Finding the Right Medical Team: Advocating for Your Special Needs Child and Strengthening Doctor Relationships | Ep10

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.

Chapters

• 0:00 Building Your Child's Medical Team
• 4:10 Navigating Specialist Relationships for Child's Healthcare
• 11:59 Effective Communication With Doctors
• 20:19 Finding Support in Special Needs Parenting

Transcript

Speaker 1: 0:00

This program is made possible by friends and partners of the Special Parent Podcast.

Speaker 2: 0:05

I believe that empowering parents of special needs children is like giving them the superpower of unconditional love and unbreakable determination. They are not just parents, they are true champions, shaping a bright future for their incredible children. I'm Dr Deanna Iverson and I'm glad you're here. Hello and welcome to the Special Parent Podcast with Dr Deanna Iverson.

Speaker 2: 0:35

Have you begun to notice that not all the doctors that you encounter are right for your child? I can understand that experience. One of the stories we have was we had a pediatrician for our son when he was young and she seemed to not catch on to the fact that there were kind of a lot of little issues that just kept coming up. And when I would bring her to stuff, she would a lot of times just say it's okay, everyone develops at their own pace, and she's right, everyone does develop at their own pace, and she's right, everyone does develop at their own pace. But I noticed right away that this doctor wasn't really the right doctor for my child or even for me, and so what I learned from that experience was that it's really important to create a team, a team of doctors, specialists, but that team even includes the schedulers and the nurses, et cetera, because that whole group of people. They're all going to be together to work for you and your child. So I want to talk to you a little bit about how that worked for me, how I developed that team, because the team of doctors that I work with I consider to be one of my personal relationships. Not that we contact each other outside of doctor visits, of course not. But I have a relationship with those individuals because I make sure to speak into them and I make it a point that they know that we are a team on this. We are a team working for my child.

Speaker 2: 2:02

So how do we do this? We have to find trusted doctors, we have to make sure to get second opinions and, when necessary, we sometimes have to ask for a different doctor. So, for example, when I did change pediatricians, I took time to actually go out and interview pediatricians and it was the third one I interviewed. So it would have been after our initial pediatrician, three interviews later, that I found our current pediatrician, who we've been with now for 13 plus years and has been instrumental in getting my son diagnosed with lots of different conditions, who has been instrumental with getting us in with some specialists, who has been incredibly communicative. But it took some interviewing and it took some time to find that person. So I warn you off the bat, this is a process a little bit. Sometimes you don't get the chance to go about an interview. For example, for my son with a GI doctor. We were going through Phoenix Children's Hospital because that's the best hospital in the area where we're at, and I only had their list of GI doctors to choose between unless I wanted to switch hospitals, but I was still able to find someone good in there.

Speaker 2: 3:18

So first thing to start off with is your pediatrician is really important. This is your point of contact, one of the most important people on your team, because your pediatrician is really important. This is your point of contact, one of the most important people on your team, because your pediatrician, especially due to insurance needs, is going to be the one to refer out, is going to be the one sometimes who's writing letters. That letter could go to the school. That letter could be going to your insurance company. That letter could be going to a specialist justifying the need to see that specialist, et cetera. So having a pediatrician that you can trust, having a pediatrician that also trusts you as a parent, that's really important. So take time to interview those and if you don't feel you're right with one before you're ready to actually move, find the next one that you want to move on to, so that way you don't feel like you're scrambling if something important happens.

Speaker 2: 4:10

Specialists are another area. So unless they're a specialist in your child's disability or your child's unique and rare disease, they're a specialist in their area. So, for example, gi is a specialist in the gastrointestinal system and they're really great for 90% of the people that have those problems. But if your child has a rare disorder or your child has something specific related to their disability that may be linked to this GI issue, the GI doctor needs to sometimes be brought in as a team member and sometimes I think we all know this we don't want to say it out loud all the times because we love our doctors, but they can sometimes get a little bit of a big head. So give them credit and appreciation for their specialty. But remember you're the expert on your child and they're the expert in their field. So we have to work together to get what is best for our children in this area. So when you're working with your specialists, definitely give them that appreciation and that credit and that respect for their knowledge base in that area and then bring in your knowledge base on your child and hopefully, as a team, you can work things together. Remember, not everyone's going to fit in your knowledge base on your child and hopefully, as a team, you can work things together. Remember, not everyone's going to fit in your village of teamwork.

Speaker 2: 5:34

So when you're doing that, especially when you're dealing with rare disorders, when you're working with doctors, take time to just talk to them, kind of on that personal level. Some doctors are not really good at getting on that personal level. For example, we saw an orthopedic surgeon for our son and he said it was a really quick appointment. There were three trainees in the room, med students or students that had just, you know, had passed certain phases, etc. But they weren't exactly the doctor 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 says what it is.

Speaker 2: 6:12

And I said well, my son has this rare genetic disorder and I think that might be related to this. Nope, seen this in lots of kids. Here's what you need to do. Let me know if you have any questions. And that was it, and I was stunned because this isn't my first rodeo with doctors. And yet I was not as prepared for that one as I thought I needed to be, and afterward hindsight I was like holy cow. I didn't have my questions prepared, I wasn't ready to go, I really wasn't a good team member in that one, and neither was the orthopedic surgeon.

