Sparkle

Today we had our follow-up appointments with Dr. Sood and Dr. Chugani. Both were thrilled with how well Dominic is doing. Dr. Sood said his incision looks great and so does the shunt. Supposedly the incision will look it's worst in about a month because of how the skin stretches as his head grows. But around 6-9 months post-surgery it should just be a thin line and the hair will start to grow back in that area. Dr. Sood revealed to me that in 18 years he had never had a patient come out of surgery with a sore on his neck like Dominic. He assumed it was from how he was clamped, but said he kept thinking about it and a few weeks after surgery and he realized that during the operation they put an electrode on his neck that is hooked up to the EEG monitor and that must be what it was from. DING, DING, DING! We have a winner, people! I don't know how many times I had to tell nurses, doctors, anaesthesiologist etc. that Dominic is allergic to the paste they use to stick the electrodes to his head. After our 48-hour EEG when the cap came off and revealed blisters covering his head, I knew I had to make sure that never happened again. I make sure to tell anyone who asks if he's allergic to anything that he is indeed allergic to that particular paste. I guess in pre-op they didn't pay much attention because he was having surgery not an EEG. So, in the end it was a huge burn turned blister, not a bruise, which is STILL not healed...

Other than that grand discovery, everything seemed great from Dr. Sood's perspective. We won't need to go back and see him for another year unless something happens that's cause for concern. Later in the day we met with Dr. Chugani and he thought Dominic looked great. Dominic wouldn't stop babbling and "talking" to him. When I asked him about how he thinks Dominic will do developmentally and he seemed very positive. He said to look at surgery day as his "birth" day. Everything before that doesn't really count because he has been so drugged and constantly seizing for the past 9 months. So everything he does now is through a new set of eyes and is all new to him; almost like starting over. So the fact that he is sitting, babbling, self-feeding and interactive is incredibly good news! He should continue to progress quickly and hopefully become mobile in the next few months. Because Dominic does have some use of his right hand (although still very weak) he thinks he will be a great candidate for Constraint-Induced Movement Therapy. In this particular therapy, they would restrain his strong arm and hand by casting it in hopes of getting him to only use his weak side. Here is a pic of a cutie I found who has been through this type of therapy. You'll notice her left arm is casted and has pink kinesio tape on her right. She also has an AFO on her right leg, which is what Dominic will be fitted for in the near future.

Tonight was started weaning the Vimpat. It will take about four weeks to fully wean him off that. During this time, Dr. Chugani would like him to get an EEG just to make sure there are no spikes. If the EEG comes back clean we'll start weaning him off the Clonazepam. I cannot wait to see what this child will be like on only ONE seizure med! The plan is to then do 24-hour EEG a year post-op and if everything looks good, to take him off Keppra. That would make him med free! I don't want to get too far ahead of myself, but it sounds like a good game plan to me :o)

After Dr. Chugani was examining Dominic, he looked up at me said "what I look for in a patient is a sparkle in their eyes. It's not just what he's doing or not doing physically or where he's at developmentally after surgery. But if he has that sparkle in his eyes, I know he's going to do great". Dominic really has "woken up" and has a beautiful sparkle in his eyes.

Tomorrow we resume our normal crazy routine - Mitchell is off to preschool; which he loves! Dominic has PT and OT and then his OT from Early On will be out Wednesday to get him registered for the year. PT again Thursday and then hopefully a relaxing Friday.

Mitchell on his first day of preschool!

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)