Trachea Malacia/ tracheomalacia

A

ashmomo

New member
My 11 month old just tested positive for trachea malacia. She had an airway flouroscopy on Tuesday. I am just wondering if anyone else on here has had any experience with this at all? Any information would be helpful.

She is wheezy often and has a terrible cough for the most part of her life so far. Past few nights coughing throughout the night ( She has also been diagnosed w/ a significant asthma component to her CF.

She will be starting Singulair tomorrow when I can get it from the pharmacy...hoping it helps!

Thanks for any information or experiences!
 
A

ashmomo

New member
My 11 month old just tested positive for trachea malacia. She had an airway flouroscopy on Tuesday. I am just wondering if anyone else on here has had any experience with this at all? Any information would be helpful.

She is wheezy often and has a terrible cough for the most part of her life so far. Past few nights coughing throughout the night ( She has also been diagnosed w/ a significant asthma component to her CF.

She will be starting Singulair tomorrow when I can get it from the pharmacy...hoping it helps!

Thanks for any information or experiences!
 
A

ashmomo

New member
My 11 month old just tested positive for trachea malacia. She had an airway flouroscopy on Tuesday. I am just wondering if anyone else on here has had any experience with this at all? Any information would be helpful.

She is wheezy often and has a terrible cough for the most part of her life so far. Past few nights coughing throughout the night ( She has also been diagnosed w/ a significant asthma component to her CF.

She will be starting Singulair tomorrow when I can get it from the pharmacy...hoping it helps!

Thanks for any information or experiences!
 
A

ashmomo

New member
My 11 month old just tested positive for trachea malacia. She had an airway flouroscopy on Tuesday. I am just wondering if anyone else on here has had any experience with this at all? Any information would be helpful.

She is wheezy often and has a terrible cough for the most part of her life so far. Past few nights coughing throughout the night ( She has also been diagnosed w/ a significant asthma component to her CF.

She will be starting Singulair tomorrow when I can get it from the pharmacy...hoping it helps!

Thanks for any information or experiences!
 
A

ashmomo

New member
My 11 month old just tested positive for trachea malacia. She had an airway flouroscopy on Tuesday. I am just wondering if anyone else on here has had any experience with this at all? Any information would be helpful.
<br />
<br />She is wheezy often and has a terrible cough for the most part of her life so far. Past few nights coughing throughout the night ( She has also been diagnosed w/ a significant asthma component to her CF.
<br />
<br />She will be starting Singulair tomorrow when I can get it from the pharmacy...hoping it helps!
<br />
<br />Thanks for any information or experiences!
 
B

beansmom

New member
My 4 year old has severe Tracheomalacia. She has had it since she was born. It has created many issues with her CF, but hers is a very severe case. Our doctor told us when she was a baby that almost all children outgrow it by a year the rest by 2. It is basically floppy cartiledge in the trachea that makes it close part way. Our daughter has sleep apnea because of her tracheomalacia. She also has big issues when she is sick. We just spent 3+ weeks in the hospital because of the combination her two issues. Most kids have very little issue with tracheomalcia unless it is severe like ours. Most kids just have a really croupy cough when sick and nothing else. Asthma and tracheomalcia are unrelated. But ALbuturol and Xopenex can make tracheomalacia worse.
 
B

beansmom

New member
My 4 year old has severe Tracheomalacia. She has had it since she was born. It has created many issues with her CF, but hers is a very severe case. Our doctor told us when she was a baby that almost all children outgrow it by a year the rest by 2. It is basically floppy cartiledge in the trachea that makes it close part way. Our daughter has sleep apnea because of her tracheomalacia. She also has big issues when she is sick. We just spent 3+ weeks in the hospital because of the combination her two issues. Most kids have very little issue with tracheomalcia unless it is severe like ours. Most kids just have a really croupy cough when sick and nothing else. Asthma and tracheomalcia are unrelated. But ALbuturol and Xopenex can make tracheomalacia worse.
 
B

beansmom

New member
My 4 year old has severe Tracheomalacia. She has had it since she was born. It has created many issues with her CF, but hers is a very severe case. Our doctor told us when she was a baby that almost all children outgrow it by a year the rest by 2. It is basically floppy cartiledge in the trachea that makes it close part way. Our daughter has sleep apnea because of her tracheomalacia. She also has big issues when she is sick. We just spent 3+ weeks in the hospital because of the combination her two issues. Most kids have very little issue with tracheomalcia unless it is severe like ours. Most kids just have a really croupy cough when sick and nothing else. Asthma and tracheomalcia are unrelated. But ALbuturol and Xopenex can make tracheomalacia worse.
 
B

beansmom

New member
My 4 year old has severe Tracheomalacia. She has had it since she was born. It has created many issues with her CF, but hers is a very severe case. Our doctor told us when she was a baby that almost all children outgrow it by a year the rest by 2. It is basically floppy cartiledge in the trachea that makes it close part way. Our daughter has sleep apnea because of her tracheomalacia. She also has big issues when she is sick. We just spent 3+ weeks in the hospital because of the combination her two issues. Most kids have very little issue with tracheomalcia unless it is severe like ours. Most kids just have a really croupy cough when sick and nothing else. Asthma and tracheomalcia are unrelated. But ALbuturol and Xopenex can make tracheomalacia worse.
 