Speaker 2: 6:46

So a week later we had an appointment with our geneticist and I brought this up. She pulls up the paper, and then she pulls up the paper being the doctor's notes, and then she pulls up the x-ray and she goes she's not the orthopedic surgeon, she's a geneticist. She goes hmm, no, because your son's rare genetic disorder affects bone. We need to look at this differently. So it's okay to get a second opinion, it's okay to mention something that might appear to be a specialty in one area to other doctors too, because your child's unique case might be something that a different doctor picks up on, and so she referred us to a different specialist and, lo and behold, it's getting treated in a very different way. So, while we all may be I love this 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 same equipment. But this can be a good thing.

Speaker 2: 7:43

So, remember, being successful means working together with that team of doctors, and I'm going to have some resources on my webpage, the specialparentorg, and if you go to that, you will see that there are resources that talk a little bit about doctors and how to find them, et cetera. So let's talk a little bit about some tips and tricks. Let each doctor know that you want to be on a team with them. Let them know that you are just interested in finding the best care for your child and that you completely appreciate and respect their expertise. You need their knowledge and expertise. You also need them to respect your knowledge and expertise on your child, your daily experiences with your child, because those daily experiences a lot of times can tell you way more than any 20-minute doctor visit can get down to. Let's admit it, mamas and dads out there, we don't always remember those details until we're driving away from the doctor's office and go oh, I forgot to tell them about. So your daily experiences are important.

Speaker 2: 8:49

Also, contact information. Once you're established with a doctor, make sure you have a way to contact them back and forth, because sometimes it is that drive away or that next day or that tantrum meltdown that you think, oh my gosh, I think that was related to a foodie ate. Maybe we do need to test for a food allergy, that you can just send a quick note. You don't have to wait for the next six month visit down the road. You can send a quick note. So make sure you get that contact information, for how do you communicate with the doctor between doctor visits?

Speaker 2: 9:22

Another thing, especially with new doctors don't trust all doctors to read your child's medical history. I know we would love it if that was the case, but I was in a situation where my son was having to go under anesthesia for a minor procedure and the anesthesiologist came in and when she asked me to kind of explain why I was there so I think they sometimes just check and make sure that we all know what's happening in the room I said my son has a rare genetic disorder, it's called KBG syndrome. And she goes what does that stand for? And I said oh, it's not an acronym, that's the name of the syndrome. And she goes no, I haven't heard of that one. And she gets out her phone and starts looking it up and I went. It's KBG syndrome, you'll find it, 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 about that. So don't trust that every doctor has read your child's medical history or understands or knows a little bit about their disability.

Speaker 2: 10:25

What I say is a great tip is prepare an elevator speech. I don't know if you've heard of these before, but it's kind of like a quick introduction to your child before. But it's kind of like a quick introduction to your child. When you meet with a doctor, especially for the first time. You can summarize the condition or the needs for your child in a quick one to two minutes, maybe even less than that 30 seconds to a minute. Now I know that might seem impossible if we have some really strong medical cases out there. So you really, when you're first meeting with them, you kind of want to stick to some major topics and then seem impossible if we have some really strong medical cases out there. So you really, when you're first meeting with them, you kind of want to stick to some major topics and then of course you can refine that as you get to know the doctor better. But like back with that orthopedic surgeon. I was not prepared with my elevator speech and that appointment just left us with nothing. Basically, it didn't help my son at all. So I would say prepare a quick elevator speech to introduce your child to the doctor. In that elevator speech, stick to what's relevant medically but also make sure to include at least one amazing thing about your kid that doctor should see your child not as a textbook case but as a child that has some unique and wonderful properties. But then practice that elevator speech before you walk into each new doctor's appointment and then modify it based on the doctor you're seeing. So these are like bullet points on specific medical issues that can relate to your child's medical care. I feel I would have been better prepared if I had my elevator speech practiced for that one time.

Speaker 2: 11:59

Be positive and pleasant when you're working with doctors. I know that's not easy. I've lost it sometime on a couple of doctors and it's not my finest moments and I can promise you it didn't get me anywhere. Definitely didn't gain anything with that appointment or that doctor. So if we have to take a deep breath and check ourself out for a minute and come back, maybe we need to do that. But there's a reason. That saying is you get more bees with honey. Because really what you're trying to do here is you're trying to establish that relationship. You're trying to establish that connection with not only the doctor but the physician's staff so that way you can contact them and have that trusted communication. So be positive and pleasant, especially when on the phone.

Speaker 2: 12:51

Bring questions with you written down Again. Another time I wasn't prepared and thought of something later but bring questions written down. Have a piece of paper to write more 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 to help you figure out what questions do I need to ask, what are some things I should be inquiring about. But remember, google is not going to diagnose your child, but it will give you a place to ask questions. So I'll give you an example. My son had some symptoms and I had heard about something called tethered cord. So I was like, well, what is this? So I researched it. Lo and behold, a bunch of the symptoms fit my son. So I contacted the pediatrician. I said I think we might need a referral. I heard about this thing called tethered cord and when I looked up what it was, my son has a lot of these symptoms. What do you think? So, again, I'm giving that expertise, I'm giving that. Hey, I appreciate you as part of my team and I'm coming to you because I think there might be something we should discuss. Thankfully for my son, she jumped on it.

