Home

Pediatrician for a child with chronic health issues
1, 2  Next
 
Post new topic   Reply to topic    Forum -> Children's Health


View latest: 24h 48h 72h


amother




OP
 

Post Fri, Jan 01 2021, 1:32 am
Hi there,
I’m seeking advice on this as we are a little lost with how to go about this.
Does your pediatrician work with your specialist? Do you reach out directly to your specialist when issues that the pediatrician can’t handle come up or do you run it by your pediatrician first?
Do you feel that your pediatrician is equipped to deal with your child’s health needs and if so what is it- the doctors experience (either in knowing the condition or just by accumulated knowledge) or is it because they coordinate with the specialist?

We’re dealing with a rare complex health issue(s) and we’re finding ourselves stuck at times. With quite a few doctors in the picture they each like to stick to their specialty (mostly out of humbleness and not stepping on other doctors toes, rather than lack of knowledge) so they want us speaking to the pediatrician, but I feel there have been too many wrong judgment calls on their part for us to feel comfortable in them being our point person. I’m on the lookout for a new pediatrician, which I know will be hard to find...

Advice and experiences appreciated.
Back to top

amother




Azure
 

Post Fri, Jan 01 2021, 4:04 am
amother [ OP ] wrote:
Hi there,
I’m seeking advice on this as we are a little lost with how to go about this.
Does your pediatrician work with your specialist? Do you reach out directly to your specialist when issues that the pediatrician can’t handle come up or do you run it by your pediatrician first?
Do you feel that your pediatrician is equipped to deal with your child’s health needs and if so what is it- the doctors experience (either in knowing the condition or just by accumulated knowledge) or is it because they coordinate with the specialist?

We’re dealing with a rare complex health issue(s) and we’re finding ourselves stuck at times. With quite a few doctors in the picture they each like to stick to their specialty (mostly out of humbleness and not stepping on other doctors toes, rather than lack of knowledge) so they want us speaking to the pediatrician, but I feel there have been too many wrong judgment calls on their part for us to feel comfortable in them being our point person. I’m on the lookout for a new pediatrician, which I know will be hard to find...

Advice and experiences appreciated.


Different conditions require different doctors to coordinate care. Some pediatricians are capable of it, however they might be limited if they aren't apart of the same hospital system you see specialists.

One of my children, their care coordination when it comes to their condition is managed by a genetics team who specializes in their issue and know the relevant people we need to see, gives referrals etc.

Another child has a neurological issue which effects their physical devel... so we see a team connected to that child's issue and the rehab doctor/neurologist collaborate in terms of care management.

Our pediatrician is good for sick visits and the regular stuff. We picked an office with competent staff if we need paperwork ASAP. Doctor also has emergency line and calls back without a fuss when we need after-hours.

Ultimately I would say you need a team of specialists who are willing to support you and work together. If your current set up isn't doing that and you're in the tristate area, go somewhere else there's plenty of options.
Back to top

amother




OP
 

Post Sat, Jan 02 2021, 10:52 pm
amother [ Azure ] wrote:
Different conditions require different doctors to coordinate care. Some pediatricians are capable of it, however they might be limited if they aren't apart of the same hospital system you see specialists.

One of my children, their care coordination when it comes to their condition is managed by a genetics team who specializes in their issue and know the relevant people we need to see, gives referrals etc.

Another child has a neurological issue which effects their physical devel... so we see a team connected to that child's issue and the rehab doctor/neurologist collaborate in terms of care management.

Our pediatrician is good for sick visits and the regular stuff. We picked an office with competent staff if we need paperwork ASAP. Doctor also has emergency line and calls back without a fuss when we need after-hours.

Ultimately I would say you need a team of specialists who are willing to support you and work together. If your current set up isn't doing that and you're in the tristate area, go somewhere else there's plenty of options.

Thanks
Our situation needs a pediatrician who can besides do the care coordination/paperwork etc be able to deal with frequent infections and how they effect this child/condition.
Back to top

amother




Jetblack
 

Post Sat, Jan 02 2021, 11:13 pm
amother [ OP ] wrote:
Thanks
Our situation needs a pediatrician who can besides do the care coordination/paperwork etc be able to deal with frequent infections and how they effect this child/condition.
When we were dealing with this we used our specialists as primary care.
Back to top

amother




OP
 

Post Sat, Jan 02 2021, 11:39 pm
amother [ Jetblack ] wrote:
When we were dealing with this we used our specialists as primary care.

Thanks for saying that. I feel that this option would be in my child’s best interest but they don’t seem to want to take responsibility for the day to day needs...
Which specialty were you mostly dealing with?
Back to top

amother




Jetblack
 

Post Sat, Jan 02 2021, 11:41 pm
amother [ OP ] wrote:
Thanks for saying that. I feel that this option would be in my child’s best interest but they don’t seem to want to take responsibility for the day to day needs...
Which specialty were you mostly dealing with?
hematology/immunology

It was such a relief when we found the right team. None of the pediAtricians we tried were equipped to deal. Even now since we’ve been discharged from their care to regular primary care I miss it. We live in town and all the pediatricians are factories. They won’t give my child extra care, barely look over his chart when we come. It’s all on me.
Back to top

amother




Slateblue
 

Post Sat, Jan 02 2021, 11:42 pm
Where in the world are you located?
Back to top

amother




OP
 

Post Sat, Jan 02 2021, 11:42 pm
amother [ Slateblue ] wrote:
Where in the world are you located?

