Need your option - separate ends of the spectrum?!

[kitomd21]

I posted not long ago about seeking a consult at an alternate CF center based upon concerns with our current center. I mentioned Stanford as an alternative but was advised by them (a Stanford CF nurse) that Sutter's CF center (Sac/Roseville) would be equally advisable in comparison to Stanford at this point in Ellie's treatment. In addition, the Stanford nurse very clearly stated that she "would not take her child to the UC Davis CF Center".

We had our consult with Sutter today - tell me your thoughts based upon these comparisons....

1. Sutter: Vest vs manual CPT essentially the same at Ellie's age. Wait until approx. 18 mos.

UCD: Vest when chest measures 18".

2. Sutter: Pancrease MT4's - 4 capsules with each feeding.

UCD: up to 4 capsules but we have been advised to give 8 - 10 beads per feeding up until the last visit when we were told we could go up to four full capsules.

-- Sutter: Incredulous that the enzyme dosing has been so low, given Ellie's low weight:length %. They stated that she should have been on at least 1 full caspule by 2 mos old!

3. Sutter: Start Pulmozyme immediately given that Ellie has an occassional cough and was hospitalized at 2 weeks old due to respiratory issues (no hosp. or abx since that time...1 yr later).

UCD: Pulmozyme isn't approved for infants and there is concern for irritating her small airways.

4. CF Clinic. Sutter: No specific CF clinic days out of concern for cross-infection.

UCD: CF patients only seen on Tuesdays so they can also meet with the "CF team" consisting of an RT, social worker, and nutritionist. FYI - we have never met with an RT aside from her hospital stay at 2 weeks of age. We "saw" an RT at clinic when she showed us what the vest looks like. They haven't verified that we're even peforming CPT properly or asked if we need additional percussors, etc...

The Sutter doctor used to work at Children's Philadelphia and stated that their center is one of the top ten in the nation. Essentially, she said she learned most of her CF care from their aggressive approach. She also stated (obviously without guarantee) that she foresees Ellie living into her 50s based upon the meds that are available now vs. even ten years ago.

Sorry for such a long post! Just wanted to share and ask for your opinions. Thanks!

 

[kitomd21]

I posted not long ago about seeking a consult at an alternate CF center based upon concerns with our current center. I mentioned Stanford as an alternative but was advised by them (a Stanford CF nurse) that Sutter's CF center (Sac/Roseville) would be equally advisable in comparison to Stanford at this point in Ellie's treatment. In addition, the Stanford nurse very clearly stated that she "would not take her child to the UC Davis CF Center".

We had our consult with Sutter today - tell me your thoughts based upon these comparisons....

1. Sutter: Vest vs manual CPT essentially the same at Ellie's age. Wait until approx. 18 mos.

UCD: Vest when chest measures 18".

2. Sutter: Pancrease MT4's - 4 capsules with each feeding.

UCD: up to 4 capsules but we have been advised to give 8 - 10 beads per feeding up until the last visit when we were told we could go up to four full capsules.

-- Sutter: Incredulous that the enzyme dosing has been so low, given Ellie's low weight:length %. They stated that she should have been on at least 1 full caspule by 2 mos old!

3. Sutter: Start Pulmozyme immediately given that Ellie has an occassional cough and was hospitalized at 2 weeks old due to respiratory issues (no hosp. or abx since that time...1 yr later).

UCD: Pulmozyme isn't approved for infants and there is concern for irritating her small airways.

4. CF Clinic. Sutter: No specific CF clinic days out of concern for cross-infection.

UCD: CF patients only seen on Tuesdays so they can also meet with the "CF team" consisting of an RT, social worker, and nutritionist. FYI - we have never met with an RT aside from her hospital stay at 2 weeks of age. We "saw" an RT at clinic when she showed us what the vest looks like. They haven't verified that we're even peforming CPT properly or asked if we need additional percussors, etc...

The Sutter doctor used to work at Children's Philadelphia and stated that their center is one of the top ten in the nation. Essentially, she said she learned most of her CF care from their aggressive approach. She also stated (obviously without guarantee) that she foresees Ellie living into her 50s based upon the meds that are available now vs. even ten years ago.

