10 Qualities To Look For In A Pediatrician For Your Child With Down Syndrome

[This post is a part of the “New Parent Guide To Down Syndrome” blog series. Be sure to check out the other posts in that series.)

choosing best pediatrician for child down syndrome

Wearing a red nose isn’t on the list…but it’s a nice quality! 🙂

You may already have a pediatrician and hopefully they are the perfect fit for your family. However people sometimes ask “do I  have to go to a special pediatrician for my baby with Down syndrome” and while the answer is ‘”no” there are some some qualities that are very important when choosing the best pediatrician for your child (special-needs or no special needs.)

I’ve also included some questions for you to ask your pediatrician under each quality to help you in your journey of choosing the best doctor for your child.

1. They MUST Listen To You.

You know your child best and if you think something is wrong there is a good chance there is. If you have a doctor that blows you off, this is a red flag. You want a pediatrician that listens to your concern and is willing to either spend the time necessary to help you understand why they believe testing isn’t necessary, or is willing to do the proper testing to rules your concern out. This means that you have to listen as well and if you get reassurance and education you have to let go of your concern for the time being.

The biggest concerns are the ones that keep you up at night worrying. I will often ask parents if we don’t do XYZ test will you be able to sleep at night. If they say no, there is a high likelihood that I will do more testing. I call it treating parents 🙂  If it helps you sleep and feel better about your child, then let’s do it. Can I guarantee that your pediatrician will do that…no, but I urge you to let your pediatricians know what you are really worried about.

Let me use a common example (and one that we personally deal with) A lot of parents of children with Down syndrome have a fear of cancer. Our children will likely deal with congestion and fevers and typical stuff, but when it starts to happen frequently the cancer idea can often sprout in your head. Make sure to ask your pediatrician as this question can easily be answered and you can easily be reassured. Therefore you can sleep at night 🙂

If you are concerned about your child having cancer, here is one of the best thing you can ask your child’s pediatrician:

If I am concerned about something how do we best address those concerns, and if lab work or imaging is the only way to completely rule something out will you be willing to do that?

2. Comfortable Conversations

You have to feel comfortable talking with them and asking your questions because you will certainly have a few. Maybe even hundreds. If you are intimidated or fearful of asking questions you will most likely leave every visit a little dissatisfied and wishing you would have just asked that question you had in the back of your mind. One of the main purposes of a pediatrician is to answer parents’ questions, and if you don’t feel comfortable asking your pediatrician questions, you’re missing out. Even I have ran into a few doctors where I don’t feel comfortable asking all of my questions. I will also be the first one to volunteer that just as in the general population there are some not so nice doctors or ones with a little different personality.

You’ll have a gut feeling about this after your first visit. Trust your instincts and move on if you need to.

3. Time For Your Child

They must have time to spend with you during your visits. Five minutes will not be enough. In today’s busy private practice world time is becoming limited if a physician wants to keep their practice afloat. If they are busy and cannot take extra time for you, things may be missed or you will feel unsatisfied. They are the center of your care and will be coordinating various specialists. It will take time to look at the whole picture with your pediatrician.

Make sure they are willing to take extra time with you if necessary. I know the well child visits for Noah take about 30-45 minutes, and our pediatrician is patient with us and makes sure all of our care is in place and questions are answered.

To make the most of the time given you, make sure to come with your questions written down so you don’t forget. Here are a few important questions to ask your pediatrician:

  1. How many kids do you see in day?
  2. If I have a lot of questions or there are several issues that we need to talk about how do I schedule those appointments?
  3. Can I ask for a longer visit if necessary? (In my resident clinic we had certain patients that we had documented in their chart that they needed longer appointment times.)

4. Knowledge

They need to have some knowledge of Down syndrome as well as be willing to learn and research to expand that knowledge. They should adhere to the American Academy of Pediatrics Health Guidelines for Children with Down Syndrome. Below you will find a copy of these guidelines, and I suggest printing them and bringing them with you on your first visit.

They should also be willing to learn new things and research the questions that you ask. There is exciting research being done by major universities for cognitive issues with Down syndrome and it is helpful if your doctor is helping your sort through that.  You may have to take the first step by asking the question, but that should be enough to spark their interest.

If you have plans to use alternative medicine it would be a good idea to see how they feel about that and if they will answer questions for you. There are several supplements and such that you may decide to use. You will want a doctor that supports you, but you also wants one that tells you the truth. You want one willing to help you sort through information and use what is proven to be beneficial. I encourage you to listen to your doctor if they don’t think an alternative medicine would be beneficial and possibly even harmful. There are good alternative therapies, but there are also a lot of scams out there that are meant to take advantage of parents who have children with special needs. Trust your doctor over the internet.

