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Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
- Thread starter AlexsMom
- Start date
M
Mommafirst
Guest
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Alex's Mom -- even without a diagnosis, I don't think there would be any harm in doing physiotherapy IN ADDITION to her nebulized meds. When my friends little girl (no CF) had RSV, they trained her with the percussion cups to help her clear out the mucous from her lungs. If Alexandra is always congested in her chest, I would most certainly try airway clearance to help her breathe more normally.
Have they run a sputum culture to see if she is culturing anything? Have they put her on antibiotics? If all those nebs aren't helping, they should be trying anything and everything. That kind of congestion is just not normal at this age.
I know you are feeling frustrated and confused. Keep pushing forward, find a new doctor if necessary, you are your child's best advocate. HUGS to you!!!
Alex's Mom -- even without a diagnosis, I don't think there would be any harm in doing physiotherapy IN ADDITION to her nebulized meds. When my friends little girl (no CF) had RSV, they trained her with the percussion cups to help her clear out the mucous from her lungs. If Alexandra is always congested in her chest, I would most certainly try airway clearance to help her breathe more normally.
Have they run a sputum culture to see if she is culturing anything? Have they put her on antibiotics? If all those nebs aren't helping, they should be trying anything and everything. That kind of congestion is just not normal at this age.
I know you are feeling frustrated and confused. Keep pushing forward, find a new doctor if necessary, you are your child's best advocate. HUGS to you!!!
M
Mommafirst
Guest
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Alex's Mom -- even without a diagnosis, I don't think there would be any harm in doing physiotherapy IN ADDITION to her nebulized meds. When my friends little girl (no CF) had RSV, they trained her with the percussion cups to help her clear out the mucous from her lungs. If Alexandra is always congested in her chest, I would most certainly try airway clearance to help her breathe more normally.
Have they run a sputum culture to see if she is culturing anything? Have they put her on antibiotics? If all those nebs aren't helping, they should be trying anything and everything. That kind of congestion is just not normal at this age.
I know you are feeling frustrated and confused. Keep pushing forward, find a new doctor if necessary, you are your child's best advocate. HUGS to you!!!
Alex's Mom -- even without a diagnosis, I don't think there would be any harm in doing physiotherapy IN ADDITION to her nebulized meds. When my friends little girl (no CF) had RSV, they trained her with the percussion cups to help her clear out the mucous from her lungs. If Alexandra is always congested in her chest, I would most certainly try airway clearance to help her breathe more normally.
Have they run a sputum culture to see if she is culturing anything? Have they put her on antibiotics? If all those nebs aren't helping, they should be trying anything and everything. That kind of congestion is just not normal at this age.
I know you are feeling frustrated and confused. Keep pushing forward, find a new doctor if necessary, you are your child's best advocate. HUGS to you!!!
M
Mommafirst
Guest
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Alex's Mom -- even without a diagnosis, I don't think there would be any harm in doing physiotherapy IN ADDITION to her nebulized meds. When my friends little girl (no CF) had RSV, they trained her with the percussion cups to help her clear out the mucous from her lungs. If Alexandra is always congested in her chest, I would most certainly try airway clearance to help her breathe more normally.
Have they run a sputum culture to see if she is culturing anything? Have they put her on antibiotics? If all those nebs aren't helping, they should be trying anything and everything. That kind of congestion is just not normal at this age.
I know you are feeling frustrated and confused. Keep pushing forward, find a new doctor if necessary, you are your child's best advocate. HUGS to you!!!
Alex's Mom -- even without a diagnosis, I don't think there would be any harm in doing physiotherapy IN ADDITION to her nebulized meds. When my friends little girl (no CF) had RSV, they trained her with the percussion cups to help her clear out the mucous from her lungs. If Alexandra is always congested in her chest, I would most certainly try airway clearance to help her breathe more normally.
Have they run a sputum culture to see if she is culturing anything? Have they put her on antibiotics? If all those nebs aren't helping, they should be trying anything and everything. That kind of congestion is just not normal at this age.
I know you are feeling frustrated and confused. Keep pushing forward, find a new doctor if necessary, you are your child's best advocate. HUGS to you!!!
M
Mommafirst
Guest
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Alex's Mom -- even without a diagnosis, I don't think there would be any harm in doing physiotherapy IN ADDITION to her nebulized meds. When my friends little girl (no CF) had RSV, they trained her with the percussion cups to help her clear out the mucous from her lungs. If Alexandra is always congested in her chest, I would most certainly try airway clearance to help her breathe more normally.
Have they run a sputum culture to see if she is culturing anything? Have they put her on antibiotics? If all those nebs aren't helping, they should be trying anything and everything. That kind of congestion is just not normal at this age.
I know you are feeling frustrated and confused. Keep pushing forward, find a new doctor if necessary, you are your child's best advocate. HUGS to you!!!
