Frustrated

JosephinesMommy · Aug 7, 2009

So we have been very lucky to have a very "healthy" baby thus far. Yeah, she spent her first 17days in teh NICU after she had surgery on day four for her MI. 17 was a very short stay from what I have heard. BUT

Josephine had elevated liver enzymes at around 1m of age. She took Ursodiol (sp?) for a few months. Blood test showed lowered enzyme levels so the head CF doc told us we no longer needed to give it to her... this was 6m ago. Fast foward to our last appt. Our regular doc orders a blood test just to check her enzyme levels... Yep back up. The gastro doc wonders why we ever stopped... WTH??

Also, I was reading other posts about CPT and vests... I ask everytime and get told that until there is an issue they don't see an need... Is this right? Also, she is getting no inhaled meds either. Is this normal. She is culturing Staph but at the "rare" level, down from 1+ at the last culture.

I just want to make sure that I am giving her the best care possible... so that WHEN there is a "cure" she is in the best healthy possible.

JosephinesMommy · Aug 7, 2009

So we have been very lucky to have a very "healthy" baby thus far. Yeah, she spent her first 17days in teh NICU after she had surgery on day four for her MI. 17 was a very short stay from what I have heard. BUT

Josephine had elevated liver enzymes at around 1m of age. She took Ursodiol (sp?) for a few months. Blood test showed lowered enzyme levels so the head CF doc told us we no longer needed to give it to her... this was 6m ago. Fast foward to our last appt. Our regular doc orders a blood test just to check her enzyme levels... Yep back up. The gastro doc wonders why we ever stopped... WTH??

Also, I was reading other posts about CPT and vests... I ask everytime and get told that until there is an issue they don't see an need... Is this right? Also, she is getting no inhaled meds either. Is this normal. She is culturing Staph but at the "rare" level, down from 1+ at the last culture.

I just want to make sure that I am giving her the best care possible... so that WHEN there is a "cure" she is in the best healthy possible.

JosephinesMommy · Aug 7, 2009

So we have been very lucky to have a very "healthy" baby thus far. Yeah, she spent her first 17days in teh NICU after she had surgery on day four for her MI. 17 was a very short stay from what I have heard. BUT

Josephine had elevated liver enzymes at around 1m of age. She took Ursodiol (sp?) for a few months. Blood test showed lowered enzyme levels so the head CF doc told us we no longer needed to give it to her... this was 6m ago. Fast foward to our last appt. Our regular doc orders a blood test just to check her enzyme levels... Yep back up. The gastro doc wonders why we ever stopped... WTH??

Also, I was reading other posts about CPT and vests... I ask everytime and get told that until there is an issue they don't see an need... Is this right? Also, she is getting no inhaled meds either. Is this normal. She is culturing Staph but at the "rare" level, down from 1+ at the last culture.

I just want to make sure that I am giving her the best care possible... so that WHEN there is a "cure" she is in the best healthy possible.

JosephinesMommy · Aug 7, 2009

So we have been very lucky to have a very "healthy" baby thus far. Yeah, she spent her first 17days in teh NICU after she had surgery on day four for her MI. 17 was a very short stay from what I have heard. BUT

Josephine had elevated liver enzymes at around 1m of age. She took Ursodiol (sp?) for a few months. Blood test showed lowered enzyme levels so the head CF doc told us we no longer needed to give it to her... this was 6m ago. Fast foward to our last appt. Our regular doc orders a blood test just to check her enzyme levels... Yep back up. The gastro doc wonders why we ever stopped... WTH??

Also, I was reading other posts about CPT and vests... I ask everytime and get told that until there is an issue they don't see an need... Is this right? Also, she is getting no inhaled meds either. Is this normal. She is culturing Staph but at the "rare" level, down from 1+ at the last culture.

I just want to make sure that I am giving her the best care possible... so that WHEN there is a "cure" she is in the best healthy possible.

JosephinesMommy · Aug 7, 2009

So we have been very lucky to have a very "healthy" baby thus far. Yeah, she spent her first 17days in teh NICU after she had surgery on day four for her MI. 17 was a very short stay from what I have heard. BUT
 
 Josephine had elevated liver enzymes at around 1m of age. She took Ursodiol (sp?) for a few months. Blood test showed lowered enzyme levels so the head CF doc told us we no longer needed to give it to her... this was 6m ago. Fast foward to our last appt. Our regular doc orders a blood test just to check her enzyme levels... Yep back up. The gastro doc wonders why we ever stopped... WTH??
 