Here are some questions to ask your pediatrician to help you get an idea of their knowledge about Down syndrome.

  1. What guidelines do you use to manage a child with Down syndrome?
  2. Do you have other patients with Down syndrome?
  3. How do you learn new information?
  4. Can I bring you articles or information that I find?
  5. How do you feel about alternative medicine or using supplementation

5. Easy to Contact

Communication is becoming harder in today’s private practice world. During the day you are usually able to talk to a person who will get your question to the doctor. At night there are various systems. One is a nurse line where they use a protocol to answer questions to determine what you need to do. Sometimes the doctor is paged and they return your phone call. In our clinic we have a doctor who actually answers the phone himself! It shocks me each time he picks up the phone. Each way is a good way, but it’s good to know before hand about how long you will wait to hear back from your pediatrician when you need to contact them.

You will probably have times when you need orders for things such as labs or therapies and it has to be easy to get this accomplished. You don’t want there to be a delay if it’s too hard to get a hold of your doctor to write orders.

Your child may end up on medications. Getting refills can sometimes be a hassle. Sometimes it’s just a phone call, other times the doctor may need to see the patient in person.

Here are a few questions to ask your pediatrician regarding your ability to contact them when needed.

  1. If I have a question during the day how does that work?
  2. What is your call system like at night?
  3. If I need orders for things such as therapies how do I go about getting those?
  4. If we need refills on medications how do I get this?

6. Encouragement

Your pediatrician must be encouraging. Your life is going to have quite a few appointments and you will need someone to tell you’re doing a great job. It’s a lot of work sometimes taking care of a child with special needs, and getting encouragement from your doctor can turn a dark day into a bright one. I will never forget when I was having a bad day about Noah’s development and I went to see our pediatrician for something else and she could not stop encouraging us for how well we were doing and how awesome Noah was doing. It picked me right up.

You also need someone with a positive outlook for your child. If your pediatrician initially painted a bleak future for your child I would tell you to run like the wind to another pediatrician. You will have a pretty good idea after they deliver your child’s Down syndrome diagnosis on wether or not you want to stick with them.

Here is a great question to ask your pediatrician:

  1. What do you think the future holds for a child with Down syndrome?

7. Pediatricians who are also parents

I never would have said this prior to Noah being born and it’s not a requirement, but I became a 1000 x better pediatrician when I had Noah. Pediatricians with children have a much better understanding of what you are going through, and often give more realistic advice. For example, I may never recommend time outs after I try that method out myself. Those without children tend to hold to the books and research and haven’t actually tried any of it out themselves. I wish I could back and change some of the things I have said to parents now.:)

Here is a simple question to ask your pediatrician:

  1. Do you have any children of your own?

8. Pediatrician Over Family Medicine

I have nothing against my family medicine friends. I was taken care of by a family medicine doctor growing up and I think I turned out pretty good. 🙂 That being said, a pediatrician has been trained by taking care of children for three years during his/her medical residency. In that time we are exposed to all of the specialities of pediatrics including development. I have taken care of children with Down syndrome throughout my training and I am fairly confident in saying that other pediatricians will say the same thing. Compare this to family medicine, they spend a few months of training in pediatrics that usually centers around general pediatrics and newborn care. Now, there can be excellent family doctors out there that know the ins and outs of Down syndrome and will take fantastic care of your child. I just ask you to really question them in the knowledge department.

Here’s a simple question to ask your pediatrician:

  1. Do you feel that your training has prepared you to care for a child with Down syndrome

9. Who Will Actually See My Child

Private practices are involving advanced practitioners more and more. These include physician assistants and nurse practitioners. These qualified individuals are a valuable part of a functioning clinic that allows for all of the above qualities to be found in your pediatrician. How they are used varies in each clinic. There is usually a scope of field that the practitioner is able to work within. Take for example a 2 month well child check for a typical child. They however may not be allowed to see a 2 month well child check for a child with Down syndrome since there is usually a bit more involved.

Usually if there are questions about your child the advanced practitioner has easy access to the doctor to get answers. If these providers are in your clinic and you end up seeing them, that’s perfectly fine, but if you feel that you need to see the doctor that day be sure to speak up.

Here are a few questions to ask your doctor:

  1. Do you use advanced practitioners in your clinic such as physician assistants or nurse practitioners?
  2. What are they allowed to take care of on their own?
  3. Can I request to see the doctor rather than the PA or NP for some visits?
  4. What if I have a question they cannot answer during a visit?