Alex's Mom -- even without a diagnosis, I don't think there would be any harm in doing physiotherapy IN ADDITION to her nebulized meds. When my friends little girl (no CF) had RSV, they trained her with the percussion cups to help her clear out the mucous from her lungs. If Alexandra is always congested in her chest, I would most certainly try airway clearance to help her breathe more normally.
Have they run a sputum culture to see if she is culturing anything? Have they put her on antibiotics? If all those nebs aren't helping, they should be trying anything and everything. That kind of congestion is just not normal at this age.
I know you are feeling frustrated and confused. Keep pushing forward, find a new doctor if necessary, you are your child's best advocate. HUGS to you!!!
M
Mommafirst
Guest
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Alex's Mom -- even without a diagnosis, I don't think there would be any harm in doing physiotherapy IN ADDITION to her nebulized meds. When my friends little girl (no CF) had RSV, they trained her with the percussion cups to help her clear out the mucous from her lungs. If Alexandra is always congested in her chest, I would most certainly try airway clearance to help her breathe more normally.
Have they run a sputum culture to see if she is culturing anything? Have they put her on antibiotics? If all those nebs aren't helping, they should be trying anything and everything. That kind of congestion is just not normal at this age.
I know you are feeling frustrated and confused. Keep pushing forward, find a new doctor if necessary, you are your child's best advocate. HUGS to you!!!
Alex's Mom -- even without a diagnosis, I don't think there would be any harm in doing physiotherapy IN ADDITION to her nebulized meds. When my friends little girl (no CF) had RSV, they trained her with the percussion cups to help her clear out the mucous from her lungs. If Alexandra is always congested in her chest, I would most certainly try airway clearance to help her breathe more normally.
Have they run a sputum culture to see if she is culturing anything? Have they put her on antibiotics? If all those nebs aren't helping, they should be trying anything and everything. That kind of congestion is just not normal at this age.
I know you are feeling frustrated and confused. Keep pushing forward, find a new doctor if necessary, you are your child's best advocate. HUGS to you!!!
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
DS is pretty much the same as above. Doesn't normally cough. Usually doesn't bring anything up. In fact his CF doctor wants to know if he gets a cough, so he can prescribe any meds accordingly. Also we increase CPT/vest from 3 x a day to 4 or more. Bascially we focus on keeping the lungs healthy so things don't grow. Oh, and last winter when I had bronchitis, I had DH beat me to get that stuff up and out.
And I too would suggest they do a throat or sputum culture for CF. See if anything is growing there. When DS first cultured pseudomonas, he didn't have any symptons.
With his cpt he gets albuterol/atrovent nebulized. Every other month he's on tobi twice a day (nebulized) and before be he gets nebulized pulmozyme. He gets digestive enzymes, aqua adeks vitamin drops, vitamin K, keflex, zithromax, actigall, septra for oral meds. We mix cream in with his milk or give him carnation instant breakfast for extra calories. Give him extra salt. In fact a few minutes ago he was sitting on the cough watching cartoon and sprinkling salt from the salt shaker on his hand and eating it.
He goes to preschool. During the winter he has swimming lessons twice a week and gymnastics once a week. He still takes naps in the afternoon -- he's 4, but it's probably because we keep him up later at night to do that last CPT treatment.
DS is pretty much the same as above. Doesn't normally cough. Usually doesn't bring anything up. In fact his CF doctor wants to know if he gets a cough, so he can prescribe any meds accordingly. Also we increase CPT/vest from 3 x a day to 4 or more. Bascially we focus on keeping the lungs healthy so things don't grow. Oh, and last winter when I had bronchitis, I had DH beat me to get that stuff up and out.
And I too would suggest they do a throat or sputum culture for CF. See if anything is growing there. When DS first cultured pseudomonas, he didn't have any symptons.
With his cpt he gets albuterol/atrovent nebulized. Every other month he's on tobi twice a day (nebulized) and before be he gets nebulized pulmozyme. He gets digestive enzymes, aqua adeks vitamin drops, vitamin K, keflex, zithromax, actigall, septra for oral meds. We mix cream in with his milk or give him carnation instant breakfast for extra calories. Give him extra salt. In fact a few minutes ago he was sitting on the cough watching cartoon and sprinkling salt from the salt shaker on his hand and eating it.
He goes to preschool. During the winter he has swimming lessons twice a week and gymnastics once a week. He still takes naps in the afternoon -- he's 4, but it's probably because we keep him up later at night to do that last CPT treatment.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
DS is pretty much the same as above. Doesn't normally cough. Usually doesn't bring anything up. In fact his CF doctor wants to know if he gets a cough, so he can prescribe any meds accordingly. Also we increase CPT/vest from 3 x a day to 4 or more. Bascially we focus on keeping the lungs healthy so things don't grow. Oh, and last winter when I had bronchitis, I had DH beat me to get that stuff up and out.