 Also, I was reading other posts about CPT and vests... I ask everytime and get told that until there is an issue they don't see an need... Is this right? Also, she is getting no inhaled meds either. Is this normal. She is culturing Staph but at the "rare" level, down from 1+ at the last culture.
 
 I just want to make sure that I am giving her the best care possible... so that WHEN there is a "cure" she is in the best healthy possible.

Mommafirst · Aug 7, 2009

The thing is that every CF center (and docs within each center) have a different philosophy and approach. I'm a big fan of a more aggressive approach, and it sounds like you want to see one as well.

I think that CPT should be started as early as possible, because even if there is nothing in there to move around, you are setting a habit that your daughter will have to have as part of her life forever. Its much easier for it to just be something she does -- like brushing her teeth -- than to introduce it when she is older and more likely to rebel against it. Waiting for lung involvement to set in puts her at risk of missing opportunities for being proactive ad preventing lung damage if you can.

The inhaled meds can probably wait a little while, though it would be good to have an albuterol inhaler with spacer for before you do airway clearance.

I'd also be very bothered that they are't following her liver issue closely and didn't do levels after they took her off ursodiol to make sure she didn't need to still be on it.

If you aren't happy with your care, I'd press the doctor a bit. If they aren't compatible with your approach, you should consider your other options.

Mommafirst · Aug 7, 2009

The thing is that every CF center (and docs within each center) have a different philosophy and approach. I'm a big fan of a more aggressive approach, and it sounds like you want to see one as well.

I think that CPT should be started as early as possible, because even if there is nothing in there to move around, you are setting a habit that your daughter will have to have as part of her life forever. Its much easier for it to just be something she does -- like brushing her teeth -- than to introduce it when she is older and more likely to rebel against it. Waiting for lung involvement to set in puts her at risk of missing opportunities for being proactive ad preventing lung damage if you can.

The inhaled meds can probably wait a little while, though it would be good to have an albuterol inhaler with spacer for before you do airway clearance.

I'd also be very bothered that they are't following her liver issue closely and didn't do levels after they took her off ursodiol to make sure she didn't need to still be on it.

If you aren't happy with your care, I'd press the doctor a bit. If they aren't compatible with your approach, you should consider your other options.

Mommafirst · Aug 7, 2009

The thing is that every CF center (and docs within each center) have a different philosophy and approach. I'm a big fan of a more aggressive approach, and it sounds like you want to see one as well.

I think that CPT should be started as early as possible, because even if there is nothing in there to move around, you are setting a habit that your daughter will have to have as part of her life forever. Its much easier for it to just be something she does -- like brushing her teeth -- than to introduce it when she is older and more likely to rebel against it. Waiting for lung involvement to set in puts her at risk of missing opportunities for being proactive ad preventing lung damage if you can.

The inhaled meds can probably wait a little while, though it would be good to have an albuterol inhaler with spacer for before you do airway clearance.

I'd also be very bothered that they are't following her liver issue closely and didn't do levels after they took her off ursodiol to make sure she didn't need to still be on it.

If you aren't happy with your care, I'd press the doctor a bit. If they aren't compatible with your approach, you should consider your other options.

Mommafirst · Aug 7, 2009

The thing is that every CF center (and docs within each center) have a different philosophy and approach. I'm a big fan of a more aggressive approach, and it sounds like you want to see one as well.

I think that CPT should be started as early as possible, because even if there is nothing in there to move around, you are setting a habit that your daughter will have to have as part of her life forever. Its much easier for it to just be something she does -- like brushing her teeth -- than to introduce it when she is older and more likely to rebel against it. Waiting for lung involvement to set in puts her at risk of missing opportunities for being proactive ad preventing lung damage if you can.

The inhaled meds can probably wait a little while, though it would be good to have an albuterol inhaler with spacer for before you do airway clearance.

I'd also be very bothered that they are't following her liver issue closely and didn't do levels after they took her off ursodiol to make sure she didn't need to still be on it.

If you aren't happy with your care, I'd press the doctor a bit. If they aren't compatible with your approach, you should consider your other options.

Mommafirst · Aug 7, 2009

The thing is that every CF center (and docs within each center) have a different philosophy and approach. I'm a big fan of a more aggressive approach, and it sounds like you want to see one as well.
 
 I think that CPT should be started as early as possible, because even if there is nothing in there to move around, you are setting a habit that your daughter will have to have as part of her life forever. Its much easier for it to just be something she does -- like brushing her teeth -- than to introduce it when she is older and more likely to rebel against it. Waiting for lung involvement to set in puts her at risk of missing opportunities for being proactive ad preventing lung damage if you can.
 
 The inhaled meds can probably wait a little while, though it would be good to have an albuterol inhaler with spacer for before you do airway clearance.
 
