Have you ever felt overwhelmed trying to find the right doctor for your special needs child? Journey with me, Dr. Deanna Iverson, as I recount the trials and triumphs of assembling a dedicated medical team for my son. You’ll hear about the turning point when we realized our first pediatrician wasn’t suitable and the extensive search that led us to a doctor who has been invaluable for over 13 years. This episode is packed with actionable strategies to help you find medical professionals who truly understand and support your child’s unique healthcare needs.
Ever had a specialist disregard your concerns about your child? You’re not alone. We delve into the complex dynamics of working with specialists—balancing their medical expertise with your intimate knowledge of your child. Through personal stories, like dealing with an unhelpful orthopedic surgeon and the breakthrough we found with a geneticist, I highlight the importance of preparation, persistence, and effective communication. Learn how to advocate for second opinions and share daily observations to ensure your child receives the most tailored and compassionate care.
Communication is the cornerstone of effective healthcare. Discover how to keep your cool and foster positive interactions with medical staff, even when faced with distressing news. By preparing questions ahead of time, bringing a support person to challenging appointments, and obtaining clear follow-up instructions, you can strengthen your relationships with doctors and enhance the care your child receives. This episode offers practical tips and heartfelt advice to empower you in making the best decisions for your child’s well-being. Join our Special Parent Podcast community and take the first step towards building a robust medical team for your special needs child.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
This program is made possible by friends and partners
of the Special Parent Podcast.
Speaker 2 (00:05):
I believe that empowering parents of special
needs children is like givingthem the superpower of
unconditional love andunbreakable determination.
They are not just parents, theyare true champions, shaping a
bright future for theirincredible children.
I'm Dr Deanna Iverson and I'mglad you're here.
Hello and welcome to theSpecial Parent Podcast with Dr
(00:33):
Deanna Iverson.
Have you begun to notice thatnot all the doctors that you
encounter are right for yourchild?
I can understand thatexperience.
One of the stories we have waswe had a pediatrician for our
son when he was young and sheseemed to not catch on to the
fact that there were kind of alot of little issues that just
(00:56):
kept coming up.
And when I would bring her tostuff, she would a lot of times
just say it's okay, everyonedevelops at their own pace, and
she's right, everyone doesdevelop at their own pace, and
she's right, everyone doesdevelop at their own pace.
But I noticed right away thatthis doctor wasn't really the
right doctor for my child oreven for me, and so what I
learned from that experience wasthat it's really important to
(01:17):
create a team, a team of doctors, specialists, but that team
even includes the schedulers andthe nurses, et cetera, because
that whole group of people.
They're all going to betogether to work for you and
your child.
So I want to talk to you alittle bit about how that worked
for me, how I developed thatteam, because the team of
(01:39):
doctors that I work with Iconsider to be one of my
personal relationships.
Not that we contact each otheroutside of doctor visits, of
course not.
But I have a relationship withthose individuals because I make
sure to speak into them and Imake it a point that they know
that we are a team on this.
We are a team working for mychild.
(02:02):
So how do we do this?
We have to find trusted doctors, we have to make sure to get
second opinions and, whennecessary, we sometimes have to
ask for a different doctor.
So, for example, when I didchange pediatricians, I took
time to actually go out andinterview pediatricians and it
(02:23):
was the third one I interviewed.
So it would have been after ourinitial pediatrician, three
interviews later, that I foundour current pediatrician, who
we've been with now for 13 plusyears and has been instrumental
in getting my son diagnosed withlots of different conditions,
who has been instrumental withgetting us in with some
(02:44):
specialists, who has beenincredibly communicative.
But it took some interviewingand it took some time to find
that person.
So I warn you off the bat, thisis a process a little bit.
Sometimes you don't get thechance to go about an interview.
For example, for my son with aGI doctor.
We were going through PhoenixChildren's Hospital because
(03:05):
that's the best hospital in thearea where we're at, and I only
had their list of GI doctors tochoose between unless I wanted
to switch hospitals, but I wasstill able to find someone good
in there.
So first thing to start off withis your pediatrician is really
important.
This is your point of contact,one of the most important people
on your team, because yourpediatrician is really important
(03:25):
.
This is your point of contact,one of the most important people
on your team, because yourpediatrician, especially due to
insurance needs, is going to bethe one to refer out, is going
to be the one sometimes who'swriting letters.
That letter could go to theschool.
That letter could be going toyour insurance company.
That letter could be going to aspecialist justifying the need
to see that specialist, etcetera.
(03:46):
So having a pediatrician thatyou can trust, having a
pediatrician that also trustsyou as a parent, that's really
important.
