You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Dr. Warwick in Minnesota
- Thread starter DEES4
- Start date
Thanks for this post on Dr. Warwick. We're about 3.5 hours and have toyed around with switching from our clinic (1.5 hours away from where we live).
Would those of those of you that have gotten the consult explain how you did it? Did you just call yourself for the appointment? Did you ask your existing CF Clinic to make the appointment? If not, how did you handle the differences in opinion? How long did you have to wait for the appointment?
As you can see.. I'm interested in the logistics! Thanks in advance.
Stacy
Would those of those of you that have gotten the consult explain how you did it? Did you just call yourself for the appointment? Did you ask your existing CF Clinic to make the appointment? If not, how did you handle the differences in opinion? How long did you have to wait for the appointment?
As you can see.. I'm interested in the logistics! Thanks in advance.
Stacy
S
sdelorenzo
Guest
I took my two kids to see Dr. Warwick last year after I read the New Yorker article. I think the main reason why I took them there is because I do not feel like my children's doctor puts much effort into seeing how we can work together to keep my children healthy. All they ever get is a pat on the head at their clinic visits.
Dr. Warwick is amazing in that he puts in the effort that you would want your doctor to in a perfect world. Anyway, my daughter who is now 5 is on both pulmozyme and mucomyst. Dr. Warwick said don't stop pulmozyme if it works for you. I noticed a difference right away with my daughter when I started pulmozyme at one year of age. The mucomyst has been wonderful. Prior to me starting mucomyst, my daugther would wake up coughing each night. This went on for a few weeks. Finally, it occured to me that I needed to get her new prescription of mucomyst filled. The first night I tried it her cough stopped. She has been on mucomyst for a year now. If I don't give her mucomyst with her nightly vest treatment she wakes up coughing. We haven't been back to see Dr. Warwick. I am interested to see what he has to say about that. We are taking the kids back to see him in November.
Sharon, mom of Sophia, 5 and Jack, 2 both with cf
Dr. Warwick is amazing in that he puts in the effort that you would want your doctor to in a perfect world. Anyway, my daughter who is now 5 is on both pulmozyme and mucomyst. Dr. Warwick said don't stop pulmozyme if it works for you. I noticed a difference right away with my daughter when I started pulmozyme at one year of age. The mucomyst has been wonderful. Prior to me starting mucomyst, my daugther would wake up coughing each night. This went on for a few weeks. Finally, it occured to me that I needed to get her new prescription of mucomyst filled. The first night I tried it her cough stopped. She has been on mucomyst for a year now. If I don't give her mucomyst with her nightly vest treatment she wakes up coughing. We haven't been back to see Dr. Warwick. I am interested to see what he has to say about that. We are taking the kids back to see him in November.
Sharon, mom of Sophia, 5 and Jack, 2 both with cf
S
sdelorenzo
Guest
Stacy -
It wasn't hard to get an appointment, I just called the clinic. I schedule it for about 6 weeks after I called them. I didn't even ask for an earlier appointment because we were traveling so far. My kids clinic here in Texas was not thrilled that I took the kids to the Minneapolis clinic. I didn't tell them until we got back. I think they felt that I was second guessing them. Wish I didn't have to. Since we already had a regular clinic, Dr. Warwick only gave suggestions, not prescriptions. So I had to ask my children's doctor for a prescription for mucomyst.
I forgot to mention one more thing about mucomyst in my last post. My daughter just turned four when she started mucomyst. Every night she complains for about the first 5 seconds about how bad it smells. Then she forgets about it. I know my almost three-year-old would throw it down immediately. He only does pulmozyme and has a hard time with that. That is why I haven't started him on mucomyst. But my daughter has always been more compliant when it comes to nebs.
Sharon, mom to Sophia, 5 and Jack, 2 both with cf
It wasn't hard to get an appointment, I just called the clinic. I schedule it for about 6 weeks after I called them. I didn't even ask for an earlier appointment because we were traveling so far. My kids clinic here in Texas was not thrilled that I took the kids to the Minneapolis clinic. I didn't tell them until we got back. I think they felt that I was second guessing them. Wish I didn't have to. Since we already had a regular clinic, Dr. Warwick only gave suggestions, not prescriptions. So I had to ask my children's doctor for a prescription for mucomyst.
