We've Got a Plan

Mike and I met with the Neurologist on Monday and set out a game plan for Dominic's treatment. Because they haven't received all the test results back and they still don't know what is causing the spasms, there are several routes we will need to start down before we know what the best treatment will be.

The plan starts with adjusting the dose of Vigabatrin. Sometimes if a baby is on too high a dose, it can actually have the opposite effect, which is what he thinks happened. So, he lowered the dose and will monitor him over the next few days. He's keeping him on the Carnitine supplement as well, since the second round of lab work revealed he still had low levels. Dr. Arndt does not believe this is what is causing the spams, simply a secondary deficiency. We're going to talk Friday to see if we continue on the Vigabatrin at the same dose over the weekend or up it. Next week he'll probably determine if it's time to switch to the ACTH steroid treatment. In that case we'll be admitted back to the hospital to begin treatment.

Dr. Arndt decided that the Vitamin B6 and Pyradoxine weren't really having an effect, so he took him off that on Tuesday. Which is good because it's a lot less meds to fill up his little tummy.

Dominic had an EKG and an ECHO Cardiogram on Monday to make sure everything looked okay. I guess an enlarged heart can be associated with some metabolic disorders. Everything looked normal, which is great!

In the meantime, since a closer look at the MRI showed one side of his brain is slightly asymmetrical, Dr. Arndt is referring us to Dr. Chugani in Detroit for a PET scan and an evaluation of potential brain surgery. He will evaluate Dominic to see if surgery may be a solution. (Here is an article on a child he treated with the same condition that was successful). So, sometime in the next few weeks we will be heading to Detroit for that.

Though we are still waiting for all of the results to come back from the metabolic workup, we will also be consulting with a Metabolic specialist who will also evaluate Dominic.

The last couple days Dominic has been doing okay - no better, no worse, seizure wise. He has been eating much better, which he was struggling with since being in the hospital. We did some tummy time today and he wasn't able to lift up his head. I know this is all part of it, but it's hard to see that he's already regressing. The Occupational Therapist comes tomorrow, and will be coming once a week, so hopefully she can help get him back on track. He has been more alert and "with it" since he started on the lower does of Vigabatrin. I'm starting to see again some signs that my little guy is still in there :o)