So take time to interview thoseand if you don't feel you're
right with one before you'reready to actually move, find the
next one that you want to moveon to, so that way you don't
(04:07):
feel like you're scrambling ifsomething important happens.
Specialists are another area.
So unless they're a specialistin your child's disability or
your child's unique and raredisease, they're a specialist in
their area.
So, for example, gi is aspecialist in the
gastrointestinal system andthey're really great for 90% of
(04:29):
the people that have thoseproblems.
But if your child has a raredisorder or your child has
something specific related totheir disability that may be
linked to this GI issue, the GIdoctor needs to sometimes be
brought in as a team member andsometimes I think we all know
this we don't want to say it outloud all the times because we
(04:50):
love our doctors, but they cansometimes get a little bit of a
big head.
So give them credit andappreciation for their specialty
.
But remember you're the experton your child and they're the
expert in their field.
So we have to work together toget what is best for our
children in this area.
So when you're working withyour specialists, definitely
(05:13):
give them that appreciation andthat credit and that respect for
their knowledge base in thatarea and then bring in your
knowledge base on your child andhopefully, as a team, you can
work things together.
Remember, not everyone's goingto fit in your knowledge base on
your child and hopefully, as ateam, you can work things
together.
Remember, not everyone's goingto fit in your village of
teamwork.
(05:34):
So when you're doing that,especially when you're dealing
with rare disorders, when you'reworking with doctors, take time
to just talk to them, kind ofon that personal level.
Some doctors are not reallygood at getting on that personal
level.
For example, we saw anorthopedic surgeon for our son
and he said it was a reallyquick appointment.
There were three trainees inthe room, med students or
(05:58):
students that had just, you know, had passed certain phases, etc
.
But they weren't exactly thedoctor on call yet signing the
paperwork, and he was like nope,this is what the x-ray shows,
this is what it is.
Here's the paperwork that sayswhat it is.
And I said well, my son has thisrare genetic disorder and I
think that might be related tothis.
Nope, seen this in lots of kids.
(06:18):
Here's what you need to do.
Let me know if you have anyquestions.
And that was it, and I wasstunned because this isn't my
first rodeo with doctors.
And yet I was not as preparedfor that one as I thought I
needed to be, and afterwardhindsight I was like holy cow.
I didn't have my questionsprepared, I wasn't ready to go,
(06:40):
I really wasn't a good teammember in that one, and neither
was the orthopedic surgeon.
So a week later we had anappointment with our geneticist
and I brought this up.
She pulls up the paper, andthen she pulls up the paper
being the doctor's notes, andthen she pulls up the x-ray and
she goes she's not theorthopedic surgeon, she's a
geneticist.
(07:00):
She goes hmm, no, because yourson's rare genetic disorder
affects bone.
We need to look at thisdifferently.
So it's okay to get a secondopinion, it's okay to mention
something that might appear tobe a specialty in one area to
other doctors too, because yourchild's unique case might be
(07:23):
something that a differentdoctor picks up on, and so she
referred us to a differentspecialist and, lo and behold,
it's getting treated in a verydifferent way.
So, while we all may be I lovethis analogy that I got we might
be paddling up the same river,but we may not be in the same
boat or paddling with the sameequipment.
But this can be a good thing.
So, remember, being successfulmeans working together with that
(07:46):
team of doctors, and I'm goingto have some resources on my
webpage, the specialparentorg,and if you go to that, you will
see that there are resourcesthat talk a little bit about
doctors and how to find them, etcetera.
So let's talk a little bitabout some tips and tricks.
Let each doctor know that youwant to be on a team with them.
(08:08):
Let them know that you are justinterested in finding the best
care for your child and that youcompletely appreciate and
respect their expertise.
You need their knowledge andexpertise.
You also need them to respectyour knowledge and expertise on
your child, your dailyexperiences with your child,
(08:29):
because those daily experiencesa lot of times can tell you way
more than any 20-minute doctorvisit can get down to.
Let's admit it, mamas and dadsout there, we don't always
remember those details untilwe're driving away from the
doctor's office and go oh, Iforgot to tell them about.
So your daily experiences areimportant.
(08:49):
Also, contact information.
Once you're established with adoctor, make sure you have a way
to contact them back and forth,because sometimes it is that
drive away or that next day orthat tantrum meltdown that you
think, oh my gosh, I think thatwas related to a foodie ate.
Maybe we do need to test for afood allergy, that you can just
send a quick note.
You don't have to wait for thenext six month visit down the
(09:11):
road.
You can send a quick note.
So make sure you get thatcontact information, for how do
you communicate with the doctorbetween doctor visits?
Another thing, especially withnew doctors don't trust all
doctors to read your child'smedical history.
