when did your child start breathing treatments?

grantsmom · Apr 8, 2009

I was just wondering when your children starting breathing treatments. Grant is now 7 months old, he takes enzymes, zantac, vitamins and chest percussion twice a day. From what I've been reading here some babies start these much sooner. I would appreciate any feedback on this subject. Is it normal for babies at this age to not be on any breathing treatments?

grantsmom · Apr 8, 2009

I was just wondering when your children starting breathing treatments. Grant is now 7 months old, he takes enzymes, zantac, vitamins and chest percussion twice a day. From what I've been reading here some babies start these much sooner. I would appreciate any feedback on this subject. Is it normal for babies at this age to not be on any breathing treatments?

grantsmom · Apr 8, 2009

I was just wondering when your children starting breathing treatments. Grant is now 7 months old, he takes enzymes, zantac, vitamins and chest percussion twice a day. From what I've been reading here some babies start these much sooner. I would appreciate any feedback on this subject. Is it normal for babies at this age to not be on any breathing treatments?

grantsmom · Apr 8, 2009

I was just wondering when your children starting breathing treatments. Grant is now 7 months old, he takes enzymes, zantac, vitamins and chest percussion twice a day. From what I've been reading here some babies start these much sooner. I would appreciate any feedback on this subject. Is it normal for babies at this age to not be on any breathing treatments?

grantsmom · Apr 8, 2009

I was just wondering when your children starting breathing treatments. Grant is now 7 months old, he takes enzymes, zantac, vitamins and chest percussion twice a day. From what I've been reading here some babies start these much sooner. I would appreciate any feedback on this subject. Is it normal for babies at this age to not be on any breathing treatments?

tabbycat821 · Apr 8, 2009

Our son is 8 weeks old and he is on all those same meds and he gets the percussion and he is in breathing treatments of xopenex and pulmozyme and has been on them for about 3 1/2 weeks. They put him on them when he was atarting to have a cough and got strep.They are not fun and I'm not quite sure if they help or not.

tabbycat821 · Apr 8, 2009

Our son is 8 weeks old and he is on all those same meds and he gets the percussion and he is in breathing treatments of xopenex and pulmozyme and has been on them for about 3 1/2 weeks. They put him on them when he was atarting to have a cough and got strep.They are not fun and I'm not quite sure if they help or not.

tabbycat821 · Apr 8, 2009

Our son is 8 weeks old and he is on all those same meds and he gets the percussion and he is in breathing treatments of xopenex and pulmozyme and has been on them for about 3 1/2 weeks. They put him on them when he was atarting to have a cough and got strep.They are not fun and I'm not quite sure if they help or not.

tabbycat821 · Apr 8, 2009

Our son is 8 weeks old and he is on all those same meds and he gets the percussion and he is in breathing treatments of xopenex and pulmozyme and has been on them for about 3 1/2 weeks. They put him on them when he was atarting to have a cough and got strep.They are not fun and I'm not quite sure if they help or not.

tabbycat821 · Apr 8, 2009

Our son is 8 weeks old and he is on all those same meds and he gets the percussion and he is in breathing treatments of xopenex and pulmozyme and has been on them for about 3 1/2 weeks. They put him on them when he was atarting to have a cough and got strep.They are not fun and I'm not quite sure if they help or not.

kitomd21 · Apr 9, 2009

From the Newly Diagnosed Section: Thread: "So Lost".....

Our daughter is 9 1/2 months old and was diagnosed via newborn screening. What has frustrated me among available CF treatments is the lack of consistency between CF clinics. While some CF doctors are prescribing nebulized treatments for infants (e.g., Pulmozyme, Hypertonic Saline) her doctor doesn't believe it's safe to expose her small airways to such irritating substances. Also note that there isn't any published data regarding their use with infants, or children less than 6 years of age, for that matter. Currently, there is a study on hypertonic saline use and infants, but the results aren't available at this stage. Her doctors attend the annual CF Conference and keep current with the recommendations of the CFF - not that your son's doctors don't abide by CFF recommendations, but is important to note that there is no safety data regarding the aforementioned treatments and infant lungs. It would appear that your son's doctor is trying to take a proactive approach, but it's also worthy of considering how irritating these inhaled treatments are on such young lungs....it would concern me....but then again, I'm going on the assumption that my daughter's doctors have the correct approach.

