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.