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

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Earlier this month we had Kara’s annual visit to the Down Syndrome Clinic.

& it went FABULOUSLY!

Beautiful baby girl getting ready for her second trip to the Down syndrome clinic. Read more for a free print out that will help guide you through your next visit to the Down syndrome clinic in your area.

This appointment can be very overwhelming because it’s many specialists visits rolled into one big one. It is a long day with a lot of information.

Because of this, I have created a checklist to help guide you through your next appointment to the DS Clinic – Click below for your free printable!

Click here to download your Down Syndrome 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!
  2. 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.
  3. 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…
  4. 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.

{Behavior}

The behaviorist we saw was amazing. Upon walking in the room, he immediately noted how tuned in Kara is. He noticed that she doesn’t go longer than 30-seconds at a time before looking up to interact with who is in front of her.

He said that she is very obviously a social creature so attention is  e v e r y t h i n g  to her. This can be good and this can be bad. Right now is prime time to encourage the good behaviors & discourage the bad ones. We have been great about praising her when she demonstrates a good behavior, BUT we’ve also been giving her negative attention when there is bad behavior. In Kara’s situation, if she’s doing something like pulling off someone’s glasses, it is best to just set her down on the floor instead of using the word “no”. I found this interesting, and it made so much sense! This girl LIVES off of attention.

We also talked a lot about tantrums and separation anxiety. It is a real problem for us and has been bad enough that its disruptive to her therapies. We’ve been practicing some techniques that seem to be helping.

  1. We don’t engage her during the tantrum, only when she calms herself down, or even pauses for a few seconds, that’s when we can enter.
  2. To help with transitions, we have her say/sign “mama” or “dada” before we will reach for her. This makes her calm herself down and focus on the task. It also shows that she can’t kick and scream until she gets her way.

{It didn’t take long for the techniques to start making a difference. We have much better transitions and I can finally enjoy some time with my arms free!}

In concluding his visit, the doctor said that he would consider her above the curve socially because she picks up on receptive & expressive language so quickly. (My chest might have puffed up a little when he said that ;))

{Speech Therapy}

The second the SLP walked in, I swear Kara immediately started vocalizing. (Like, what?!) She’s such a show off…

This visit was a relief. She said that even typically, they only expect to be saying up to five words at this point. Kar ais basically saying “mama” & “dada” now so I don’t consider this a huge delay anymore. Phew!

She, like every other doctor we saw, was blown away by her sign-language skills & wasn’t concerned with her progress one bit!

{Occupational Therapy}

Kara was napping when OT came in so they missed out on her awesome pointer finger & pincer grasp, but of course, I filled them in. They seemed impressed with her fine motor abilities & shared some ideas for at-home exercises to continue to tune them up.

The OT said she was pretty disappointed that she didn’t get to see Kara while she was awake because the office was talking about “that cute baby who knows 20 signs!”

{Nutrition}

I had many questions ready for the dietitians when they stepped into our room.

We had been batting constipation for so long that I thought I was going to lose my mind. (Constipation is super common in people with Down syndrome due to low tone in the gut.) We had resorted to Miralax for a couple of days, despite my instincts telling me that there was a more favorable option still out there. When I brought this up, we went through a laundry list of possible solutions.

They asked how much fluid she had in a day’s time and I guesstimated my answer, following up with “she really drinks a lot, we’ve been increasing”. My guess was no where near the 26 fl. oz. she should be taking in based on her current weight! {Ever since then, we’ve been getting her where she needs to be with fluids and she’s right as rain!}

We also chatted about her diet and how well she eats. We are incredibly lucky that Kara is such a good eater – her favorites are eggs, prunes, bananas and chicken. She’ll eat just about anything including tomatoes, lettuce, rice, strawberries, peppers, and she looooves cinnamon as much as she does oregano. They were very impressed with her diet!

{Audiology}

You may know that Kara recently had tubes put in her ears to help drain fluid buildup behind her eardrums. The result is that she hearing clearly again! Yayyy!

It is pretty obvious that she’s hearing better, but we hadn’t been able to prove it on paper because Miss Sassy Pants didn’t want anyone coming near her ears. Her post-op appointment last month basically consisted of screaming and wriggling and me saying that we don’t have any concerns. I was told we’d have to try again later. Okay, bye!

At this appointment, Kara was still showing off when the audiologist came in. We took her down the hall for a re-test of her hearing and SHE PASSED WITH FLYING COLORS! I am still having trouble believing how cooperative she was!

{Lab}

Lastly, Kara had her blood drawn. Following suit with the entire morning, she did fantastic. I was pretty proud of myself too!

Jacob & I get pretty protective in the lab… we’ve never had a smooth experience with getting her blood drawn because they’ve never been able to find a good vein in her arm. It turns into this giant mess where Kara is screaming because she’s been poked multiple times & in the end we go through her foot (which isn’t ideal to the nurses because they can’t get as much).

The very first time she got blood drawn, she was 3-months old. They tried in one arm, then the next, then back to the first, then did a heel stick that didn’t work, so they tried her other heel…. it was traumatizing for all of us. 

Well this time I went into that lab with a stern face and I told the nurse, “I am going to hold her and you’re going to have to go through her foot. That is the only way we’ve ever been able to get enough blood.” I wasn’t going to sit and watch the tears stream down my baby’s face again. But after asking for my permission, the nurse took one quick look at her arm and said she could see the perfect vein.

When I told her no, she put her hand on mine and said, “I’ve been doing this with babies for 38 years. I promise you I can get it.”

And I believed her. We had the best & smoothest blood draw yet! Of course, Kara cried, but stopped shortly after the needle was out. That nurse is an angel!


It was a long day, waking at 5:30 a.m. to hit the road and not leaving the hospital until past 1:00 p.m. that afternoon. Still, the minutes spent are so informative & helpful!

So now that we have our first two trips to the Down Syndrome Clinic under our belts, the ones ahead should feel like nothing!

….right?

You’ll find OUR VERY FIRST TRIP TO THE DOWN SYNDROME CLINIC right here if you feel compelled to read about it.

& don’t forget to download your Down Syndrome Clinic Checklist & Guide!

Your guide to the Down syndrome clinic - complete with checklist

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