After NDT: How Intensives Impacted Our Patients (Jack’s Story)

September 4, 2018

After NDT: How Intensives Impacted Our Patients

Jack’s Story

 

PTC’s NDT camp is over, so we’re checking in with a few of our patients who participated in it. Our second blog is about Jack Grodin. His mom, Amma, was kind enough to let us interview her about Jack and his NDT experience.

If you haven’t read about NDT and how intensives can change lives, check out our five part series! Or read Shiloh’s story.


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Q: Can you tell me about Jack and his diagnosis?

Jack actually doesn’t have a diagnosis. He was recently accepted to the Undiagnosed Disease Network to get more genetic testing since, so far, we’ve exhausted the rest of the tests. He struggles mostly with gross motor development—he has low muscle tone that affects his whole body. He’s always progressing and making improvements, but at a slower rate than a typical child.

 

Q: What made you interested in the NDT camp?

I had read about the objective gains children could make in three weeks of intense therapy versus the gains that were made from less-frequent therapy over the whole year. We saw that in Jack during the NDT intensives. Denise Powers, our PT, did an assessment at the beginning and the end. Anything over a 1.2-point change is considered statistically significant and he had a change of 4 points.

Q: Did you have any goals going into the intensives? What sort of changes did you see?

He didn’t meet any of the specific goals we set, but we saw improvement in all areas. Specifically, his physical therapy goals were to be able to stand up from the middle of the room and he’s not there yet. But he’s getting better. He’s also improved his speed and confidence in walking. I would say the confidence was most significant. He seems much more happy, engaged, and confident in all skills.

 

 

Q: How is it different from regular therapy?

 

The frequency of it, since we came in every day for three weeks without taking any breaks throughout the week. I loved it because it took off some of the burden at home because he could rest more instead of doing exercises because he was getting everything he needed at PTC every day.

Q: How has it changed your day to day?

The progress is more motivating. We want to keep pressing on and it’s reinvigorating when we can see that much improvement. We know that it’s working. The biggest thing for me was that I could see an overall change. It’s hard to see change in your child when you’re around them every day and the progress is slow, so when you can see the change not just on paper but also in real life, that’s pretty awesome. It’s like watching him grow before my own eyes.


 

We also chatted with Denise Powers, Jack’s physical therapist, about changes she saw.

Q: What sort of changes did you see?

It’s harder with Jack, because he doesn’t have a diagnosis. But he made statistically significant changes in his gross motor skills, a four point change, which is pretty amazing. The big thing his mom and I talk about is how he was so much better with his vision and being direct and focused on where he is going. If you’re not looking, you’re not moving, and he got better at those sorts of things.

One of the other goals was walking speed and that has increased significantly, as well as reducing the amount that he uses his hands when walking, which can be limiting. He made changes that would have taken a year to make otherwise. He also starting talking a lot more, and consistently smiling and interacting with his therapists for the first time ever. Now he will look at me, and as a result of the improved communication, we learned he loves temporary tattoos and slap bracelets! He was so proud to show them off to his mom at the end of the session. It was great to see him participating more, being aware of the environment and playing in it.

 

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