I forgot to mention one more thing about mucomyst in my last post. My daughter just turned four when she started mucomyst. Every night she complains for about the first 5 seconds about how bad it smells. Then she forgets about it. I know my almost three-year-old would throw it down immediately. He only does pulmozyme and has a hard time with that. That is why I haven't started him on mucomyst. But my daughter has always been more compliant when it comes to nebs.
Sharon, mom to Sophia, 5 and Jack, 2 both with cf
Thanks Sharon. I think that I'll call tomorrow. I wondered how your home docs would respond... I figured that they could feel a little defensive.
But when I have unpleasant interaactions with docs, I have to remind myself... "they are MY kids... and it's MY resonsibility to do anything I can for them... even if it makes me or another adult uncomfortable now and then." Ever use a little pep talk like that to STANDUP for the kids?
I think new CF parents need self-assertiveness lessons... that's a hard one!
Thanks Sharon - you helped give me an assertiveness-booster!
Stacy
But when I have unpleasant interaactions with docs, I have to remind myself... "they are MY kids... and it's MY resonsibility to do anything I can for them... even if it makes me or another adult uncomfortable now and then." Ever use a little pep talk like that to STANDUP for the kids?
I think new CF parents need self-assertiveness lessons... that's a hard one!
Thanks Sharon - you helped give me an assertiveness-booster!
Stacy
S
sdelorenzo
Guest
Stacy-
Yes! You are right. It is sooo important for us parents to stand up for our kids. I realized that when my daughter was around 8 months old. She was diagnosed with cf shortly after birth, but had a really bad milk allergy that went undiagnosed.
All of her doctors told me no I was wrong, it was cf, not a milk allergy. The vomiting continued and a feeding tube went in. Finally, months down the road a test showed it was a milk allergy. I thought doctors had the answers -wrong. I learned that I was to play a large role in my child's (now childrens) medical decisions and to make my voice heard for my children. I changed doctors at our clinic until I found one that would listen to me. Wish he gave me more info about cf and new treatments though.
Not sure if anyone has posted the link to the New Yorker article about the Minneapolis clinic.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/fact/content/?041206fa_fact
">http://www.newyorker.com/fact/content/?041206fa_fact
</a>Sharon, mom of Sophia, 5 and Jack, 2 both with cf
Yes! You are right. It is sooo important for us parents to stand up for our kids. I realized that when my daughter was around 8 months old. She was diagnosed with cf shortly after birth, but had a really bad milk allergy that went undiagnosed.
All of her doctors told me no I was wrong, it was cf, not a milk allergy. The vomiting continued and a feeding tube went in. Finally, months down the road a test showed it was a milk allergy. I thought doctors had the answers -wrong. I learned that I was to play a large role in my child's (now childrens) medical decisions and to make my voice heard for my children. I changed doctors at our clinic until I found one that would listen to me. Wish he gave me more info about cf and new treatments though.
Not sure if anyone has posted the link to the New Yorker article about the Minneapolis clinic.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/fact/content/?041206fa_fact
">http://www.newyorker.com/fact/content/?041206fa_fact
</a>Sharon, mom of Sophia, 5 and Jack, 2 both with cf
Dr Mathews is the doctor that started our Cleveland CF clinic at Rainbows where Ben is seen. It is named after him. I believe the Docs try very hard to live up to his standards at our clinic and they still speak of him. Dr. Konstan is also very well respected and I believe is the head of the clinic. I know people move here to be seen and treated.
We go to a local CF Clinic (nonaccredited) and a doctor in the City who is affiliated with the accredited CF Clinic there. We originally started going to the local clinic when DS was 3 months old to establish a rapport with local doctors should DS need to be hospitalized and also to help us get vaccinations, treatment in an timely manner. Not exactly how things worked out. Last year, couldn't get a flu shot for DS even though we were assured he was at the top of the list 'cuz of his CF -- fortunately his CF doctor in the City had one available for him. Recently when I took DS to his well child appointment, I mentioned the difficulties we've had getting DS in for his annual flu shots and were told that it must have been a miscommunication because they had TONS of flu vaccine available. I don't know HOW many times I called the clinic explaining DS had CF and wondering when he could get vaccinated and getting told we were outta luck.