And I too would suggest they do a throat or sputum culture for CF. See if anything is growing there. When DS first cultured pseudomonas, he didn't have any symptons.
With his cpt he gets albuterol/atrovent nebulized. Every other month he's on tobi twice a day (nebulized) and before be he gets nebulized pulmozyme. He gets digestive enzymes, aqua adeks vitamin drops, vitamin K, keflex, zithromax, actigall, septra for oral meds. We mix cream in with his milk or give him carnation instant breakfast for extra calories. Give him extra salt. In fact a few minutes ago he was sitting on the cough watching cartoon and sprinkling salt from the salt shaker on his hand and eating it.
He goes to preschool. During the winter he has swimming lessons twice a week and gymnastics once a week. He still takes naps in the afternoon -- he's 4, but it's probably because we keep him up later at night to do that last CPT treatment.
DS is pretty much the same as above. Doesn't normally cough. Usually doesn't bring anything up. In fact his CF doctor wants to know if he gets a cough, so he can prescribe any meds accordingly. Also we increase CPT/vest from 3 x a day to 4 or more. Bascially we focus on keeping the lungs healthy so things don't grow. Oh, and last winter when I had bronchitis, I had DH beat me to get that stuff up and out.
And I too would suggest they do a throat or sputum culture for CF. See if anything is growing there. When DS first cultured pseudomonas, he didn't have any symptons.
With his cpt he gets albuterol/atrovent nebulized. Every other month he's on tobi twice a day (nebulized) and before be he gets nebulized pulmozyme. He gets digestive enzymes, aqua adeks vitamin drops, vitamin K, keflex, zithromax, actigall, septra for oral meds. We mix cream in with his milk or give him carnation instant breakfast for extra calories. Give him extra salt. In fact a few minutes ago he was sitting on the cough watching cartoon and sprinkling salt from the salt shaker on his hand and eating it.
He goes to preschool. During the winter he has swimming lessons twice a week and gymnastics once a week. He still takes naps in the afternoon -- he's 4, but it's probably because we keep him up later at night to do that last CPT treatment.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
DS is pretty much the same as above. Doesn't normally cough. Usually doesn't bring anything up. In fact his CF doctor wants to know if he gets a cough, so he can prescribe any meds accordingly. Also we increase CPT/vest from 3 x a day to 4 or more. Bascially we focus on keeping the lungs healthy so things don't grow. Oh, and last winter when I had bronchitis, I had DH beat me to get that stuff up and out.
And I too would suggest they do a throat or sputum culture for CF. See if anything is growing there. When DS first cultured pseudomonas, he didn't have any symptons.
With his cpt he gets albuterol/atrovent nebulized. Every other month he's on tobi twice a day (nebulized) and before be he gets nebulized pulmozyme. He gets digestive enzymes, aqua adeks vitamin drops, vitamin K, keflex, zithromax, actigall, septra for oral meds. We mix cream in with his milk or give him carnation instant breakfast for extra calories. Give him extra salt. In fact a few minutes ago he was sitting on the cough watching cartoon and sprinkling salt from the salt shaker on his hand and eating it.
He goes to preschool. During the winter he has swimming lessons twice a week and gymnastics once a week. He still takes naps in the afternoon -- he's 4, but it's probably because we keep him up later at night to do that last CPT treatment.
DS is pretty much the same as above. Doesn't normally cough. Usually doesn't bring anything up. In fact his CF doctor wants to know if he gets a cough, so he can prescribe any meds accordingly. Also we increase CPT/vest from 3 x a day to 4 or more. Bascially we focus on keeping the lungs healthy so things don't grow. Oh, and last winter when I had bronchitis, I had DH beat me to get that stuff up and out.
And I too would suggest they do a throat or sputum culture for CF. See if anything is growing there. When DS first cultured pseudomonas, he didn't have any symptons.
With his cpt he gets albuterol/atrovent nebulized. Every other month he's on tobi twice a day (nebulized) and before be he gets nebulized pulmozyme. He gets digestive enzymes, aqua adeks vitamin drops, vitamin K, keflex, zithromax, actigall, septra for oral meds. We mix cream in with his milk or give him carnation instant breakfast for extra calories. Give him extra salt. In fact a few minutes ago he was sitting on the cough watching cartoon and sprinkling salt from the salt shaker on his hand and eating it.
He goes to preschool. During the winter he has swimming lessons twice a week and gymnastics once a week. He still takes naps in the afternoon -- he's 4, but it's probably because we keep him up later at night to do that last CPT treatment.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
DS is pretty much the same as above. Doesn't normally cough. Usually doesn't bring anything up. In fact his CF doctor wants to know if he gets a cough, so he can prescribe any meds accordingly. Also we increase CPT/vest from 3 x a day to 4 or more. Bascially we focus on keeping the lungs healthy so things don't grow. Oh, and last winter when I had bronchitis, I had DH beat me to get that stuff up and out.