B

beansmom

New member
My 4 year old has severe Tracheomalacia. She has had it since she was born. It has created many issues with her CF, but hers is a very severe case. Our doctor told us when she was a baby that almost all children outgrow it by a year the rest by 2. It is basically floppy cartiledge in the trachea that makes it close part way. Our daughter has sleep apnea because of her tracheomalacia. She also has big issues when she is sick. We just spent 3+ weeks in the hospital because of the combination her two issues. Most kids have very little issue with tracheomalcia unless it is severe like ours. Most kids just have a really croupy cough when sick and nothing else. Asthma and tracheomalcia are unrelated. But ALbuturol and Xopenex can make tracheomalacia worse.
 
A

ashmomo

New member
Really? We use Duo-neb and she responds well to that. When wheezy, just albuterol doesn't do much for her...but she responds well when we use it mixed with Atrovent.
They just put her on Singulair to help and it seemed to help last night cuz she didn't cough throughout the night as she has been every night lately. Could it work that fast? Does your daughter take anything else to help with it?
My daughter had a bronch in the NICU...I am curious as to why they didn't see this in her bronch?
Jordin has been coughing pretty much since birth. And has recently presented with lots of wheezing and coughing through the night <img src="i/expressions/face-icon-small-blush.gif" border="0">(
Thanks for your response...sounds like this is quite uncommon.
 
A

ashmomo

New member
Really? We use Duo-neb and she responds well to that. When wheezy, just albuterol doesn't do much for her...but she responds well when we use it mixed with Atrovent.
They just put her on Singulair to help and it seemed to help last night cuz she didn't cough throughout the night as she has been every night lately. Could it work that fast? Does your daughter take anything else to help with it?
My daughter had a bronch in the NICU...I am curious as to why they didn't see this in her bronch?
Jordin has been coughing pretty much since birth. And has recently presented with lots of wheezing and coughing through the night <img src="i/expressions/face-icon-small-blush.gif" border="0">(
Thanks for your response...sounds like this is quite uncommon.
 
A

ashmomo

New member
Really? We use Duo-neb and she responds well to that. When wheezy, just albuterol doesn't do much for her...but she responds well when we use it mixed with Atrovent.
They just put her on Singulair to help and it seemed to help last night cuz she didn't cough throughout the night as she has been every night lately. Could it work that fast? Does your daughter take anything else to help with it?
My daughter had a bronch in the NICU...I am curious as to why they didn't see this in her bronch?
Jordin has been coughing pretty much since birth. And has recently presented with lots of wheezing and coughing through the night <img src="i/expressions/face-icon-small-blush.gif" border="0">(
Thanks for your response...sounds like this is quite uncommon.
 
A

ashmomo

New member
Really? We use Duo-neb and she responds well to that. When wheezy, just albuterol doesn't do much for her...but she responds well when we use it mixed with Atrovent.
They just put her on Singulair to help and it seemed to help last night cuz she didn't cough throughout the night as she has been every night lately. Could it work that fast? Does your daughter take anything else to help with it?
My daughter had a bronch in the NICU...I am curious as to why they didn't see this in her bronch?
Jordin has been coughing pretty much since birth. And has recently presented with lots of wheezing and coughing through the night <img src="i/expressions/face-icon-small-blush.gif" border="0">(
Thanks for your response...sounds like this is quite uncommon.
 
A

ashmomo

New member
Really? We use Duo-neb and she responds well to that. When wheezy, just albuterol doesn't do much for her...but she responds well when we use it mixed with Atrovent.
<br />They just put her on Singulair to help and it seemed to help last night cuz she didn't cough throughout the night as she has been every night lately. Could it work that fast? Does your daughter take anything else to help with it?
<br />My daughter had a bronch in the NICU...I am curious as to why they didn't see this in her bronch?
<br />Jordin has been coughing pretty much since birth. And has recently presented with lots of wheezing and coughing through the night <img src="i/expressions/face-icon-small-blush.gif" border="0">(
<br />Thanks for your response...sounds like this is quite uncommon.
 
B

beansmom

New member
My daughter does not have an asthma component at all. Both the DuoNeb and Singulair are for asthma not tracheomalacia. As far as I know there is not any treatment for tracheomalacia because most of the time it does not cause any issues. It sounds like your daughter is having more asthma related issues. Because of the tracheomalacia my daughter does use atrovent not albuterol for her treatments. Maybe that is why the Duoneb is better because it does not make the tracheomalacia worse and it helps with the asthma as well.

As far as why they did not see it in the NICU, my daughter has also had several bronchs. The first one was when she was about 1 and very sick in the PICU on a ventilator. They did not see it then because the tube from the vent was blocking it. Maybe that is why they did not see your daughters as well. I do know that for tracheomalacia apparently the way ENT bronchs is better than pulmonary because whenever they are evaluating my daughter's trachea they have ENT and pulmonary together. They use different kinds of scopes and the ENT can see it better, so that may be another reason why when your daughter was in the NICU they did not see it before.