I know we would love it if thatwas the case, but I was in a
(09:34):
situation where my son washaving to go under anesthesia
for a minor procedure and theanesthesiologist came in and
when she asked me to kind ofexplain why I was there so I
think they sometimes just checkand make sure that we all know
what's happening in the room Isaid my son has a rare genetic
disorder, it's called KBGsyndrome.
And she goes what does thatstand for?
(09:54):
And I said oh, it's not anacronym, that's the name of the
syndrome.
And she goes no, I haven'theard of that one.
And she gets out her phone andstarts looking it up and I went.
It's KBG syndrome, you'll findit, and I just waited patiently.
Pretty soon she looks up for me, puts her phone in her pocket
and goes.
So tell me a little bit aboutthat.
So don't trust that everydoctor has read your child's
(10:20):
medical history or understandsor knows a little bit about
their disability.
What I say is a great tip isprepare an elevator speech.
I don't know if you've heard ofthese before, but it's kind of
like a quick introduction toyour child before.
But it's kind of like a quickintroduction to your child.
When you meet with a doctor,especially for the first time.
You can summarize the conditionor the needs for your child in
(10:44):
a quick one to two minutes,maybe even less than that 30
seconds to a minute.
Now I know that might seemimpossible if we have some
really strong medical cases outthere.
So you really, when you'refirst meeting with them, you
kind of want to stick to somemajor topics and then seem
impossible if we have somereally strong medical cases out
there.
So you really, when you'refirst meeting with them, you
kind of want to stick to somemajor topics and then of course
you can refine that as you getto know the doctor better.
But like back with thatorthopedic surgeon.
(11:04):
I was not prepared with myelevator speech and that
appointment just left us withnothing.
Basically, it didn't help myson at all.
So I would say prepare a quickelevator speech to introduce
your child to the doctor.
In that elevator speech, stickto what's relevant medically but
(11:27):
also make sure to include atleast one amazing thing about
your kid that doctor should seeyour child not as a textbook
case but as a child that hassome unique and wonderful
properties.
But then practice that elevatorspeech before you walk into
each new doctor's appointmentand then modify it based on the
doctor you're seeing.
So these are like bullet pointson specific medical issues that
(11:49):
can relate to your child'smedical care.
I feel I would have been betterprepared if I had my elevator
speech practiced for that onetime.
Be positive and pleasant whenyou're working with doctors.
I know that's not easy.
I've lost it sometime on acouple of doctors and it's not
my finest moments and I canpromise you it didn't get me
(12:10):
anywhere.
Definitely didn't gain anythingwith that appointment or that
doctor.
So if we have to take a deepbreath and check ourself out for
a minute and come back, maybewe need to do that.
But there's a reason.
That saying is you get morebees with honey.
Because really what you'retrying to do here is you're
trying to establish thatrelationship.
(12:33):
You're trying to establish thatconnection with not only the
doctor but the physician's staffso that way you can contact
them and have that trustedcommunication.
So be positive and pleasant,especially when on the phone.
Bring questions with you writtendown Again.
(12:53):
Another time I wasn't preparedand thought of something later
but bring questions written down.
Have a piece of paper to writemore down on as you go so that
you can write down things.
Um, it's great I use Google.
It's great to use Google tohelp you figure out what
questions do I need to ask, whatare some things I should be
(13:14):
inquiring about.
But remember, google is notgoing to diagnose your child,
but it will give you a place toask questions.
So I'll give you an example.
My son had some symptoms and Ihad heard about something called
tethered cord.
So I was like, well, what isthis?
So I researched it.
(13:35):
Lo and behold, a bunch of thesymptoms fit my son.
So I contacted the pediatrician.
I said I think we might need areferral.
I heard about this thing calledtethered cord and when I looked
up what it was, my son has alot of these symptoms.
What do you think?
So, again, I'm giving thatexpertise, I'm giving that.
(13:56):
Hey, I appreciate you as partof my team and I'm coming to you
because I think there might besomething we should discuss.
Thankfully for my son, shejumped on it.
If something when you'reGoogling makes you afraid, check
yourself.
I had to do that.
I was Googling some things totry to figure out what questions
(14:18):
to ask with a new doctor, tomake sure that I covered it, to
make sure, hey, is theresomething I didn't think of?
And something popped up thatscared me because it could have
been and I had a little bit of ameltdown because it could have
been and I had a little bit of ameltdown.
So if that happens to you,don't take that to your doctor.
(14:39):
Take that to your friend oryour family member, your trusted
individual, and let them helpyou calm down so that you can
re-engage that thinking part notthat emotional part of your
brain where you can be like,okay, I can do this, and then
you can prepare appropriatequestions.