New York
Where else Wink
Back to top

amother




Cerulean
 

Post Sat, Jan 02 2021, 11:44 pm
J
Back to top

amother




Cerulean
 

Post Sat, Jan 02 2021, 11:46 pm
As a pediatric social worker I recommend a pediatrician within the same hospital system as your specialists so they can easily access the EMR and collaborate informally as needed. Also many hospitals have a complex care program where an NP oversees all the specialities (these programs have strict criteria and limited slots but def worth inquiring if your hospital has one) But IME it’s not at all appropriate for the specialist to serve as your child’s PCP; they’re just not equipped for that
Back to top

amother




OP
 

Post Sat, Jan 02 2021, 11:46 pm
amother [ Cerulean ] wrote:
As a pediatric social worker I recommend a pediatrician within the same hospital system as your specialists so they can easily access the EMR and collaborate informally as needed. Also many hospitals have a complex care program where an NP oversees all the specialities (these programs have strict criteria and limited slots but def worth inquiring if your hospital has one)

Hospital is almost 2 hours away. I only know of 1 complex care program and btdt...
Back to top

amother




Cerulean
 

Post Sat, Jan 02 2021, 11:47 pm
amother [ OP ] wrote:
Hospital is almost 2 hours away. I only know of 1 complex care program and btdt...


Not sure I understand. The specialists are 2 hours away too? Or just the hospital
Back to top

amother




OP
 

Post Sat, Jan 02 2021, 11:49 pm
amother [ Cerulean ] wrote:
Not sure I understand. The specialists are 2 hours away too? Or just the hospital

Both
Back to top

amother




Cerulean
 

Post Sat, Jan 02 2021, 11:50 pm
amother [ OP ] wrote:
Both


So then why are you so eager to have the specialist be your PCP? Am I missing something?
Back to top

amother




OP
 

Post Sat, Jan 02 2021, 11:56 pm
amother [ Cerulean ] wrote:
So then why are you so eager to have the specialist be your PCP? Am I missing something?

Because they know the situation and based on labs or whatever done locally they can guide us. Main specialist is ALWAYS available via email and had saved us plenty times when we couldn’t get hold of pediatrician.
Back to top

amother




Cerulean
 

Post Sun, Jan 03 2021, 12:00 am
amother [ OP ] wrote:
Because they know the situation and based on labs or whatever done locally they can guide us. Main specialist is ALWAYS available via email and had saved us plenty times when we couldn’t get hold of pediatrician.


But they’re not equipped to do well visits, vaccines, monitor development and fill out (I’m assuming) lots of school forms, DME prescription, insurance snafus etc. I’d ask this specialist since you regard her so highly to recommend a pediatrician in her system for you.
Back to top

amother




Jetblack
 

Post Sun, Jan 03 2021, 12:02 am
amother [ Cerulean ] wrote:
But they’re not equipped to do well visits, vaccines, monitor development and fill out (I’m assuming) lots of school forms, DME prescription, insurance snafus etc. I’d ask this specialist since you regard her so highly to recommend a pediatrician in her system for you.
Specialists are equipped to handle all this just fine.
Back to top

thunderstorm




 
 
 
 

Post Sun, Jan 03 2021, 12:02 am
I guess it depends on what your dealing with. My pediatrician guided us to the hospital first. Then we ended up with specialists who were in touch with the pediatrics and post hospital we followed up with the specialists as well for months afterward. Any time there is a change , the specialists contact the pediatrician to update. But for the actual issue we go to the specialists, for follow up appointments as well. For all other areas we see the pediatrician . Sometimes the pediatrician will send us for bloodwork, discover that we need to see the specialists again and will give us the guidance of how to proceed.
Back to top

amother




OP
 

Post Sun, Jan 03 2021, 12:06 am
amother [ Cerulean ] wrote:
But they’re not equipped to do well visits, vaccines, monitor development and fill out (I’m assuming) lots of school forms, DME prescription, insurance snafus etc. I’d ask this specialist since you regard her so highly to recommend a pediatrician in her system for you.

These things can be done by any local pediatrician. But any local pediatrician will (most likely) not have the other knowledge needed...
We were recommended someone, but honestly, what will be the point? Fly 2 hours (each way) for every fever & sniffle?
Back to top

amother




Cerulean
 

Post Sun, Jan 03 2021, 12:11 am
amother [ OP ] wrote:
These things can be done by any local pediatrician. But any local pediatrician will (most likely) not have the other knowledge needed...
We were recommended someone, but honestly, what will be the point? Fly 2 hours (each way) for every fever & sniffle?


I’m sorry I misunderstood. You said 2 hours away, I assumed 2 hour drive not flight.

Do you live near a major children’s hospital? I’d start with pediatrician affiliated with the hospitals as they will have experience dealing with other (differently) medically fragile and complex kids.
Back to top
1, 2  Next Recent Topics

Page 1 of 2 View latest: 24h 48h 72h


Post new topic   Reply to topic    Forum -> Children's Health

Related Topics Replies Last Post
Precious Health of Lakewood
by amother
3 Sun, May 16 2021, 11:27 am View last post
How to get rid of label on a child
by amother
5 Wed, May 12 2021, 10:02 pm View last post
Best bottle for baby with sucking issues/low muscle tone
by amother
11 Wed, May 12 2021, 9:03 am View last post
Dr Rosen Refuah Health Monsey
by amother
2 Tue, May 11 2021, 11:09 am View last post
How to help a child with anxiety/ compulsive behaviors?
by amother
4 Tue, May 04 2021, 11:54 pm View last post