waiting for results

JORDYSMOM · Feb 18, 2008

Wow Amy! Isn't it amazing what one can get used to? You have lived with all of this for so long, it's just your normal. Have any of the docs you've seen over the years ever put you on enzymes? You mentioned you were FTT as a child, so I just wondered if the docs thought of that.

My son had most of the things that you have described for your kids, except the FTT. I was told it was allergies, and asthma. He was 15 before he was dx with CF. It is very frustrating when you KNOW something is wrong, but you are at the mercy of the docs. I am so glad you found this site, and you can arm yourself with information. I'm not saying that your kids and you absolutely have CF. I'm just saying that you should all be tested. Push for them to do the full panel Ambry test. As someone else pointed out, there are thousands of know mutations, so it's pointless, in my opinion, to stop at the first 40. Insurance companies don't like to pay out the money, so you may have to fight to get it, but keep fighting.

I sincerely hope that you get the answers you need for you and your babies. If there is a CF diagnosis, you can then start the proper treatments. It made a world of difference for my son. There were finally answers to all of my questions, and there was something I could do to help him. Please let us know what you find out.

Stacey

JORDYSMOM · Feb 18, 2008

Wow Amy! Isn't it amazing what one can get used to? You have lived with all of this for so long, it's just your normal. Have any of the docs you've seen over the years ever put you on enzymes? You mentioned you were FTT as a child, so I just wondered if the docs thought of that.

My son had most of the things that you have described for your kids, except the FTT. I was told it was allergies, and asthma. He was 15 before he was dx with CF. It is very frustrating when you KNOW something is wrong, but you are at the mercy of the docs. I am so glad you found this site, and you can arm yourself with information. I'm not saying that your kids and you absolutely have CF. I'm just saying that you should all be tested. Push for them to do the full panel Ambry test. As someone else pointed out, there are thousands of know mutations, so it's pointless, in my opinion, to stop at the first 40. Insurance companies don't like to pay out the money, so you may have to fight to get it, but keep fighting.

I sincerely hope that you get the answers you need for you and your babies. If there is a CF diagnosis, you can then start the proper treatments. It made a world of difference for my son. There were finally answers to all of my questions, and there was something I could do to help him. Please let us know what you find out.

Stacey

JORDYSMOM · Feb 18, 2008

Wow Amy! Isn't it amazing what one can get used to? You have lived with all of this for so long, it's just your normal. Have any of the docs you've seen over the years ever put you on enzymes? You mentioned you were FTT as a child, so I just wondered if the docs thought of that.

My son had most of the things that you have described for your kids, except the FTT. I was told it was allergies, and asthma. He was 15 before he was dx with CF. It is very frustrating when you KNOW something is wrong, but you are at the mercy of the docs. I am so glad you found this site, and you can arm yourself with information. I'm not saying that your kids and you absolutely have CF. I'm just saying that you should all be tested. Push for them to do the full panel Ambry test. As someone else pointed out, there are thousands of know mutations, so it's pointless, in my opinion, to stop at the first 40. Insurance companies don't like to pay out the money, so you may have to fight to get it, but keep fighting.

I sincerely hope that you get the answers you need for you and your babies. If there is a CF diagnosis, you can then start the proper treatments. It made a world of difference for my son. There were finally answers to all of my questions, and there was something I could do to help him. Please let us know what you find out.

Stacey

JORDYSMOM · Feb 18, 2008

Wow Amy! Isn't it amazing what one can get used to? You have lived with all of this for so long, it's just your normal. Have any of the docs you've seen over the years ever put you on enzymes? You mentioned you were FTT as a child, so I just wondered if the docs thought of that.