10. Shared Faith

Rick and I trust in God to be the best medical provider for our son. He answers our prayers and has done an excellent job taking care of him. I’m a firm believer that God has provided us with the knowledge for treatments such as medications to take care of our children, and we find great comfort in the interaction of science and faith.

I hope this is never you, but there may be a time in your child’s life when the medical world has provided everything it has to offer your and your child and to them hope is gone. I personally want a doctor who relies on God past that point and knows that miracles are possible and will cling to hope with us.

It takes a pretty brave doctor to pray with their patients. A lot of them will be praying at home, but to pray in a room with the family takes courage as we have trained that it is not acceptable to push our faith on those who are in desperate situations. I have been brave enough to pray with a few on my own, and will always pray for those who ask. If you fess up that you want your faith to be a part of your care I am willing to bet that if your doctor is a believer they will be ecstatic to include this in your care..they were just waiting for you to ask.

Never forget that even when it looks like the odds are against you (and your child) that God likes bad odds. 🙂

Here are a few questions to ask your doctor:

  1. Are you a Christian?
  2. Would you be willing to pray with us?

We hope this list helps you in choosing the best pediatrician for your child born with Down syndrome. What qualities do you look for in a medical provider for your family? What are some of the things that you really like (or dislike) about your child’s pediatrician?

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Comments

  1. Our requirements are fairly simple, as we live in a very small town, with two pediatricians to choose from (as far as I know). We did start with a Family Medicine doctor, but switched upon the confirmed diagnosis of T21.

    Our doctor is rarely in the office, has no bedside manner, does not sit and listen, does not open himself up to questions, does not explain anything (unless asked, and then answers condescendingly), and has no interest in cases that are … well … not interesting. HOWEVER (my first requirement), he can accurately pinpoint a sickness within minutes. After being told for James’s first 5 weeks that he was perfectly healthy (while we struggled to keep him alive, I truly believe), our first appointment with our pediatrician confirmed our fears of a significant VSD, and we were at the Children’s Hospital the very next day. Which brings me to my second requirement: He can get things done quickly. When James needs an appointment with a specialist, our pediatrician can make it happen, and not six months from now.

    I would LOVE to have choices, to interview pediatricians, to shop around. But we are where the Lord put us, and I believe we have the right pediatrician for us. And, sometimes, we catch him on just the right day. He walks in with a cheery, “Hey, Jimbo!” and sits and discusses my questions and concerns. It doesn’t happen often, but it happens enough to assure me that he really loves kids, and he wants the best for my kid, and we can work through the rest.

    • I love your perspective…

      At the end of the day, our children are in God’s hands. I fully, 100%, without a doubt believe that. I also know that God cares about our kids way more than we do. (It’s hard to believe, but it’s true.) He has there best intrest in mind.

      So while it’s easy to get caught up in trying to figure out the best option out of several great ones, I’ve found it’s often best to just sit back, relax, and trust that God knows what He’s doing. 🙂

      By the way, I switched back to the standard commenting system. It was way to hard to get notified of replies when people comment, etc….I think at the end of the day I like this standard one the best. What do you think? (Since your one of the top commenters!) 🙂

  2. By the way, here’s the blog post that describes our first meeting with our pediatrician, as well as our journey to VSD repair.

    • Thanks for sharing this. It’s amazing to think about what you guys were feeling and experiencing almost at the same time we were experiencing many of the same things. (Noah was born in Dec 2010 also.) Boy, if I knew then what I know now…. 🙂

  3. This is a great list! We’ve been with our pediatrician since we moved back here in 2009 and I’ve always liked her; she’s been great with our two older kids. I’ve liked her even more since Daniel was born in March. She’s gone out of her way to call me at home to make sure things were going well, as well as finding us some great resources. Plus, she’s the first to admit that she’s not an expert on Down syndrome, and to put us in touch with people who are so we can work with them as well. She definitely fits all the criteria on this list!

  4. I loved this article and shared it on my FB page this AM. We moved from VA to NY last summer and have yet to find a pediatrician that comes even close to our physician in VA . . . This gives me some ideas to ask when I go for “Meet and Greet” appointments. Thanks for the suggestions!

    • Thanks so much for the kind words, and for sharing. What part of NY did you guys move to? We have friends there who may be able to give you guys some direction in regards to pediatricians. (Not to mention we try to get to NYC at least once a year.) 🙂

  5. We were so blessed with our pediatrician! While she had never cared for a child with Down Syndrome she has always been open minded and when she didn’t know the answers to my questions she was honest and asked for some time to make calls and do some research to find those answers and would personally call me back to go over those answers. Six years later her practice has grown quite a bit but her care for our daughter has remained the same. As I read your blog I can truly say she has treated me as well! LOL did not act like I was crazy when I expressed my cancer fears. I thank GOD for her!

