Broken

Tyler has spun out of control. Something switched in the last week, and we can’t help but feel like we’ve lost our little boy. He has become highly agitated, frantic, aggressive, and destructive. He little body is a canvas displaying the havoc going on in his brain. His arms, legs, and shoulders are marred with bruises and cuts from thrashing around. His left eye has an inflamed, red scrape caused by a tumble down the stairs. When he gets mad, which is quite often now, he hits and kicks and yells and stomps and throws anything within reach, including furniture. He even hallucinates at times. When I took him for a walk last weekend, he defiantly sat down in the road and refused to walk further because he thought he was going to die because a car had slowly passed us on the road. He’s experiencing double vision and seeing things that aren’t there. While it’s very difficult for him to talk, we can make out a few phrases that he shouts over and over to Brian and me: “You lie,” “I don’t like you,” and “I hate you.” Brian, too, is covered in his own marks from Tyler hitting, kicking, and biting him during Brian’s attempts to keep him from hurting himself or others. These outbursts, which began as much milder and episodic occurrences, are now ongoing and only stop when he has completely worn himself into exhaustion and withdraws to his room. As soon as his energy rallies again, it starts all over. It’s a cycle that has been executed over and over through the last three to four days and doesn’t look to be slowing. Rather, each outburst seems more destructive than the previous.

So we are quite literally in a crisis, and we are forced into some hard decisions. Clearly, Tyler is not safe to himself or others. Yesterday, we spent three hours in Dr. Chrusciel’s office trying to decide what to do. She admitted that Tyler’s situation has eclipsed what she and the team at Children’s are equipped to handle. As we waited in the exam room, Dr. Chrusciel busily consulted with other doctors there at OU, contacted various facilities around the country, and did her best to present some options to us. In the mean time, Brian and my father alternately spent time wrestling Tyler down to prevent him from hurting himself. In the end, we were left with three options: (1) admit him to a psychiatric hospital somewhere in Oklahoma where he would be in a “safe room” and couldn’t harm himself while under the supervision of doctors, (2) transfer him to a specialized hospital out of state that is more equipped to deal with Tyler, but no such facility had yet been found that was suitable or willing to take him, or (3) admit him to PICU at Children’s Hospital to sedate him long enough in a safer environment to make a plan for #1 or #2. All three of those options are with the intent of getting Tyler on more medications to reduce his anxiety level enough that he could then be transferred to a rehab facility, probably in Dallas, that could then work with him with behavioral therapy for his tic disorder. However, he’s not a candidate for rehab till his anxiety level is under control with medications.

But we weren’t happy with any of those options. How would putting Tyler in a psych hospital, separated from his parents and loved ones, help his anxiety? How would a regular hospital help if it still meant us having to physically restrain him from hurting himself, when that’s what we are already doing at home?

From our perspective, the root question is not where should we take him to get him on the right medications to treat the anxiety. Rather, are the medications helping him and therefore we should add more medication to lower the anxiety, or are all these highly powerful meds actually fueling the anxiety, aggression, and inability to communicate? There are two tiers of medications Tyler is currently taking. Operating on the assumption that Tyler has PANDAS, he’s already had an IVIG treatment at the hospital, and he’s taking antibiotics to treat the PANDAS directly (the first tier). The second tier of medications treat the symptoms of PANDAS, such as tic disorders, anxiety, obsessive-compulsive behaviors, aggression, and personality changes. We have seen all of these symptoms in Tyler. However, the meds he’s taking to treat what was initially primarily a tic may in fact be causing or exacerbating the other symptoms. Those are the meds we want to stop. Why add a third tier of medications to counteract the destructive side-effects of the second tier when we can just stop taking the second tier altogether?

I don’t know how many times we’ve heard doctors say over the last six weeks, “I really thought that such-and-such amount of such-and-such drug would have helped him by now, but it hasn’t. So let’s add such-and-such.” Apparently, Tyler’s body doesn’t respond to the meds the way anybody has anticipated or he wouldn’t be in the state he’s in today. I think we can safely conclude that Tyler doesn’t follow the statistical expectation of what a medication should do for a child of his age with his symptoms. With that understanding in place, how long do we continue following a course of treatment that would be quite suitable for most kids when Tyler, so far, has demonstrated that his body doesn’t respond in the statistically expected way?

While anxiety and aggression are symptoms of PANDAS, the inability to talk is not. Since that isn’t caused by the PANDAS directly, how do we know that the anxiety and aggression are not also being fueled more by meds than by disease? The irony of many of these psychotropic drugs is that they can cause the same symptoms they are meant to treat. We just want to know: what is Tyler, what is his disease, and what is meds. Right now, it’s all collided together in an unrecognizable blur that has left us with a distorted, dangerous, frightened child who doesn’t resemble the boy we knew.

This has been the hardest decision we have ever had to deal with. Should we trust the doctors or trust . . .  trust what? I’m not sure what it is that we are trusting. Is it the Lord’s leading? Is it that parental gut feeling? Is it just our desire for hope for any other alternative than the present reality? It’s so hard to judge what is right to do.

