How to Find the Right Doctor

Lamp with her favorite doctor in Texas

When Lamp was a baby we were sent to many doctors appointments. Yes, sent. As in, they told us where to go and who to see because we had no idea. Orthopedic surgeons–some who specialized in upper limbs and some who specialized in lower limbs–a geneticist, gastrointestinal or GI docs, and also physical and occupational therapists. Since we had no idea who to see or even why in some cases, the direction of the hospital (meaning a team of doctors) was a huge relief. I didn’t think about any of these appointments before she was born and it was nice to have hand-holding in those early months.

The orthopedic surgeon we saw in her first year seemed genuinely interested in Lamp from a medical standpoint–he and his colleagues had told us months before that they had never seen anyone like her–and my memories are of him circling her curiously, spitting off medical terminology and when I asked for clarification he’d say, “Oh that’s just a fancy way of saying…” in a condescending tone. I also quickly learned that when you have a baby like Lamp you don’t ever see a doctor. You see a team of doctors, residents, and nurses who all squish into the room anxious to see your sweet little anomaly.

We eventually moved to Texas while my husband served in the Air Force and the hand-holding to a certain degree stopped. (In another sense it continued, but that’s neither here nor there.) And so I made an appointment with the military orthopedic surgeon. I sat Lamp on his table and he just stared and sorta gawked. He was asking me all the questions and it was pretty clear to both of us that he was not the right doctor for Lamp. I felt lost. She wasn’t sick and didn’t need immediate help, but at the same time we needed direction and projection in her care.

I don’t even remember how, but we got a referral to see a certain pediatric orthopedic surgeon out of network and everyone told us how amazing she was. Even an insurance woman I spoke to over the phone gushed about this doctor. I took Lamp in with high hopes and in minutes they were dashed. “I can’t help you here.” She said flatly. “You need to go to Scottish Rite in Dallas.” While her initial response was crushing at the time, she turned out to be right.

When we finally made our way north to Dallas for our first big appointment I don’t think I’ll ever forget walking to the large waiting room and suddenly seeing all these kids with missing limbs, prosthetics and obvious differences thinking, “OUR PEOPLE! WE FOUND OUR PEOPLE!” Never before had I seen any kids like Lamp in a waiting room–lots of casts and broken bones, but never any limb differences. And sure enough the Doctor turned out to be the RIGHT doctor for Lamp, at one point off-handedly saying, “Oh I’ve seen hundreds of kids like her…”

Up until that point I wouldn’t have known that there are specialists within specialists. Yes he is a pediatric orthopedic surgeon, but he was also a pediatric orthopedic surgeon who saw mostly kids with limb differences. We got really lucky in finding our way to him.

A few weeks ago I asked my followers on Instagram if they could share their experiences in finding the RIGHT doctor for themselves or for their kiddos. For some people this is about finding that one doctor who knows about a rare condition, for others it’s about finding that one doctor who will actually listen to you. Either way, hopefully these tips can provide some direction if you are in a search of the right doctor and provide some validation and support should you be feeling like your current doctor isn’t the right fit for you. (note: I primarily intended this post to be about finding specialists for people with rare conditions–this is not about finding a general family doctor or a good pediatrician. However, some of this advice may apply there as well. Lastly, of course none of us are doctors! This is not meant to take the place of sound medical advice, but just a collection of individuals sharing their experiences and offering their perspective.)

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My name is Lauren, and I live in Colorado with my husband and three boys. Our youngest son Oliver is 18 months and has achondroplasia. We received his diagnosis when I was 39 weeks pregnant, and at the time they were not sure if it would be compatible with life. Before the day we received his diagnosis, I had never heard of a “skeletal dysplasia” in my life. I wasn’t even really sure exactly what dwarfism meant or looked like. We also had no idea that there are less than a dozen Children’s hospitals in the entire country who have a skeletal dysplasia clinic, full of specialists extremely familiar with dwarfism.

