The Train to Normal

“This train is headed to normal whether you like it or not, bud. You gotta decide what you are going to do about that.” This was the conversation I had with Tyler a couple weeks ago. In the time since my last post, much has changed for Tyler. We are still in a fight, but as our psychiatrist explained, Tyler has passed through the critical, acute phase of his disease, PANDAS. Now it’s a matter of learning the new territory of parenting a recovering child who has psychological disorders caused by the disease.

Several amazing things have happened with Tyler in the last six weeks or so:

• He can talk! We may never know if it was meds or disease or both that caused his loss of speech, but it is back. I never appreciated how lovely the words “Can I play my video game?” are until our child lost the ability to say anything for two months. Every word is precious.
• Tyler is now off every psychotropic medication (that was an interesting and dramatic story that I’ll mention a little later in this post). He is currently only taking his antibiotic and two antihistamines to help calm him. His face seems clearer, his countenance is brighter, and we can see Tyler coming back.
• Tyler’s tics are greatly reduced. He will often go hours without a single shout. That said, any stressful situation brings them back. Transitions (people coming or going from the house, moving from one room to the other, changing activities, etc.) always come with an uncontrollable yell or two. If he is upset and doesn’t want to do something he needs to do, you can count on shouting accompanying that situation, sometimes dramatically.
• His condition has improved to a point that Tyler will be able to go to school when it starts next week. It will be a challenge, and I’ve had multiple conversations with the school counselors, teachers, and administrators so everyone is prepared. Back in April when everything spun out of control, when people asked what they could pray for, my common response was, “Pray that he can go to fifth grade when it starts next year.” It seemed like an utter impossibility back then. We truly have experienced a miracle.
• Today was a huge a day for us. First was meet the teacher day at school—the first time he was surrounded by a crowd of his classmates and teachers. I counted only seven shouts the entire time. Even though he didn't want to be there, he stayed with the family in the gym through the whole hour. Then we had our first real family outing since Tyler's decline. It was at Dave and Busters arcade. It was a noisy, crowded environment, and he actually played games with us and didn't have a single tic. Finally, we attended a church picnic. He stayed off to the side the whole time without joining the group, but he did spend some time talking with a friend, and several other adults who loved him took a few moments each to go talk with him. He never experienced tics during those nearly three hours. It may be a while before he's ready to interact socially the way he used to, but at least he was willing to come and talk with those who approached him.

That said, we are still faced with daunting challenges. Tyler’s personality has changed. Tyler can be very petulant, defiant, and down-right mean, especially to his dad. But he can also be kind, considerate, and patient. We just aren’t used to the other. The anxiety and aggression are very typical of kids like Tyler who have a severe case PANDAS. The disease caused it, but Tyler has to be the one to master it. So now we find our selves in a gray area: the disease has messed with his brain chemistry causing Tyler to not be Tyler, but that led to a psychological/behavioral disorder that Tyler is going to have to learn to control. It’s quite a conundrum. He has an enormous challenge ahead of him: remember and discover anew who God is and who He made him to be, and learn to be stronger than the disease. A daunting task for anyone, especially a child.

Last month, Brian and I had the opportunity to travel to California to attend the Vineyard National Conference as part of the team of people planting the new Crestwood Vineyard church here in OKC. Of course, we were concerned about leaving Tyler, but when we raised our concerns to Dr. Stanbro, he actually insisted we go and wrote a prescription out stating that it was medically necessary for Tyler that we get a break. So, we left the six kids in the capable hands of grandparents. Then all hell broke loose. Tyler refused to take his meds (which is why he is now off all the psychotropic meds, albeit inadvertently), he was a danger to himself, and he even attempted to run away. The time at which he ran away coincided with the meeting time of a prayer group consisting of many of our friends called Bright Arrows. They have been diligently praying for Tyler from the very beginning of this ordeal. When I got the phone call that Tyler had run away, Brian reminded me that it was Bright Arrow’s monthly meeting night, and they happened to be meeting that night in our own neighborhood! (This reminds me of the confident comment God has said to me many times over the last few months when I’m worried about Tyler: “I got this!”) I called one of the guys at Bright Arrows, and they immediately moved to action. It took three grown men (thank you Jeff, Brian, and Greg) to find him, tackle him down, and drag him, fighting, to the house. Then my dad and our friend Jim came to install locks on all the doors and windows to prevent any further escapes. (Thanks also to Connie for all your help during that week.)