Seems like our local CF appointments are spent getting chastised for seeing another doctor elsewhere and complaining about the meds the other doctor has him on -- we apparently don't "tow the party line". We're already labeled as difficult because we refuse to sit in the community waiting room and I refused to switch rooms with another patient who had a very productive cough. They weren't going to disinfect the room, just have us trade. Ewww!
Each time we're due to go to a local CF clinic appointment we vow it'll be our last one. I'm getting really edgy 'cuz at some point they're going to start doing PFTs and the way they operate the clinic (lack of germ control), I'm not so sure we want DS exposed to that department.
Seems like our local CF appointments are spent getting chastised for seeing another doctor elsewhere and complaining about the meds the other doctor has him on -- we apparently don't "tow the party line". We're already labeled as difficult because we refuse to sit in the community waiting room and I refused to switch rooms with another patient who had a very productive cough. They weren't going to disinfect the room, just have us trade. Ewww!
Each time we're due to go to a local CF clinic appointment we vow it'll be our last one. I'm getting really edgy 'cuz at some point they're going to start doing PFTs and the way they operate the clinic (lack of germ control), I'm not so sure we want DS exposed to that department.
Liza, I don't blame you for being "difficult"! We are trying to keep our kids healthy and their germ protocol is very important. Ours has separate days for young pts and is now separating PA pts from non-PA to try and limit exposure as much as possible (rooms for non-PA). I am definately doing the waiting room thing this season! I could give 2 shits if this is seen as difficult. We do not go to clinic and to the doctors to have them like us, we go because it is best for our kids and we want to stay on top of their progress. If we want to get a second opinion then we will get one...if they are on their game this shouldn't rattle them at all. IF it does get another more secure doctor. We don't have to feed their egos, most are big enough on their own ;-) In the end they respect you for doing these things and quite frankly they deal with CF alot but they don't know what it feels like to be in our shoes.
I figure we as parents need to do whatever we have to, to keep our kids healthy and am getting over the fear of offending someone. As my husband reminds me, we are paying for a service -- we are customers. At the CF walk this past spring there were a couple of moms with children who were diagnosed because of newborn screening and none of them were told about CPT -- one went to the RT department and demanded they teach her. They asked a CFer from Minneapolis if they should go elsewhere and were basically told they need to be more proactive with their children's care.
On the one hand we've tried to develop a rapport with the local cf doctors, but trying to get ahold of them or get an appointment when something comes up, or get past the appointment desk to get a flu shot, is near impossible. So we either take our chances with urgent care or call the doctor in the City. Times like that -- the 3 1/2 hour drive to the City doesn't seem all that bad.
Prior to our last local clinic appointment, I thought it was only ONE doctor on the team who had issues with our seeing someone else. Then I got into a "discussion" about a liver function test that our CF doctor in the City recommended, knowing DS was to have bloodwork done at the local clinic. Instead of getting the test, I got a lecture on how confusing it was for us to be going elsewhere.
I believe the U of MN holds a family education conference the beginning of November. Maybe you could attend it and get some more info on their program.
On the one hand we've tried to develop a rapport with the local cf doctors, but trying to get ahold of them or get an appointment when something comes up, or get past the appointment desk to get a flu shot, is near impossible. So we either take our chances with urgent care or call the doctor in the City. Times like that -- the 3 1/2 hour drive to the City doesn't seem all that bad.
Prior to our last local clinic appointment, I thought it was only ONE doctor on the team who had issues with our seeing someone else. Then I got into a "discussion" about a liver function test that our CF doctor in the City recommended, knowing DS was to have bloodwork done at the local clinic. Instead of getting the test, I got a lecture on how confusing it was for us to be going elsewhere.
I believe the U of MN holds a family education conference the beginning of November. Maybe you could attend it and get some more info on their program.
S
sdelorenzo
Guest
Mandy-
My children go to Texas Children's in Houston. I also have a lot of concerns with cross-contamination as well. Their doctors are not too concerned with it. They recently made the first step to address some of the concerns. But it was very minor. Now kids with B. Cepacia go through another door instead of the main door into the clinic. They still use the same rooms inside though as all of the other kids. Doesn't make a lot of sense to me. The clinic says they wipe down the rooms between patients. I have never thought that they did though. A big giveaway is the paper is messed up on the table. Seems they didn't have time to change it between patients, why would they have time to wipe it down?
