always done this-I feel like it's geting worse? Any experience with this? Thanks, Kelly.
Hi
I am sorry that this has been such a rollarcoaster for you. It is so difficult to have a sick child and to have no idea how to help him. The immunologist could be a step in the right direction though. I've heard that there are some immune disorders for which the symptoms are very, very similar to CF. Another mom on the board is going through a similar situation of thinking her son probably had CF to discovering it is probably an immune system issue.
I'm not sure if any of this helps you feel that you are getting somewhere but i think it is good that you are being referred to an immunologist. If nothing else, at least then you will be able rule out immune issues and focus on CF or other possible disorders.
Good luck! Let us know how it goes.
I am sorry that this has been such a rollarcoaster for you. It is so difficult to have a sick child and to have no idea how to help him. The immunologist could be a step in the right direction though. I've heard that there are some immune disorders for which the symptoms are very, very similar to CF. Another mom on the board is going through a similar situation of thinking her son probably had CF to discovering it is probably an immune system issue.
I'm not sure if any of this helps you feel that you are getting somewhere but i think it is good that you are being referred to an immunologist. If nothing else, at least then you will be able rule out immune issues and focus on CF or other possible disorders.
Good luck! Let us know how it goes.
Hi
I am sorry that this has been such a rollarcoaster for you. It is so difficult to have a sick child and to have no idea how to help him. The immunologist could be a step in the right direction though. I've heard that there are some immune disorders for which the symptoms are very, very similar to CF. Another mom on the board is going through a similar situation of thinking her son probably had CF to discovering it is probably an immune system issue.
I'm not sure if any of this helps you feel that you are getting somewhere but i think it is good that you are being referred to an immunologist. If nothing else, at least then you will be able rule out immune issues and focus on CF or other possible disorders.
Good luck! Let us know how it goes.
I am sorry that this has been such a rollarcoaster for you. It is so difficult to have a sick child and to have no idea how to help him. The immunologist could be a step in the right direction though. I've heard that there are some immune disorders for which the symptoms are very, very similar to CF. Another mom on the board is going through a similar situation of thinking her son probably had CF to discovering it is probably an immune system issue.
I'm not sure if any of this helps you feel that you are getting somewhere but i think it is good that you are being referred to an immunologist. If nothing else, at least then you will be able rule out immune issues and focus on CF or other possible disorders.
Good luck! Let us know how it goes.
Hi
I am sorry that this has been such a rollarcoaster for you. It is so difficult to have a sick child and to have no idea how to help him. The immunologist could be a step in the right direction though. I've heard that there are some immune disorders for which the symptoms are very, very similar to CF. Another mom on the board is going through a similar situation of thinking her son probably had CF to discovering it is probably an immune system issue.
I'm not sure if any of this helps you feel that you are getting somewhere but i think it is good that you are being referred to an immunologist. If nothing else, at least then you will be able rule out immune issues and focus on CF or other possible disorders.
Good luck! Let us know how it goes.
I am sorry that this has been such a rollarcoaster for you. It is so difficult to have a sick child and to have no idea how to help him. The immunologist could be a step in the right direction though. I've heard that there are some immune disorders for which the symptoms are very, very similar to CF. Another mom on the board is going through a similar situation of thinking her son probably had CF to discovering it is probably an immune system issue.
I'm not sure if any of this helps you feel that you are getting somewhere but i think it is good that you are being referred to an immunologist. If nothing else, at least then you will be able rule out immune issues and focus on CF or other possible disorders.
Good luck! Let us know how it goes.
Hi
I am sorry that this has been such a rollarcoaster for you. It is so difficult to have a sick child and to have no idea how to help him. The immunologist could be a step in the right direction though. I've heard that there are some immune disorders for which the symptoms are very, very similar to CF. Another mom on the board is going through a similar situation of thinking her son probably had CF to discovering it is probably an immune system issue.
I'm not sure if any of this helps you feel that you are getting somewhere but i think it is good that you are being referred to an immunologist. If nothing else, at least then you will be able rule out immune issues and focus on CF or other possible disorders.
Good luck! Let us know how it goes.
I am sorry that this has been such a rollarcoaster for you. It is so difficult to have a sick child and to have no idea how to help him. The immunologist could be a step in the right direction though. I've heard that there are some immune disorders for which the symptoms are very, very similar to CF. Another mom on the board is going through a similar situation of thinking her son probably had CF to discovering it is probably an immune system issue.
