Our Sweet Zackary

Tuesday, November 8, 2011 9:30 PM, CST

We celebrated Halloween in Rochester and got a few pictures taken of Zackary the Lion. Can you tell how much he loved to dress up and take pictures?! ;-)

Mayo was a great experience for us, but brought some tough news too so we just wanted to finish the trip and get home to relax and let everything sink in. My head is still kind of spinning, so bear with me as I try to explain a little of what we learned.

Zackary officially has a diagnosis now. He was diagnosed with Infantile Spasms, which is both the name of the types of seizures he has, as well as the name of his seizure disorder. IS is also known as West Syndrome. We are not sure if this is a progression of the seizure disorder he had before, or if it has been this all along and it is just more recognizable now, but either way we at least have part of an answer to what’s going on with our little guy.

The extended EEG Zackary had while he was in the hospital was the final confirmation needed for Infantile Spasms. It showed a very chaotic EEG pattern called hypsarrhythmia, which is likely the cause of his developmental delays. (This is why we have canceled the muscle biopsy for now) We also learned that he is having even more seizures everyday than we can recognize, which is already too many to count. Some of his seizures are very subtle, and some do not show clinical signs at all, making it impossible to know he’s having them unless he’s hooked up to an EEG.

As far as treatment, we were told of two medications that are typically used as first line options for spasms. One is a medication with very severe long-term side effects and one is a steroid that may have to be given by injection and could wipe out his immune system, among other things. Needless to say we had a very tough choice, but we decided to give the medication a try over the ACTH steroid. We have a short window of time to see if the Sabril works, and if not we move on. Both of these choices have severe risks, but in comparison to the risks of the daily seizures Zackary is having already they seem like nothing. We also started some supplements after we got the results from some of his lab work, so hopefully they will help his Ketogenic diet be more effective.

We started the Sabril as soon as we got back in town and are quickly moving toward the goal dose, so we are hoping to see good results soon. We have already seen a decrease in the number of seizure clusters and the intensity of the seizures, so we are praying he stays on this path and moves toward better control. As with any new medicine, it is making him sleep a lot more than normal, which can cause fewer seizures too, but we are hoping the medicine is primary cause for the decrease and that it continues.

As far as a cause for the Infantile Spasms, we still know nothing. There can be various causes, and the cause is related to the prognosis. Zackary’s MRI came back normal so there is nothing structurally wrong with his brain that they can see, but they want to repeat it in 6 months to a year to see if anything changes as his brain grows. There are also a bunch of genetic and metabolic tests that were sent off to Baylor, Chicago, and Atlanta (I think), but we wont have any results from those for a few months.

For now, the plan is to get the Sabril up to full dose and see how he does with that for a few weeks. We have another EEG and a neurology appointment with our doctor at Children’s Mercy on December 1, so we should know if the Sabril is working or not from the new EEG. We are also weaning him off of one of his 3 seizures medications he has been on for a while now, so hopefully everything goes well with that! We are going to start working with a PT and OT through Mercy, and I am going to put a call in to First Steps and try to get an increase in therapy through them as well. The more help we can get with working with Zackary the better chance he has to learn and develop despite the pesky seizures, so the more the merrier!! :)

With all of the changes going on right now we are hoping that Zackary starts to get some sort of relief soon. We are confident that once we figure out how to get that for him he will start to take off and show us everything he is capable of!

Thank you all for your continued thoughts and prayers, it is so helpful knowing that we have so much support from everyone around us!!