So frustrated with Dr. and wondering what the rest of you do...

[Mommy2Zeke]

So... our first appt. with the other local cf doc is next Tuesday, but I've had my fill of dealing with my son's current doc.

From day one this doc has insisted on being Zeke's only doctor- functioning as pulmonologist/nutritionist/gastroenterologist/pediatrician. I am now seeing how stupid it is to have gone along with that. His office is a nightmare to deal with, getting an appointment is a several day ordeal sometimes, they lose test results, they are inconsiderate, and the other doc in the practice is a regular pediatrician who tries to treat CF but doesn't know how. Zeke's doctor is frequently out of town and leaves things to this other pediatrician to cover, which has led to many mistakes in my son's care.... which in turn has led me to consider other options and switch my son's care to the other local CF doc.

To catch up to present, Zeke has had a bad stomach bug for over a week now. His doctor (who is in town for once) gave me his personal cell phone # and told me to call him directly throughout the weekend, checking in every day. He also promised that he would not leave me hanging and not return a call like the rest of his staff does frequently.

Well, he answered Friday and Saturday, but didn't Sunday. I left a message and decided to see how long it would take him to return my call. Surprise Surprise... he still hadn't called at all as of yesterday- Wednesday, and Zeke was getting worse, so we took him in to the local children's hospital (which his current doc doesn't practice at). Boom. This morning he calls. Twice.

I'm not picking up my phone. This is ridiculous to have dealt with all of this from his office up until now. I'm figuring somehow the word got to him that Zeke is in the hospital, but I am so done. I do not want to get stuck in the opinion of one person again... I think it's dangerous in that having only one perspective can make you miss something that someone else might see.

The residents here are doing a good job and seem to be on top of things and have worked with Zeke's docs up in Nebraska before, so I really think things are covered.

So what do you all do? Do most of you see a team of people? Do you have a separate pediatrician?

 

[Mommy2Zeke]

So... our first appt. with the other local cf doc is next Tuesday, but I've had my fill of dealing with my son's current doc.

From day one this doc has insisted on being Zeke's only doctor- functioning as pulmonologist/nutritionist/gastroenterologist/pediatrician. I am now seeing how stupid it is to have gone along with that. His office is a nightmare to deal with, getting an appointment is a several day ordeal sometimes, they lose test results, they are inconsiderate, and the other doc in the practice is a regular pediatrician who tries to treat CF but doesn't know how. Zeke's doctor is frequently out of town and leaves things to this other pediatrician to cover, which has led to many mistakes in my son's care.... which in turn has led me to consider other options and switch my son's care to the other local CF doc.

To catch up to present, Zeke has had a bad stomach bug for over a week now. His doctor (who is in town for once) gave me his personal cell phone # and told me to call him directly throughout the weekend, checking in every day. He also promised that he would not leave me hanging and not return a call like the rest of his staff does frequently.

Well, he answered Friday and Saturday, but didn't Sunday. I left a message and decided to see how long it would take him to return my call. Surprise Surprise... he still hadn't called at all as of yesterday- Wednesday, and Zeke was getting worse, so we took him in to the local children's hospital (which his current doc doesn't practice at). Boom. This morning he calls. Twice.

I'm not picking up my phone. This is ridiculous to have dealt with all of this from his office up until now. I'm figuring somehow the word got to him that Zeke is in the hospital, but I am so done. I do not want to get stuck in the opinion of one person again... I think it's dangerous in that having only one perspective can make you miss something that someone else might see.

The residents here are doing a good job and seem to be on top of things and have worked with Zeke's docs up in Nebraska before, so I really think things are covered.

So what do you all do? Do most of you see a team of people? Do you have a separate pediatrician?

 

[Mommy2Zeke]