Sorry for such a long post! Just wanted to share and ask for your opinions. Thanks!

 

[kitomd21]

I posted not long ago about seeking a consult at an alternate CF center based upon concerns with our current center. I mentioned Stanford as an alternative but was advised by them (a Stanford CF nurse) that Sutter's CF center (Sac/Roseville) would be equally advisable in comparison to Stanford at this point in Ellie's treatment. In addition, the Stanford nurse very clearly stated that she "would not take her child to the UC Davis CF Center".

We had our consult with Sutter today - tell me your thoughts based upon these comparisons....

1. Sutter: Vest vs manual CPT essentially the same at Ellie's age. Wait until approx. 18 mos.

UCD: Vest when chest measures 18".

2. Sutter: Pancrease MT4's - 4 capsules with each feeding.

UCD: up to 4 capsules but we have been advised to give 8 - 10 beads per feeding up until the last visit when we were told we could go up to four full capsules.

-- Sutter: Incredulous that the enzyme dosing has been so low, given Ellie's low weight:length %. They stated that she should have been on at least 1 full caspule by 2 mos old!

3. Sutter: Start Pulmozyme immediately given that Ellie has an occassional cough and was hospitalized at 2 weeks old due to respiratory issues (no hosp. or abx since that time...1 yr later).

UCD: Pulmozyme isn't approved for infants and there is concern for irritating her small airways.

4. CF Clinic. Sutter: No specific CF clinic days out of concern for cross-infection.

UCD: CF patients only seen on Tuesdays so they can also meet with the "CF team" consisting of an RT, social worker, and nutritionist. FYI - we have never met with an RT aside from her hospital stay at 2 weeks of age. We "saw" an RT at clinic when she showed us what the vest looks like. They haven't verified that we're even peforming CPT properly or asked if we need additional percussors, etc...

The Sutter doctor used to work at Children's Philadelphia and stated that their center is one of the top ten in the nation. Essentially, she said she learned most of her CF care from their aggressive approach. She also stated (obviously without guarantee) that she foresees Ellie living into her 50s based upon the meds that are available now vs. even ten years ago.

Sorry for such a long post! Just wanted to share and ask for your opinions. Thanks!

 

[kitomd21]

I posted not long ago about seeking a consult at an alternate CF center based upon concerns with our current center. I mentioned Stanford as an alternative but was advised by them (a Stanford CF nurse) that Sutter's CF center (Sac/Roseville) would be equally advisable in comparison to Stanford at this point in Ellie's treatment. In addition, the Stanford nurse very clearly stated that she "would not take her child to the UC Davis CF Center".

We had our consult with Sutter today - tell me your thoughts based upon these comparisons....

1. Sutter: Vest vs manual CPT essentially the same at Ellie's age. Wait until approx. 18 mos.

UCD: Vest when chest measures 18".

2. Sutter: Pancrease MT4's - 4 capsules with each feeding.

UCD: up to 4 capsules but we have been advised to give 8 - 10 beads per feeding up until the last visit when we were told we could go up to four full capsules.

-- Sutter: Incredulous that the enzyme dosing has been so low, given Ellie's low weight:length %. They stated that she should have been on at least 1 full caspule by 2 mos old!

3. Sutter: Start Pulmozyme immediately given that Ellie has an occassional cough and was hospitalized at 2 weeks old due to respiratory issues (no hosp. or abx since that time...1 yr later).

UCD: Pulmozyme isn't approved for infants and there is concern for irritating her small airways.

4. CF Clinic. Sutter: No specific CF clinic days out of concern for cross-infection.

UCD: CF patients only seen on Tuesdays so they can also meet with the "CF team" consisting of an RT, social worker, and nutritionist. FYI - we have never met with an RT aside from her hospital stay at 2 weeks of age. We "saw" an RT at clinic when she showed us what the vest looks like. They haven't verified that we're even peforming CPT properly or asked if we need additional percussors, etc...

The Sutter doctor used to work at Children's Philadelphia and stated that their center is one of the top ten in the nation. Essentially, she said she learned most of her CF care from their aggressive approach. She also stated (obviously without guarantee) that she foresees Ellie living into her 50s based upon the meds that are available now vs. even ten years ago.