When we came home and met with the psychiatrist, he recommended we read a book I never thought would be in the Blount home: Your Defiant Child. So now we are becoming experts in dealing with defiance. However, we feel like we are getting a handle on it. We’ve had to make some hard stands of our own with Tyler (for example, you must take your meds, you will go to school, and you cannot speak cruelly to your dad or anyone else). One time, this literally involved an all-night standoff when we didn’t shut our eyes till the morning sun shone bright because he refused to take his bedtime medicines. Every time we’ve decided to be more stubborn than Tyler, his determination to win at any cost has lost ground. I wouldn’t say he’s compliant now (would we really want that anyway?), but I would say he is showing less and less defiance.

On the other hand, we are also seeing the Tyler we remember coming back to us as well. Last week, we started watching a movie and I couldn’t enjoy it because Tyler was asking me a million questions. “What would happen if . . .” and “Wouldn’t it be cool if . . .” and “What do you think . . .” started driving me crazy for the first time since March. I was so happy to repeat the refrain I said so often before his illness: “Tyler, no more questions! I can’t handle talking anymore!” His imagination is back in full force once again. Maybe one day he’ll remember his aspiration to be an inventor. He has the intelligence and curiosity for it. He just needs to remember who he is.

Tyler has PANDAS. It messed with his brain. Even if his brain chemistry hadn’t been affected, he’s been through a traumatic experience. His view of reality has been distorted, and his sheltered life has been destroyed. He is mad at God, his dad, and everyone. He has started believing many unhealthy lies about who God is, who he is, and what to hope for in life. That is the most heart-breaking aspect of Tyler’s condition now. But, we hold on to our knowledge and experience that lies are just lies. As quickly as they can form, God can crush them with his extravagant love.

So that is where we stand with Tyler now. Here are some prayer points:

• Please pray that Tyler would continue to experience full healing from PANDAS. His physical recovery is going incredibly well, but there is still a way to go. Tics, anxiety, and OCD are still problems. On the OCD side of things, he still refuses any food except PediaSure, and he constantly picks at the skin on his hands, feet, and lips. Furthermore, unless the Lord heals him from the disease, he will always be at risk of his symptoms returning worse every time he is exposed to strep.
• Please pray for his ability to cope with school. Social anxiety is a problem for Tyler, and we are particularly concerned about recess, PE, and lunchtime—the least structured and most socially interactive aspects of the school day. The school is making arrangements for him to be able to go to the counselor’s office or nurse’s office when he experiences extreme anxiety or his tics are out of control.
• Please pray for his academic performance at school as well. He missed nearly half of fourth grade, and he was literally incapable of everything, including speech, for several of the last five months. He will be behind. Also, typical of kids with PANDAS, his handwriting his nearly illegible. We will probably have to figure out what accommodations will be helpful for Tyler as we go. This is new territory for all of us.
• Pray for the relationship between Tyler and Brian. For whatever reason, most of Tyler's aggression is directed toward Brian. He still tells Brian he doesn't like him and he hates him. This is coming from a boy who adored his daddy more than anyone else on the planet. We know these feelings stem from lies from the enemy, but Tyler feels them so strongly. 
• Most of all, pray that the God of all peace will invade Tyler’s heart—that Truth would ravage the destruction caused by the enemy’s exploitation of Tyler’s mind during the vulnerability of brain disease.

On a final note, I’d like to apologize for not writing another update sooner. The last several months have represented a pain unlike anything I have ever personally experienced in my life. When I started realizing the publicity my blog was getting from friends and strangers alike, the vulnerability of such exposure and potential criticism was uncomfortable, to put it mildly. I had to wrestle with a fundamental question that encompassed much more than Tyler’s struggle with PANDAS: am I willing to live my life exposed for all the world to see? They will see the good, the bad, and the ugly, but they will also see Christ in me. Is the payoff of representing Christ and His glory worth the pain of exposure? It took me a while, but I’ve decided the answer to that question is yes. It’s worth it.

Even when Tyler was desperately ill, we never lost sight of the goodness of God. Even when Tyler’s body was ravaged with a disease that left him thrashing and flailing dangerously from waking moment to the relief of exhausted sleep, we kept praying for the sick, we pursued a dream God put in our hearts to see a Vineyard church planted here in OKC, and I even managed to ghost write a book on God’s voice. Brian continued to pray for the sick, whether it was through planned outreaches or, most often, as he goes about his day. He is always experimenting with new ways to reach more people with God's love. His latest adventure is "Hotdogs and Healings" where he takes a team of people to apartment complexes to serve free food and pray for any needs. As a result, they have seen dozens of people healed just in the last few weeks. My point is this: we will never escape tension. Yes, Jesus heals, and yes, my son suffers from PANDAS. Yes, God’s kingdom has come in power, and yes, his kingdom has yet to come. So, we say yes to all the yesses. Yes to God’s miraculous healing of hurting strangers on the streets of OKC, and yes to God’s grace as we walk out Tyler’s healing day by painful day.