And again, most of the time weusually find out.
It's not the scariest thing,but sometimes we do and
sometimes it's good to processthat before we walk into that
(14:59):
doctor's appointment.
So if something makes younervous, don't fire off that
email right away, don't makethat phone call right away.
Leave that as part of your listof prepared questions and help
someone walk you through that.
So when you're taking notes atthose doctor's office, remember
I said, bring in your questionsand then have a paper to take
notes on.
One of the things that hashelped me so much is at the end
(15:22):
of visits, and when I'veforgotten to do this I've
regretted it.
At the end of visits I reviewwith the doctor Okay, so the
plan is the following, and Irepeat the plan.
So that way, if I'm getting itwrong, the doctor hears me get
it wrong and can make acorrection.
I review what I as a parenthave to do, what they as a
(15:42):
doctor have to do, what thetimeline is on that.
So is this going to happen injust a few hours?
Is this going to happen by nextweek?
Is this a two-month waitinglist?
Those kinds of things.
And then I also love to say hey, can I get a paper copy of
those prescriptions as well?
So for an example, they sent ina prescription for my son to
(16:03):
get physical therapy and about amonth went by and I finally
called and they were like, ohyeah, well, that's been sitting
with DDD.
And when I got the paper copy Icould do a lot of searching
myself.
So leave with paper copies ifpossible.
If you feel, or when you feelthat a doctor is kind of talking
around you or dismissing youwhich I've discussed a little
(16:23):
bit, I've had that feeling givethem some credit and
appreciation.
Then what I've found kind ofmakes them trip a little bit on
their 90% talk.
I've got this.
This is what I always say anddo for everyone who has this
case is I tell them some newfact about my child's medical
issues, even if it's not related.
(16:45):
So when I tell them somethingnew, oh, you know what we've
experienced da, da, da, da da.
Sometimes they go well, okay,but that's not really related.
I know it's not, but I wantedyou to know that this might be
part of his whole case.
So sometimes it just kind ofslows down the roll of the ball
from the doctor who's ready towalk out the room.
A little bit of ramble can helpat times.
(17:06):
Consider bringing another adultor non-family with you to
listen and take notes.
If it's going to be one ofthose emotionally charging
visits.
I know that really helps,especially if children have a
degenerative diseases or if ourchild has cancer those kind of
diagnoses which can rack ouremotions as we listen.
(17:29):
So so consider bringing someoneelse with you and I say a
non-family member, because it'llbe someone who's a little less
emotionally tied and probablywill pick up on some things and
they can take better notes.
Make sure you check out thosemedical records.
So after you take all yournotes and you confirm them, then
(17:53):
the other thing you can do isyou can get in contact with the
doctor afterwards to make sureyou have that contact
information but then pull therecords from the appointment
About a week usually takes themtwo or three days to get the
records finalized.
So within a week after theappointment you can either log
onto the parent portal if yourdoctor or hospital has that, or
just ask for the records to besent to you and read through
(18:16):
them and make sure your notesand those records still line up.
I discovered a lot ofinteresting things by reading
doctor's notes that I was likewell, that's not even something
we discussed in the appointment.
Here it is.
So that's something to thinkabout too.
If you have to ask for anotherdoctor or another opinion this
is what's really important Don'tdo so right at that visit or as
(18:38):
you're exiting.
That it puts the staff at thatdoctor's office kind of in a bad
position.
So what you want to do is, ifyou do have to look for another
opinion or you do want to talkto a different doctor, first
thing I would suggest that youdo is finish the appointment
(18:59):
you're on with a lot of thankyou and appreciation.
So that way, if they call thisdoctor and say, hey, I've got
someone you know, such and suchfamily, coming to me.
This doctor has great things tosay about you, then leave.
Then you might need to make aphone call later.
Maybe it's your pediatrician,hey, I need a different referral
.
Or maybe it's to that office.
I would like to see a differentdoctor in the office.
(19:21):
I don't think we meshed well,or I don't think that he had the
expertise on my child'sdisorder, et cetera.
But I would say, make sure youleave the office before doing
that.
It just kind of keeps things atthat more peaceful level.
All right, my last tip and tripfor you today is I love Google
Docs.
(19:42):
I love Google Docs because I canaccess it from my phone and I
can access it at home and that'swhere I keep a running record
of medical appointments andthings.
So on this date we saw thisdoctor and then there's a link
to the different Google doc withall the notes from that
appointment and you can evenscan handwritten notes and load
them in.
So I recommend that that way,if you're seeing a doctor and
(20:03):
something triggers oh wait, butlast year I saw a doctor and
they mentioned that samecondition or that same
possibility let me go look upthose notes real quick.
