Parents Guide to Navigating Pediatric Medicine

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Navigating Pediatric Medicine can be a full-time job. Knowing what to expect can have a tremendous impact.

 

It all started moments after my son was born, not breathing. It wasn’t a typical birth experience, to say the least, but I’ll spare you the details. Let’s just say instead of pleasant visits from family and friends, time bonding with my newborn, hospital room filled with balloons and flowers – it was filled with numerous tests and doctors visiting all throughout the day and night. Follow-up upon follow-up visits scheduled after we finally left the hospital eight days later. It was enough to throw me into a spiral. I was not prepared for what would be forthcoming on my journey with Pediatric Medicine.



It is very overwhelming for the parent with any type of illness or condition your child may be born with or develop. I want to provide you with some tips and guidance I wish I knew from the start when my son received his diagnosis. I hope it will help relieve some stress if you, unfortunately, need to travel down this path.

 

a doctor using a stethoscope to listen to a baby’s heart


Not for the modest.


It’s time to put on your big girl pants. Let the momma bear come out. Remember that, at least in America, the medical professionals/facilities are a business. You (and insurance) are paying them for their insight and services. Yes, 99% of all pediatric doctors are saints and special people, but you also have the authority to stand up for your child and make sure they are getting the best care. If you think additional tests need to be ordered – push for it and vice versa. Some doctors will order tests that do not need to be done. Don’t put your child through that experience if not needed. Be bold and be an advocate for your child.


Yes, be bold, but be kind.


As I mentioned above, you need to be bold on what you think is best for your child; however, being kind to the doctors, nurses, staff, etc., goes a long way. You all are hopefully working towards the same goal for your child. It takes a village. They are now part of your village, like it or not. Send thank you cards, donuts, give a hug, tell them they are appreciated. You should see my long extended Christmas gift list ☺


Be organized.


This was easy for me since I’m Type A. But honestly, keep all documentation. Request a printout of clinical notes after each visit. Nowadays, there are electronic records; however, what I noticed is that what you find on MyChart or another Electronic Medical Record is not as detailed as what I receive when I request the clinical notes made by the doctor. Request all images as well (MRIs, Xrays, CAT scans, etc.). Make a binder for each specialist and house these documents. You may need to take them to other specialists who are not in the same hospital system.

 

a shelf of black and white binders

Find your tribe.


Use social media to find a group of parents that have children with your child’s same medical need. I could not live without my Little People of America parents group. I learn so much more from parents who have already been through what I’m currently going through. Share experiences and research with each other.

 

Research. Research. Research.


Be careful with this. Dr. Google could be a black hole. Use it wisely. Research for top specialists who focus on your child’s medical needs. Research current clinical trials that are going on across the US.



Referrals.


Yes, referrals from other medical professionals are great; however, remember they all work for the same company/hospital system. Do your own research and find out the best one for your child.



Get a divorce (from the doctor ☺)


Just because you had one appointment with a medical professional doesn’t mean you are married to them. This sounds awful to say but shop around. You need to be comfortable with him or her. If you don’t feel a connection, switch doctors immediately. I couldn’t tell you how many times I switched my son’s specialists to another specialist in the same practice. It’s not because I thought they didn’t know what they were talking about; it was because I didn’t get the sense we were working together for the greater good of my child. Divorce them ☺



Nurse navigator.


It took me a few years to find out that most children’s hospital systems have a Nurse Navigator who is there to help you schedule appointments and tests, and to reach out directly to nurses on your behalf. They know the ins and outs of the system and get things done a lot faster than me spending tons of time on the phone scheduling and requesting information. Ask your pediatrician if there is one you can use.



Know your insurance inside and out.


This is such a painful topic. I might spend 12 hours a week reviewing medical claims, ensuring everything is billed correctly, and submitting numerous out-of-pocket claims for my son’s private therapies. Get your insurance app, set up online access. Look at it several times a week to ensure items are being billed, processed, etc. Do not pay medical bills before looking on your insurance website. Numerous times I noticed the insurance company had already paid and I also received a bill. If I didn’t catch this, the hospital would have received double payment, and I highly doubt they would refund me. My husband and I joke this is a full-time job.

 

a mom snuggled up in a hospital bed with her child who is in need of pediatric medicine

It’s a very overwhelming and exhausting process, but you got this! Just remember who’s boss. 😉

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Erin was born, raised and even attended college locally in St. Louis (Fontbonne University Graduate). She is a wife to Craig, a bonus mom to Chloe (21) and a mom to Teddy (5). The family resides in Town & Country. Erin’s world was turned upside down when she learned her son,Teddy, was born with a common form of Dwarfism, called Achondroplasia. After a few months of struggling with her sons diagnosis, she reluctantly jumped into the special needs world. It’s a challenging and different world, but she is realizing more and more each day that it has just as much, if not more, beauty inside of it. Even though I feel like I’m on a constant hamster wheel of navigating the special needs parenting path, Teddy has taught our family and friends more than we could imagine. Erin is passionate about helping parents teach their kids about different disabilities. She believes raising kind hearted kids starts in their homes. She is also passionate in helping other parents navigate the medical and therapy world. It’s not a world built for the passive type, which she quickly learned. When she is not carting Teddy back and forth to school, therapies, activities and numerous doctors visits she enjoys exercising, walks with her friends and drinking a cocktail while finally watching The Today Show at 9:00pm before bed.

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