The desire for something—anything—other than admitting him to a psych hospital and pumping him with more meds brought us to option number 4. It’s our option, not one presented by any doctor: find a way to safely take him off all the psychotropic medications and keep him at home. Then, at least, we will know what part of Tyler’s behavior and extreme distress is related to medications. Until we get him off them, we will never know. It may be that we realize, hey, those meds were helping after all! But for now, we’ve decided to keep him at home, do our best to keep him safe, and begin weaning him off the meds. The coming weeks will be extremely difficult.

There are several considerations to make during this process. First, how do we keep Tyler, ourselves, our five other children, and our property safe from his destructive behavior? Second, since many of these meds can cause life-threatening problems if stopped too quickly, how do we safely get him off of them? Finally, this plan only works if Tyler is willing to cooperate, Brian and I are all in, and we have lots of help in place.

To address the safety issue, we are going to have to make some creative changes to our home. We have to make a “safe room” for Tyler. Just like they would put him in a padded room under surveillance in a psych hospital, we need to do the same thing here. The problem is we have a two-story house, and he’s already shown that he doesn’t like to stay in one place, and thrashing around while he’s attempting to go up or down the stairs is dangerous. So we don’t have it all figured out yet, but the plan is that my father will help us build a safe room and make it as comfortable and safe for Tyler as possible. Hopefully, it will feel like his special place where he can go to escape when he’s agitated and distressed, not like a prison where we have to send him with locks and surveillance cameras, which will be necessary both for his safety and ours.

Second, regarding the medications, Dr. Chrusciel told us that it would take about six months to safely wean off the medications he is currently taking. Part of the immediacy we felt with needing to begin the weaning process now was realizing that if the current meds were going to take six months, we certainly didn’t want to start more meds which would in turn require an even longer time to wean. Six months seems like an eternity as it is now. Even after the six-month process of dealing with the primary problem of PANDAS, we still would have months after that to get him off the meds intended treat the symptoms that should already be gone. Dr. Chrusciel is working with us on a plan to begin the weaning process, and we are really thankful for her concern and willingness to cooperate with our plan, even though it’s contradictory to her advice. We are starting with weaning Topomax, which is one of the first meds Tyler started and which we suspect is a big instigator in Tyler’s increased distress. If all goes well, he will be off the Topomax in 3-4 weeks, then we can start cutting down on the next meds one at a time.

Finally, this whole process will be very difficult for us all. It will be hard on Tyler who, despite his newly-developed defiant characteristics, will have to cooperate in continuing to take his medications and drink Pediasure. Lately, when it’s time for his meds, Tyler shakes his head no. But after our insistence, he eventually consents. If things progress to a point that he ever begins refusing meds, nutrition, or water, we will be forced to admit him somewhere. I’ve explained all this to Tyler in several of his calmer moments, and he begrudgingly agrees to do his part.

This process will also be hard on Brian and I as we have to physically protect ourselves, our children, and Tyler from himself. It is devastating for Brian to wrestle his son to the ground while his boy spouts out in anger, hitting, and biting. It’s heart-wrenching for me to watch. Last night they writhed in a tangle on the ground all through the midnight hours, Tyler trying to fight his way loose for further destruction and Brian holding on to him to protect him from himself. Both were crying out desperately in tears for help. It is heartbreaking to me that Brian is the one who will bear most of the brunt of dealing with Tyler because he’s the only one strong enough to restrain him. Since I threw my back out last week, I’m in no position to try to physically manage Tyler for a while. It would be easy to become angry with Tyler as he assaults and yells at us, and yet our hearts break for him.

I don’t yet know how our other kids are going to respond. Things have progressed so quickly, and they’ve spent the last few days shuffled around between cousins and grandparents. They don’t yet realize the scope of how bad things are, and to be honest, we haven’t had the energy to even think of how to help them more. My parents will be very involved with the process, and my mom is a school counselor so she will be free this summer to spend much of the time with us. That will greatly help out with the other kids.

Obviously, we need your prayers. Please be praying with us for these things:

1. Tyler’s complete healing, both from the root neurological problem, the symptoms of his illness, and the complications of medications.
2. Wisdom to make the right medical choices for Tyler.
3. The weaning process to go much more quickly and easily than expected.
4. The safety of all of us from Tyler’s destructive behavior.
5. That Tyler would be able to go to sleep at nighttime. The last few nights he’s become highly agitated just as the rest of us have reached the point of exhaustion. We can’t handle night after night with no sleep.
6. That Tyler’s ability to speak would return. He used to love to talk (sometimes more than we wanted him to!), and we think that if he could communicate again, much of his frustration and anxiety could be expressed verbally rather than physically.
7. That Brian and I would have the supernatural resources to love Tyler well, love each other well, love our other kids well, and be more in tune with God through this process. The last few days have been so stressful that it’s hard to even know what to think or do or even notice the needs of each other. We need the Lord’s help just to get through each day.
8. For God’s comfort and provision to be abundant for all the others directly involved, especially our other kids, Annalisa, Amberlyn, Josiah, Nathaniel, and Ashley, and my parents, Jack and Bonnie Spratt.