The Beginning of the End of Steroids

Dear Infantile Spasms,

 You suck! You have taken away so much from our son and our family. You have brought fear, sorrow and anger to a new level, a level that I could never have imagined existed. Although you have won many of the battles these last few months, I promise you that we will fight until the end and we will win this war against epilepsy. 

With Sincere Hatred,

Krysten

This last week and a half has been yet again a roller coaster. As Marek was getting over RSV his spasms got worse. We were down to one cluster of spasms every other day but then they picked up again and he was having multiple clusters a day. We went up on the steroid, Prednisolone, on April 16th to 40 mg a day. Since Marek was still having spasms the doctor let us increase his steroid on Saturday, April 25th to 80 mg a day but with the understanding that in three days if he doesn't show a response he would start to come off all steroids.

We feel that Marek is starting to respond to the steroids. FINGERS CROSSED, KNOCK ON WOOD & PRAY. I met with his doctors today to discuss where we go from here. They told me that even though Marek might be responding to the Prednisolone they feel that it is in his best interest to start weaning him off of them. They dropped his dose to 60 mg this evening and he will be weaning off of them over the next TWO MONTHS. (We have been on steroids for so long that I think roid rage, sleepless nights, insatiable appetites, and extremely chubby cheeks is typical Marek. I honestly have a hard time remembering what our little man is like off of steroids)

Marek's original PET scan was scheduled for last Tuesday in St. Louis but since he was still getting over RSV they rescheduled the scan to May 19th. After talking with the doctors in St. Louis they feel that we should go to Detroit and have Dr. Chugani run the scans and they will work along side of him depending on what they find. The catch is Dr. Chugani will not run a PET scan until Marek is off of steroids for four weeks. So we most likely won't be traveling back to Detroit until the end of July. After they run the PET scan in Detroit we would come back to St. Louis and be admitted to Children's to start the Keto Diet.

What we are hoping for is that even though they are decreasing the dose of his steroids that he continues to respond to the medicine throughout the entire wean. Towards the end of the wean St. Louis will be doing an EEG to see how much the steroids helped and to also give us a starting point for the diet. I know many of you have continually been praying for Marek. Please continue to do so, and maybe say a few extra. This is the last medicine on his list of Anti-spasm drugs. Next step is either the diet or surgery. Yikes, just typing that makes my stomach turn.


Thank you to all our friends and family who have put so much time and effort to help fundraise for Marek.