 I'd also be very bothered that they are't following her liver issue closely and didn't do levels after they took her off ursodiol to make sure she didn't need to still be on it.
 
 If you aren't happy with your care, I'd press the doctor a bit. If they aren't compatible with your approach, you should consider your other options.

saveferris2009 · Aug 7, 2009

This article should be EVERYONE's standard of care.

You must treat CF before symptoms arise. If you're treating when they arrive, you're behind the 8 ball.

Proactive = longer life. CF cure or not.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact
">http://www.newyorker.com/archi...4/12/06/041206fa_fact
</a>
This should be your CF guide no matter what clinic you go to.

saveferris2009 · Aug 7, 2009

This article should be EVERYONE's standard of care.

You must treat CF before symptoms arise. If you're treating when they arrive, you're behind the 8 ball.

Proactive = longer life. CF cure or not.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact
">http://www.newyorker.com/archi...4/12/06/041206fa_fact
</a>
This should be your CF guide no matter what clinic you go to.

saveferris2009 · Aug 7, 2009

This article should be EVERYONE's standard of care.

You must treat CF before symptoms arise. If you're treating when they arrive, you're behind the 8 ball.

Proactive = longer life. CF cure or not.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact
">http://www.newyorker.com/archi...4/12/06/041206fa_fact
</a>
This should be your CF guide no matter what clinic you go to.

saveferris2009 · Aug 7, 2009

This article should be EVERYONE's standard of care.

You must treat CF before symptoms arise. If you're treating when they arrive, you're behind the 8 ball.

Proactive = longer life. CF cure or not.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact
">http://www.newyorker.com/archi...4/12/06/041206fa_fact
</a>
This should be your CF guide no matter what clinic you go to.

saveferris2009 · Aug 7, 2009

This article should be EVERYONE's standard of care.
 
 You must treat CF before symptoms arise. If you're treating when they arrive, you're behind the 8 ball.
 
 Proactive = longer life. CF cure or not.
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact
">http://www.newyorker.com/archi...4/12/06/041206fa_fact
</a> 
 This should be your CF guide no matter what clinic you go to.

babyluke · Aug 7, 2009

I agree with Heather about the CPT and/or vest. We did CPT from the time Luke was diagnosed and we pushed for the vest ASAP because we just wanted it to be normal for him that he does his vest. We did not really want him to remember a time that the vest was not a part of his daily routine. I have heard that at this young age it is more of establishing a routine or habit because they are too small to be able to do the coughing and huffing that really helps to clear the airway, so maybe that is why they are not recommending it yet. Luke has also done inhaled meds. since his diagnosis--albuteral, pulmizyme and pulmicort. He does them everyday regardless of symptoms. We increase if he is sick. I have heard others say that they are not on nebs. yet and I really don't know the thinking behind that. I know personally, I like to feel like we are doing everything to prevent rather than trying to treat after problems arise. I would ask them why and keep asking why until you are satisfied that the answer they are giving has considered your daughter individually and not just what they do as normal practice. I know others on this site have followed a similiar treatment protocul, so I don't want to say that your dr./clinic is wrong. But you need to be comfortable with the treatment plan.
I also wanted to mention that if you do not get any good info. about CPT from your clinic, you could try to find a physical therapist on your own. We have a PT for Luke through the early intervention program in our state and she has been wonderful. Luke was not big enough for the vest until he was about 16 months old and I am really glad we know how to do CPT because when he is really congested we do it manually as well as use the vest.
Angela, Mom to 7, including Luke, 2yr. old with CF

babyluke · Aug 7, 2009

I agree with Heather about the CPT and/or vest. We did CPT from the time Luke was diagnosed and we pushed for the vest ASAP because we just wanted it to be normal for him that he does his vest. We did not really want him to remember a time that the vest was not a part of his daily routine. I have heard that at this young age it is more of establishing a routine or habit because they are too small to be able to do the coughing and huffing that really helps to clear the airway, so maybe that is why they are not recommending it yet. Luke has also done inhaled meds. since his diagnosis--albuteral, pulmizyme and pulmicort. He does them everyday regardless of symptoms. We increase if he is sick. I have heard others say that they are not on nebs. yet and I really don't know the thinking behind that. I know personally, I like to feel like we are doing everything to prevent rather than trying to treat after problems arise. I would ask them why and keep asking why until you are satisfied that the answer they are giving has considered your daughter individually and not just what they do as normal practice. I know others on this site have followed a similiar treatment protocul, so I don't want to say that your dr./clinic is wrong. But you need to be comfortable with the treatment plan.
I also wanted to mention that if you do not get any good info. about CPT from your clinic, you could try to find a physical therapist on your own. We have a PT for Luke through the early intervention program in our state and she has been wonderful. Luke was not big enough for the vest until he was about 16 months old and I am really glad we know how to do CPT because when he is really congested we do it manually as well as use the vest.
Angela, Mom to 7, including Luke, 2yr. old with CF

