This Update Doesn't Feel Like Much of an "Update"

We seem to be in a stall with Tyler, so it seems strange to call this an update. Update infers that something has changed, and so far, nothing has. He has OK (in comparison to most) days and he has bad days. He's not in a constant decline like he was previously, but there are also no signs of improvement at this time. He still shouts constantly. He still won't eat, but he gets sufficient nutrition through PediaSure drinks. He sleeps sufficiently, but he usually wakes at least once a night because of bedwetting. (This could be caused by the sleep meds making him overly sleepy, or also because bedwetting is common in kids with PANDAS.)

Tyler is still unable to speak and it is very difficult for him to write or spell out what he is trying to say. This is a bit of a quandry to us. Is it the disease that causes the inability to communicate? The meds? The psychological effect of being trapped in his broken body? A terrible combination of all three? He tries to use words to say what's bothering him, but it comes out as complete gibberish. Sometimes we can make out the first letter or sound of what he's trying to say, but nothing more. When we do convince him to attempt writing out what he needs, it is very hard to read his writing. Also, he seems to have much difficulty knowing how to spell what he wants to say. We've tried downloading an iPad app that has common words and phrases, but he doesn't like using it. I think that's because it would require concentration to learn how to use it, something he's reluctant to do. At times, he will get so frustrated with his body that we can tell he wants to say something about it, but the frustration only compounds his difficulty in writing. It creates a heartbreaking downward spiral that usually ends in tears, loud shouts, and lots of flailing his body around.

We are still working with the current diagnosis of PANDAS and treating him with heavy antibiotics. When we saw our pediatrician last week, she defiantly said with a smile, "Look! I'm writing it on the diagnosis sheet. It's official now. I don't care who gets mad at me about it." However, we are still awaiting some of the lab results which would tell us if the culprit to Tyler's illness is one of the plethora of rare neurological diseases that were tested for while we were in the hospital. But for the time being, PANDAS makes the most sense. The more reading we do and the more YouTube videos Brian finds on PANDAS, the more we say to ourselves, "That's just like Tyler." It also makes us wonder how long he's had PANDAS. Is the struggle he's always had with poor penmanship just Tyler's awkward fine motor skills, or is it a display of one of the common signs of PANDAS? What about the chronic sinus infections—were they caused by bad allergies as we assumed or ongoing active strep we were unaware of? His tendency to obsess over that toy he wants for Christmas or get upset when his brothers don't put things back exactly where he had them—are those just personality traits of a kid who likes things a particular way or the signs of OCD that often accompanies PANDAS? What about the school anxiety he would often experience, especially in first and second grade? Is that just a kid who would rather stay at home with mom and dad, or is that the anxiety disorder associated with PANDAS? Maybe all those things are just Tyler being Tyler. At least that's what we've always assumed. None of it seemed unreasonable or outside of normal kid stuff until we started realizing the close ties between each of those characteristics and PANDAS. Who knows. Only time will tell, but it does make us curious.

We continue learning how to navigate this new life we've been presented with. Between Tyler's needs and his constant involuntary shouting, it's a struggle for Brian and I to get work done. (We are both self-employed and work from home.) The other five kids need us now more than ever, though our ability to meet those needs is more strained than ever as well. They get frustrated with each other and us, but they are such sweet, good kids who are willing to put up with a lot. Also, the stress is taking it's toll on our bodies as well. Brian is having much difficulty sleeping, and I've thrown out my back. Summer is upon us and all the kids will be home all day beginning tomorrow, and we hope they are able to cope well with the challenge of being around Tyler all day.

So, in short, this is the most difficult situation Brian, the kids, and I have ever dealt with in our lives. And certainly, Tyler is suffering more than all of us. Prayers still needed! Thank you.

May God blow your mind today with the kindness he shows through those around you. May you see his blessings in the most surprising and unexpected ways. Lord, come close to all who read this. Let them know your goodness, taste of your mercies, and rejoice in all your kindnesses. May we all be aware of your presence with us today.