If your child has congenital hypothyroidism, then you will probably be referred to a pediatric endocrinologist. The first few appointments my husband and I went to with my newborn son at the pediatric endocrinologist’s office were not so great. My sweet boy hated riding in the car and screamed the entire way to the children’s hospital located about 40 miles away (1 hour if you count driving and parking). We waited for over an hour to see the doctor. We didn’t bring anything to write on and ran out of diapers. Truly brand new parents. We left feeling a little better about our son’s condition, but in general, disappointed with the lack of information. Over time, we learned the tricks of the trade and began to have much better appointments. I want to share with you what I think makes our appointments go well.
1) Know what to expect. They will measure your child’s height, weight and head size at every appointment (well, at some point they stop measuring the head, but they will always do height and weight). They also usually do a quick physical exam, including feeling your child’s thyroid gland (if they have one), but not as in-depth of a physical as your pediatrician typically does. They will want to know brief medical history and growth patterns of parents. They will also ask what medications your child is currently taking, so be sure to know what dose of thyroid hormone replacement your child is taking. Your doctor should go over every lab result with you and explain it to you – if they don’t, ask them to do this. It’s important to learn as much about thyroid level testing as possible because it will help you manage your child’s condition. Check out other posts on my website about hypothyroid and hyperthyroid symptoms. Many children’s hospitals now also have a lot of helpful information online and articles about what to expect at your first appointment and hopefully some forms you can fill out ahead of time.
2) Take help. I found it very difficult to manage nursing a baby (because we were always there long enough that I’d eventually have to feed them) and talk to the doctor. We were lucky when my oldest was born in that my husband and my mother both worked locally. They both accompanied me to the first few appointments. My mom would park our car, which was a huge help at the big hospital we went to. Then, she would meet us in the doctor’s office and take my son outside when the exam was over so that we could talk to the doctor uninterrupted. Now that I have 2 boys with congenital hypothyroidism, I typically schedule their appointments at the same time. My husband doesn’t come to every appointment now that I have the hang of things, but I still try to bring someone with me. 7 and 3 year olds don’t like the doctor anymore than babies do and they get bored. It’s wonderful to have someone help me take notes for my spreadsheet (I’ll get to that in a minute) and also walk the boys outside when it’s time for me to talk to the doctor about the lab results, etc. I have also learned to bring plenty of snacks, games and a fully charged iPad to keep them busy. I feel like I pack for the doctor’s office like I’m going on a trip – but it works for me!
3) Get lab results ahead of time. I found it useless to meet with the pediatric endcrinologist without current labs. I never liked the idea of seeing the doctor, then drawing labs. I want to have the results in my hand and discuss them in front of the doctor. That way the doctor is reading the results, examining my child, and then talking with me right then and there about what the next best step should be.
4) Keep track of everything and bring it all with you to the appointments. In the beginning, I just used a notebook to track feedings, lab results and notes from the doctor. Now, I use an MS Excel spreadsheet that tracks lab results (including the date, what levels were tested (TSH, FT4, T4, etc.), and the ranges for each (because different labs use different ranges and the range can change depending on your child’s age)), and then what the doctor said to do (increase dose, re-check in 2 weeks, etc.). I also have a tab on the same spreadsheet where I track height, weight, head, wingspan, etc (including percentiles) for each appointment, the date of the appointment, which doctor’s office we were visiting (pediatrician or pediatric endocrinologist), and any notes from the doctor (when they want the kids to be seen again, etc.). I also track anything special that is done under that same tab (like the date of any x-rays or ultrasounds and the results). Before each appointment, I make sure the spreadsheets are up to date, print them out and bring them to each appointment. If I had a dollar for every time we arrived at an appointment and the Doctor said “we don’t have the lab results from your last test”, I’d be rich by now. Our pediatric endocrinologist is wonderful but is also at a large children’s hospital where lab results tend to get lost in the shuffle or we arrive at the appointment and the computer system storing our results is down – you get the picture. Anyway, it’s been great to be able to show them the results myself. I will try to link a sample spreadsheet to my blog – if you’d like it sooner – just email me from the “Contact Me” page, and I will try to send you one.
A final thought for today – all these appointments and yes, there have been a lot in the last 7 years – mothers of infants, you may be wondering if my kids developed scrub phobia. The answer is yes, but it was a phase that has passed, and I will write more about that soon.
by Blythe Clifford