I'm not sure if any of this helps you feel that you are getting somewhere but i think it is good that you are being referred to an immunologist. If nothing else, at least then you will be able rule out immune issues and focus on CF or other possible disorders.
Good luck! Let us know how it goes.
Hi
I am sorry that this has been such a rollarcoaster for you. It is so difficult to have a sick child and to have no idea how to help him. The immunologist could be a step in the right direction though. I've heard that there are some immune disorders for which the symptoms are very, very similar to CF. Another mom on the board is going through a similar situation of thinking her son probably had CF to discovering it is probably an immune system issue.
I'm not sure if any of this helps you feel that you are getting somewhere but i think it is good that you are being referred to an immunologist. If nothing else, at least then you will be able rule out immune issues and focus on CF or other possible disorders.
Good luck! Let us know how it goes.
I am sorry that this has been such a rollarcoaster for you. It is so difficult to have a sick child and to have no idea how to help him. The immunologist could be a step in the right direction though. I've heard that there are some immune disorders for which the symptoms are very, very similar to CF. Another mom on the board is going through a similar situation of thinking her son probably had CF to discovering it is probably an immune system issue.
I'm not sure if any of this helps you feel that you are getting somewhere but i think it is good that you are being referred to an immunologist. If nothing else, at least then you will be able rule out immune issues and focus on CF or other possible disorders.
Good luck! Let us know how it goes.
Hi
I am sorry that this has been such a rollarcoaster for you. It is so difficult to have a sick child and to have no idea how to help him. The immunologist could be a step in the right direction though. I've heard that there are some immune disorders for which the symptoms are very, very similar to CF. Another mom on the board is going through a similar situation of thinking her son probably had CF to discovering it is probably an immune system issue.
I'm not sure if any of this helps you feel that you are getting somewhere but i think it is good that you are being referred to an immunologist. If nothing else, at least then you will be able rule out immune issues and focus on CF or other possible disorders.
Good luck! Let us know how it goes.
I am sorry that this has been such a rollarcoaster for you. It is so difficult to have a sick child and to have no idea how to help him. The immunologist could be a step in the right direction though. I've heard that there are some immune disorders for which the symptoms are very, very similar to CF. Another mom on the board is going through a similar situation of thinking her son probably had CF to discovering it is probably an immune system issue.
I'm not sure if any of this helps you feel that you are getting somewhere but i think it is good that you are being referred to an immunologist. If nothing else, at least then you will be able rule out immune issues and focus on CF or other possible disorders.
Good luck! Let us know how it goes.
Childressj
New member
I believe that i am the one with the son with the immune disorder and it is called "pneumonococcal antibody deficiency" They run a blood test that takes two weeks to get the results and they check 23 titers for antibodies and if they are low they can kid the child antibody shots and they will feel much better. You can definately look for my thread I believe it is called something like 13 year old boy with borderline sweat test. something like that. JC
Childressj
New member
I believe that i am the one with the son with the immune disorder and it is called "pneumonococcal antibody deficiency" They run a blood test that takes two weeks to get the results and they check 23 titers for antibodies and if they are low they can kid the child antibody shots and they will feel much better. You can definately look for my thread I believe it is called something like 13 year old boy with borderline sweat test. something like that. JC
Childressj
New member
I believe that i am the one with the son with the immune disorder and it is called "pneumonococcal antibody deficiency" They run a blood test that takes two weeks to get the results and they check 23 titers for antibodies and if they are low they can kid the child antibody shots and they will feel much better. You can definately look for my thread I believe it is called something like 13 year old boy with borderline sweat test. something like that. JC
Childressj
New member
I believe that i am the one with the son with the immune disorder and it is called "pneumonococcal antibody deficiency" They run a blood test that takes two weeks to get the results and they check 23 titers for antibodies and if they are low they can kid the child antibody shots and they will feel much better. You can definately look for my thread I believe it is called something like 13 year old boy with borderline sweat test. something like that. JC
Childressj
New member
I believe that i am the one with the son with the immune disorder and it is called "pneumonococcal antibody deficiency" They run a blood test that takes two weeks to get the results and they check 23 titers for antibodies and if they are low they can kid the child antibody shots and they will feel much better. You can definately look for my thread I believe it is called something like 13 year old boy with borderline sweat test. something like that. JC