Yes to God often also means yes to mess. It's not easy to live in messy tension. Sometimes it downright sucks. But a "yes" to God's mess is so much more rewarding than a "no" to protect my self-image or cover my pain. So now, we hop on this train to normal. And in the meantime. . . let’s get messy!

Progress

It’s taken three weeks, but we have almost completed Tyler’s bedroom and Brian’s office next to it. We finally got the AC unit installed yesterday, so after we finish some details, Tyler will be able to move into his rage-proof room today! He can kick and scream and bang and throw to his heart’s content without us having to worry he will hurt himself or anyone else, especially Brian.

But that’s not the only progress happening around here. We are incredibly reluctant to say that Tyler’s condition is improving, because just when we say that to each other, something dramatic happens with Tyler that let’s us know things are most certainly not improving. However . . . knock on wood . . . I think, maybe, possibly, hopefully we are actually starting to see some indicators of improvement in Tyler’s condition.

It’s been six weeks since his hospitalization when he had the IVIG treatment. Five weeks since he started his high dose antibiotics. Three and a half weeks since we started weaning the psychotropic meds (one is done, another almost done, and one more yet to start weaning). And I know there are hundreds of people praying regularly for Tyler’s healing. Somewhere in the mix of all those factors, Tyler is slowly turning a corner.

Let me say off the bat that we still have a very long road ahead of us. The improvements we are observing are very significant baby steps in a marathon yet to traverse. We are grateful for every glimpse of hope, but we also have to be realistic about the challenges we still have yet to face.

In the last week, we have seen bits and pieces of the Tyler we know coming back. Here are some highlights from this week:

•  During one of Tyler’s outbursts of anger, rage, and attack, he managed to accidentally hurt his fingers by getting them slammed in a door. The injury put an abrupt end to the rage and quickly turned to tears of pain. When I re-entered in the bedroom after running downstairs for ice, I was stunned to see Tyler sitting in Brian’s lap. Brian was stroking his hair, speaking comforting words, and praying for him. Tyler was actually letting Brian touch him! I was sad he was hurt, but at the same time couldn’t hold back my excitement as he sat there with his dad for about fifteen minutes before he laid down to go to sleep. Touch!
•  Tyler asked to have his best friend, Levi, come for a visit, whom he hadn’t seen since May. When Levi came over, he showed Levi his new iPod. We bought it for him about a month ago, but he would get so angry about any imagined flaw or someone else touching it that he hasn’t wanted anything to do with it. When Levi came over, they sat together (with very little yelling going on) and played on it. They also played Tyler’s 3DS game, something Tyler used to spend hours on before he was sick. It was the first time Tyler showed interest in any activities he had enjoyed before his sickness. Since Levi’s visit, he’s been playing video games everyday. I used to get on to him for playing his games too much, but now I’m so happy to see him doing it I’ll let him spend as long as he wants!
•  He also asked if he could go places outside our home this week. He wanted to go to the video store to rent some games, which we did, and he also asked if we could make plans to visit his friends Levi and Eythan at their homes.
• He pulled out his Buzz Lightyear and Woody toys yesterday for the first time since March. They have always been favorites, and their reappearance made me smile. He also sat almost completely quiet through several television shows or movies this week.
• He showed empathy for the first time. When his brothers and sisters managed to catch four frogs one evening, Tyler started writing on his iPod “Let frogs go.” He was afraid they would die in our makeshift cages. He got really upset when one of the frogs did die. Tyler was such a loving boy before; it’s nice to see pieces of this side of his personality returning.
• Thursday, I was at the library trying to get some work done when something very interesting happened. Tyler has been so filled with rage that he has regularly been attacking Brian, sometimes really hurting him. These outbursts often last an hour or longer. While I was at the library, Tyler charged at Brian, and Brian happened to have a water bottle in his hand. Brian threw some water at Tyler, hoping to stop him from the hitting, kicking, and biting. It jarred Tyler, making him even angrier, but it also redirected his attention from the attack. I was unaware that any of this had happened when I got a phone call from home. I answered and heard unintelligible yelling. I knew it was Tyler, and I could tell he was mad. I eventually learned the whole story from bits and pieces gathered from my mom and Brian when I told Tyler to pass the phone to them. But I was amazed! Tyler got into a rage, backed off when he didn’t like getting wet, then he tried a new approach. He picked up a phone, and called my number to tell on his daddy. I know Tyler wanted me to take his side and tell Brian not to throw water on him anymore, but I couldn’t get over the fact that Tyler had just called my phone number! Unbelievable!
• He actually teased Brian once this week. After a couple more of these water-bottle encounters (the only effective method we’ve found of diffusing Tyler’s rages), Tyler started realizing he was losing the battle to continue to use his dad as a punching bag. Then Friday he charged Brian as usual, fists in a fury. But when Brian reached for his water bottle, Tyler pulled out one of his own. And then he let out a mischievous smirk. That little stinker planned his own counter-attack and he was enjoying toying with his dad. He really was in a rage, but he anticipated Brian’s defense strategy and made a counter-move. It shows problem solving, strategizing, and even a form of playfulness we haven’t seen. Of course, the episode ended in lots of anger, yelling, and tears, but it was still encouraging.
• I wish I could have captured the moment yesterday when he saw the new television an aunt and uncle bought for his new bedroom. He was wide eyed, and he smiled! A big smile! Then he spread out his hands wide to tell us what he couldn’t say with his words—yes, it’s a huge TV. The miracle wasn’t that he liked the TV. It was that he even cared. I’m convinced that if he had received this gift two or three weeks ago, he would have given it a look and walked away. He’s started to get excited about things again, even for just a moment. While a few months ago I would have taken for granted that a kid would be elated at such a gift, we don’t take these small delights lightly anymore. Every smile counts in our house. Each one means something to us.