So... our first appt. with the other local cf doc is next Tuesday, but I've had my fill of dealing with my son's current doc.
<br />
<br />From day one this doc has insisted on being Zeke's only doctor- functioning as pulmonologist/nutritionist/gastroenterologist/pediatrician. I am now seeing how stupid it is to have gone along with that. His office is a nightmare to deal with, getting an appointment is a several day ordeal sometimes, they lose test results, they are inconsiderate, and the other doc in the practice is a regular pediatrician who tries to treat CF but doesn't know how. Zeke's doctor is frequently out of town and leaves things to this other pediatrician to cover, which has led to many mistakes in my son's care.... which in turn has led me to consider other options and switch my son's care to the other local CF doc.
<br />
<br />To catch up to present, Zeke has had a bad stomach bug for over a week now. His doctor (who is in town for once) gave me his personal cell phone # and told me to call him directly throughout the weekend, checking in every day. He also promised that he would not leave me hanging and not return a call like the rest of his staff does frequently.
<br />
<br />Well, he answered Friday and Saturday, but didn't Sunday. I left a message and decided to see how long it would take him to return my call. Surprise Surprise... he still hadn't called at all as of yesterday- Wednesday, and Zeke was getting worse, so we took him in to the local children's hospital (which his current doc doesn't practice at). Boom. This morning he calls. Twice.
<br />
<br />I'm not picking up my phone. This is ridiculous to have dealt with all of this from his office up until now. I'm figuring somehow the word got to him that Zeke is in the hospital, but I am so done. I do not want to get stuck in the opinion of one person again... I think it's dangerous in that having only one perspective can make you miss something that someone else might see.
<br />
<br />The residents here are doing a good job and seem to be on top of things and have worked with Zeke's docs up in Nebraska before, so I really think things are covered.
<br />
<br />So what do you all do? Do most of you see a team of people? Do you have a separate pediatrician?

 

[taylorsmommy]

I think it is absolutely necessary to have a CF Team involved in your child's care. CF is a complex disease, and every professional involved in the CF team is trained in their field to treat each aspect of your child's disease (nutrition, social work, GI, etc.) I think it would be worth taking your son to a CF center where his health is managed by people who know what they are doing and care.

 

[taylorsmommy]

I think it is absolutely necessary to have a CF Team involved in your child's care. CF is a complex disease, and every professional involved in the CF team is trained in their field to treat each aspect of your child's disease (nutrition, social work, GI, etc.) I think it would be worth taking your son to a CF center where his health is managed by people who know what they are doing and care.

 

[taylorsmommy]

I think it is absolutely necessary to have a CF Team involved in your child's care. CF is a complex disease, and every professional involved in the CF team is trained in their field to treat each aspect of your child's disease (nutrition, social work, GI, etc.) I think it would be worth taking your son to a CF center where his health is managed by people who know what they are doing and care.

 

[kalebsmommy]

Hi Jen <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm sorry to hear Zeke is in the hospital and not feeling well. I hope y'all are home soon and that Zeke is feeling much better quickly! He is in my prayers.

Kaleb has a care team at our cf clinic. He has a seperate person for his nutritionist, pulmonologist, cf nurse, gastro. They all come in to visit and talk to us, answer questions one at a time. We have a pediatrician here at home we see also.

It sounds like a terrible time your having with this doctor. I'm sure you have enough to handle than having to deal with a doctor that isn't caring for your lil one the way he needs. I hope the new cf doctor your going to see can be alot more supportive, encouraging and treat your son with the high degree of care you expect! Your such a good mommy and sounds like you are doing everything you can for your son! Thinking of you and sending up some prayers for you <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kalebsmommy]

Hi Jen <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm sorry to hear Zeke is in the hospital and not feeling well. I hope y'all are home soon and that Zeke is feeling much better quickly! He is in my prayers.

Kaleb has a care team at our cf clinic. He has a seperate person for his nutritionist, pulmonologist, cf nurse, gastro. They all come in to visit and talk to us, answer questions one at a time. We have a pediatrician here at home we see also.

It sounds like a terrible time your having with this doctor. I'm sure you have enough to handle than having to deal with a doctor that isn't caring for your lil one the way he needs. I hope the new cf doctor your going to see can be alot more supportive, encouraging and treat your son with the high degree of care you expect! Your such a good mommy and sounds like you are doing everything you can for your son! Thinking of you and sending up some prayers for you <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kalebsmommy]

Hi Jen <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm sorry to hear Zeke is in the hospital and not feeling well. I hope y'all are home soon and that Zeke is feeling much better quickly! He is in my prayers.
<br />
<br />Kaleb has a care team at our cf clinic. He has a seperate person for his nutritionist, pulmonologist, cf nurse, gastro. They all come in to visit and talk to us, answer questions one at a time. We have a pediatrician here at home we see also.
<br />
<br />It sounds like a terrible time your having with this doctor. I'm sure you have enough to handle than having to deal with a doctor that isn't caring for your lil one the way he needs. I hope the new cf doctor your going to see can be alot more supportive, encouraging and treat your son with the high degree of care you expect! Your such a good mommy and sounds like you are doing everything you can for your son! Thinking of you and sending up some prayers for you <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tacos99]

Hi Jen, I had problems with my daughters doc as well. Not the same as yours (ours didn't like questions and Shelby's lung function was dropping). Luckily for me the staff (from check in to nurse practitioner) are great. Because it was only him I was able to change to another doc in the same CF clinic and we are much happier and Shelby is showing a lot of improvement as far as lung function.

