Re: Lost confidence in pediatrician

[Guest guest]

If the pediatrician was wrong about this, just imagine what else he

is wrong about. Definitely switch. And be sure to complain to his

medical group. Without pointing out doctors mistakes, no improvement

can be made in medical care. Don't let what happened to you, happen

to someone else. Write a letter explaining the problem--you may be

surprised at how far they will go to apologize and correct the

problem.

> Hi Everyone,

> We had our son Zach tested for CF a month ago. We should have had

> him DNA tested at birth because he had a meconium illeus, but our

> docs assured us to wait to see until the newborn screen blood tests

> came back. His test was normal. I just contacted the director of

> newborn screening for our state and it turns out that my state does

> not even test for CF!!!!

> My pediatrician put off a DNA test for a year because my son's

> newborn screen test was normal. I have lost all confiedence in his

> pediatrican and may be switching doctors even though it may include

> driving an hour to a new doctor. The doc he has now is just a few

> minutes away but I worry that she is clueless!

> My husband wants to stay with this doctor because of the

> convenience, but I am not so sure.

> Any advice would be appreciated...

>

> Thanks!

> Sara - Mommy of Zachary 1 wcf

[Guest guest]

--Hi- I would switch, if she was unaware of that test then just think

what else could slip by here,(scary). That hour drive is well worth

it. My son is going on a year and Im still getting the run around,

but luckily my doctors admitted that they dont know and have sent him

on and our drive takes us 3 hours to get home now w/ traffic in

so.cal. but its worth it to get the right care. Hopfully we just can

get some awnsers soon! (test pending) Good- luck - I know how them

husbands think-haha Kari

- In cfparents , " dwson2 " <dwson2@y...> wrote:

> Hi Everyone,

> We had our son Zach tested for CF a month ago. We should have had

> him DNA tested at birth because he had a meconium illeus, but our

> docs assured us to wait to see until the newborn screen blood tests

> came back. His test was normal. I just contacted the director of

> newborn screening for our state and it turns out that my state does

> not even test for CF!!!!

> My pediatrician put off a DNA test for a year because my son's

> newborn screen test was normal. I have lost all confiedence in his

> pediatrican and may be switching doctors even though it may include

> driving an hour to a new doctor. The doc he has now is just a few

> minutes away but I worry that she is clueless!

> My husband wants to stay with this doctor because of the

> convenience, but I am not so sure.

> Any advice would be appreciated...

>

> Thanks!

> Sara - Mommy of Zachary 1 wcf

[Guest guest]

Are you just going to a pediatrician? That's my question.

I know when Greg was 3 months old and congested, his pediatrician who

is 15 minutes from us sent us to a major medical center and asthma

doctor there for testing.

Now we only use our pediatrician for simple things, like yearly

shots, simple colds, rashes, ect. Otherwise we drive an hour to our

CF doctor.

Also, my Eddie has a re-occuring benign tumor that grows in his ear

canal. And we drive an hour and half to that ear specialist.

All I'm saying is that all children deserve the best care possible

and if you are uncomfortable with your pediatrician, then a longer

drive is worth it.

mom of 2 w/cf

[Guest guest]

Our state (Pennsylvania) doesn't test for CF in their newborn screening

tests but the hospital my daughter was born at, does in fact do CF

newborn testing on all newborns. Could it be that your hospital or

pediatrician did the newborn test for CF, even though the state doesn't

require it? I think this is a pretty common practice. You may want to

call the hospital he was born at and ask what newborn tests are/were

preformed by that individual hospital.

Just a thought,

- mom to Emma 2 1/2 years old w/cf and Isabelle 4 1/2 years old

wo/cf

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[Guest guest]

I cannot blame you I am afraid I would not feel comfortable with my

pediatrician under those circumstances also.

Lost Confidence in Pediatrician

> Hi Everyone,

> We had our son Zach tested for CF a month ago. We should have had

> him DNA tested at birth because he had a meconium illeus, but our

> docs assured us to wait to see until the newborn screen blood tests

> came back. His test was normal. I just contacted the director of

> newborn screening for our state and it turns out that my state does

> not even test for CF!!!!