My son had most of the things that you have described for your kids, except the FTT. I was told it was allergies, and asthma. He was 15 before he was dx with CF. It is very frustrating when you KNOW something is wrong, but you are at the mercy of the docs. I am so glad you found this site, and you can arm yourself with information. I'm not saying that your kids and you absolutely have CF. I'm just saying that you should all be tested. Push for them to do the full panel Ambry test. As someone else pointed out, there are thousands of know mutations, so it's pointless, in my opinion, to stop at the first 40. Insurance companies don't like to pay out the money, so you may have to fight to get it, but keep fighting.

I sincerely hope that you get the answers you need for you and your babies. If there is a CF diagnosis, you can then start the proper treatments. It made a world of difference for my son. There were finally answers to all of my questions, and there was something I could do to help him. Please let us know what you find out.

Stacey

JORDYSMOM · Feb 18, 2008

Wow Amy! Isn't it amazing what one can get used to? You have lived with all of this for so long, it's just your normal. Have any of the docs you've seen over the years ever put you on enzymes? You mentioned you were FTT as a child, so I just wondered if the docs thought of that.

My son had most of the things that you have described for your kids, except the FTT. I was told it was allergies, and asthma. He was 15 before he was dx with CF. It is very frustrating when you KNOW something is wrong, but you are at the mercy of the docs. I am so glad you found this site, and you can arm yourself with information. I'm not saying that your kids and you absolutely have CF. I'm just saying that you should all be tested. Push for them to do the full panel Ambry test. As someone else pointed out, there are thousands of know mutations, so it's pointless, in my opinion, to stop at the first 40. Insurance companies don't like to pay out the money, so you may have to fight to get it, but keep fighting.

I sincerely hope that you get the answers you need for you and your babies. If there is a CF diagnosis, you can then start the proper treatments. It made a world of difference for my son. There were finally answers to all of my questions, and there was something I could do to help him. Please let us know what you find out.

Stacey

amyr · Feb 18, 2008

Thanks so much for the replys. I feel that I truely may have a nervous break down. My three year old was in the er again with erythema multiform most likely caused by a viral infection mycoplasma due to walking penomonia. How much more proof do we need. I feel so alone in this fight. I have always known something was wrong with myself and my children but have always been told just the opposite. i walk through life labeled as a hypochondriac. i have been put on meds for anxiety (due to shortness of breath) My husband minimizes everything and really does make me feel crazy. he knows something is wrong with everyone and I guess this is his way of dealing. My parents don't want to come and help this time because they feel like they are always coming to help. I have had 12 years of sick kids what do they expect! I am terrified that my 10 year old the one who has had the most problems (tested borderline) has had so much damage done to him. It's a progressive disease right? I need to get this figured out and move on and do what is best for my kids. It's so scarey that we put so much stock into the medical community yet I find myself in this spot time and time again. Just venting and expressing my true fear!
Amy

amyr · Feb 18, 2008

Thanks so much for the replys. I feel that I truely may have a nervous break down. My three year old was in the er again with erythema multiform most likely caused by a viral infection mycoplasma due to walking penomonia. How much more proof do we need. I feel so alone in this fight. I have always known something was wrong with myself and my children but have always been told just the opposite. i walk through life labeled as a hypochondriac. i have been put on meds for anxiety (due to shortness of breath) My husband minimizes everything and really does make me feel crazy. he knows something is wrong with everyone and I guess this is his way of dealing. My parents don't want to come and help this time because they feel like they are always coming to help. I have had 12 years of sick kids what do they expect! I am terrified that my 10 year old the one who has had the most problems (tested borderline) has had so much damage done to him. It's a progressive disease right? I need to get this figured out and move on and do what is best for my kids. It's so scarey that we put so much stock into the medical community yet I find myself in this spot time and time again. Just venting and expressing my true fear!
Amy

