Toxicity? Somnolence... Seizures

At the moment it appears the consensus from the doctors is toxicity from Abilify, but after another dr meeting yesterday...they really don't know what happened. This is a best guess.

I was very annoyed in July-Aug when we shared our concerns that Grant appeared heavily (too) medicated. We said we had zero interest in sedating him to reduce SIBS. That we were very concerned about his legit turn of symptoms. The most notable was a drooling like I had never seen in my damn life from anyone (let alone my son).

Grant had a river of drool that went everywhere he went. I contemplated his return to our house. I imagined every piece of furniture being destroyed. I imagined my wood floors being continually dirty. I imagined getting all new carpet. There is nothing right about a person that has never had a history of drooling starting this problem at a fresh 11th year of life.

In addition, he was off balance. It was subtle. He didn't fall down. He didn't get hurt (at that time), but I found myself supporting him more than I ever had.

I came back in Aug and it was pretty much the same. They did take away the Lithium.

I couldn't go out to see himin Sept. And there were frantic calls about taking him off of meds not long after I had made my multitude of requests. I don't even remember how on earth he was still on it by the time I was told he was rushed to the ER about 2 weeks ago. Details are getting fuzzy. Life is moving at a very fast speed these days. Unfortunately, Grant's health is not the only concern in our little world.

Something more was changing. One Sunday afternoon, I get a call. Grant had a seizure. It lasted less than a minute. A week later, another call about a seizure. Another day, this time no seizure, but he just fell down and landed on his face.

Before this, dr reported that it was so bad he actually just fell off of a toilet. When I reflect with you now, I am so confused about the events. I remember asking on 4 occasions to take him off Abilify. I was told 4 times...no that it was not a good idea...too many variables of change make it too complex.

So, by the time Scott and I got to Baltimore for our overdue Oct visit...and he was hardly conscious, we all looked to ECT as a logical blame pt. But, in a quick google search you will see multiple articles saying that there are no known cases of ECT causing epilepsy. Not one case. Was my son the exception to the rule? Stranger things could happen. Depakote was immediately administered. I was told he has a seizure disorder (epilepsy). I have been since told they don't think he has a seizure disorder. Are you confused? Yes, me too.

He had a perfectly fine MRI on Monday. As Grant came back from severe drowsiness, his self-injury came back in full force. His mood is good. He is happy as can be and is happy to have me around.

And because discharge is nowhere on the horizon...I don't think I am coming home either. This child needs a parent right now. He needs someone that can speak up for him daily...not monthly or bi-monthly. I am fatigued of knowing how my son is through a weekly call, no video, no photos. I am going to make a more solid decision about my whereabouts in the following week if I can.

Let me end on a positive note...

Scott and I can't thank each of you enough that have decided to donate money OR donate even more money to our complex arrangement of being split up to take care of everything. We take one day at a time. We just keeping trucking. There are no other options. Family first and we will figure the rest of it out as we can. Thank you for reading, caring, sharing my story in hopes to help us fundraise further, and simply being our village. Much love from our family to yours.