> My pediatrician put off a DNA test for a year because my son's

> newborn screen test was normal. I have lost all confiedence in his

> pediatrican and may be switching doctors even though it may include

> driving an hour to a new doctor. The doc he has now is just a few

> minutes away but I worry that she is clueless!

> My husband wants to stay with this doctor because of the

> convenience, but I am not so sure.

> Any advice would be appreciated...

>

> Thanks!

> Sara - Mommy of Zachary 1 wcf

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Here in Iowa they ask you if you would like the test for CF. So right now it

is an option. Personally I think it should be mandatory!! Deb A

[Guest guest]

Idaho does not do CF screening in newborns either. I am writing to share

our experience. When our first daughter was born and then finally diagnosed

her " local " pediatrician suggested that we switch over to a larger clinic

with more specialized docs in addition to seeing her CF team in Utah on a

regular basis. We asked her CF team to recommend a closer peds doc to

follow her for the basic stuff (we have learned that the basic stuff is

seldom basic for a child with cf, and the basic doc's should know when to

call in the cf team). The doc that Her cf team rec. is not one that I

particularly liked as I have worked with him before, but he is a very good

doc. We went to him for 4 years, started our second daughter with him and

all the while I complained to my husband about how awful he made me feel,

how they never got back to us with information and test results, how he

denied to supply paperwork for her state assistance, etc. .. but we stayed

with him because he was a good doc and the girls liked him. Last year both

girls were quite ill and we went in for a throat culture, he suggested that

we may need to get them to Primary Children's for a clean out and he would

phone me later that evening. After two days and no call, I phoned our CF

coordinator at Children's and set up the clean out for 10 days later we

never did hear from the doc. When we arrived at Children's they placed us

in isolation, imagine my surprise when they told me because their Idaho doc

had phoned them to let them know their cultures came back with

stentotrophmonus, we could have been on an oral antibiotic at home to assist

with controlling this, however the docs offices nor himself never bothered

to let us know and when I phoned to check I had to wait and talk to him as

they could not give that info out. I was livid. When we got home, I did

some more checking and begging for a doctor no longer accepting patients to

please take us on, the kids were the easy part, mom is the problem. We

switched and I couldn't be happier. Health care is never going to be

perfect, but I strongly encourage parents to make sure they are with a

doctor that they feel comfortable with. It will make a huge difference. I

actually made appointments and interviewed the docs without the kids' there

with a list of " these are my expectations " . Not everyone can do this but

ask around to parents in your area especially those with children that spend

a lot of time in the system. We have found the just because a doctor is

" good " or understands cf doesn't make them appropriate to care for your

children. Sometimes I think that we forget our helthcare is a choice and we

should shop around. Just my two cents.

Kris in Idaho

Morgen and Eme bwcf

----- Original Message -----

[Guest guest]

I feel so lucky to have the doctor we have at the University of Iowa because

before he specialist in CF he was a pediatrician. Even though I have to take

our daughter to our other pediatrician for her I feel blessed to have Dr.

to talk to about other regular ped. problems. If he feels I should go

to the other Pediatrician he will tell me but most of the time he will deal

with both issues. Deb A

[Guest guest]

I would definately switch doctors. It could be your child's life.

I just went through something very similar. My daughter's pediatrician

told me she didn't know why I kept bringing my daughter back to her

because we all knew she had CF and there was nothing she could do. I'm

sorry but I thought you had to treat symptoms. Well, in August we were

back to the pediatrician's office. Her comment to me was, " Keep doing

what you are doing or take her to the emergency room. " I'm in shock at

this point. Why do I have a pediatrician? So I took her to the

emergency room. She had pnemonia and dehydration so bad she was

admitted with her veins collapsing. After my daughter got out of the

hospital I scheduled an appointment with the pulmonologist. I

discussed with him the events that landed my daughter in the hospital.