I can't understand why he is trying to be ped, GI, and nutritionist. I agree you need a CF team and you would probably be better served at a different center. At each visit we see nutritionist, pharmacist, and doc. Her GI is in another location as is her ped. Good luck and take care.

 

[tacos99]

Hi Jen, I had problems with my daughters doc as well. Not the same as yours (ours didn't like questions and Shelby's lung function was dropping). Luckily for me the staff (from check in to nurse practitioner) are great. Because it was only him I was able to change to another doc in the same CF clinic and we are much happier and Shelby is showing a lot of improvement as far as lung function.

I can't understand why he is trying to be ped, GI, and nutritionist. I agree you need a CF team and you would probably be better served at a different center. At each visit we see nutritionist, pharmacist, and doc. Her GI is in another location as is her ped. Good luck and take care.

 

[tacos99]

Hi Jen, I had problems with my daughters doc as well. Not the same as yours (ours didn't like questions and Shelby's lung function was dropping). Luckily for me the staff (from check in to nurse practitioner) are great. Because it was only him I was able to change to another doc in the same CF clinic and we are much happier and Shelby is showing a lot of improvement as far as lung function.
<br />
<br />I can't understand why he is trying to be ped, GI, and nutritionist. I agree you need a CF team and you would probably be better served at a different center. At each visit we see nutritionist, pharmacist, and doc. Her GI is in another location as is her ped. Good luck and take care.

 

[NancyLKF]

Hi, Jen. We take Maggie to a regular pediatrican and the cf clinic. Our cf doctor is great. He returns phone calls within 15-20 minutes and we have never had a problem talking to him no matter the day or time of day. The new nurse is still getting her feet wet and needs some practice to be as good as the nurse who just retired. We do see a doctor at clinic on occassion who is just a pediatrican (no CF specialty) and she drives me crazy. She always talks over me and I've never been comfortable with her answers to my questions so I just ask the CF doctor later. We also see a nutritionist (just started since Maggie is so young), a social worker, a medical assistant, child life specialist and respiratory therapist.
It sounds like your (former?) clinic is not so great. Have you checked their scores on cff.org? Scores aren't everything 'cause they don't take patient responsibility into consideration but they are still worth looking into. And yes, I would take Zeke to a regular pediatrican. Our pediatrican is in constant communication with the CF center and if there is something she thinks might be CF related and out of her area of expertise she doesn't hesitiate to have me call our CF doctor instead.
Hope your new clinic is better!

 

[NancyLKF]

Hi, Jen. We take Maggie to a regular pediatrican and the cf clinic. Our cf doctor is great. He returns phone calls within 15-20 minutes and we have never had a problem talking to him no matter the day or time of day. The new nurse is still getting her feet wet and needs some practice to be as good as the nurse who just retired. We do see a doctor at clinic on occassion who is just a pediatrican (no CF specialty) and she drives me crazy. She always talks over me and I've never been comfortable with her answers to my questions so I just ask the CF doctor later. We also see a nutritionist (just started since Maggie is so young), a social worker, a medical assistant, child life specialist and respiratory therapist.
It sounds like your (former?) clinic is not so great. Have you checked their scores on cff.org? Scores aren't everything 'cause they don't take patient responsibility into consideration but they are still worth looking into. And yes, I would take Zeke to a regular pediatrican. Our pediatrican is in constant communication with the CF center and if there is something she thinks might be CF related and out of her area of expertise she doesn't hesitiate to have me call our CF doctor instead.
Hope your new clinic is better!

 

[NancyLKF]

Hi, Jen. We take Maggie to a regular pediatrican and the cf clinic. Our cf doctor is great. He returns phone calls within 15-20 minutes and we have never had a problem talking to him no matter the day or time of day. The new nurse is still getting her feet wet and needs some practice to be as good as the nurse who just retired. We do see a doctor at clinic on occassion who is just a pediatrican (no CF specialty) and she drives me crazy. She always talks over me and I've never been comfortable with her answers to my questions so I just ask the CF doctor later. We also see a nutritionist (just started since Maggie is so young), a social worker, a medical assistant, child life specialist and respiratory therapist.
<br />It sounds like your (former?) clinic is not so great. Have you checked their scores on cff.org? Scores aren't everything 'cause they don't take patient responsibility into consideration but they are still worth looking into. And yes, I would take Zeke to a regular pediatrican. Our pediatrican is in constant communication with the CF center and if there is something she thinks might be CF related and out of her area of expertise she doesn't hesitiate to have me call our CF doctor instead.
<br />Hope your new clinic is better!