You have them right there atyour hand.
So that's my last tip for you.
Google Docs can be a reallygreat friend, or I'm sure
there's other apps out therethat are similar.
(20:24):
That's just the one that I use.
So, again, if you've started tonotice that not all doctors are
right for you and your child,here are some things that I have
done and I hope that you findthem helpful today Because, as
we know, this is special needsparenting and this is love.
Thank you so much for joiningme today and I look forward to
talking to you soon.
Speaker 1 (20:45):
This program is made possible by friends and partners
of the Special Parent Podcast.
For more information and tojoin our mailing list, visit
specialparentorg.
This program is made possible by friends and partners
of the Special Parent Podcast.
Speaker 2 (00:05):
I believe that empowering parents of special
needs children is like givingthem the superpower of
unconditional love andunbreakable determination.
They are not just parents, theyare true champions, shaping a
bright future for theirincredible children.
I'm Dr Deanna Iverson and I'mglad you're here.
Hello and welcome to theSpecial Parent Podcast with Dr
(00:33):
Deanna Iverson.
Have you begun to notice thatnot all the doctors that you
encounter are right for yourchild?
I can understand thatexperience.
One of the stories we have waswe had a pediatrician for our
son when he was young and sheseemed to not catch on to the
fact that there were kind of alot of little issues that just
(00:56):
kept coming up.
And when I would bring her tostuff, she would a lot of times
just say it's okay, everyonedevelops at their own pace, and
she's right, everyone doesdevelop at their own pace, and
she's right, everyone doesdevelop at their own pace.
But I noticed right away thatthis doctor wasn't really the
right doctor for my child oreven for me, and so what I
learned from that experience wasthat it's really important to
(01:17):
create a team, a team of doctors, specialists, but that team
even includes the schedulers andthe nurses, et cetera, because
that whole group of people.
They're all going to betogether to work for you and
your child.
So I want to talk to you alittle bit about how that worked
for me, how I developed thatteam, because the team of
(01:39):
doctors that I work with Iconsider to be one of my
personal relationships.
Not that we contact each otheroutside of doctor visits, of
course not.
But I have a relationship withthose individuals because I make
sure to speak into them and Imake it a point that they know
that we are a team on this.
We are a team working for mychild.
(02:02):
So how do we do this?
We have to find trusted doctors, we have to make sure to get
second opinions and, whennecessary, we sometimes have to
ask for a different doctor.
So, for example, when I didchange pediatricians, I took
time to actually go out andinterview pediatricians and it
(02:23):
was the third one I interviewed.
So it would have been after ourinitial pediatrician, three
interviews later, that I foundour current pediatrician, who
we've been with now for 13 plusyears and has been instrumental
in getting my son diagnosed withlots of different conditions,
who has been instrumental withgetting us in with some
(02:44):
specialists, who has beenincredibly communicative.
But it took some interviewingand it took some time to find
that person.
So I warn you off the bat, thisis a process a little bit.
Sometimes you don't get thechance to go about an interview.
For example, for my son with aGI doctor.
We were going through PhoenixChildren's Hospital because
(03:05):
that's the best hospital in thearea where we're at, and I only
had their list of GI doctors tochoose between unless I wanted
to switch hospitals, but I wasstill able to find someone good
in there.
So first thing to start off withis your pediatrician is really
important.
This is your point of contact,one of the most important people
on your team, because yourpediatrician is really important
(03:25):
.
This is your point of contact,one of the most important people
on your team, because yourpediatrician, especially due to
insurance needs, is going to bethe one to refer out, is going
to be the one sometimes who'swriting letters.
That letter could go to theschool.
That letter could be going toyour insurance company.
That letter could be going to aspecialist justifying the need
to see that specialist, etcetera.
(03:46):
So having a pediatrician thatyou can trust, having a
pediatrician that also trustsyou as a parent, that's really
important.
So take time to interview thoseand if you don't feel you're
right with one before you'reready to actually move, find the
next one that you want to moveon to, so that way you don't
(04:07):
feel like you're scrambling ifsomething important happens.
Specialists are another area.
So unless they're a specialistin your child's disability or
your child's unique and raredisease, they're a specialist in
their area.
So, for example, gi is aspecialist in the
gastrointestinal system andthey're really great for 90% of
(04:29):
the people that have thoseproblems.
But if your child has a raredisorder or your child has
something specific related totheir disability that may be
linked to this GI issue, the GIdoctor needs to sometimes be
brought in as a team member andsometimes I think we all know
this we don't want to say it outloud all the times because we
(04:50):
love our doctors, but they cansometimes get a little bit of a
big head.