Speaker 2: 14:08

If something when you're Googling makes you afraid, check yourself. I had to do that. I was Googling some things to try to figure out what questions to ask with a new doctor, to make sure that I covered it, to make sure, hey, is there something I didn't think of? And something popped up that scared me because it could have been and I had a little bit of a meltdown because it could have been and I had a little bit of a meltdown. So if that happens to you, don't take that to your doctor. Take that to your friend or your family member, your trusted individual, and let them help you calm down so that you can re-engage that thinking part not that emotional part of your brain where you can be like, okay, I can do this, and then you can prepare appropriate questions. And again, most of the time we usually find out. It's not the scariest thing, but sometimes we do and sometimes it's good to process that before we walk into that doctor's appointment. So if something makes you nervous, don't fire off that email right away, don't make that phone call right away. Leave that as part of your list of prepared questions and help someone walk you through that. So when you're taking notes at those doctor's office, remember I said, bring in your questions and then have a paper to take notes on.

Speaker 2: 15:17

One of the things that has helped me so much is at the end of visits, and when I've forgotten to do this I've regretted it. At the end of visits I review with the doctor Okay, so the plan is the following, and I repeat the plan. So that way, if I'm getting it wrong, the doctor hears me get it wrong and can make a correction. I review what I as a parent have to do, what they as a doctor have to do, what the timeline is on that. So is this going to happen in just a few hours? Is this going to happen by next week? Is this a two-month waiting list? 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 in a prescription for my son to get physical therapy and about a month went by and I finally called and they were like, oh yeah, well, that's been sitting with DDD. And when I got the paper copy I could do a lot of searching myself. So leave with paper copies if possible.

Speaker 2: 16:16

If you feel, or when you feel that a doctor is kind of talking around you or dismissing you which I've discussed a little bit, I've had that feeling give them some credit and appreciation. Then what I've found kind of makes them trip a little bit on their 90% talk. I've got this. This is what I always say and do for everyone who has this case is I tell them some new fact about my child's medical issues, even if it's not related. So when I tell them something new, 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 wanted you to know that this might be part of his whole case. So sometimes it just kind of slows down the roll of the ball from the doctor who's ready to walk out the room.

Speaker 2: 17:04

A little bit of ramble can help at times. Consider bringing another adult or non-family with you to listen and take notes. If it's going to be one of those emotionally charging visits. I know that really helps, especially if children have a degenerative diseases or if our child has cancer those kind of diagnoses which can rack our emotions as we listen. So so consider bringing someone else with you and I say a non-family member, because it'll be someone who's a little less emotionally tied and probably will pick up on some things and they can take better notes. Make sure you check out those medical records. So after you take all your notes and you confirm them, then the other thing you can do is you can get in contact with the doctor afterwards to make sure you have that contact information but then pull the records from the appointment About a week usually takes them two or three days to get the records finalized. So within a week after the appointment you can either log onto the parent portal if your doctor or hospital has that, or just ask for the records to be sent to you and read through them and make sure your notes and those records still line up. I discovered a lot of interesting things by reading doctor's notes that I was like well, that's not even something we discussed in the appointment. Here it is. So that's something to think about too.

Speaker 2: 18:30

If you have to ask for another doctor or another opinion this is what's really important Don't do so right at that visit or as you're exiting. That it puts the staff at that doctor's office kind of in a bad position. So what you want to do is, if you do have to look for another opinion or you do want to talk to a different doctor, first thing I would suggest that you do is finish the appointment you're on with a lot of thank you and appreciation. So that way, if they call this doctor and say, hey, I've got someone you know, such and such family, coming to me. This doctor has great things to say about you, then leave. Then you might need to make a phone 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 different doctor in the office. I don't think we meshed well, or I don't think that he had the expertise on my child's disorder, et cetera. But I would say, make sure you leave the office before doing that. It just kind of keeps things at that more peaceful level.

Speaker 2: 19:37

All right, my last tip and trip for you today is I love Google Docs.

Speaker 2: 19:42

I love Google Docs because I can access it from my phone and I can access it at home and that's where I keep a running record of medical appointments and things.

Speaker 2: 19:51

So on this date we saw this doctor and then there's a link to the different Google doc with all the notes from that appointment and you can even scan handwritten notes and load them in. So I recommend that that way, if you're seeing a doctor and something triggers oh wait, but last year I saw a doctor and they mentioned that same condition or that same possibility let me go look up those notes real quick. You have them right there at your hand. So that's my last tip for you. Google Docs can be a really great friend, or I'm sure there's other apps out there that are similar. That's just the one that I use. So, again, if you've started to notice that not all doctors are right for you and your child, here are some things that I have done and I hope that you find them helpful today Because, as we know, this is special needs parenting and this is love. Thank you so much for joining me 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 to join our mailing list, visit specialparentorg.