  6. Heather says:

    We would love suggestions of anyone in Utah, we have a family dr, he is awesome, has a child with severe autism, and is amazed by our son, who has MDS, but he knows nothing about DS and I want to make sure nothing is missed

  7. Jessica E. says:

    Thanks for the info. 😀
    Do you have any advice for finding a Pediatrician for a child with Autism?

    • I don’t have a child with autism, so I’m not sure if there are extra considerations to look for in a pediatrician, but I would assume this same list still applies.

      How old are your children?

    • Nicole Fusco says:

      A lot of this list also applies to children with autism, but I think there are a couple of additional issues to look at.
      1) There are a lot of supplemental medicines/therapies that are often used to help children with autism (special diets, behavioral therapy, speech therapy, etc.). It’s important to find out where your doctor stands on these – if (s)he has people to refer you to, is supportive of other methods, will approach you with new ideas.
      2) Because behavior is such a challenging issue in children with autism, you should make sure to find someone on the same page as you when it comes to treatment of these issues. If you don’t want to medicate your child, make sure you find someone who won’t push you. If you’re open to medication, make sure you find someone who will help you explore all the options.

  8. I love this article my son is 12 and I actually fired a pediatrician cause he told me my sons chest pains and explosive diarrhea were asthma and allergies. I was so mad when I left there by the time I got home I had calmed down and called the Docs office and talked to the manager and told them that I have 5 kids who all go to their office and I know when something is wrong with my child and and I wanted a doctor who knew something about kids with ds and would listen to me when I felt something was wrong with my child there are 8 docs at this office she said let me see what I can do with in a couple of hours she called back and had a Doctor who was willing to listen to me so I made another appointment with this new Doc by the time I went to see him he had read my sons whole medical file and had a list of test for him to get done… turns out my son had a mild leak on his aortic artery…..umm yeah not asthma and he also was diagnosed with celiacs disease this of course added 2 new Doctors to our already long list of Docs but at least I know my sons Doc cares about my son and my feelings….Love Doc Josh!!!!!!!!!

  9. Rio Smith says:

    I couldn’t agree with these suggestions more. And #10, if you have several options for a pediatrician, is more important than I thought while pregnant. Having encountered many different types of doctors, for Sabra’s heart and lung issues, I found it far more comforting to hear our pediatrician say, “I’ve done all in my power, so now my family will be praying for her surgery to be a success.” Rather than what another doctor said, “I don’t believe in miracles, but I can’t believe she’s in congestive heart

  10. As a person with numerous disabilities — and former child with them — who began to self-advocate fairly young in her life, I absolutely agree with these points, from the perspective of the patient, not the parent. Being listened to, having things explained, having a physician that is accessible and others are so, so vital both to the relationship and one’s health overall.

    As for 10, we have different beliefs (I am an evidence-based skeptic and secular humanist, more simply known as an atheist); however, I still agree with it, from my own perspective and situation. Except, instead of finding a physician who shares my faith, it was important to find one who shares my lack of faith. I was going through enough already – I didn’t want to have to run into that conflict.

  11. Got to love a good ped. Ours took fantastic care of us through our diagnosis.

  12. Dannielle says:

    I think that this was a helpful blog for many parents.I enjoy reading your blog as it brings back many memories. My amazing daughter Josie was born while my husband and I were both still in our residencies. You are so right about how parenthood makes one a better doctor! I do have to say though that I feel you are selling Family Medicine short! Many of us have just as much experience with special needs children in the outpatient setting not to mention to additional experience we have with the rest of their family member. We also treat adults with special needs and may have more experience in the full life cycle of some syndromes. Many smaller communities do not have a lot of options and Family Medicine physicians have provided compassionate and excellent care for many children and adults with Down syndrome over the years.When these children turn 18 their pediatricians will no longer care for them, Who has been trained in providing care for adults with Down syndrome? I know I was trained in this during my Family Medicine residency. Why not just have your Family doctor care for you your whole life?
    I think that the questions you outlined are all essential questions for parents to ask….but they can be asked of any physician.
    Just my thoughts from 12 years of practice and parenthood! Hopefully still getting better at both.
    Peace and Blessings!

  13. First and for most THANK YOU for all the medical posts!!

    I just read through the “Health Guidelines” and was shocked to find that none of the suggested tests have been done for our now 15 month old. It looks like I will be giving my Dr. a call, 🙁

    Thank you again for using your knowledge to help others.