So give them credit andappreciation for their specialty
.
But remember you're the experton your child and they're the
expert in their field.
So we have to work together toget what is best for our
children in this area.
So when you're working withyour specialists, definitely
(05:13):
give them that appreciation andthat credit and that respect for
their knowledge base in thatarea and then bring in your
knowledge base on your child andhopefully, as a team, you can
work things together.
Remember, not everyone's goingto fit in your knowledge base on
your child and hopefully, as ateam, you can work things
together.
Remember, not everyone's goingto fit in your village of
teamwork.
(05:34):
So when you're doing that,especially when you're dealing
with rare disorders, when you'reworking with doctors, take time
to just talk to them, kind ofon that personal level.
Some doctors are not reallygood at getting on that personal
level.
For example, we saw anorthopedic surgeon for our son
and he said it was a reallyquick appointment.
There were three trainees inthe room, med students or
(05:58):
students that had just, you know, had passed certain phases, etc
.
But they weren't exactly thedoctor on call yet signing the
paperwork, and he was like nope,this is what the x-ray shows,
this is what it is.
Here's the paperwork that sayswhat it is.
And I said well, my son has thisrare genetic disorder and I
think that might be related tothis.
Nope, seen this in lots of kids.
(06:18):
Here's what you need to do.
Let me know if you have anyquestions.
And that was it, and I wasstunned because this isn't my
first rodeo with doctors.
And yet I was not as preparedfor that one as I thought I
needed to be, and afterwardhindsight I was like holy cow.
I didn't have my questionsprepared, I wasn't ready to go,
(06:40):
I really wasn't a good teammember in that one, and neither
was the orthopedic surgeon.
So a week later we had anappointment with our geneticist
and I brought this up.
She pulls up the paper, andthen she pulls up the paper
being the doctor's notes, andthen she pulls up the x-ray and
she goes she's not theorthopedic surgeon, she's a
geneticist.
(07:00):
She goes hmm, no, because yourson's rare genetic disorder
affects bone.
We need to look at thisdifferently.
So it's okay to get a secondopinion, it's okay to mention
something that might appear tobe a specialty in one area to
other doctors too, because yourchild's unique case might be
(07:23):
something that a differentdoctor picks up on, and so she
referred us to a differentspecialist and, lo and behold,
it's getting treated in a verydifferent way.
So, while we all may be I lovethis analogy that I got we might
be paddling up the same river,but we may not be in the same
boat or paddling with the sameequipment.
But this can be a good thing.
So, remember, being successfulmeans working together with that
(07:46):
team of doctors, and I'm goingto have some resources on my
webpage, the specialparentorg,and if you go to that, you will
see that there are resourcesthat talk a little bit about
doctors and how to find them, etcetera.
So let's talk a little bitabout some tips and tricks.
Let each doctor know that youwant to be on a team with them.
(08:08):
Let them know that you are justinterested in finding the best
care for your child and that youcompletely appreciate and
respect their expertise.
You need their knowledge andexpertise.
You also need them to respectyour knowledge and expertise on
your child, your dailyexperiences with your child,
(08:29):
because those daily experiencesa lot of times can tell you way
more than any 20-minute doctorvisit can get down to.
Let's admit it, mamas and dadsout there, we don't always
remember those details untilwe're driving away from the
doctor's office and go oh, Iforgot to tell them about.
So your daily experiences areimportant.
(08:49):
Also, contact information.
Once you're established with adoctor, make sure you have a way
to contact them back and forth,because sometimes it is that
drive away or that next day orthat tantrum meltdown that you
think, oh my gosh, I think thatwas related to a foodie ate.
Maybe we do need to test for afood allergy, that you can just
send a quick note.
You don't have to wait for thenext six month visit down the
(09:11):
road.
You can send a quick note.
So make sure you get thatcontact information, for how do
you communicate with the doctorbetween doctor visits?
Another thing, especially withnew doctors don't trust all
doctors to read your child'smedical history.
I know we would love it if thatwas the case, but I was in a
(09:34):
situation where my son washaving to go under anesthesia
for a minor procedure and theanesthesiologist came in and
when she asked me to kind ofexplain why I was there so I
think they sometimes just checkand make sure that we all know
what's happening in the room Isaid my son has a rare genetic
disorder, it's called KBGsyndrome.
And she goes what does thatstand for?
(09:54):
And I said oh, it's not anacronym, that's the name of the
syndrome.
And she goes no, I haven'theard of that one.
And she gets out her phone andstarts looking it up and I went.
It's KBG syndrome, you'll findit, and I just waited patiently.
