Our Second Trip to the Down Syndrome Clinic + DS Clinic Checklist & Guide

Here are some tips to make the most of your trip to the Down Syndrome Clinic:

    1. Don’t do it alone – Bring someone with you. Last year we had our family coordinator from Infant-Toddler Services come with us to take notes. This year, Jacob got called into work so my Granny came with us. You’ll want the extra set of hands!
    1. Bring a notepad & pen – You will get many suggestions and tips. There will be names & numbers to remember and directions to follow. Best to write them down right then so when you go home, the notes will jog your memory.
    1. Bring substantial snacks – Not just for your kid, but for you too. Our appointment was from 8am – 12pm and then we had a blood draw after that so we didn’t leave until 1pm! Mama was getting a little hangry…
  1. Be preparedThis is important. The week before you go, make a list of all your questions. Anything you are curious of, worried about or proud of! (If you can, try to categorize them between specialists so you remember to ask the right people.) Also find any picture or video evidence that you’d like to share with the doctors and find those beforehand as well. For example, I had a question about Kara making a congested sound when eating & I got a video of her doing it so I found that video, favorited it on my phone, and put my question under “Dietician.”

 

Here is a list of possible specialists you might see in the DS Clinic depending on age and/or needs: 

Adolescent Medicine(>13 yrs) – Audiologist – Behavioral Psychologist – Dietitian – Genetic Counselor – Internal Medicine – Nurse Practitioner – Occupational Therapist – Pediatrician(<13 yrs) – Social Worker – Speech Pathologist

DOWN SYNDROME CLINIC – KANSAS CITY

making friends at the Down syndrome clinic
Making friends at the Down syndrome clinic

Below are all of the specialists that we saw during our appointment.

{Pediatrics}

Kara was seen by a Nurse Practitioner and a Pediatrician. They found her to be in great physical health. We chatted about her daily schedule and addressed any issues that have come up recently.

With the Nurse Practitioner and Pediatrician, we covered all the general stuff and got orders to check her thyroid and get a sleep study underway. These were both at my request.

Some of her therapists wanted to see her thyroid levels to see if there is an underlying cause of her lack of motivation to move. {Turns out her thyroid levels are A-OK so I’ve nicknamed her Lazy Bones :)}.

As for the sleep study, she is going to need one before the age of four regardless – I decided to get it done before she turned two so it would be a little easier. We are currently scheduled for mid-April.

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