Ups and Downs

Just when we think hey maybe things are looking up, Tyler has a major crash. Just when we think this is unbearable for him and us, Tyler surprises us with a smile. This teeter-totter we’ve found ourselves on can be dizzying. We need the Lord’s grace to make it moment by moment through this maze we’ve found ourselves in.

Tyler still lives with constant uncontrollable shouting, flailing, rolling, and thrashing around. That happens all the time, even on good days. On bad days, he goes into rages in which he attacks anything and anyone around him. (Thankfully, so far, he’s limited his attacks to adults only, not his siblings.) Yesterday was a good day. Today was a bad day. On bad days, he rolls and bangs on the floor, and he throws anything in sight. He hits and kicks and stomps and bites. His lashes out, especially at his dad, who today is covered in bite marks, scratches, and fresh bruises. Basically, if you knew Tyler before his sickness, imagine the exact opposite of that boy and you have a good description of Tyler now. 

Since our last post, we’ve started weaning him off of the first of several meds. While we haven’t seen major changes, we can say there are the beginning hints of improvement. We do notice occasional breaks in the outbursts. At times we notice stretches of calm, sometimes lasting even 20-30 minutes. He’s been able to sit and watch a TV show or play with a toy for a stretch of time uninterrupted by his ill brain. During these calmer times he continues to occasionally vocalize and move involuntarily but without the agitated outbursts. Ten days ago, he never had a break or moment of calm until he exhausted himself from his rages. While this improvement seems minor, it gives us hope that we made the right decision and are on the right track by starting to wean off some of the psychotropic meds.

Something that I think I haven’t mentioned in previous posts (mostly because it’s gradually snuck up on us) is Tyler’s now-extreme sensory issues and OCD. These are both very common symptoms found in kids with PANDAS. All his senses are overly sensitive. Brian and I now never touch our son except to protect ourselves from him or restrain him from hurting himself. If we touch him or even more toward him as if to touch him, he freaks out and goes into a rage. Likewise, he’s sensitive to sounds. He frequently covers his ears to block out sounds, and when the house gets loud—which is easy to do with six kids—his outbursts go into overload. Sometimes even making eye contact with him or speaking to him will send him into a rage. It’s strange to say that the most loving thing we can do for him is ignore him. While that is the opposite of every parental instinct that screams out to give your son a hug, it’s comforting to know that PANDAS is temporary and he will return to himself in time. He also definitely now has OCD. Any imperfection, perceived or real, in anything sends him over the edge. The slightest blemish on a toy is so disturbing to him that it triggers hours of rage. Also, his insistence that food will harm him, thereby restricting his diet only to PediaSure, is an evidence of OCD.

Last week, we had appointments with both our psychiatrist and neurologist. Dr. Stanbro, the psychiatrist, has extensive experience treating PANDAS, even though it’s a rare and newly researched and often misunderstood disease. We were once again comforted with his humble confidence in Tyler’s diagnosis and plan for treatment. When Brian asked Dr. Stanbro where Tyler was on the spectrum of kids he’s treated for PANDAS, Dr. Stanbro put Tyler in the top two worst cases he’s ever seen. Oddly, this was a very comforting statement. It’s not just our imagination how bad off Tyler is. We’re not crazy to think Tyler’s suffering is extreme, even for PANDAS. It was also comforting to hear Dr. Stanbro’s reassurance that even in the most severe cases he’s seen, every child with PANDAS has been both symptom-free and medication-free within a year of beginning treatment. Except for the fact that, apart from a miracle from God, Tyler will always have to be quickly, agressively, and possibly proactively treated for any strep infection, he will be free from PANDAS in a matter of months. There is a light at the end of this tunnel. With God’s help and daily mercies, we will make it through this!

While Tyler’s body is showing only very slow signs of improvement, there is lots of change going on in our home. During the last week, my dad has made some big changes for Tyler’s safety. In addition to padding the entryway and stairs, he has built Tyler a new bedroom into our garage that is padded on the walls and floor. It’s filled with beanbags and padded furniture so everything in there is very hittable! He’s had the room for about three days now, and I’m pretty sure every inch of it has been hit, kicked, pounded, and thrown or thrown at. It’s a good thing my dad anchored the padded shelf rack to the wall, because Tyler has tried to throw it to the ground multiple times already. The room is finished except for an air conditioning unit. Until that is installed, which should be in the next couple days, he can’t stay in there as much of the day as we would like because of the heat. So far he’s accepted the room, at times even voluntarily going there to get away. We hope he doesn’t start to view it as a prison we send him to when he’s having a hard time.

We are also building a second room into the garage that will be used as an office for Brian and I so we can be near Tyler during the day. Brian and I both work from home, and believe it or not, until now we have been using our large walk-in closet as our office. My dad started construction on the new office, and friends are planning on finishing it out this week. Hopefully, we will have everything wired and set up to start using the office within a week. That way Tyler can spend as much time as he needs safely in his new bedroom, and Brian or I can be in the office near enough to keep a watch on Tyler but also still able to be productive with our time.

We are so appreciative to my dad and the others who have contributed their time and resources to help us make our home a safe place for Tyler. There are people we don’t even know who have been contributing to a fund through family for Tyler’s needs. So far, Brian and I haven’t had to think once about the expenses involved in making these changes for Tyler’s well-being. Thank you, whomever you are. It’s such a blessing to know that Tyler can be safe in our home. To think that the alternative is to institutionalize him in a psychiatric hospital is unimaginable, and we are thankful for the people who have helped make that possible. (Pictures coming soon!)

God is a good and gracious God, and we are thankful for the people who have been Jesus with skin on for us. You are a blessing.