We are lucky to have an incredible network though Little People of America (LPA) who are not only extremely active with raising awareness and advocacy, but also provide incredible medical support and knowledge. We are also fortunate to happen to live an hour away from incredible care specific to dwarfism, and not a day goes by where I am not grateful for this. In the past 18 months, I’ve met countless new friends who have a kiddo with the same diagnosis, but struggle to access care. In the LPA community, it’s pretty easy to find out exactly where the best specialists are located. Sadly, having insurance to cover the care, or financial funds to cover the cost of a far away trip is a big hurdle. Many people simply don’t live in a state where specialists are located, and are denied coverage. (A great friend lives in PA, ten miles from the border of Delaware, home to Dupont, which is considered to be a top 3 hospital for skeletal dysplasia. Their insurance will not pay for care out of state. Though there is a fantastic Children’s hospital in Philadelphia, they do not have specialists who regularly deal with dwarfism.) This is a very common story in the dwarfism community, and I wonder if it is the same for other families who are juggling special needs care? Is there a support system for all other types of rare conditions, like LPA? We would be really struggling without the help of the LPA community!

—Lauren

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Guidance from the wrong doctor can be damaging both emotionally and physically. My younger son is 12 years old and has a rare, progressive neuromuscular condition called Friedreich’s Ataxia (FA). Specialists with all the “right” credentials advised us to put him on bed rest and to limit his physical activity because heart failure was imminent. There is no treatment or cure for my son’s condition, so it was as if we were being told to give up and wait for the end.

When it comes to my children’s health, I have learned to trust my gut and question authority. While that particular neurologist may be respected in his field, he had never treated a child with my son’s condition.

I kept searching and digging to find more and learn more. There are an estimated 5,000 people living in the United States with Friedreich’s Ataxia. Who are their doctors? What do they do to stay healthy, comfortable, and live the highest quality life possible?

Eventually I found an online support group for parents whose children have FA. I was bold and direct and asked questions and starting compiling data points of what was working for other families. I also started reviewing medical research. Which hospitals are actively engaged in research related to FA? Are there funding sources for research and, if so, which hospitals or universities are receiving those grants?

Ultimately I learned of a program at the Children’s Hospital of Philadelphia that focuses exclusively on FA. I submitted a request for information and, this is still unbelievable to me, I received a call back from the head of neurology for that department. He explained the program and what services are offered, but also asked how we were doing. He asked how much my son understood about his condition so that he could be sensitive when talking to him. He asked if I had questions, big or small. He gave me his cell phone number and told me to call at any time.

With Cincinnati as our current home base, we travel to Philadelphia twice a year for my son’s neurology and cardiology appointments. It is so worth the time, energy, and money needed to get there. I would do it monthly if necessary. I have learned so much about FA and how my son’s body works from our time with the right doctors. The bed rest directive I previously mention…the FA specialist said ABSOLUTELY NOT! Let the kid be a kid. Let him be as active as he feels comfortable. We will continually monitor his heart, but his doctors strongly encourage keeping him engaged and active for as long as possible.

I have also been reminded to not stress over things out of my control. For example, with food and exercise, the right doctors have told me the best food for my child is the kind he will eat and the best exercise is the kind he will do. So logical and so kind! Also, this approach fits so well with our overall philosophy as a family. We want our kids to be happy and healthy, however that is individually defined for each of them.

–Courtney

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As a physical therapist the way I have always helped patients in their search for specialists is 1) looking through the latest research (within the last two year) of whatever issue they are having and finding doctors who have either lead studies or participated in the research. 2) cross checking they’re a fellow (having a specialty in that area) 3) making sure they’re an active doctor who also sees patients. From there I would call and see if they would be willing to talk with you for 5-10 minutes on the phone regarding questions you have 1) inform them you are not seeking to be their patient but rather trying to arm yourself with as much information as possible regarding the medical issue and two ask them if they can recommend questions to make sure to ask a doctors in my area who accepts my insurance. This has been successful 100% of the time in arming the patient with confidence to them interview local drs and find ones who then also fit their personality. It’s extra work but well worth it.