amyr · Feb 18, 2008

Thanks so much for the replys. I feel that I truely may have a nervous break down. My three year old was in the er again with erythema multiform most likely caused by a viral infection mycoplasma due to walking penomonia. How much more proof do we need. I feel so alone in this fight. I have always known something was wrong with myself and my children but have always been told just the opposite. i walk through life labeled as a hypochondriac. i have been put on meds for anxiety (due to shortness of breath) My husband minimizes everything and really does make me feel crazy. he knows something is wrong with everyone and I guess this is his way of dealing. My parents don't want to come and help this time because they feel like they are always coming to help. I have had 12 years of sick kids what do they expect! I am terrified that my 10 year old the one who has had the most problems (tested borderline) has had so much damage done to him. It's a progressive disease right? I need to get this figured out and move on and do what is best for my kids. It's so scarey that we put so much stock into the medical community yet I find myself in this spot time and time again. Just venting and expressing my true fear!
Amy

amyr · Feb 18, 2008

Thanks so much for the replys. I feel that I truely may have a nervous break down. My three year old was in the er again with erythema multiform most likely caused by a viral infection mycoplasma due to walking penomonia. How much more proof do we need. I feel so alone in this fight. I have always known something was wrong with myself and my children but have always been told just the opposite. i walk through life labeled as a hypochondriac. i have been put on meds for anxiety (due to shortness of breath) My husband minimizes everything and really does make me feel crazy. he knows something is wrong with everyone and I guess this is his way of dealing. My parents don't want to come and help this time because they feel like they are always coming to help. I have had 12 years of sick kids what do they expect! I am terrified that my 10 year old the one who has had the most problems (tested borderline) has had so much damage done to him. It's a progressive disease right? I need to get this figured out and move on and do what is best for my kids. It's so scarey that we put so much stock into the medical community yet I find myself in this spot time and time again. Just venting and expressing my true fear!
Amy

amyr · Feb 18, 2008

Thanks so much for the replys. I feel that I truely may have a nervous break down. My three year old was in the er again with erythema multiform most likely caused by a viral infection mycoplasma due to walking penomonia. How much more proof do we need. I feel so alone in this fight. I have always known something was wrong with myself and my children but have always been told just the opposite. i walk through life labeled as a hypochondriac. i have been put on meds for anxiety (due to shortness of breath) My husband minimizes everything and really does make me feel crazy. he knows something is wrong with everyone and I guess this is his way of dealing. My parents don't want to come and help this time because they feel like they are always coming to help. I have had 12 years of sick kids what do they expect! I am terrified that my 10 year old the one who has had the most problems (tested borderline) has had so much damage done to him. It's a progressive disease right? I need to get this figured out and move on and do what is best for my kids. It's so scarey that we put so much stock into the medical community yet I find myself in this spot time and time again. Just venting and expressing my true fear!
Amy

concernedmom · Feb 20, 2008

Amy, just out of curiosity, have they done testing for a primary immune deficiency? If not, if a full genetic panel w/deletion testing comes back negative for CF, I'd definitely ask for a full immune workup. It consists of multiple blood draws over a few weeks time. Just a thought.

concernedmom · Feb 20, 2008

Amy, just out of curiosity, have they done testing for a primary immune deficiency? If not, if a full genetic panel w/deletion testing comes back negative for CF, I'd definitely ask for a full immune workup. It consists of multiple blood draws over a few weeks time. Just a thought.

concernedmom · Feb 20, 2008

Amy, just out of curiosity, have they done testing for a primary immune deficiency? If not, if a full genetic panel w/deletion testing comes back negative for CF, I'd definitely ask for a full immune workup. It consists of multiple blood draws over a few weeks time. Just a thought.

concernedmom · Feb 20, 2008

Amy, just out of curiosity, have they done testing for a primary immune deficiency? If not, if a full genetic panel w/deletion testing comes back negative for CF, I'd definitely ask for a full immune workup. It consists of multiple blood draws over a few weeks time. Just a thought.

concernedmom · Feb 20, 2008

Amy, just out of curiosity, have they done testing for a primary immune deficiency? If not, if a full genetic panel w/deletion testing comes back negative for CF, I'd definitely ask for a full immune workup. It consists of multiple blood draws over a few weeks time. Just a thought.

amyr · Feb 20, 2008