My daughter was on Singulair in the past but had a severe allergic reaction to it, so I do not know if it would have helped or not. Hopefully it will help your daughter. I know it has done wonders for my nephew.
 
B

beansmom

New member
My daughter does not have an asthma component at all. Both the DuoNeb and Singulair are for asthma not tracheomalacia. As far as I know there is not any treatment for tracheomalacia because most of the time it does not cause any issues. It sounds like your daughter is having more asthma related issues. Because of the tracheomalacia my daughter does use atrovent not albuterol for her treatments. Maybe that is why the Duoneb is better because it does not make the tracheomalacia worse and it helps with the asthma as well.

As far as why they did not see it in the NICU, my daughter has also had several bronchs. The first one was when she was about 1 and very sick in the PICU on a ventilator. They did not see it then because the tube from the vent was blocking it. Maybe that is why they did not see your daughters as well. I do know that for tracheomalacia apparently the way ENT bronchs is better than pulmonary because whenever they are evaluating my daughter's trachea they have ENT and pulmonary together. They use different kinds of scopes and the ENT can see it better, so that may be another reason why when your daughter was in the NICU they did not see it before.

My daughter was on Singulair in the past but had a severe allergic reaction to it, so I do not know if it would have helped or not. Hopefully it will help your daughter. I know it has done wonders for my nephew.
 
B

beansmom

New member
My daughter does not have an asthma component at all. Both the DuoNeb and Singulair are for asthma not tracheomalacia. As far as I know there is not any treatment for tracheomalacia because most of the time it does not cause any issues. It sounds like your daughter is having more asthma related issues. Because of the tracheomalacia my daughter does use atrovent not albuterol for her treatments. Maybe that is why the Duoneb is better because it does not make the tracheomalacia worse and it helps with the asthma as well.

As far as why they did not see it in the NICU, my daughter has also had several bronchs. The first one was when she was about 1 and very sick in the PICU on a ventilator. They did not see it then because the tube from the vent was blocking it. Maybe that is why they did not see your daughters as well. I do know that for tracheomalacia apparently the way ENT bronchs is better than pulmonary because whenever they are evaluating my daughter's trachea they have ENT and pulmonary together. They use different kinds of scopes and the ENT can see it better, so that may be another reason why when your daughter was in the NICU they did not see it before.

My daughter was on Singulair in the past but had a severe allergic reaction to it, so I do not know if it would have helped or not. Hopefully it will help your daughter. I know it has done wonders for my nephew.
 
B

beansmom

New member
My daughter does not have an asthma component at all. Both the DuoNeb and Singulair are for asthma not tracheomalacia. As far as I know there is not any treatment for tracheomalacia because most of the time it does not cause any issues. It sounds like your daughter is having more asthma related issues. Because of the tracheomalacia my daughter does use atrovent not albuterol for her treatments. Maybe that is why the Duoneb is better because it does not make the tracheomalacia worse and it helps with the asthma as well.

As far as why they did not see it in the NICU, my daughter has also had several bronchs. The first one was when she was about 1 and very sick in the PICU on a ventilator. They did not see it then because the tube from the vent was blocking it. Maybe that is why they did not see your daughters as well. I do know that for tracheomalacia apparently the way ENT bronchs is better than pulmonary because whenever they are evaluating my daughter's trachea they have ENT and pulmonary together. They use different kinds of scopes and the ENT can see it better, so that may be another reason why when your daughter was in the NICU they did not see it before.

My daughter was on Singulair in the past but had a severe allergic reaction to it, so I do not know if it would have helped or not. Hopefully it will help your daughter. I know it has done wonders for my nephew.
 
B

beansmom

New member
My daughter does not have an asthma component at all. Both the DuoNeb and Singulair are for asthma not tracheomalacia. As far as I know there is not any treatment for tracheomalacia because most of the time it does not cause any issues. It sounds like your daughter is having more asthma related issues. Because of the tracheomalacia my daughter does use atrovent not albuterol for her treatments. Maybe that is why the Duoneb is better because it does not make the tracheomalacia worse and it helps with the asthma as well.
<br />
<br />As far as why they did not see it in the NICU, my daughter has also had several bronchs. The first one was when she was about 1 and very sick in the PICU on a ventilator. They did not see it then because the tube from the vent was blocking it. Maybe that is why they did not see your daughters as well. I do know that for tracheomalacia apparently the way ENT bronchs is better than pulmonary because whenever they are evaluating my daughter's trachea they have ENT and pulmonary together. They use different kinds of scopes and the ENT can see it better, so that may be another reason why when your daughter was in the NICU they did not see it before.
<br />
<br />My daughter was on Singulair in the past but had a severe allergic reaction to it, so I do not know if it would have helped or not. Hopefully it will help your daughter. I know it has done wonders for my nephew.
 
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