Sharon
My children go to Texas Children's in Houston. I also have a lot of concerns with cross-contamination as well. Their doctors are not too concerned with it. They recently made the first step to address some of the concerns. But it was very minor. Now kids with B. Cepacia go through another door instead of the main door into the clinic. They still use the same rooms inside though as all of the other kids. Doesn't make a lot of sense to me. The clinic says they wipe down the rooms between patients. I have never thought that they did though. A big giveaway is the paper is messed up on the table. Seems they didn't have time to change it between patients, why would they have time to wipe it down?
Sharon
mom2brooke
New member
OMG Sharon we go to Texas Children's too! I have been really put out with my daughter's doctor for a while now. It seems like the quality of care they are giving is just crappy here lately. we have talked about switching to another clinic in Dallas or in Temple. I may have to check Dr. Warwick out though.
M
mneville
Guest
We also had a consult with Warwick recently- very informative but
now I am a little confused b/c our CF doc (who I love) does not
totally agree with everything. Our doc is not a fan of
Mucomyst but when Aidan gets a bit older and can maybe tolerate the
smell, I am going to insist on it.<br>
<br>
I was surprised that Warwick does not do much for contamination
control. He does not glove or gown. I am not sure how they separate
their patients but he just talks about hand washing , nothing more
than that.<br>
<br>
Sharon- Does Jack do Pulmozyne? Aidan, 23 months, does but I have
no idea if he benefits or not. Warwick said he might not need it
but our doc says to keep him on it. Confusing...<br>
<br>
Megan
now I am a little confused b/c our CF doc (who I love) does not
totally agree with everything. Our doc is not a fan of
Mucomyst but when Aidan gets a bit older and can maybe tolerate the
smell, I am going to insist on it.<br>
<br>
I was surprised that Warwick does not do much for contamination
control. He does not glove or gown. I am not sure how they separate
their patients but he just talks about hand washing , nothing more
than that.<br>
<br>
Sharon- Does Jack do Pulmozyne? Aidan, 23 months, does but I have
no idea if he benefits or not. Warwick said he might not need it
but our doc says to keep him on it. Confusing...<br>
<br>
Megan
S
sdelorenzo
Guest
Brooke -
Hello. Funny, I have spoken to a number of parents here in Houston and everybody seems to really like their doctor. I have not been that impressed though. Do you ever get anything more than just a pat on the head? Their doctor is a nice man, agreeable with any changes I want to make, but not much input on how to care for them. Who does Brooke see? I wish we had another cf clinic to choose from. I just don't know about switching to another city. It seems that it would be hard when they got sick. We also live about 2 miles from the clinic. Did you make it to Great Strides this year? You can e-mail me if you want. sdelorenzo@sbcglobal.net
Megan -
Jack has been using pulmozyme since he was a month old. So I really have no idea if it works for him. I am pretty confident that it works for Sophia. Her first year she had a difficult time with colds and on antibiotics about three times. Since she started pulmozyme at her first birthday she has only been on oral antibiotics once. Maybe it was her age, but it sure seemed to be a big improvement for her.
I did not notice any precautions against cross-contamination at the Minn. clinic either. But I didn't see any other kids in the clinic that day either, so it didn't bother me. I don't think doctors agree on much. One doctor will tell us one thing and another doctor (GI, other cf doctor, pediatrician) will tell us something else. I just have to do the research and figure out what works best for my kids.
Sharon, mom of Sophia, 5 and Jack, 2 both with cf
Hello. Funny, I have spoken to a number of parents here in Houston and everybody seems to really like their doctor. I have not been that impressed though. Do you ever get anything more than just a pat on the head? Their doctor is a nice man, agreeable with any changes I want to make, but not much input on how to care for them. Who does Brooke see? I wish we had another cf clinic to choose from. I just don't know about switching to another city. It seems that it would be hard when they got sick. We also live about 2 miles from the clinic. Did you make it to Great Strides this year? You can e-mail me if you want. sdelorenzo@sbcglobal.net
Megan -
Jack has been using pulmozyme since he was a month old. So I really have no idea if it works for him. I am pretty confident that it works for Sophia. Her first year she had a difficult time with colds and on antibiotics about three times. Since she started pulmozyme at her first birthday she has only been on oral antibiotics once. Maybe it was her age, but it sure seemed to be a big improvement for her.