Our daughter receives Pancrease MT4s (8 "beads" per feeding), Zantac 3x daily, AquADEKS, salt supplementation, and CPT 3x daily (20mins each session), and albuterol inhaler with each CPT. She has absolutely no interest in solid foods, thus she is primarily consuming fortified breast milk. Breast milk is fortified with 2 scoops (actual vol?) of Enfamil Gentlease to equal something close to 27 - 29 calories/ounce.

I wish I could offer you a more definitive answer...there are those on this forum that will echo your son's treatments while others will take a position similar to mine. Our CF doctor maintains that he will treat her aggressively as soon as she cultures pseudomonas in hopes to eradicate it at the acute vs. attempt to do so at the chronic stage.

kitomd21 · Apr 9, 2009

From the Newly Diagnosed Section: Thread: "So Lost".....

Our daughter is 9 1/2 months old and was diagnosed via newborn screening. What has frustrated me among available CF treatments is the lack of consistency between CF clinics. While some CF doctors are prescribing nebulized treatments for infants (e.g., Pulmozyme, Hypertonic Saline) her doctor doesn't believe it's safe to expose her small airways to such irritating substances. Also note that there isn't any published data regarding their use with infants, or children less than 6 years of age, for that matter. Currently, there is a study on hypertonic saline use and infants, but the results aren't available at this stage. Her doctors attend the annual CF Conference and keep current with the recommendations of the CFF - not that your son's doctors don't abide by CFF recommendations, but is important to note that there is no safety data regarding the aforementioned treatments and infant lungs. It would appear that your son's doctor is trying to take a proactive approach, but it's also worthy of considering how irritating these inhaled treatments are on such young lungs....it would concern me....but then again, I'm going on the assumption that my daughter's doctors have the correct approach.

Our daughter receives Pancrease MT4s (8 "beads" per feeding), Zantac 3x daily, AquADEKS, salt supplementation, and CPT 3x daily (20mins each session), and albuterol inhaler with each CPT. She has absolutely no interest in solid foods, thus she is primarily consuming fortified breast milk. Breast milk is fortified with 2 scoops (actual vol?) of Enfamil Gentlease to equal something close to 27 - 29 calories/ounce.

I wish I could offer you a more definitive answer...there are those on this forum that will echo your son's treatments while others will take a position similar to mine. Our CF doctor maintains that he will treat her aggressively as soon as she cultures pseudomonas in hopes to eradicate it at the acute vs. attempt to do so at the chronic stage.

kitomd21 · Apr 9, 2009

From the Newly Diagnosed Section: Thread: "So Lost".....

Our daughter is 9 1/2 months old and was diagnosed via newborn screening. What has frustrated me among available CF treatments is the lack of consistency between CF clinics. While some CF doctors are prescribing nebulized treatments for infants (e.g., Pulmozyme, Hypertonic Saline) her doctor doesn't believe it's safe to expose her small airways to such irritating substances. Also note that there isn't any published data regarding their use with infants, or children less than 6 years of age, for that matter. Currently, there is a study on hypertonic saline use and infants, but the results aren't available at this stage. Her doctors attend the annual CF Conference and keep current with the recommendations of the CFF - not that your son's doctors don't abide by CFF recommendations, but is important to note that there is no safety data regarding the aforementioned treatments and infant lungs. It would appear that your son's doctor is trying to take a proactive approach, but it's also worthy of considering how irritating these inhaled treatments are on such young lungs....it would concern me....but then again, I'm going on the assumption that my daughter's doctors have the correct approach.

Our daughter receives Pancrease MT4s (8 "beads" per feeding), Zantac 3x daily, AquADEKS, salt supplementation, and CPT 3x daily (20mins each session), and albuterol inhaler with each CPT. She has absolutely no interest in solid foods, thus she is primarily consuming fortified breast milk. Breast milk is fortified with 2 scoops (actual vol?) of Enfamil Gentlease to equal something close to 27 - 29 calories/ounce.

I wish I could offer you a more definitive answer...there are those on this forum that will echo your son's treatments while others will take a position similar to mine. Our CF doctor maintains that he will treat her aggressively as soon as she cultures pseudomonas in hopes to eradicate it at the acute vs. attempt to do so at the chronic stage.

kitomd21 · Apr 9, 2009

From the Newly Diagnosed Section: Thread: "So Lost".....