Sorry for such a long post! Just wanted to share and ask for your opinions. Thanks!

 

[kitomd21]

I posted not long ago about seeking a consult at an alternate CF center based upon concerns with our current center. I mentioned Stanford as an alternative but was advised by them (a Stanford CF nurse) that Sutter's CF center (Sac/Roseville) would be equally advisable in comparison to Stanford at this point in Ellie's treatment. In addition, the Stanford nurse very clearly stated that she "would not take her child to the UC Davis CF Center".
<br />
<br />We had our consult with Sutter today - tell me your thoughts based upon these comparisons....
<br />
<br />1. Sutter: Vest vs manual CPT essentially the same at Ellie's age. Wait until approx. 18 mos.
<br />
<br />UCD: Vest when chest measures 18".
<br />
<br />2. Sutter: Pancrease MT4's - 4 capsules with each feeding.
<br />
<br />UCD: up to 4 capsules but we have been advised to give 8 - 10 beads per feeding up until the last visit when we were told we could go up to four full capsules.
<br />
<br />-- Sutter: Incredulous that the enzyme dosing has been so low, given Ellie's low weight:length %. They stated that she should have been on at least 1 full caspule by 2 mos old!
<br />
<br />3. Sutter: Start Pulmozyme immediately given that Ellie has an occassional cough and was hospitalized at 2 weeks old due to respiratory issues (no hosp. or abx since that time...1 yr later).
<br />
<br />UCD: Pulmozyme isn't approved for infants and there is concern for irritating her small airways.
<br />
<br />4. CF Clinic. Sutter: No specific CF clinic days out of concern for cross-infection.
<br />
<br />UCD: CF patients only seen on Tuesdays so they can also meet with the "CF team" consisting of an RT, social worker, and nutritionist. FYI - we have never met with an RT aside from her hospital stay at 2 weeks of age. We "saw" an RT at clinic when she showed us what the vest looks like. They haven't verified that we're even peforming CPT properly or asked if we need additional percussors, etc...
<br />
<br />The Sutter doctor used to work at Children's Philadelphia and stated that their center is one of the top ten in the nation. Essentially, she said she learned most of her CF care from their aggressive approach. She also stated (obviously without guarantee) that she foresees Ellie living into her 50s based upon the meds that are available now vs. even ten years ago.
<br />
<br />Sorry for such a long post! Just wanted to share and ask for your opinions. Thanks!

 

[Mommafirst]

I think this is very interesting. Personally, I'd want to go with a center that is aggressive in their treatment AND that you feel a connection to the doctors.

Our center doesn't start pulmozyme routinely until age 4 because it hasn't been approved for infants, but when I asked about it, our doctor was very pleased to start her on it.

I think the most concerning thing you posted was about the enzymes.

How are you feeling? Does Sutter seem more appealing to you?

 

[Mommafirst]

I think this is very interesting. Personally, I'd want to go with a center that is aggressive in their treatment AND that you feel a connection to the doctors.

Our center doesn't start pulmozyme routinely until age 4 because it hasn't been approved for infants, but when I asked about it, our doctor was very pleased to start her on it.

I think the most concerning thing you posted was about the enzymes.

How are you feeling? Does Sutter seem more appealing to you?

 

[Mommafirst]

I think this is very interesting. Personally, I'd want to go with a center that is aggressive in their treatment AND that you feel a connection to the doctors.

Our center doesn't start pulmozyme routinely until age 4 because it hasn't been approved for infants, but when I asked about it, our doctor was very pleased to start her on it.

I think the most concerning thing you posted was about the enzymes.

How are you feeling? Does Sutter seem more appealing to you?

 

[Mommafirst]

I think this is very interesting. Personally, I'd want to go with a center that is aggressive in their treatment AND that you feel a connection to the doctors.

Our center doesn't start pulmozyme routinely until age 4 because it hasn't been approved for infants, but when I asked about it, our doctor was very pleased to start her on it.

I think the most concerning thing you posted was about the enzymes.

How are you feeling? Does Sutter seem more appealing to you?