Pretty soon she looks up for me, puts her phone in her pocket
and goes.
So tell me a little bit aboutthat.
So don't trust that everydoctor has read your child's
(10:20):
medical history or understandsor knows a little bit about
their disability.
What I say is a great tip isprepare an elevator speech.
I don't know if you've heard ofthese before, but it's kind of
like a quick introduction toyour child before.
But it's kind of like a quickintroduction to your child.
When you meet with a doctor,especially for the first time.
You can summarize the conditionor the needs for your child in
(10:44):
a quick one to two minutes,maybe even less than that 30
seconds to a minute.
Now I know that might seemimpossible if we have some
really strong medical cases outthere.
So you really, when you'refirst meeting with them, you
kind of want to stick to somemajor topics and then seem
impossible if we have somereally strong medical cases out
there.
So you really, when you'refirst meeting with them, you
kind of want to stick to somemajor topics and then of course
you can refine that as you getto know the doctor better.
But like back with thatorthopedic surgeon.
(11:04):
I was not prepared with myelevator speech and that
appointment just left us withnothing.
Basically, it didn't help myson at all.
So I would say prepare a quickelevator speech to introduce
your child to the doctor.
In that elevator speech, stickto what's relevant medically but
(11:27):
also make sure to include atleast one amazing thing about
your kid that doctor should seeyour child not as a textbook
case but as a child that hassome unique and wonderful
properties.
But then practice that elevatorspeech before you walk into
each new doctor's appointmentand then modify it based on the
doctor you're seeing.
So these are like bullet pointson specific medical issues that
(11:49):
can relate to your child'smedical care.
I feel I would have been betterprepared if I had my elevator
speech practiced for that onetime.
Be positive and pleasant whenyou're working with doctors.
I know that's not easy.
I've lost it sometime on acouple of doctors and it's not
my finest moments and I canpromise you it didn't get me
(12:10):
anywhere.
Definitely didn't gain anythingwith that appointment or that
doctor.
So if we have to take a deepbreath and check ourself out for
a minute and come back, maybewe need to do that.
But there's a reason.
That saying is you get morebees with honey.
Because really what you'retrying to do here is you're
trying to establish thatrelationship.
(12:33):
You're trying to establish thatconnection with not only the
doctor but the physician's staffso that way you can contact
them and have that trustedcommunication.
So be positive and pleasant,especially when on the phone.
Bring questions with you writtendown Again.
(12:53):
Another time I wasn't preparedand thought of something later
but bring questions written down.
Have a piece of paper to writemore down on as you go so that
you can write down things.
Um, it's great I use Google.
It's great to use Google tohelp you figure out what
questions do I need to ask, whatare some things I should be
(13:14):
inquiring about.
But remember, google is notgoing to diagnose your child,
but it will give you a place toask questions.
So I'll give you an example.
My son had some symptoms and Ihad heard about something called
tethered cord.
So I was like, well, what isthis?
So I researched it.
(13:35):
Lo and behold, a bunch of thesymptoms fit my son.
So I contacted the pediatrician.
I said I think we might need areferral.
I heard about this thing calledtethered cord and when I looked
up what it was, my son has alot of these symptoms.
What do you think?
So, again, I'm giving thatexpertise, I'm giving that.
(13:56):
Hey, I appreciate you as partof my team and I'm coming to you
because I think there might besomething we should discuss.
Thankfully for my son, shejumped on it.
If something when you'reGoogling makes you afraid, check
yourself.
I had to do that.
I was Googling some things totry to figure out what questions
(14:18):
to ask with a new doctor, tomake sure that I covered it, to
make sure, hey, is theresomething I didn't think of?
And something popped up thatscared me because it could have
been and I had a little bit of ameltdown because it could have
been and I had a little bit of ameltdown.
So if that happens to you,don't take that to your doctor.
(14:39):
Take that to your friend oryour family member, your trusted
individual, and let them helpyou calm down so that you can
re-engage that thinking part notthat emotional part of your
brain where you can be like,okay, I can do this, and then
you can prepare appropriatequestions.
And again, most of the time weusually find out.
It's not the scariest thing,but sometimes we do and
sometimes it's good to processthat before we walk into that
(14:59):
doctor's appointment.
So if something makes younervous, don't fire off that
email right away, don't makethat phone call right away.
Leave that as part of your listof prepared questions and help
someone walk you through that.
So when you're taking notes atthose doctor's office, remember
I said, bring in your questionsand then have a paper to take
notes on.
One of the things that hashelped me so much is at the end
(15:22):
of visits, and when I'veforgotten to do this I've
regretted it.
At the end of visits I reviewwith the doctor Okay, so the
plan is the following, and Irepeat the plan.
