Has anyone else experienced sudden sickness just from the thought of a certain word? That was me today, for sure. I mean so bad that I would think this word and suddenly I'm running to the restroom to get sick. I know it might sound silly to some, but let me try to put this into words, and avoid the word that is making me ill. This word, this by-product of PMG (Polymicrogryia) is "seizure". With every ounce of being, I loathe this word. I loathe what it means, what it does to Daniel. I don't understand, I can't wrap my mind around WHY it is, that this "monster" has come back?
Are we doing something differently?
Am I missing something I should be catching onto?
Am I not doing what I should be doing?
My little guy had been monster free for 15 months and then we had a couple break through tiny gremlins and we adjusted his medicine of Vigabatrin...crossing our fingers hoping it would work.
Now, this week, it seems that his "monster" is paying another visit on a daily basis. And Dammit, I don't like it one bit. He only has one cluster currently (pray its not going to be more) within 30 minutes of waking up in the morning. Then, from what I can see, he doesn't have anymore during the day, even after naps. I don't understand again......baffled as to why all of a sudden the miracle medicine isn't working anymore.
We are scheduled for the Video EEG at the end of this month. But until then Dr. Chugani wants to add Zonegran to Daniel's medicines. He will no longer be considered "mono-therapy". I am dreading Daniel having more seizures (uuugh I said it!), or taking a new medicine that is going to make him a zombie. It is killing me, I don't want this monster to take our little boy away again. He has worked so hard to get back everything he lost when they first appeared. I will be damned if I will let that happen again. But I am so scared......so please......if you believe in a higher being, God, or whoever......please ask him/her to spare Daniel in this visit of the ugly seizure monster.