He and I agreed it was time to find a new pediatrician. He made a

recommendation. But it is not always so easy to change with the way

insurance co. are today. So I got on the phone with my insurance co..

It was considered an urgent switch. They wrote up the old pediatrician

for insufficient care. They agreed with the suggestion of the

pulmonologist. So we made the switch. That was the best thing that has

happened to us. The new pediatrician got us in-home schooling when she

is sick, he has delt with the school, he has gotten her medical

assistance, etc. I am glad I listened to the pulmonologist and made

the switch. Hope you will use this advise and find another doctor.

> Hi Everyone,

> We had our son Zach tested for CF a month ago. We should have had

> him DNA tested at birth because he had a meconium illeus, but our

> docs assured us to wait to see until the newborn screen blood tests

> came back. His test was normal. I just contacted the director of

> newborn screening for our state and it turns out that my state does

> not even test for CF!!!!

> My pediatrician put off a DNA test for a year because my son's

> newborn screen test was normal. I have lost all confiedence in his

> pediatrican and may be switching doctors even though it may include

> driving an hour to a new doctor. The doc he has now is just a few

> minutes away but I worry that she is clueless!

> My husband wants to stay with this doctor because of the

> convenience, but I am not so sure.

> Any advice would be appreciated...

>

> Thanks!

> Sara - Mommy of Zachary 1 wcf

[Guest guest]

I would definitley go for the doc that is an hour away. When Noah

first came home form his staff in the NICu dx with cf we went to a

ped close to home. This doc didn't even listen to his lungs. Iw ent

home called my home helath nurse and she set us up with a great team

of peds. It takes me 45 min with traffic but well worth it. I could

not believe that a doc would not listen to the lungs of a new patient

that has cf. I was so shocked i just walked out.

mom to Breanna 11 wocf and Noah 3wcf

> Hi Everyone,

> We had our son Zach tested for CF a month ago. We should have had

> him DNA tested at birth because he had a meconium illeus, but our

> docs assured us to wait to see until the newborn screen blood tests

> came back. His test was normal. I just contacted the director of

> newborn screening for our state and it turns out that my state does

> not even test for CF!!!!

> My pediatrician put off a DNA test for a year because my son's

> newborn screen test was normal. I have lost all confiedence in his

> pediatrican and may be switching doctors even though it may include

> driving an hour to a new doctor. The doc he has now is just a few

> minutes away but I worry that she is clueless!

> My husband wants to stay with this doctor because of the

> convenience, but I am not so sure.

> Any advice would be appreciated...

>

> Thanks!

> Sara - Mommy of Zachary 1 wcf

[Guest guest]

Just wanted to say that I completely understand! My son had pneumonia

and malabsorption at 13-14mos and my dr didn't even mention CF, or

suggest a sweat test. This wasn't done until he was 17mos and in the

hospital with pneumonia again. At that point, I was 8 weeks pregnant!

Not that I don't want this baby, but I could have made informed

decisions had we know 's diagnosis sooner. I am switching dr's.

You can't go to a dr. that you have no confidence in.

Wendi

Mom to Keira (3 wocf), (18mos wcf) and new baby due Sept/03

> Hi Everyone,

> We had our son Zach tested for CF a month ago. We should have had

> him DNA tested at birth because he had a meconium illeus, but our

> docs assured us to wait to see until the newborn screen blood tests

> came back. His test was normal. I just contacted the director of

> newborn screening for our state and it turns out that my state does

> not even test for CF!!!!

> My pediatrician put off a DNA test for a year because my son's

> newborn screen test was normal. I have lost all confiedence in his

> pediatrican and may be switching doctors even though it may include

> driving an hour to a new doctor. The doc he has now is just a few

> minutes away but I worry that she is clueless!

> My husband wants to stay with this doctor because of the

> convenience, but I am not so sure.

> Any advice would be appreciated...

>

> Thanks!

> Sara - Mommy of Zachary 1 wcf