Chandler’s journey part 1

I know I have been posting on Facebook all about the doctors appointments and evaluations and most don’t know all the details so I thought I’d get this written out. He’s being evaluated for entry into Kindergarten next year. He currently has an IFSP with Beaverton ESD, and now we are working on switching it to an IEP for Kindergarten next year. With all the evaluations we’ve found out he’s got some other issues besides the speech delay.

  • He’s physically behind (evaluated to be at about 22-40 months), he has poor balance, nervous to walk up stairs or down, doesn’t run properly, and doesn’t jump on 1 leg.
  • He has hyperactive reflexes on his legs, where you hit them, and they bounce more than 1 time (about 6 on some spots), and they shouldn’t do that. He even had one spot where the opposite leg’s spot moved, not right.

“that the reflex is hyperactive and that there is clonus present. Clonus is a repetitive, usually rhythmic, and variably sustained reflex response elicited by manually stretching the tendon. This clonus may be sustained as long as the tendon is manually stretched or may stop after up to a few beats despite continued stretch of the tendon. In this case it is useful to note how many beats are present.”

  • He’s always been chronically constipated since he was born. There was discussion he had Hershprung’s Disease (where part of the Colon doesn’t have the nerve cells to tell him it’s time to poo. Surgery fixes it easily).
  • Then his Apraxia of Speech shows that there is a neurological component to his body that’s just not working in sync.

After seeing a PT, Developmental Pedi, eye doctor, audiologist, speech language path, and I spoke with an awesome Pedi Urologist on the phone (free!), we decided to see a Neurologist.

He’s ordered the MRI to see if he has a tethered spinal cord or if he’s got something going on in his lower back that could be causing these issues. The PT thinks she can get him to where he should be by September (YAY!) but we don’t want to waste our PT visits if there is an underlying cause.

So that’s about it. It’s taken about 4 months to get to this point. If it’s a tethered cord, we’ll see the Neurosurgeon at Emanuel and she will fix his cord. From what I’ve read, she’s excellent!

More updates after we get the blood work results on the Fragile X Syndrome (doubt, but easy blood test), and then Monday’s MRI at the hospital (he’ll be under for it). Thanks for the prayers & good thoughts! It all helps!
Melissa

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2 thoughts on “Chandler’s journey part 1

  1. Hang in there Melissa!! Chandler is lucky to have parents who are looking into all possible causes and fixes. Abbie (my 5 years old) has been in occupational therapy for fine motor skills, sensory and balance. It has changed our life!! Good luck and praying for Chandler and your family.

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