Noah's Dad

[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.)

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?