So lost

[tabbycat821]

I am so lost. Our son is 7 weeks old and he was diagnosed when he was 1 week. He is gaining weight or at least was at our last visit but yet he's throwing up at least once a day. He is currently on Pulmozyne once a day, Xopenex once a day, chest PT 1-2 times a day, vitamins, half a capsule of enzymes at each feeding, salt in the bottles,saline drops with the aspirator and they just added him on cereal in his formula which is lactose free. I feel so overwhelmed and lost with everything. It also seems that them continuing to put him on more stuff isnt necessarily helping and my husband thinks that everything is overkill. Now with the vomiting I am lost as to what is helping.I am very lost, overwhelmed, and definitely in need of support.

 

[tabbycat821]

I am so lost. Our son is 7 weeks old and he was diagnosed when he was 1 week. He is gaining weight or at least was at our last visit but yet he's throwing up at least once a day. He is currently on Pulmozyne once a day, Xopenex once a day, chest PT 1-2 times a day, vitamins, half a capsule of enzymes at each feeding, salt in the bottles,saline drops with the aspirator and they just added him on cereal in his formula which is lactose free. I feel so overwhelmed and lost with everything. It also seems that them continuing to put him on more stuff isnt necessarily helping and my husband thinks that everything is overkill. Now with the vomiting I am lost as to what is helping.I am very lost, overwhelmed, and definitely in need of support.

 

[tabbycat821]

I am so lost. Our son is 7 weeks old and he was diagnosed when he was 1 week. He is gaining weight or at least was at our last visit but yet he's throwing up at least once a day. He is currently on Pulmozyne once a day, Xopenex once a day, chest PT 1-2 times a day, vitamins, half a capsule of enzymes at each feeding, salt in the bottles,saline drops with the aspirator and they just added him on cereal in his formula which is lactose free. I feel so overwhelmed and lost with everything. It also seems that them continuing to put him on more stuff isnt necessarily helping and my husband thinks that everything is overkill. Now with the vomiting I am lost as to what is helping.I am very lost, overwhelmed, and definitely in need of support.

 

[tabbycat821]

I am so lost. Our son is 7 weeks old and he was diagnosed when he was 1 week. He is gaining weight or at least was at our last visit but yet he's throwing up at least once a day. He is currently on Pulmozyne once a day, Xopenex once a day, chest PT 1-2 times a day, vitamins, half a capsule of enzymes at each feeding, salt in the bottles,saline drops with the aspirator and they just added him on cereal in his formula which is lactose free. I feel so overwhelmed and lost with everything. It also seems that them continuing to put him on more stuff isnt necessarily helping and my husband thinks that everything is overkill. Now with the vomiting I am lost as to what is helping.I am very lost, overwhelmed, and definitely in need of support.

 

[tabbycat821]

I am so lost. Our son is 7 weeks old and he was diagnosed when he was 1 week. He is gaining weight or at least was at our last visit but yet he's throwing up at least once a day. He is currently on Pulmozyne once a day, Xopenex once a day, chest PT 1-2 times a day, vitamins, half a capsule of enzymes at each feeding, salt in the bottles,saline drops with the aspirator and they just added him on cereal in his formula which is lactose free. I feel so overwhelmed and lost with everything. It also seems that them continuing to put him on more stuff isnt necessarily helping and my husband thinks that everything is overkill. Now with the vomiting I am lost as to what is helping.I am very lost, overwhelmed, and definitely in need of support.

 

[kitomd21]

Hi there - nice to meet you! 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]

Hi there - nice to meet you! 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]

Hi there - nice to meet you! 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]

Hi there - nice to meet you! 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]

Hi there - nice to meet you! 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.
<br />
<br />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.
<br />
<br />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.