I did not notice any precautions against cross-contamination at the Minn. clinic either. But I didn't see any other kids in the clinic that day either, so it didn't bother me. I don't think doctors agree on much. One doctor will tell us one thing and another doctor (GI, other cf doctor, pediatrician) will tell us something else. I just have to do the research and figure out what works best for my kids.
Sharon, mom of Sophia, 5 and Jack, 2 both with cf
S
sdelorenzo
Guest
Brooke -
Hello. Funny, I have spoken to a number of parents here in Houston and everybody seems to really like their doctor. I have not been that impressed though. Do you ever get anything more than just a pat on the head? Sophia did go to Dr. Oermann, now we go to Dr. Hiatt. Nice man, agreeable with any changes I want to make, but not much input on how to care for them. Who does Brooke see? I wish we had another cf clinic to choose from! I just don't know about going to another city. It seems that it would be hard when they got sick. We also live about 2 miles from the clinic.
Megan -
Jack has been using pulmozyme since he was a month old. So I really have no idea if it works for him. I am pretty confident that it works for Sophia. Her first year she had a difficult time with colds and on antibotics about three times. Since she started pulmozyme she has only been on oral antibotics once. Maybe it was her age, but it sure seemed to be a big improvement for her.
I did not notice any precautions against cross-contaimination at the Minn. clinic either. But I didn't see any other kids in the clinic that day either, so it didn't bother me. I don't doctors agree on much. That is one thing I have learned. One doctor will tell us one thing and another doctor (GI, other cf, pediatirican) will tell us something else. I just have to do the research and figure out what works best for my kids.
Sharon
Hello. Funny, I have spoken to a number of parents here in Houston and everybody seems to really like their doctor. I have not been that impressed though. Do you ever get anything more than just a pat on the head? Sophia did go to Dr. Oermann, now we go to Dr. Hiatt. Nice man, agreeable with any changes I want to make, but not much input on how to care for them. Who does Brooke see? I wish we had another cf clinic to choose from! I just don't know about going to another city. It seems that it would be hard when they got sick. We also live about 2 miles from the clinic.
Megan -
Jack has been using pulmozyme since he was a month old. So I really have no idea if it works for him. I am pretty confident that it works for Sophia. Her first year she had a difficult time with colds and on antibotics about three times. Since she started pulmozyme she has only been on oral antibotics once. Maybe it was her age, but it sure seemed to be a big improvement for her.
I did not notice any precautions against cross-contaimination at the Minn. clinic either. But I didn't see any other kids in the clinic that day either, so it didn't bother me. I don't doctors agree on much. That is one thing I have learned. One doctor will tell us one thing and another doctor (GI, other cf, pediatirican) will tell us something else. I just have to do the research and figure out what works best for my kids.
Sharon
jonandlindsay
New member
Megan -
When you say Dr. Warwick reccommends an hour of the Vest a day, is that an hour, continuously, or just an hour total over the course of two or three treatments?
Thanks!
~ Lindsay
Mom to Ella, 2-3/4 w/CF
When you say Dr. Warwick reccommends an hour of the Vest a day, is that an hour, continuously, or just an hour total over the course of two or three treatments?
Thanks!
~ Lindsay
Mom to Ella, 2-3/4 w/CF
M
mneville
Guest
He recommends an hour total when healthy. Two half hour sessions
daily. He also says it can be done while sleeping. I am not so sure
Aidan would sleep through it as we have him at a rather high
pressure. We are also going to get a car adapter so it can be done
in the car when he gets older.<br>
<br>
Megan
daily. He also says it can be done while sleeping. I am not so sure
Aidan would sleep through it as we have him at a rather high
pressure. We are also going to get a car adapter so it can be done
in the car when he gets older.<br>
<br>
Megan
There was someone who posted here or on another site a year or so ago, who had two children wcf and her husband would put the kids in their vests early in the morning while they slept. Some kids fall asleep doing the vest, so you might be able to do it while they're sleeping.
When one says an HOUR with the vest it does sound like a bit much, but we do 20 minutes of manual CPT 3 times a day, so it's all the same. <img src="i/expressions/face-icon-small-smile.gif" border="0"> L
When one says an HOUR with the vest it does sound like a bit much, but we do 20 minutes of manual CPT 3 times a day, so it's all the same. <img src="i/expressions/face-icon-small-smile.gif" border="0"> L