We are weaning off the Prednisone starting today. It is a slow process. The spasms have not gotten better, they've gotten a little more frequent and more intense. We have monitored Jaron very closely. He has had blood drawn, blood pressure checked and another EEG. Tomorrow we will do it all again. The first week of the steroid Jaron had no adverse side-effects. He slept a bit more but was otherwise normal. He had a few less clusters of spasms but his EEG looked slightly worse. The EEG shows a pattern called hypsarrhythmia which indicates infantile spasms. Apparently, Jaron was not on the maximum dose so the second week we gave him the medicine 4 times a day instead of 3. This made Jaron much more agitated and over the last few days he has been having at least 6 clusters a day that last at least 15 minutes and they are more severe even than before. So the neurologist decided this morning that we would begin the weaning schedule. Really this is only 2 days early but there's no sense in continuing the full dose if it is not affecting the spasms. Jaron did not gain a bunch of weight or swelling, his blood pressure stayed normal, he never got "voraciously hungry,"and he has not gotten sick. We have many things to be thankful for. I'm not sure what the next step is. I am sad that this medicine is not working, nobody wanted it to work more than I did. But over the last 2 weeks as I've held my child convulsing in my arms, I have been reminded of God who sent His own precious Son Jesus to earth. The Father knew His Son would suffer but that suffering saved my life for eternity. I only hope that somehow Jaron's life and suffering are bringing glory to God. I still believe God will heal Jaron of these spasms, we just have to try other treatments. This has been a journey filled with many tears, frustration, desperation, prayer, fear, songs, questions, pain, hope, joy... I am so thankful that I can call the Creator of the universe, my dearest Friend. He has stuck closer to me than ever.
P.S. I also thought it interesting that the verse about "faith the size of a mustard seed," Jesus said to His disciples when He healed a young boy with epilepsy (seizure disorder). KEEP BELIEVING!
2 comments:
Dearest Jaron, I love you dearly ! You are a blessing and for sure a difference maker in my life and many others. You take us to the throne room to spend time with our Lord and we pray and talk about you . Your life teaches us about His faith ,hope, and love. Thank you sweet boy! Myrna
Dear Jaron,
You are a dear blessing! You have touched my heart more than you'll ever know. You have taken me and so many others to the throne room to spend time with our Lord. I talk to Him about you.You have taught us about His love, strength, hope, and His daily grace. You are a difference maker! Love you sweet boy!!
Post a Comment