babyluke · Aug 7, 2009

I agree with Heather about the CPT and/or vest. We did CPT from the time Luke was diagnosed and we pushed for the vest ASAP because we just wanted it to be normal for him that he does his vest. We did not really want him to remember a time that the vest was not a part of his daily routine. I have heard that at this young age it is more of establishing a routine or habit because they are too small to be able to do the coughing and huffing that really helps to clear the airway, so maybe that is why they are not recommending it yet. Luke has also done inhaled meds. since his diagnosis--albuteral, pulmizyme and pulmicort. He does them everyday regardless of symptoms. We increase if he is sick. I have heard others say that they are not on nebs. yet and I really don't know the thinking behind that. I know personally, I like to feel like we are doing everything to prevent rather than trying to treat after problems arise. I would ask them why and keep asking why until you are satisfied that the answer they are giving has considered your daughter individually and not just what they do as normal practice. I know others on this site have followed a similiar treatment protocul, so I don't want to say that your dr./clinic is wrong. But you need to be comfortable with the treatment plan.
I also wanted to mention that if you do not get any good info. about CPT from your clinic, you could try to find a physical therapist on your own. We have a PT for Luke through the early intervention program in our state and she has been wonderful. Luke was not big enough for the vest until he was about 16 months old and I am really glad we know how to do CPT because when he is really congested we do it manually as well as use the vest.
Angela, Mom to 7, including Luke, 2yr. old with CF

babyluke · Aug 7, 2009

I agree with Heather about the CPT and/or vest. We did CPT from the time Luke was diagnosed and we pushed for the vest ASAP because we just wanted it to be normal for him that he does his vest. We did not really want him to remember a time that the vest was not a part of his daily routine. I have heard that at this young age it is more of establishing a routine or habit because they are too small to be able to do the coughing and huffing that really helps to clear the airway, so maybe that is why they are not recommending it yet. Luke has also done inhaled meds. since his diagnosis--albuteral, pulmizyme and pulmicort. He does them everyday regardless of symptoms. We increase if he is sick. I have heard others say that they are not on nebs. yet and I really don't know the thinking behind that. I know personally, I like to feel like we are doing everything to prevent rather than trying to treat after problems arise. I would ask them why and keep asking why until you are satisfied that the answer they are giving has considered your daughter individually and not just what they do as normal practice. I know others on this site have followed a similiar treatment protocul, so I don't want to say that your dr./clinic is wrong. But you need to be comfortable with the treatment plan.
I also wanted to mention that if you do not get any good info. about CPT from your clinic, you could try to find a physical therapist on your own. We have a PT for Luke through the early intervention program in our state and she has been wonderful. Luke was not big enough for the vest until he was about 16 months old and I am really glad we know how to do CPT because when he is really congested we do it manually as well as use the vest.
Angela, Mom to 7, including Luke, 2yr. old with CF

babyluke · Aug 7, 2009

I agree with Heather about the CPT and/or vest. We did CPT from the time Luke was diagnosed and we pushed for the vest ASAP because we just wanted it to be normal for him that he does his vest. We did not really want him to remember a time that the vest was not a part of his daily routine. I have heard that at this young age it is more of establishing a routine or habit because they are too small to be able to do the coughing and huffing that really helps to clear the airway, so maybe that is why they are not recommending it yet. Luke has also done inhaled meds. since his diagnosis--albuteral, pulmizyme and pulmicort. He does them everyday regardless of symptoms. We increase if he is sick. I have heard others say that they are not on nebs. yet and I really don't know the thinking behind that. I know personally, I like to feel like we are doing everything to prevent rather than trying to treat after problems arise. I would ask them why and keep asking why until you are satisfied that the answer they are giving has considered your daughter individually and not just what they do as normal practice. I know others on this site have followed a similiar treatment protocul, so I don't want to say that your dr./clinic is wrong. But you need to be comfortable with the treatment plan.
 I also wanted to mention that if you do not get any good info. about CPT from your clinic, you could try to find a physical therapist on your own. We have a PT for Luke through the early intervention program in our state and she has been wonderful. Luke was not big enough for the vest until he was about 16 months old and I am really glad we know how to do CPT because when he is really congested we do it manually as well as use the vest.
 Angela, Mom to 7, including Luke, 2yr. old with CF

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