Our daughter is 9 1/2 months old and was diagnosed via newborn screening. What has frustrated me among available CF treatments is the lack of consistency between CF clinics. While some CF doctors are prescribing nebulized treatments for infants (e.g., Pulmozyme, Hypertonic Saline) her doctor doesn't believe it's safe to expose her small airways to such irritating substances. Also note that there isn't any published data regarding their use with infants, or children less than 6 years of age, for that matter. Currently, there is a study on hypertonic saline use and infants, but the results aren't available at this stage. Her doctors attend the annual CF Conference and keep current with the recommendations of the CFF - not that your son's doctors don't abide by CFF recommendations, but is important to note that there is no safety data regarding the aforementioned treatments and infant lungs. It would appear that your son's doctor is trying to take a proactive approach, but it's also worthy of considering how irritating these inhaled treatments are on such young lungs....it would concern me....but then again, I'm going on the assumption that my daughter's doctors have the correct approach.

Our daughter receives Pancrease MT4s (8 "beads" per feeding), Zantac 3x daily, AquADEKS, salt supplementation, and CPT 3x daily (20mins each session), and albuterol inhaler with each CPT. She has absolutely no interest in solid foods, thus she is primarily consuming fortified breast milk. Breast milk is fortified with 2 scoops (actual vol?) of Enfamil Gentlease to equal something close to 27 - 29 calories/ounce.

I wish I could offer you a more definitive answer...there are those on this forum that will echo your son's treatments while others will take a position similar to mine. Our CF doctor maintains that he will treat her aggressively as soon as she cultures pseudomonas in hopes to eradicate it at the acute vs. attempt to do so at the chronic stage.

kitomd21 · Apr 9, 2009

From the Newly Diagnosed Section: Thread: "So Lost".....
 
 Our daughter is 9 1/2 months old and was diagnosed via newborn screening. What has frustrated me among available CF treatments is the lack of consistency between CF clinics. While some CF doctors are prescribing nebulized treatments for infants (e.g., Pulmozyme, Hypertonic Saline) her doctor doesn't believe it's safe to expose her small airways to such irritating substances. Also note that there isn't any published data regarding their use with infants, or children less than 6 years of age, for that matter. Currently, there is a study on hypertonic saline use and infants, but the results aren't available at this stage. Her doctors attend the annual CF Conference and keep current with the recommendations of the CFF - not that your son's doctors don't abide by CFF recommendations, but is important to note that there is no safety data regarding the aforementioned treatments and infant lungs. It would appear that your son's doctor is trying to take a proactive approach, but it's also worthy of considering how irritating these inhaled treatments are on such young lungs....it would concern me....but then again, I'm going on the assumption that my daughter's doctors have the correct approach.
 
 Our daughter receives Pancrease MT4s (8 "beads" per feeding), Zantac 3x daily, AquADEKS, salt supplementation, and CPT 3x daily (20mins each session), and albuterol inhaler with each CPT. She has absolutely no interest in solid foods, thus she is primarily consuming fortified breast milk. Breast milk is fortified with 2 scoops (actual vol?) of Enfamil Gentlease to equal something close to 27 - 29 calories/ounce.
 
 I wish I could offer you a more definitive answer...there are those on this forum that will echo your son's treatments while others will take a position similar to mine. Our CF doctor maintains that he will treat her aggressively as soon as she cultures pseudomonas in hopes to eradicate it at the acute vs. attempt to do so at the chronic stage.

grassisgreener · Apr 9, 2009

My daughter started Pulmozyme a few months after she turned 5. She mainly started it to help with her sinuses (she uses the Bubbles mask and it helps thin her sinus mucus). That is the only regular neb she does. We have albuterol on hand to give when she has a cold to help open the airways more to get the pulmozyme in as deep as possible. Her pfts are always over 100 (last 2 being 115 and 121) and she hasn't had any lung trouble yet. I think the meds are great when they are needed and we always act quickly to increase her vest sessions with a cold and for awhile after cold is gone. I have wondered over the past few years about whether she was taking enough meds bc it seems like alot of kids represented here are taking more than she was, I wondered enough that I emailed Dr. Warwick about it for a second opinion and he straight out said that he is not a fan of "blanket treatments" and to keep doing what we were doing. This was before my daughter was on Pulmozyme, so almost 5 years of no regular nebs (but lots of CPT & vitamins/minerals) and he approved it. I think it is always good to investigate and second guess just in case you are missing something.