And I too would suggest they do a throat or sputum culture for CF. See if anything is growing there. When DS first cultured pseudomonas, he didn't have any symptons.
With his cpt he gets albuterol/atrovent nebulized. Every other month he's on tobi twice a day (nebulized) and before be he gets nebulized pulmozyme. He gets digestive enzymes, aqua adeks vitamin drops, vitamin K, keflex, zithromax, actigall, septra for oral meds. We mix cream in with his milk or give him carnation instant breakfast for extra calories. Give him extra salt. In fact a few minutes ago he was sitting on the cough watching cartoon and sprinkling salt from the salt shaker on his hand and eating it.
He goes to preschool. During the winter he has swimming lessons twice a week and gymnastics once a week. He still takes naps in the afternoon -- he's 4, but it's probably because we keep him up later at night to do that last CPT treatment.
DS is pretty much the same as above. Doesn't normally cough. Usually doesn't bring anything up. In fact his CF doctor wants to know if he gets a cough, so he can prescribe any meds accordingly. Also we increase CPT/vest from 3 x a day to 4 or more. Bascially we focus on keeping the lungs healthy so things don't grow. Oh, and last winter when I had bronchitis, I had DH beat me to get that stuff up and out.
And I too would suggest they do a throat or sputum culture for CF. See if anything is growing there. When DS first cultured pseudomonas, he didn't have any symptons.
With his cpt he gets albuterol/atrovent nebulized. Every other month he's on tobi twice a day (nebulized) and before be he gets nebulized pulmozyme. He gets digestive enzymes, aqua adeks vitamin drops, vitamin K, keflex, zithromax, actigall, septra for oral meds. We mix cream in with his milk or give him carnation instant breakfast for extra calories. Give him extra salt. In fact a few minutes ago he was sitting on the cough watching cartoon and sprinkling salt from the salt shaker on his hand and eating it.
He goes to preschool. During the winter he has swimming lessons twice a week and gymnastics once a week. He still takes naps in the afternoon -- he's 4, but it's probably because we keep him up later at night to do that last CPT treatment.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
DS is pretty much the same as above. Doesn't normally cough. Usually doesn't bring anything up. In fact his CF doctor wants to know if he gets a cough, so he can prescribe any meds accordingly. Also we increase CPT/vest from 3 x a day to 4 or more. Bascially we focus on keeping the lungs healthy so things don't grow. Oh, and last winter when I had bronchitis, I had DH beat me to get that stuff up and out.
And I too would suggest they do a throat or sputum culture for CF. See if anything is growing there. When DS first cultured pseudomonas, he didn't have any symptons.
With his cpt he gets albuterol/atrovent nebulized. Every other month he's on tobi twice a day (nebulized) and before be he gets nebulized pulmozyme. He gets digestive enzymes, aqua adeks vitamin drops, vitamin K, keflex, zithromax, actigall, septra for oral meds. We mix cream in with his milk or give him carnation instant breakfast for extra calories. Give him extra salt. In fact a few minutes ago he was sitting on the cough watching cartoon and sprinkling salt from the salt shaker on his hand and eating it.
He goes to preschool. During the winter he has swimming lessons twice a week and gymnastics once a week. He still takes naps in the afternoon -- he's 4, but it's probably because we keep him up later at night to do that last CPT treatment.
DS is pretty much the same as above. Doesn't normally cough. Usually doesn't bring anything up. In fact his CF doctor wants to know if he gets a cough, so he can prescribe any meds accordingly. Also we increase CPT/vest from 3 x a day to 4 or more. Bascially we focus on keeping the lungs healthy so things don't grow. Oh, and last winter when I had bronchitis, I had DH beat me to get that stuff up and out.
And I too would suggest they do a throat or sputum culture for CF. See if anything is growing there. When DS first cultured pseudomonas, he didn't have any symptons.
With his cpt he gets albuterol/atrovent nebulized. Every other month he's on tobi twice a day (nebulized) and before be he gets nebulized pulmozyme. He gets digestive enzymes, aqua adeks vitamin drops, vitamin K, keflex, zithromax, actigall, septra for oral meds. We mix cream in with his milk or give him carnation instant breakfast for extra calories. Give him extra salt. In fact a few minutes ago he was sitting on the cough watching cartoon and sprinkling salt from the salt shaker on his hand and eating it.
He goes to preschool. During the winter he has swimming lessons twice a week and gymnastics once a week. He still takes naps in the afternoon -- he's 4, but it's probably because we keep him up later at night to do that last CPT treatment.