Monday, May 26, 2014


One of my biggest recommendations for new parents and especially for parents of kids with special needs is to find a medical team that you are comfortable working with. At first, for most families, this just means a pediatrician, but that could easily grow to include a dentist, optometrist, and other specialists as your child grows and has different needs. When we were pregnant with Mac, I asked my ob/gyn who she goes to for pediatric care for her kids and followed her recommendation. I've heard of some parents interviewing and researching their first pediatrician, my doctor's recommendation was good enough for us. It has worked out beautifully and we couldn't be happier with her. 

Our medical team grew as Keegan needed to see the pediatric cardiologist in her first year of life and then an Opthamologist just after her first birthday. We have been fortunate enough to have already been under the care of a dentist and an optometrist that can see our kids as well. With all of Johnny's special considerations we are adding on more specialists. He sees our cardiologist and Opthamologist as well, in addition to an ENT, Audiologist, Endocrinologist, and providers at the Down syndrome clinic. His medical needs are time consuming, but we are grateful at how minor they are for the time being. 

This being said, I encourage the following-

First, be comfortable with your doctor's decision making skills. While we can research a lot, we do not have the expertise that our doctors do in seeing situations that arise with our kids and making the best plan to treat those situations. I would also encourage you to tell your doctor that you trust them and appreciate their expertise. This simple statement helps build your provider/patient relationship a lot. We have also found that all the doctors we use err on the side of caution or wait and see if the problem can fix itself. We are appreciative of this hands off approach with non life threatening situations. We always ask questions if we have concerns and have always been treated well by our doctors with one exception. We currently have a doctor right now that we aren't super pleased with, but are waiting for some further information before taking action. Which leads me to-

Second, doctors are very well trained and highly educated members of the service industry. If you do not like your doctor, ask for referrals from friends and find someone that you can work with. Matt and I respect doctors and the hard work they do, but there are times when the fit isn't right with medical providers. In the situation we aren't super pleased with right now, it's a matter of bedside manner and how we were given information about a potential diagnosis. The knowledge of the doctor has never been in question nor has their suggestions for treatment. We will be shopping around for a different specialist as allowed once further information is gathered from a follow up. If you don't agree with your doctor, you are more than entitled to a second opinion, so get one. 

Third, when you have children, special needs or not, you need to be comfortable with your doctor. This is different from the first suggestion and fits more along the physically comfortable part of it. With little kids and specialists, you will be in close proximity to your doctor. Often times, you are holding your kid for exams or procedures. If you aren't comfortable with being close to your doctor, they will have a harder time getting the complete knowledge that they need. Some of our doctors sit knee to knee with us, doctors have had to touch our hands to test certain things for Johnny, doctors have leaned next to us while we held Johnny down, and doctors have done preliminary exams on our kids while I was in the middle of breastfeeding Keegan or MacKenzie (with permission of course). I think many of us wouldn't dream of being seen by a doctor who we didn't want touching us, so I'm not sure why we wouldn't want that same level of comfort for our kids. 

Fourth, if you live in a large city, take advantage of the vast resources you have. I love Houston, but even more so now that I have kids because of the access to Texas Children's. For most things, we see our regular pediatrician, but Johnny gets biannual checkups at the Down syndrome clinic too. It's wonderful to have a group of doctors who solely focus on kids like Johnny to help keep tabs on us. I also worry less for his procedures that need anesthesia because of the level of expertise in this city. 

Fifth, take location into consideration. Our pediatrician's office is less than five minutes away and most of our doctors see us about 15 minutes away from us. With the amount of time spent at the pediatrician in the first few years of life, especially with three, it was important to have someone close by. Additionally, the specialists are all at a satellite office of Texas Children's which means we get experts without having to drive downtown for every appointment. We are still down that way some, but most of our appointments aren't a huge drive. A small sub recommendation would be to budget for valet parking when a trip to a downtown facility is necessary. Parking can be horrendous at TCH-Downtown, so we let someone else worry about it even with the extra cost. It helps bring peace of mind to us and it's a lot easier to get one or more kids in and out of the hospital that way. Plus, if your kid is having an actual procedure and not just a checkup, they can be cranky or tired. Who wants to navigate a parking garage with cranky kids? 

Last, take doctor network into consideration. Our specialists and pediatrician are all also part of the Texas Children's system so their records are accessible by one another. It is really helpful to not have to bring medical records or make sure they are transferred over before an appointment. Even the simple information of kid's growth is helpful for our doctors to have a complete record of, but they can also see when they have been sick, any medications, last immunizations, and special concerns or considerations. 

Once again, we are very grateful for all the luck we have had with seeing doctors over the years. Between perinatal care and pediatric care, we have had a ton of people look after our kids, so having one potential "dud" in the mix is doing pretty good in my book. 

And pictures of the kids just because!

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