–Natalie, a physical therapist from California

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My daughter just turned two and she has a PIK3CA-Related Overgrowth Syndrome. Pretty much nobody has ever heard of it (doctors included). I think there are only about 300 documented cases of it, and her genetic variation is even less common. Plus, her condition has also caused hemimegalencephaly and polymicrogyria, which are already rare, but the combination of all her diagnoses is super uncommon. So finding doctors that are helpful is super difficult. She sees neurology, neurosurgery, orthopedics, PM&R, ophthalmology, genetics, dermatology, and a few others.

For us it’s been a combination of luck and hard work. We lived in Chicago previously while my husband was in grad school, and we just happened to see a geneticist and a dermatologist who were familiar with her condition. Our neurologist just happened to run into a neurosurgeon in the hall who agreed to take on her case, and he ended up being a perfect fit. But there’s been a lot of fight too. Her neurologist was a fellow so he didn’t have a ton of experience. We loved him, but we really needed someone with more experience. We had to fight to convince him that she was having seizures, that she would need surgery sooner rather than later, etc. Once she saw a more experience epileptologist, she was immediately presented as a candidate for surgery.

One of the MOST helpful resources we have is other parents whose children have the same conditions. I’m part of about 10 different Facebook groups and people are always making suggestions for hospitals and doctors. So we’re now in Houston, where we at least know that some of the doctors have seen kids with the same conditions as her, which is a big start. It’s still a fight getting to see some of these doctors, but it’s worth it. A doctor can make or break your experience. Emerson is only two, but I’ve learned already that if I don’t think the doctor is a good fit, I’ll find a new one. And even if you like a doctor, don’t be afraid to get a second opinion from another doctor! They’re human. They have different experiences that influence their decisions and how they approach certain things. Any doctor that has been practicing for long enough (and is humble enough to admit it) will know they need to listen to parents because oftentimes they are right.

–Lauren

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My advice is to do research on your own when it comes to finding the right doctor. Don’t go just go by a referral or what other people say, or even what’s close by. Do your research.

To give a very basic background story, I spent 4 years in the US Army and went through a deployment. Not as bad as some, but still a lot of mental health issues come with this.

Around age 21, I started having some very serious depression. At first, my family doctor managed it the best he could with depression medication and the occasional anxiety medications. But things got worse, and around age 25, he decided it was best to refer me to a psychiatrist. Going to her was fine, but she had absolutely no experience dealing with veterans. A lot of times, I’d share my symptoms with her (very common symptoms of PTSD, mainly nightmares) and she didn’t seem to know what to make of this. She’d put me on anxiety meds and send me out the door. She never gave me an official diagnosis. She never offered other strategies in dealing with my symptoms. Just take these meds and come back in a few months.

Fast forward to now, 2 years later. I moved about 6 months ago and thought maybe it was worth looking into a new psychiatrist. I was having more issues with PTSD, so I really needed the help. Since it was me finding a provider, rather than my doctor giving a referral, I did some research on my own. I found a lady who did all of her residency working at the VA with veterans.

Let me tell you, Miggy, it’s like night and day comparing her and my old psychiatrist. She’s up to date on all the current PTSD research and treatments. She’s completely changed what medications I’m taking and I’m feeling better than ever. Plus, I feel like I can honestly discuss my symptoms with her without feeling like she’s judging me or like I’m crazy or abnormal. The right provider is worth a longer drive. Advocate for yourself and if you feel like a provider you’re seeing isn’t right, move on.

–Anon

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For our daughter, our doctors had never seen a child like her before, but we’d already flown from China (where we were living at the time) to Utah on the advice of our China pediatrician, so we felt pretty stuck. Then my husband started doing research in news articles around the world to find other kids like her. We found a boy in England and his doctors were quoted in the news article, so we looked them up and called them. They then linked us to research that was being done in the US. We read the research article, got the doctors names and again just cold called them. That then sent us on a plane ride to meet a team of doctors in Boston. We did a bunch of test and meeting over a weekend in Boston. One of their residents had just finished and got a job in SLC at Primary Children’s so we followed him back to Utah. He still consults with the team in Boston on our daughter’s case. One of the surgeons from Boston sat in on her last surgery last fall. For us the key was finding the right research and then making a cold call.

–Rian