I’d also like to take a moment to say how much we love Dr. Stanbro. Not only is he very skilled in treating PANDAS, but he’s also intrigued by Tyler, and we can tell Tyler fascinates him. This week in his office, Tyler got mad like usual, and by the end Tyler was yelling to Dr. Stanbro that he hated him and that he’s a liar. Tyler’s speech is still hard to understand, but these are frequent phrases for Tyler, so I knew what he was saying. Tyler has become an equal-opportunity hater and lie detector these days, and we just have to laugh about it. (By the way, Mrs. Hubbard, if you are reading this, during this office visit you were also called a liar as well. When Dr. Stanbro mentioned that he’s heard great things about what a smart kid Tyler is, he said we are all liars and he hates us all. Even Mrs. Hubbard lied when she said he’s good at math. You’ve been lumped into the liar category with all the rest of us. J)

So, yes, we are seeing improvements, but there’s still much ground yet to cover. Tyler still cannot speak, though his attempts at speech are becoming slightly easier to decipher. (Either that, or we are just getting much better at understanding his unintelligible speech through lots of practice.) When he tries to write out what he is trying to say on his iPod, the handwriting is very hard to read, so communication is a constant struggle. He still has bouts of anger, frustration, and rage. He often bangs his hands on the ground so much he starts complaining that his hands hurt. He is withdrawn and does not often interact with other family members unless he is trying to tell us something he needs or wants. We still don’t touch him because that bothers him. He continues to refuse any food, though he downs PediaSure and PediaLyte drinks like they are going out of style.

We also believe that Tyler’s rages at Brian are indicators of a panic attack, and we are starting to learn how to manage them. Often throughout the rage episode, he will say “I can’t breathe” over and over, and there’s a clear look of panic in his eyes. When we started using the "I’ll pour water on your head if you hit me" technique, he would just lay wet on the floor in a panic trying to tell us he couldn’t breathe. So we are learning how to help Tyler through his anxiety, to redirect his rage in different ways, and also keep him from hurting Brian. After we manage to halt the rage, we are sometimes able to talk him through the panicky feelings. The challenge is getting past the rage to be able to address the anxiety that fuels it. We’ve tried the water, and we’ve also tried ignoring him. Friday night at dinner, we were all eating at the table when Tyler came over to Brian and started hitting him on the head repeatedly. I went to retrieve the baseball helmet that we had originally purchased for Tyler to prevent him from hurting himself. Brian put it on his own head, and Tyler kept hitting him on the helmet while the rest of us continued talking about mundane things around the dinner table as if nothing unusual was going on. Eventually, Tyler got tired of hitting the helmet over and over while we ignored him, and he walked off to be alone. 

The biggest indicator of self-control came yesterday. When Tyler got his new television, we also knew he really wanted an Xbox game console as well. We told Tyler that if he could go seven days in a row without attacking his dad, we would buy him the Xbox. After he got his Xbox, if he ever attacked his dad, the controllers would be taken away for a day. He communicated to us that seemed like an impossible task, but he really wants an Xbox. We successfully completed day one of no attacks! Woo hoo!

