I'll Be Home For Christmas

We met again with the neurologist today so I thought I'd post another update. Not a whole lot has changed, but they have now received almost all of the test results that were done. Some had been sent out to Mayo Clinic, so they took a bit longer. Of the hundreds of metabolic disorders they tested for, all of them came back normal. After consulting with the metabolic specialist, this leads our neurologist to believe that Dominic does not have a metabolic disorder. This can be a good thing and a bad thing. Most metabolic disorders cannot be cured, they simply treat the symptoms, which are the seizures (which is what they are trying to do with meds). If it's structural, which he thinks it probably is, this can hopefully be treated. If not with medication, with surgery. This of course will all depend on how Dominic's evaluation with Dr. Chugani and what the PET scan shows. We will be making this trip to Detroit in early January.

The doctor decided one more time to up his dose of Vigabatrin for the next two days. If things get better, we will keep him on it. If things stay the same or get worse, they are tentatively planning on admitting him back into the hospital on Monday to start ACTH (adrenocorticotropic hormone), which is a steroid treatment. This requires daily injections and he'll need to be in the hospital to monitor him for the first few days to make sure he handles the medicine ok. It has very strong side effects - high blood pressure, irritability, weight gain and hypertension. He'll need to see the Pediatrician 3 times a week to make make sure his blood pressure is under control and he'll have to be on a stomach protector as well. ACTH is an aggressive treatment with a lot of side effects, but has proven effective in treating Infantile Spasms. We're just preparing ourselves for a rough 4-6 weeks in hopes that this will stop the spasms.

So, it looks like we will be home as a family this Christmas, instead of the hospital, which is a huge blessing. We continue to pray for answers and peace during this time of waiting. It's so hard to believe it's only been 3 1/2 weeks since this all started, it feels like MONTHS! We have realized that with this disorder, we have to take each day one at a time. So much can change from day to day and we don't know where we'll be six months from now, let alone a week from now. We're learning to appreciate the good days and to pray for strength to get us through the tougher days. Until next week, the Dunlaps wish you all a very merry and blessed Christmas!