So lost

tabbycat821 · Mar 30, 2009

He is on zantac and has been for a couple weeks now which has appeared to help his eating and not having the reflux but it has not helped the vomiting. In the last week or so his vomiting has seemed ti have gotten worse which is why they said I should put cereal in the formula but that hasn't helped either. My husband and I were talking about how I afraid there is something else going on but I don't know what. We just recently moved and are in limbo between clinics as we wait for our info to be transferred which makes everything that much harder. I am still a bit at a lose as to what I should be doing.

tabbycat821 · Mar 30, 2009

He is on zantac and has been for a couple weeks now which has appeared to help his eating and not having the reflux but it has not helped the vomiting. In the last week or so his vomiting has seemed ti have gotten worse which is why they said I should put cereal in the formula but that hasn't helped either. My husband and I were talking about how I afraid there is something else going on but I don't know what. We just recently moved and are in limbo between clinics as we wait for our info to be transferred which makes everything that much harder. I am still a bit at a lose as to what I should be doing.

tabbycat821 · Mar 30, 2009

He is on zantac and has been for a couple weeks now which has appeared to help his eating and not having the reflux but it has not helped the vomiting. In the last week or so his vomiting has seemed ti have gotten worse which is why they said I should put cereal in the formula but that hasn't helped either. My husband and I were talking about how I afraid there is something else going on but I don't know what. We just recently moved and are in limbo between clinics as we wait for our info to be transferred which makes everything that much harder. I am still a bit at a lose as to what I should be doing.

tabbycat821 · Mar 30, 2009

He is on zantac and has been for a couple weeks now which has appeared to help his eating and not having the reflux but it has not helped the vomiting. In the last week or so his vomiting has seemed ti have gotten worse which is why they said I should put cereal in the formula but that hasn't helped either. My husband and I were talking about how I afraid there is something else going on but I don't know what. We just recently moved and are in limbo between clinics as we wait for our info to be transferred which makes everything that much harder. I am still a bit at a lose as to what I should be doing.

tabbycat821 · Mar 30, 2009

He is on zantac and has been for a couple weeks now which has appeared to help his eating and not having the reflux but it has not helped the vomiting. In the last week or so his vomiting has seemed ti have gotten worse which is why they said I should put cereal in the formula but that hasn't helped either. My husband and I were talking about how I afraid there is something else going on but I don't know what. We just recently moved and are in limbo between clinics as we wait for our info to be transferred which makes everything that much harder. I am still a bit at a lose as to what I should be doing.

ymikhale · Mar 30, 2009

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

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.</end quote></div>

I am so glad I came across your post, Katie. I have been having this nagging feeling that we are not doing enough for my daughter (14 months old). She does not have any nebulizers or anything, just CPT and dietary supplements. I onced asked our doctor whether we should put her on hypertonic saline and she said that one has to weigh risk and benefits and that it could irritate the lungs. Having been reading this forum for a while I was under impression that we were the only ones without a nebulizer but now I see that it is an accepted approach and not just an omission on the part of our doctor.

ymikhale · Mar 30, 2009

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

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.</end quote></div>

I am so glad I came across your post, Katie. I have been having this nagging feeling that we are not doing enough for my daughter (14 months old). She does not have any nebulizers or anything, just CPT and dietary supplements. I onced asked our doctor whether we should put her on hypertonic saline and she said that one has to weigh risk and benefits and that it could irritate the lungs. Having been reading this forum for a while I was under impression that we were the only ones without a nebulizer but now I see that it is an accepted approach and not just an omission on the part of our doctor.

ymikhale · Mar 30, 2009

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

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.</end quote></div>

I am so glad I came across your post, Katie. I have been having this nagging feeling that we are not doing enough for my daughter (14 months old). She does not have any nebulizers or anything, just CPT and dietary supplements. I onced asked our doctor whether we should put her on hypertonic saline and she said that one has to weigh risk and benefits and that it could irritate the lungs. Having been reading this forum for a while I was under impression that we were the only ones without a nebulizer but now I see that it is an accepted approach and not just an omission on the part of our doctor.

ymikhale · Mar 30, 2009

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

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.</end quote>

I am so glad I came across your post, Katie. I have been having this nagging feeling that we are not doing enough for my daughter (14 months old). She does not have any nebulizers or anything, just CPT and dietary supplements. I onced asked our doctor whether we should put her on hypertonic saline and she said that one has to weigh risk and benefits and that it could irritate the lungs. Having been reading this forum for a while I was under impression that we were the only ones without a nebulizer but now I see that it is an accepted approach and not just an omission on the part of our doctor.

ymikhale · Mar 30, 2009

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>
<br />
<br />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.
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<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.
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<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.</end quote>
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<br />I am so glad I came across your post, Katie. I have been having this nagging feeling that we are not doing enough for my daughter (14 months old). She does not have any nebulizers or anything, just CPT and dietary supplements. I onced asked our doctor whether we should put her on hypertonic saline and she said that one has to weigh risk and benefits and that it could irritate the lungs. Having been reading this forum for a while I was under impression that we were the only ones without a nebulizer but now I see that it is an accepted approach and not just an omission on the part of our doctor.

kitomd21 · Mar 30, 2009