 

[saveferris2009]

a great article for you to read:


<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=all">http://www.newyorker.com/archi...a_fact?currentPage=all</a>

 

[saveferris2009]

a great article for you to read:


<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=all">http://www.newyorker.com/archi...a_fact?currentPage=all</a>

 

[saveferris2009]

a great article for you to read:


<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=all">http://www.newyorker.com/archi...a_fact?currentPage=all</a>

 

[saveferris2009]

a great article for you to read:


<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=all">http://www.newyorker.com/archi...a_fact?currentPage=all</a>

 

[saveferris2009]

a great article for you to read:
<br />
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=all">http://www.newyorker.com/archi...a_fact?currentPage=all</a>

 

[Ratatosk]

When DS was diagnosed, he spent 4 weeks in the NICU and another two weeks at the local hospital. And little by little we got into a routine, learned how to do cpt, adminster meds, enzymes... But it was still overwhelming when ever a new medication was added. Just a reminder that DS really did have CF. As resentful as I felt, I also knew that it was important to be proactive and to do the best we could. We don't ever want to regret not doing something.

The CF diagnosis is pretty much a grieving process -- denial, anger... You're dealing with that AND the dreaded pregnancy hormones. Sometimes I'd cry for days at the unfairnes of it all. Just remember that your son is still a normal little boy, who just happens to need a "few" extra things to keep him healthy.

 

[Ratatosk]

When DS was diagnosed, he spent 4 weeks in the NICU and another two weeks at the local hospital. And little by little we got into a routine, learned how to do cpt, adminster meds, enzymes... But it was still overwhelming when ever a new medication was added. Just a reminder that DS really did have CF. As resentful as I felt, I also knew that it was important to be proactive and to do the best we could. We don't ever want to regret not doing something.

The CF diagnosis is pretty much a grieving process -- denial, anger... You're dealing with that AND the dreaded pregnancy hormones. Sometimes I'd cry for days at the unfairnes of it all. Just remember that your son is still a normal little boy, who just happens to need a "few" extra things to keep him healthy.

 

[Ratatosk]

When DS was diagnosed, he spent 4 weeks in the NICU and another two weeks at the local hospital. And little by little we got into a routine, learned how to do cpt, adminster meds, enzymes... But it was still overwhelming when ever a new medication was added. Just a reminder that DS really did have CF. As resentful as I felt, I also knew that it was important to be proactive and to do the best we could. We don't ever want to regret not doing something.

The CF diagnosis is pretty much a grieving process -- denial, anger... You're dealing with that AND the dreaded pregnancy hormones. Sometimes I'd cry for days at the unfairnes of it all. Just remember that your son is still a normal little boy, who just happens to need a "few" extra things to keep him healthy.

 

[Ratatosk]

When DS was diagnosed, he spent 4 weeks in the NICU and another two weeks at the local hospital. And little by little we got into a routine, learned how to do cpt, adminster meds, enzymes... But it was still overwhelming when ever a new medication was added. Just a reminder that DS really did have CF. As resentful as I felt, I also knew that it was important to be proactive and to do the best we could. We don't ever want to regret not doing something.

The CF diagnosis is pretty much a grieving process -- denial, anger... You're dealing with that AND the dreaded pregnancy hormones. Sometimes I'd cry for days at the unfairnes of it all. Just remember that your son is still a normal little boy, who just happens to need a "few" extra things to keep him healthy.

 

[Ratatosk]

When DS was diagnosed, he spent 4 weeks in the NICU and another two weeks at the local hospital. And little by little we got into a routine, learned how to do cpt, adminster meds, enzymes... But it was still overwhelming when ever a new medication was added. Just a reminder that DS really did have CF. As resentful as I felt, I also knew that it was important to be proactive and to do the best we could. We don't ever want to regret not doing something.
<br />
<br />The CF diagnosis is pretty much a grieving process -- denial, anger... You're dealing with that AND the dreaded pregnancy hormones. Sometimes I'd cry for days at the unfairnes of it all. Just remember that your son is still a normal little boy, who just happens to need a "few" extra things to keep him healthy.