Results for the 24 Hour EEG

Marek did great during the EEG. He fussed while they put his leads on but once his little hat was on he was the best baby. As soon as he was hooked up he started to have the little "seizure like" spells that we had been constantly seeing at home. We were surprised at how many he was actually having. Every time we saw him do something that we thought could be a seizure we were told to press a button that would mark the EEG with a timestamp and then the Epileptogist would be able to review it. We pressed the button 15 times in the first two hours. I guess at home we haven't been counting the amount of time we see things so it was kinda scary to see these strange movments so many times in a short period because we were told they were probably spasms by Mareks doctor when we sent him a video. 

It has been 12 days since we saw the last "typical cluster of spasms". I think Ryan and I were starting to believe that the third time of reaching seizure freedom would be the charm. Every doctor, nurse and tech that came in yesterday asked us when was the last time we saw a cluster, and I would reply with 12 days ago. They all seemed pleased and optimistic. Then the unthinkable happened. He started having a cluster of spasms (49 spasms in 23 minutes). It was heartbreaking to Ryan and I. We thought we were on the right track and then these ugly monsters come storming back into our lives. We honestly wanted to pack up and leave right then and there. We thought, "why stay hooked up when clearly he is still having spasms, which meant the Hypsarrythmia was back and his brain was slowly being damaged." It was hard to stomach staying there all night and we were dreading the morning when the doctors would come in and tell us the horrible news.

Morning came and we anxiously waited for the doctors to make their rounds. WE JUST WANTED TO GET OUT OF THERE. Marek's doctors finally came in. These were the results:

Good news first-

• We pushed the button over 25 times for his face scrunching/eye rolling/should shrugging = NONE WERE SEIZURES!!!
• Marek had ZERO seizures during the night. (So his waking up every 20-30 minutes is due to either medicine or bad learned behavior)
• Marek had periods of normal brain activity. The doctor said that if we would have had a routine 40 minute EEG it would have been read as normal depending on which 40 minutes they would have captured.
• Marek's EEG did not improve from his previous but it didn't get worse either and it is nowhere near the chaos of Hypsarrythmia that he had when he was first diagnosed.

Not bad but the not so good news-

• The one time we pushed the button when he was having his "classic spasms" was in fact a seizure. They are unsure whether the seizure was a spasm or tonic seizure however, they informed us that it didn't really matter because they would treat it the same way. 
• They are still seeing spikes on Marek's EEG. They explained to us that spikes are like the ticking you hear the furnace make right before it ignites and turns on. IF the "furnace ignites" then it would lead to Marek having a seizure. Basically Marek is very prone to seizures but his medicine is helping keep them at bay which is good. We are still hoping that his EEG is one day completely normal.
• The doctors are hopeful that IF the seizures stay away he will continue to develop. We are still skating on thin ice, Marek is currently weaning off the steroids which could lead to more seizures and we will begin to wean Topamax this weekend which could also lead to more seizures. To combat these risks the doctors are upping his dose of Sabril to hopefully keep him seizure free.

We thank God for these good results and we also thank each and every one of you that have continually been praying for our little peanut. Although it was a very scary 24 hours, we are very happy and relieved with the results. We will be continually praying for seizure freedom and that Marek continues to make developmental progress.