Michael Warechowski IV

Updates on our sweet Michael

Pittsburgh. Finally!!

on May 22, 2012

We finally got the authorization and insurance coverage to go see Dr. Maria Escolar at Children’s Hospital in Pittsburgh. We will be leaving on Tuesday May 29th and we’ll have our first appointment Wednesday morning. Michael will have Auditory Brainstem Response Evaluations (ABR), Visual Evoked Potential
(VEPs), Nerve conduction velocities (NCV) and an MRI as well as a neurocognitive evaluation. After completion of all these tests, we will know how far Michael is progressed and how fast this disorder is moving for him.

Some MLD children live to only 3 years old and some to 10 years old. Let’s pray we have Michael until he’s 10! And who knows, maybe over the next year or two, they will have developed an enzyme replacement therapy that can prolong his live even further.

So you may remember that a couple of weeks ago we started Michael on some medicine because we thought he was having some nerve pain and muscle spasms. The medicine helped a little at first but did make him very drowsy and extra drooly. With the medicine, he was pretty lethargic but he started to sleep through the night again. Well, yesterday he woke up feeling really good and the medicine was definitely out of his system by the time he woke up. So I decided to skip his morning dose to see how he did. He was great. So we skipped his afternoon and evening dose too and he was totally fine without it. He’s medicine-free today as well and is off to a great start.

This begs the question – was he having pain before or did he just have a virus or a tooth coming in? Or do these spasms and nerve pain come and go? It’s so hard to tell with a two year old. Fortunately, the nurse said that KLONOPIN can be given “as needed” but we are going to try and avoid medicine as much as possible but not at the risk of Michael being in pain.

I will have an appointment with a Naturopathic Doctor in the coming weeks and I’ll post an update about that as soon as I can.

So that’s what’s going on as of lately. I’ll post again soon!


One response to “Pittsburgh. Finally!!

  1. Kristie McClure says:

    Thanks for keeping us updated. Very interested in what the Doctor in Pittsburgh has to say.

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