 

[Mommafirst]

I think this is very interesting. Personally, I'd want to go with a center that is aggressive in their treatment AND that you feel a connection to the doctors.
<br />
<br />Our center doesn't start pulmozyme routinely until age 4 because it hasn't been approved for infants, but when I asked about it, our doctor was very pleased to start her on it.
<br />
<br />I think the most concerning thing you posted was about the enzymes.
<br />
<br />How are you feeling? Does Sutter seem more appealing to you?

 

[kitomd21]

UCD and Sutter did agree that staph shouldn't be treated unless she is exibiting symptoms of infection. Sutter mentioned children where staph was treated prematurely and much too aggressively and thereby they began to culture pseudomonas "prematurely" in CF terms. Staph isn't an issue as it helps to keep PA away....treat only if necessary.

 

[kitomd21]

UCD and Sutter did agree that staph shouldn't be treated unless she is exibiting symptoms of infection. Sutter mentioned children where staph was treated prematurely and much too aggressively and thereby they began to culture pseudomonas "prematurely" in CF terms. Staph isn't an issue as it helps to keep PA away....treat only if necessary.

 

[kitomd21]

UCD and Sutter did agree that staph shouldn't be treated unless she is exibiting symptoms of infection. Sutter mentioned children where staph was treated prematurely and much too aggressively and thereby they began to culture pseudomonas "prematurely" in CF terms. Staph isn't an issue as it helps to keep PA away....treat only if necessary.

 

[kitomd21]

UCD and Sutter did agree that staph shouldn't be treated unless she is exibiting symptoms of infection. Sutter mentioned children where staph was treated prematurely and much too aggressively and thereby they began to culture pseudomonas "prematurely" in CF terms. Staph isn't an issue as it helps to keep PA away....treat only if necessary.

 

[kitomd21]

UCD and Sutter did agree that staph shouldn't be treated unless she is exibiting symptoms of infection. Sutter mentioned children where staph was treated prematurely and much too aggressively and thereby they began to culture pseudomonas "prematurely" in CF terms. Staph isn't an issue as it helps to keep PA away....treat only if necessary.

 

[kitomd21]

The odd thing is that I like her UCD doctor, but I'm concerned that he will only be aggressive when she cultures PA...but nothing preventative such as Pulmozyme until then. I'm not happy with the rest of the CF "team" at UCD for many reasons.

I shouldn't be ageist with regard to medicine, but I also have concern for young doctors in that they might not have a lot experience. The Sutter doctor is a bit young, but their other CF doctor is in his 50s. However, a younger doctor might have a fresher and less biased/more "current" approach to CF care. I hope that didn't sound too awful!! <img src="">

The atmosphere is much nicer at Sutter...definitely made me feel like Ellie is a normal kid that happens to have CF. The office is presented in a regular GP type of setting and away from the hospital. At UCD, the appointments are in an older, depressing building with the hospital where she would be admitted right next door.

I shouldn't base her care upon appearance and I'm not...but I do feel that a more disconnected approach to appointments from a hospital setting will help her in her CF struggle to feel "normal".

In terms of medical approach - I need more information regarding whether or not Pulmozyme would be the best thing for her. Are there longterm effects when started so young? Will she suffer more lung damage as a consequence of possible inflammation? The drug is so "new"...I always have concern about unknown side effects, but perhaps that's a risk we should take....

 

[kitomd21]

The odd thing is that I like her UCD doctor, but I'm concerned that he will only be aggressive when she cultures PA...but nothing preventative such as Pulmozyme until then. I'm not happy with the rest of the CF "team" at UCD for many reasons.

I shouldn't be ageist with regard to medicine, but I also have concern for young doctors in that they might not have a lot experience. The Sutter doctor is a bit young, but their other CF doctor is in his 50s. However, a younger doctor might have a fresher and less biased/more "current" approach to CF care. I hope that didn't sound too awful!! <img src="">

The atmosphere is much nicer at Sutter...definitely made me feel like Ellie is a normal kid that happens to have CF. The office is presented in a regular GP type of setting and away from the hospital. At UCD, the appointments are in an older, depressing building with the hospital where she would be admitted right next door.