What a roller-coaster we are on! This is a ride we never could have imagined, but God has been so good and faithful to us through it all. Please continue to pray for us all. Tyler has much healing yet to go, and all of us feel the strain of Tyler’s illness in different ways.

For those of you who experience anxiety and panic, I’d like to pray for you now. Jesus, healing king, come and touch these people who also suffer from anxiety. Let your presence come fill their bodies now. I speak healing and wellness to every incorrect chemical process, every disordered habit of thought, and every lying emotion that makes anything seem bigger than God. Let your peace come, and let them taste of your goodness in new ways today. Amen!

A Father's Love

Brian and I don't usually make a big deal over our birthdays and anniversaries and Valentine's Day and such. However, this year, this Father's Day, I want to make an exception. I can't do it through a family Father's Day outing to a restaurant. No gifts. No card even. I'm only able to give my words, which I use today to honor my husband and to express my deepest admiration for a man who has endured unimaginable challenges the last few months.

Several months ago, back when Tyler just had a “burping” problem, before his health spun out of control, I was a little bothered by something. Brian always made a special point to spend a great deal of individual time with Tyler. Of course, there’s nothing wrong with that, but sometimes I could tell the other kids felt that Tyler was getting more of Daddy’s attention. When I brought up this concern to Brian, he replied, “I know I spend more time with him than the others, but for some reason, I just really know he needs it.”

Now I understand that he was right. While I was being prejudiced by my desire to keep things equal and make sure each child felt special, loved, and important, I missed the bigger point that Brian understood. He was sensing something I was unable to see. It wasn’t a matter of fairness. It was a matter of responding to that God-feeling that leads us as parents. Tyler needed more time.

Day by day, month by month, year by year, Brian was weaving a tether of love that bound the heart of this young boy to his father. Every outing to the movie theater, every minute spent playing on the Wii, every late-night tickling match was another strand spun into an ever-tightening bond of trust.

Now, Tyler is fighting the biggest fight he may ever encounter in his life. His brain has been attacked by a disease that is ferocious, terrifying, cruel, and absolutely evil. It has turned him into a frightened, cornered substitution for the sweet, giving, tender-hearted boy we once knew.

When we asked our psychiatrist a couple weeks ago why Tyler couldn’t talk, he gave us a very helpful analogy. It’s as if there’s a tiger with its fangs bared, growling, ready for the attack, right in Tyler’s face. In that situation, he wouldn’t be saying, “Mom, can I have some mac and cheese?” He’d be rendered speechless and would only be able to respond to the fight-or-flight urge. Tyler’s tiger is trapped inside his own body. That’s also why he lashes out physically. There’s such an intense battle, such an extreme anxiety that rises up within him, that he perceives no other option but to fight.

There are times I can see that anxiety mounting. It’s a growing terror that I see in Tyler’s eyes. It spills out through his shouts and banging on the floor. Then when Brian walks in the room, it’s as if all that anxiety that he’s been struggling to hold at bay gets released. He lunges at his father, attacking him, often ending in Brian being forced to restrain him as Tyler kicks and bites with everything in him. The adrenaline coursing through his body gives him strength unimaginable for a child of his size. At times it has taken Brian along with another grown man to restrain him. Brian’s arms and legs carry deep bruises and scrapes from Tyler’s outbursts of biting, kicking, and clawing.

In the aftermath of the outburst, as Brian wonders why Tyler would be so angry at him, I think of that tether Brian so lovingly wove day by day, month by month, and year by year.

When Tyler is tormented by that tiger in his brain, when every cell of his body is screaming out to fight away everything he can to flee the tiger, he sees his daddy. He doesn’t see a man he’s angry with. He sees a man he knows will love him no matter what. A man he can bite and scream at and bruise and scar, and he will not have to worry what that man will think of him. A man he trusts to still care for him and approach him with tenderness even when he’s unleashing the beast inside of him.

Brian embodies love to Tyler. That’s why Brian is bruised. Brian is safe. That’s why Brian’s body is carrying the scars of his love. The analogies to the love of our Heavenly Father are staggering.

So, today, I’d like to say thank you to the most wonderful father I could ever imagine for our children. Brian is strong yet vulnerable. Tenacious yet tender. Firm yet a soft place to land. He’s proven to be that for me for seventeen years. Now, because of our current struggle, I am understanding the depths of that love in new ways. It exceeds more than I could have ever imagined.

I love you, Brian Blount, and happy Father’s Day.

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.

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.