Today was Eden's last day to take any prednisone. Since I last talked about Eden starting steroids she has been completely seizure free. On April 27th Eden had her second EEG to check her brain activity since starting the steroid. She still hadn't entered into hypsarrhythmia but there was some abnormal brain activity present. They even said there were areas of high voltage but didn't consider it to be hypsarrhythmia. Eden did much better for this EEG. The tech. was much more efficient and seemed to know exactly what she was doing. We were doing it the second time around so we knew what to expect and that made it easier on us, I think. Eden slept really good for about a half hour and then the tech had me wake her up to see her brain activity while she is waking up/awake. Eden was not happy to be woken up. It was pretty rough actually and even rougher as the tech was taking off the wires. Eden was super over tired. We went to our apt. and met with Dr. Matthews (head of the neurology department) and Dr. Hymali (the fellow). They gave us a tapering schedule to start after she had been on her steroids for two weeks which was April 30th. On that Monday we started her on 30 mg (down from 40mg), the next Monday (May 7th) she went down to 20mg, May 14 she went down to 10mg, May21st we started 10mg every other day (for 4 doses), May 29th Eden started 5mg every other day (for 4 doses) ending today! Dr. Matthews thought Eden looked excellent developmentally and was super excited that the steroids were working so well. She didn't offer us much hope that it would keep the seizures away though. While they don't know much about seizures in Aicaridi girls, she didn't think the steroid would keep them away for long even if we do get all the way to the end of the tapering schedule. She didn't want to see us back until November unless seizures become present again. IF the seizures return we will try the prednisone one more time (the chances of the same medicine working again are slim) at 40mg, if that doesn't work she will bump it up to 60mg. Either dose they will keep her on even longer and taper her off even more slowly. If neither dose works they will try a different drug altogether. We are so thankful for how far we have come. God is definitely taking care of and watching over her!
A little about the steroids: The side effects were awful. I can look back now with thankfulness and be so glad that we are out of it, but while we were in the middle of it I was feeling extremely overwhelmed. Eden was crabby, STARVING, tired, RAVENOUS, getting chunkier, eating all the time, smelly poops, and did I mention HUNGRY?!! I seriously fed her about 8-10 times a day. She got up AT LEAST once a night. And her poop was unbelievable! It was very obvious the last two weeks of her tapering schedule what her personality was really like because she was/is the HAPPIEST baby alive! She has even slept through the night again the last couple days!! God is so good! I am praying so hard for God's will in Eden's life, but really really praying we don't have to go back to that. It was through this all that Jesus was and still is carrying me! I couldn't get through any of this without Him and His promises.
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