I shouldn't base her care upon appearance and I'm not...but I do feel that a more disconnected approach to appointments from a hospital setting will help her in her CF struggle to feel "normal".

In terms of medical approach - I need more information regarding whether or not Pulmozyme would be the best thing for her. Are there longterm effects when started so young? Will she suffer more lung damage as a consequence of possible inflammation? The drug is so "new"...I always have concern about unknown side effects, but perhaps that's a risk we should take....

 

[kitomd21]

The odd thing is that I like her UCD doctor, but I'm concerned that he will only be aggressive when she cultures PA...but nothing preventative such as Pulmozyme until then. I'm not happy with the rest of the CF "team" at UCD for many reasons.

I shouldn't be ageist with regard to medicine, but I also have concern for young doctors in that they might not have a lot experience. The Sutter doctor is a bit young, but their other CF doctor is in his 50s. However, a younger doctor might have a fresher and less biased/more "current" approach to CF care. I hope that didn't sound too awful!! <img src="">

The atmosphere is much nicer at Sutter...definitely made me feel like Ellie is a normal kid that happens to have CF. The office is presented in a regular GP type of setting and away from the hospital. At UCD, the appointments are in an older, depressing building with the hospital where she would be admitted right next door.

I shouldn't base her care upon appearance and I'm not...but I do feel that a more disconnected approach to appointments from a hospital setting will help her in her CF struggle to feel "normal".

In terms of medical approach - I need more information regarding whether or not Pulmozyme would be the best thing for her. Are there longterm effects when started so young? Will she suffer more lung damage as a consequence of possible inflammation? The drug is so "new"...I always have concern about unknown side effects, but perhaps that's a risk we should take....

 

[kitomd21]

The odd thing is that I like her UCD doctor, but I'm concerned that he will only be aggressive when she cultures PA...but nothing preventative such as Pulmozyme until then. I'm not happy with the rest of the CF "team" at UCD for many reasons.

I shouldn't be ageist with regard to medicine, but I also have concern for young doctors in that they might not have a lot experience. The Sutter doctor is a bit young, but their other CF doctor is in his 50s. However, a younger doctor might have a fresher and less biased/more "current" approach to CF care. I hope that didn't sound too awful!! <img src="">

The atmosphere is much nicer at Sutter...definitely made me feel like Ellie is a normal kid that happens to have CF. The office is presented in a regular GP type of setting and away from the hospital. At UCD, the appointments are in an older, depressing building with the hospital where she would be admitted right next door.

I shouldn't base her care upon appearance and I'm not...but I do feel that a more disconnected approach to appointments from a hospital setting will help her in her CF struggle to feel "normal".

In terms of medical approach - I need more information regarding whether or not Pulmozyme would be the best thing for her. Are there longterm effects when started so young? Will she suffer more lung damage as a consequence of possible inflammation? The drug is so "new"...I always have concern about unknown side effects, but perhaps that's a risk we should take....

 

[kitomd21]

The odd thing is that I like her UCD doctor, but I'm concerned that he will only be aggressive when she cultures PA...but nothing preventative such as Pulmozyme until then. I'm not happy with the rest of the CF "team" at UCD for many reasons.
<br />
<br />I shouldn't be ageist with regard to medicine, but I also have concern for young doctors in that they might not have a lot experience. The Sutter doctor is a bit young, but their other CF doctor is in his 50s. However, a younger doctor might have a fresher and less biased/more "current" approach to CF care. I hope that didn't sound too awful!! <img src="">
<br />
<br />The atmosphere is much nicer at Sutter...definitely made me feel like Ellie is a normal kid that happens to have CF. The office is presented in a regular GP type of setting and away from the hospital. At UCD, the appointments are in an older, depressing building with the hospital where she would be admitted right next door.
<br />
<br />I shouldn't base her care upon appearance and I'm not...but I do feel that a more disconnected approach to appointments from a hospital setting will help her in her CF struggle to feel "normal".
<br />
<br />In terms of medical approach - I need more information regarding whether or not Pulmozyme would be the best thing for her. Are there longterm effects when started so young? Will she suffer more lung damage as a consequence of possible inflammation? The drug is so "new"...I always have concern about unknown side effects, but perhaps that's a risk we should take....