 

[Ratatosk]

Our problems were the opposite -- Local CF team we had similar issues -- no call backs, referred to urgent care who unless it was to diagnose an ear infection, weren't much help.

So we see a pediatric specialist in the City. If I call them, a nurse usually gets back to me by the end of the day, even to just say they're checking on things and will get back to us with an answer so as to not leave us hanging.

With DS' digestive issues and complexities, as experienced last summer with his bowel obstruction, he NEEDS to be monitored by someone with experience and in his case he needed an experienced surgeon. Things can just happen WAY too fast and we want to make sure DS has the best care possible.

Last summer we thought DS had a stomach bug. Started vomiting overnight, was still stooling, had a little fever. Almost identical symptoms to when he was 18 months old and had the stomach 'flu'. Took him to the local ER when he started complaining of pain and had stopped stooling 36 hours later and they wanted to admit him to monitor him. Due to his issues as an infant, we called his doctor in the city AFTER 9:30 p.m. on a Sunday who called us back and said he'd like to see us down there. So off we went. I shudder to think what could've happened if we'd stayed because 3 weeks later, after keeping us on our toes constantly at the hospital in the city we FINALLY came home.

Sorry this is so long, but we've found that it's too stressful and it's a waste of time and money dealing with our previous care team.

 

[Ratatosk]

Our problems were the opposite -- Local CF team we had similar issues -- no call backs, referred to urgent care who unless it was to diagnose an ear infection, weren't much help.

So we see a pediatric specialist in the City. If I call them, a nurse usually gets back to me by the end of the day, even to just say they're checking on things and will get back to us with an answer so as to not leave us hanging.

With DS' digestive issues and complexities, as experienced last summer with his bowel obstruction, he NEEDS to be monitored by someone with experience and in his case he needed an experienced surgeon. Things can just happen WAY too fast and we want to make sure DS has the best care possible.

Last summer we thought DS had a stomach bug. Started vomiting overnight, was still stooling, had a little fever. Almost identical symptoms to when he was 18 months old and had the stomach 'flu'. Took him to the local ER when he started complaining of pain and had stopped stooling 36 hours later and they wanted to admit him to monitor him. Due to his issues as an infant, we called his doctor in the city AFTER 9:30 p.m. on a Sunday who called us back and said he'd like to see us down there. So off we went. I shudder to think what could've happened if we'd stayed because 3 weeks later, after keeping us on our toes constantly at the hospital in the city we FINALLY came home.

Sorry this is so long, but we've found that it's too stressful and it's a waste of time and money dealing with our previous care team.

 

[Ratatosk]

Our problems were the opposite -- Local CF team we had similar issues -- no call backs, referred to urgent care who unless it was to diagnose an ear infection, weren't much help.
<br />
<br />So we see a pediatric specialist in the City. If I call them, a nurse usually gets back to me by the end of the day, even to just say they're checking on things and will get back to us with an answer so as to not leave us hanging.
<br />
<br />With DS' digestive issues and complexities, as experienced last summer with his bowel obstruction, he NEEDS to be monitored by someone with experience and in his case he needed an experienced surgeon. Things can just happen WAY too fast and we want to make sure DS has the best care possible.
<br />
<br />Last summer we thought DS had a stomach bug. Started vomiting overnight, was still stooling, had a little fever. Almost identical symptoms to when he was 18 months old and had the stomach 'flu'. Took him to the local ER when he started complaining of pain and had stopped stooling 36 hours later and they wanted to admit him to monitor him. Due to his issues as an infant, we called his doctor in the city AFTER 9:30 p.m. on a Sunday who called us back and said he'd like to see us down there. So off we went. I shudder to think what could've happened if we'd stayed because 3 weeks later, after keeping us on our toes constantly at the hospital in the city we FINALLY came home.
<br />
<br />Sorry this is so long, but we've found that it's too stressful and it's a waste of time and money dealing with our previous care team.

 

[jbrandonAW]

I think you have made the right decision! I see a team, but e prefer one dr over another. I will see the local base doctor for non-major things and they are pretty good about saying whether or not to go to the CF doctor.

 

[jbrandonAW]

I think you have made the right decision! I see a team, but e prefer one dr over another. I will see the local base doctor for non-major things and they are pretty good about saying whether or not to go to the CF doctor.