  14. We interviewed our pediatrician at the end of our pregnancy. (We had prenatal diagnosis of DS or I probably wouldn’t have been so concerned with having someone in place.) I once called expecting to leave a message (on a Saturday morning) and he answered the phone! This is an excellent sign! He actually built a clinic and is open after regular business hours and on weekends. I don’t know how he has a life! He doesn’t have much personality, but he seems to be good at what he does.

    Our cardiologist encourages us about how responsive and smart Spencer is every time we see him! You do give some great pointers. I am glad we already have someone in place that we trust.

  15. Mara Kibler says:

    HI. I’m wondering if anyone following your blog might know of a good pediatrician in the Redlands area of Southern California. We are pregnant with baby # 5 who may possibly have DS. We will not be doing any conclusive testing, but want to be prepared and find out what we need to know in the event God does indeed bless us with a baby with DS. Thank you for all your helpful, encouraging info.

  16. Samantha Isaacs says:

    Hi,

    I had a bad expierence when my son was delivered the 26 May 2012, by the locum paediatrician and thank the lord he wasnt permenant, we were handed over to the best paed in the Western Cape in South Africa, as she has a special intrest in Special needs children and recently had her own baby even though she is older. I would say def the paed has to have knowledge about Down Syndrome and be attentive and able to be the attending paed 90% of the time in hospital, we have a tag team in hospital of his paed and a gastrointestional paed in the same practice due to his Hirschprungs Disease, Lets not even go to his Paed surgeon, he is on e of the best out there and will say that Phillidelphia childrens hospital is very lucky to be getting him there for a year pretty soon. All in all i would like to say that i am so grateful my son has a great team of Drs and specialists that all work together and liase regarding all his issues. I manage the back and forth for his or, physio, speech therapist ect as they are at a government facility.

  17. I enjoyed reading this post. You mentioned supplementation and I was wondering if you have (or currently do) use supplements with Noah. If so, what kind and what were the results?

  18. laura goerke says:

    Nurse Practitioners are trained and educated. There is no reason why a Nurse Practitioner could not care for a person with Down’s Syndrome. We do it all the time where I work.
    There are Pediatric Nurse Practitioners who care for children
    There are Family Nurse Practitioners
    There are Adult Nurse Practitioners
    and Geriatric Nurse Practitioners
    Its important that who ever the practitioner , they should learn about the individual and care for that individual. After all most people born with Down’s Syndrome will go on to live long lives and come into contact with many difference types of providers.

  19. My children have been seeing a pediatric nurse practioner for years now and she is the absolute best. She used to work at my kids’ ped’s office and after meeting her, we never requested to see him again. When the law passed in our state (MD) that allowed nurse practioners to open their own practices, she did. She never told anyone what she was doing out of respect for the doctor but we all found her. She is loved just that much! She meets all of the criteria above so I have no problems taking my son with Ds to her.

  20. Gayle Gottlieb says:

    Our first pediatrician retired when Maria (our daughter with DS) was 2- months-old. We switched to another man in the practice, and he used a lot of phrases such as, “these kids always have___” This caused him to misdiagnose an infected thoracic incision (from heart surgery) as an ear infection! She walked at 16 months, but near her 2nd birthday just stopped using her left leg. I took her in, thinking that she might have had a stroke. He almost laughed at me, even though I explained that we had known several children with Down Syndrome who had had strokes. We finally switched to a newer pediatrician who had seen Maria on rounds after her heart surgery. Her 1st question to us was, “May I hold your baby?” That may sound like a little thing, but it showed me that she thought of MY baby as a baby and not “one of THOSE kids”. We have been with her since, and Maria is now 17.

  21. Great article – where were you 38 years ago??? 🙂 Some great points made here for new parents. I have the opposite problem, trying to find a doctor who is knowledgeable about adults with DS, and the problems that come as they age. Many adults with DS have early onset Alzheimers; I have yet to find a doctor who will take my concerns seriously. I live in a rural area of Wyoming; the nearest clinic specifically for adults with DS is an 8 hour drive from us, and open 2 days a month. The next closest after that is in San Francisco.
    Love Family Practitioners, but wish some of them would specialize a little more!!
    Thanks for all the great information you put out there!!

  22. Rick,
    I really enjoy your blog. I was introduced to it shortly after the birth of our third son who was diagnosed with Down syndrome.
    Thank you for being willing to share your life with the world. I truly feel like the day day Zachariah was born (we actually almost named him Noah)

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