Week of Hell

Marek started on his first drug, Topamax, Thursday, January 8th. He was still having seizures therefore on Saturday, January 10th the doctors increased his dosage. As they tried to find the right dosage for Marek they monitored him closely. Every morning they ran blood checking to see if his bicarbonate levels were normal (Topamax can cause acidosis). Unfortunately, his levels continued to fall, they were at 14 (normal is between 20-27) on Monday, January 12th. His body couldn't handle this drug, which we thought maybe was starting to work since he went 24 hours without a cluster of spasms. The doctors decided to take Marek off of Topamax since his body was rejecting the medicine. They decided to try a new drug called Vigabatrin. This drug would be coming from Canada and would take a few days to get to the hospital so they put Marek on Onfi to bridge him between the two medications.

Vigabatrin is one of the first line drugs against Infantile Spasms along with ACTH (steroids). They decided to try Vigabatrin first since it is cold & flu season and a side effect for ACTH is a dramatic decrease in the immune system. Vigabatrin comes with its own set of side effect including loss of appetite, drowsiness and the scariest being vision loss. As Ryan and I talked about whether to start Vigabtrin or not we really asked ourselves if the risks were worth the possible benefits, which we decided they were, so we gave the doctors the go ahead to start the medication.

On Wednesday, January 14th we started Vigabatrin with Marek. He was on a 250 mg twice a day. The doctors also check his bicarbonate level and it came up to 17. Although it wasn't normal they felt it was high enough to let us go home. We would return to get blood drawn in a few days to get to the bottom as to why his levels didn't return to normal even after allowing Topamax to leave his system. As we went home Wednesday night we were happy to be in the comfort of our own home but scared out of our minds because nothing was solved, better or even heading in that direction....and now we were alone. No doctors to come in during a spasm episode, no one we could pull into our room to ask questions to on the spot and no more tests to be ran at this time to see if we could get to the bottom as to what caused Marek to have IS. We were terrified, but we got Marek home, gave him a nice long bath (which he LOVED) and tucked him into bed (or into his pack n play which will now be next to our bed until we get through this).

Throughout our first week of hell, and trust me it has truly been hell, we have been so lucky to have such amazing family members and friends in our lives. Between both of our parents being at the hospital day in and day out, Cole & Jordan and Kourtney coming after work/school, Aunts and Uncles coming for surprise visits and our friends stoping in to bring us food and keep Marek company, we were surrounded by love. As well as all the prayers and thoughts being sent Marek's way through Facebook, texts and emails we are just holding our breath as to when the power of prayer will shine through and give us the results Marek so desperately needs.