So that way, if I'm getting itwrong, the doctor hears me get
it wrong and can make acorrection.
I review what I as a parenthave to do, what they as a
(15:42):
doctor have to do, what thetimeline is on that.
So is this going to happen injust a few hours?
Is this going to happen by nextweek?
Is this a two-month waitinglist?
Those kinds of things.
And then I also love to say hey, can I get a paper copy of
those prescriptions as well?
So for an example, they sent ina prescription for my son to
(16:03):
get physical therapy and about amonth went by and I finally
called and they were like, ohyeah, well, that's been sitting
with DDD.
And when I got the paper copy Icould do a lot of searching
myself.
So leave with paper copies ifpossible.
If you feel, or when you feelthat a doctor is kind of talking
around you or dismissing youwhich I've discussed a little
(16:23):
bit, I've had that feeling givethem some credit and
appreciation.
Then what I've found kind ofmakes them trip a little bit on
their 90% talk.
I've got this.
This is what I always say anddo for everyone who has this
case is I tell them some newfact about my child's medical
issues, even if it's not related.
(16:45):
So when I tell them somethingnew, oh, you know what we've
experienced da, da, da, da da.
Sometimes they go well, okay,but that's not really related.
I know it's not, but I wantedyou to know that this might be
part of his whole case.
So sometimes it just kind ofslows down the roll of the ball
from the doctor who's ready towalk out the room.
A little bit of ramble can helpat times.
(17:06):
Consider bringing another adultor non-family with you to
listen and take notes.
If it's going to be one ofthose emotionally charging
visits.
I know that really helps,especially if children have a
degenerative diseases or if ourchild has cancer those kind of
diagnoses which can rack ouremotions as we listen.
(17:29):
So so consider bringing someoneelse with you and I say a
non-family member, because it'llbe someone who's a little less
emotionally tied and probablywill pick up on some things and
they can take better notes.
Make sure you check out thosemedical records.
So after you take all yournotes and you confirm them, then
(17:53):
the other thing you can do isyou can get in contact with the
doctor afterwards to make sureyou have that contact
information but then pull therecords from the appointment
About a week usually takes themtwo or three days to get the
records finalized.
So within a week after theappointment you can either log
onto the parent portal if yourdoctor or hospital has that, or
just ask for the records to besent to you and read through
(18:16):
them and make sure your notesand those records still line up.
I discovered a lot ofinteresting things by reading
doctor's notes that I was likewell, that's not even something
we discussed in the appointment.
Here it is.
So that's something to thinkabout too.
If you have to ask for anotherdoctor or another opinion this
is what's really important Don'tdo so right at that visit or as
(18:38):
you're exiting.
That it puts the staff at thatdoctor's office kind of in a bad
position.
So what you want to do is, ifyou do have to look for another
opinion or you do want to talkto a different doctor, first
thing I would suggest that youdo is finish the appointment
(18:59):
you're on with a lot of thankyou and appreciation.
So that way, if they call thisdoctor and say, hey, I've got
someone you know, such and suchfamily, coming to me.
This doctor has great things tosay about you, then leave.
Then you might need to make aphone call later.
Maybe it's your pediatrician,hey, I need a different referral
.
Or maybe it's to that office.
I would like to see a differentdoctor in the office.
(19:21):
I don't think we meshed well,or I don't think that he had the
expertise on my child'sdisorder, et cetera.
But I would say, make sure youleave the office before doing
that.
It just kind of keeps things atthat more peaceful level.
All right, my last tip and tripfor you today is I love Google
Docs.
(19:42):
I love Google Docs because I canaccess it from my phone and I
can access it at home and that'swhere I keep a running record
of medical appointments andthings.
So on this date we saw thisdoctor and then there's a link
to the different Google doc withall the notes from that
appointment and you can evenscan handwritten notes and load
them in.
So I recommend that that way,if you're seeing a doctor and
(20:03):
something triggers oh wait, butlast year I saw a doctor and
they mentioned that samecondition or that same
possibility let me go look upthose notes real quick.
You have them right there atyour hand.
So that's my last tip for you.
Google Docs can be a reallygreat friend, or I'm sure
there's other apps out therethat are similar.
(20:24):
That's just the one that I use.
So, again, if you've started tonotice that not all doctors are
right for you and your child,here are some things that I have
done and I hope that you findthem helpful today Because, as
we know, this is special needsparenting and this is love.
Thank you so much for joiningme today and I look forward to
talking to you soon.
Speaker 1 (20:45):
This program is made possible by friends and partners
of the Special Parent Podcast.
For more information and tojoin our mailing list, visit
specialparentorg.
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