It has been a while since I've blogged...on purpose if truth be told. It has been an interesting summer, to say the least, and to be honest I just wasn't ready to let the world know where we were and what we've been going through. Embarrassed? A little. Sad? A lot.
First off, physcially Jerry has been doing great. He is almost 88 pounds at this point, eating like a horse, and we are not even using the feeding tube anymore. It's still there, in case we need to use it again, but at this point, it looks like he will no longer need it sooner rather than later. Probably still the end of the year before he is free of it entirely, but we can at least see the light at the end of the tunnel. And compared to this time last year? Wow. What a difference a year makes. This time last year we were still detoxing from our two-week hospital adventure.
Mentally and behaviorally? Well, that's another story. As some of you may recall, we were trying Marinol, medical marijuana to help take the edge off of Jerry's anger and OCD issues. We stopped that at the end of May. We just weren't seeing the results we'd seen initially anymore and, after years of medication therapy, John and I have developed a new philosophy. If it isn't working, why give it to him? So we stopped the Marinol.
It's been a long time since Jeremiah was on no medications at all, of any kind. We figured it was time to see where his baseline was...emotionally and behaviorally. And what better time than over the summer when he is in the safety of his own home and surrounded by family who loves him at his best and his worst?
It was about that time, the end of May, when Jerry began to cycle through some strange periods of behavior, the likes of which we have never seen in him before.
One day he simply woke up and wasn't speaking to us. He was speaking, just not to us. He began having full conversations that appeared from our perspective to be one-sided, but to Jeremiah, were very much two-way conversations. His new "friend" even had a name. Jack. During this period, which lasted roughly 11 days, Jerry ate only when we placed food in front of him, cried and laughed randomly (never at us, but at something Jack told him), stared but never really looked at us, and could go for more than 24 hours without any sleep. He paced back and forth, talking, crying, and staring awkwardly at random objects, but seldom us. He also wandered aimlessly during this time and we really had to keep a close watch on him out in public because he would just walk off aimlessly. He followed our lead and directions, but often after repeating ourselves multiple times while he just stared blankly at us.
Then Jerry woke up another day and he was Jerry again...times 10. He was teasing and super aggressive, cursing and hitting, impatient, irrational, and just exhausting and quite literally impossible. Just about the time we thought we couldn't possibly live through another minute of his behavior, bam...delusions and Jack were back.
Each period lasted roughly two weeks, give or take a few days. And we recorded his behavior during each one carefully, as did his behavior therapists who were just as perplexed by this new behavior pattern. We even videoed his more delusional periods for documentation purposes.
By the end of July, we knew it was time to go see his neurologist, Dr. "F." His first suggestion was an EEG to make sure that Jerry's delusions were not the side effects of active seizures. They were not. The day we took Jeremiah into his office for an examination, he was right in the middle of one of his delusional cycles. Try as he might, he could not get Jerry to look at him, but seemingly through him. Jerry talked non-stop to his "friend" as he paced the tiny office we were in, never engaging with Dr. F directly. This was one of the times that Jerry's "friend" was funny and entertaining it seemed as he walked around giggling incessantly, to the point that he drooled down the front of himself.
Dr. F seemed as puzzled as we were, but said that it was very clear that he was having psychotic breaks of some nature and was currently in the middle of one. As much as he knew we had been trying to avoid medication, he strongly encouraged us to consider an antipsychotic, for Jerry's well-being and ours. He also gave us an as-needed anxiety aid for him that would also help to calm him during his times of higher anxiety and aggression. That night we started him on Zyprexa at 10 mgs.
While we have seen less aggression and calmer Jerry during his more difficult stages, he is still cycling. And now, even during those periods when he for the most part seems back to the old Jerry, he still struggles with hearing the voices. It's not so bad when "Jack" is entertaining and causing the giggles. It's almost funny actually. But it's during the times when Jack is threatening and has Jerry scared that are the most difficult to see him in.
We are there now. We saw Dr. F for a check-up today. He wanted to see him before he goes back to school. Scared Jerry showed up yesterday afternoon. He paced all evening last night and didn't fall into bed until 5 am this morning. Then he was up at 8, wide-eyed and still scared. He has been pacing all day, even in Dr. F's waiting room.
When Dr. F. tried to give Jerry a high-five today, Jerry refused and yelled "space!" You would have thought Dr. F was poking him with needles by his reaction to taking his blood pressure and checking his reflexes. He sat in the exam room and cried, at one point telling us that he was tired of "all of it." It was heartbreaking really. Dr. F was very concerned by what he was seeing today and increased his Zyprexa to twice a day. He also encouraged us to use the anxiety aid more frequently, especially when Jerry was as he saw him today, scared and very paranoid.
The picture posted above was during one of Jerry's paranoid periods, when Jack was more of a foe than a friend. We were at the movies and, as you can see by the expression on Jerry's face, some of us were more there than others.
Jack has made Jerry laugh, scared him, had him in tears, and convinced him once that people were shooting at him. That was in a parking lot when he grabbed Michaela and I who were walking on either side of him, began screaming, and dropped to his knees. We had to practically carry/drag him to the van. He was pale as a ghost and crying the rest of our drive. Once, Jack was "responsible" to moving items around in Michaela's room and destroying others in Jonathan's just to try and get Jerry in trouble...according to Jerry. Needless to say, the kids are encouraged to lock bedroom doors when they are not home now...and sometimes even when they are.
He is convinced actors on the front of movie jackets and characters on the front of books are out to get him and telling him things and he has ripped all of the Marvel posters off his bedroom wall because they were "staring at me" and "wouldn't leave me alone." Today he asked for a bath and then kneeled on the edge of the bathtub naked and screaming because he was too scared to get in. he yelled, "Turn it off, turn it off!" Typically he loves baths and takes two a day, just because.
As always readers and friends, pray for us. We have placed an alarm on the front door to alert us in the event Jerry tries to go out on one of his up-all-nighters. We are praying for him and over him like mad. We do our best to make him feel safe when he feels threatened by Jack and love him unconditionally when he is having his bouts of aggression.
In reality, this is brand new territory for us. I can make token boards, reward charts, behavioral modification plans, and follow a medication regimen. I can kiss scraped knees and keep my distance when he is not in the mood to be touched or loved on. I can turn down too loud and remove him from situations that cause him sensory overload. And I have become an expert meltdown detector!
I cannot, however, get rid of Jack, no matter how hard I try. He's a bully whose parents I can't call or force to keep his distance from Jerry. Shoot, I can't even see him. The best weapon we have against him at this point is prayer. And truthfully that's hard for this momma who wants to make it all just go away. So pray with us please. This is uncharted territory...for us, not for God. Pray he will give us wisdom in dealing with this, peace that He has it all under His control and that none of this has taken Him by surprise, wisdom for Dr. F in the best treatment plan for Jerry, his new school year that starts in two days, and a complete and total deliverance for Jerry from Jack.
Thanks guys. Love you all.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.