grassisgreener · Apr 9, 2009

My daughter started Pulmozyme a few months after she turned 5. She mainly started it to help with her sinuses (she uses the Bubbles mask and it helps thin her sinus mucus). That is the only regular neb she does. We have albuterol on hand to give when she has a cold to help open the airways more to get the pulmozyme in as deep as possible. Her pfts are always over 100 (last 2 being 115 and 121) and she hasn't had any lung trouble yet. I think the meds are great when they are needed and we always act quickly to increase her vest sessions with a cold and for awhile after cold is gone. I have wondered over the past few years about whether she was taking enough meds bc it seems like alot of kids represented here are taking more than she was, I wondered enough that I emailed Dr. Warwick about it for a second opinion and he straight out said that he is not a fan of "blanket treatments" and to keep doing what we were doing. This was before my daughter was on Pulmozyme, so almost 5 years of no regular nebs (but lots of CPT & vitamins/minerals) and he approved it. I think it is always good to investigate and second guess just in case you are missing something.

grassisgreener · Apr 9, 2009

My daughter started Pulmozyme a few months after she turned 5. She mainly started it to help with her sinuses (she uses the Bubbles mask and it helps thin her sinus mucus). That is the only regular neb she does. We have albuterol on hand to give when she has a cold to help open the airways more to get the pulmozyme in as deep as possible. Her pfts are always over 100 (last 2 being 115 and 121) and she hasn't had any lung trouble yet. I think the meds are great when they are needed and we always act quickly to increase her vest sessions with a cold and for awhile after cold is gone. I have wondered over the past few years about whether she was taking enough meds bc it seems like alot of kids represented here are taking more than she was, I wondered enough that I emailed Dr. Warwick about it for a second opinion and he straight out said that he is not a fan of "blanket treatments" and to keep doing what we were doing. This was before my daughter was on Pulmozyme, so almost 5 years of no regular nebs (but lots of CPT & vitamins/minerals) and he approved it. I think it is always good to investigate and second guess just in case you are missing something.

grassisgreener · Apr 9, 2009

My daughter started Pulmozyme a few months after she turned 5. She mainly started it to help with her sinuses (she uses the Bubbles mask and it helps thin her sinus mucus). That is the only regular neb she does. We have albuterol on hand to give when she has a cold to help open the airways more to get the pulmozyme in as deep as possible. Her pfts are always over 100 (last 2 being 115 and 121) and she hasn't had any lung trouble yet. I think the meds are great when they are needed and we always act quickly to increase her vest sessions with a cold and for awhile after cold is gone. I have wondered over the past few years about whether she was taking enough meds bc it seems like alot of kids represented here are taking more than she was, I wondered enough that I emailed Dr. Warwick about it for a second opinion and he straight out said that he is not a fan of "blanket treatments" and to keep doing what we were doing. This was before my daughter was on Pulmozyme, so almost 5 years of no regular nebs (but lots of CPT & vitamins/minerals) and he approved it. I think it is always good to investigate and second guess just in case you are missing something.

grassisgreener · Apr 9, 2009

My daughter started Pulmozyme a few months after she turned 5. She mainly started it to help with her sinuses (she uses the Bubbles mask and it helps thin her sinus mucus). That is the only regular neb she does. We have albuterol on hand to give when she has a cold to help open the airways more to get the pulmozyme in as deep as possible. Her pfts are always over 100 (last 2 being 115 and 121) and she hasn't had any lung trouble yet. I think the meds are great when they are needed and we always act quickly to increase her vest sessions with a cold and for awhile after cold is gone. I have wondered over the past few years about whether she was taking enough meds bc it seems like alot of kids represented here are taking more than she was, I wondered enough that I emailed Dr. Warwick about it for a second opinion and he straight out said that he is not a fan of "blanket treatments" and to keep doing what we were doing. This was before my daughter was on Pulmozyme, so almost 5 years of no regular nebs (but lots of CPT & vitamins/minerals) and he approved it. I think it is always good to investigate and second guess just in case you are missing something.

when did your child start breathing treatments?

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