A Referral to Another Doctor (For Increased Tone and Toe Walking)

As you all know, Jax has been in Physical Therapy for the last five months to help him learn to move: roll, crawl, stand, and eventually, walk. He loves his Therapist and the sessions seem like play time for him, so he doesn’t mind them one bit. I really like his Therapist, too, because she does a great job of explaining what she’s doing and why. She also gives good suggestions for activities for us to do at home.

Ever since Jax was very small, I have noticed some increased tone in his legs, ankles, and feet. In other words, he “stiffens up.” Jax’s pediatrician also noticed it, which was one of the main reasons Jax started Physical Therapy in the first place.

So, Jax’s Therapist has been keeping a close on him. Now that Jax is standing, it’s becoming a bit more prominent. When Jax stands, he very consistently goes up on his toes. I mean, literally curls his toes under and stand on his toes. This is especially happening on the right side.

And then last week, Jax’s pulmonologist noticed it out of the blue (he wasn’t even looking for it.)

Kids who were born as early as Jax have a very high chance of having Cerebral Palsy and one of the symptoms of Cerebral Palsy is increased tone.

So, it’s time for Jax to see a specialist to rule out Cerebral Palsy or other issues that might be causing his increased tone and “toe walking.”

I’m anxious. And scared. And really bummed out about this! And the worst part is that the earliest appointment is not until November 25! That’s a long time to wait and worry. I knew this would be a possible path we would have to take, but to actually have it start happening…now that’s another thing entirely! Jax is a long way from a CP diagnosis and his symptoms are mild. But, it’s just so scary hearing the words: “I think he should see a specialist.” and “Cerebral Palsy” in the same sentence.

Jax in a gait trainer at Physical Therapy. This is not something he will have to use regularly, but it helps his therapist get an unobstructed view of Jax's feet as he tries to stand and walk.
Jax in a gait trainer at Physical Therapy. This is not something he will have to use regularly, but it helps his therapist get an unobstructed view of Jax’s feet as he tries to stand and walk.