Today we had to go in for a check up to see how Eden is doing with her seizure medication and have another EEG. She did much better this time! She was much happier and tolerable. The tech who put all her wires on did it a little different and much more efficiently. The guy who did it before wasn't bad, he was just new so he was VERY thorough and shaky (not to mention he had a finger that was numb and useless) and did everything by the book. The tech we had today was quick and did just as good a job. I think Eden was all hooked up in less then 20 minutes! She was getting irritable but nothing like last time. We got her all swaddled but it took a bit to get her to fall asleep. Once she was asleep they only let her sleep a half hour and then made me wake her up to see her brain waves in awake mode. She was not happy! She screamed for a long time. It was really hard to settle her because she was so over-tired. By the time we got her blood pressure checked it was something like 116/67. Dr. Himali and Dr. Matthews weren't too concerned about it being that she was just super upset. Also they aren't going to put her on any blood pressure medicine because we are going to start tapering her off the steroids!!! The EEG showed a little bit of high voltage but still not considered hypsarrhythmia. God is so good! So we continue on with the 40mg until Sunday the 29th, then starting Monday we go down to 30mg, then Monday the 7th we go down to 20mg, then Monday the 14th we go down to10mg, then Monday the 21st we go down to 10mg every other day for four doses, then the 28th we go down to 5mg every other day for 4 doses and then we STOP!!! So by June 3, Lord willing, she will be taking her last dose!! If her seizures were to return we would go back up to 40mg/day. If that doesn't take care of the seizures then they would up it to 60mg and keep her on it for a longer period of time before trying to taper it again. The doctor did say that they would only try the steroid a second time and then go onto another medication. She also said that the same drug doesn't always work again so we may not see the same results another time around. She also laid it all out there by saying we were at an increased risk for seeing the seizures return. She said that sometimes when you don't see a lot of side effects it means the body isn't really absorbing it and using it the way it needs to so they may return before she is even off the steroid completely. I should have told her that we have been praying for the side effects to be minimal!! God is protecting her little body! And let me be clear, we have seen side effects...I just think I don't portray them as horrible because I tend to be a positive person and well, the alternative is seizures and side effects are certainly better than that! We are just supposed to be watching for any type of seizures. The doctor said if they return, it doesn't necessarily mean they will come in the same form either. I'm excited yet nervous! Pray, pray, pray for us and especially her!
Weight: 12 lbs 7 oz. (yes, she has gained a bunch lately!)
Height: 24"
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