Oh, My Heart

My heart is hurting, friends.

Tonight, Catherine had a tic so bad, that lasted so long, she spilled her plate of food, which contained ketchup, all over herself.

She was distraught afterward. Since I have been google researching the shit out of this disease, I have learned a ton. And all of a sudden, Catherine makes sense.

Before, we had used the canned terms brat, possessed, and out-of-control. Now, I use the term PANDAS.

It's a fine line to walk. She's three. She also exhibits typical threenager behaviors. But on the other hand, she has something else that is attacking her brain, causing her to act differently at the drop of a hat. If you think about it, antibodies are constantly moving. So from day-to-day, Catherine can exhibit different behaviors. I made a video today, for a Facebook page I am making to hopefully help others that are deep into this hell like we are, and I just hit record and talked. For 45 minutes. I didn't really have anything planned, I just started at the beginning. For 45 minutes, I talked, and at one point, I equated what was happening to our family to emotional abuse. The abuser will say horrible things, and then the next minute, tell you they love you and they don't want you to go. It is a constant up and down. This is life with Catherine.

Today, Catherine's tic was so horrifying to watch, my heart physically hurt. I had to get up from the dinner table and compose myself in the bathroom.

I am a classified pity-partier for about 24 hours. If something terrible happens, I allow myself to be upset about it, but after that 24 hours, I rally. And I usually rally hard. I think Catherine's story is proof of that. Every frustrating doctors appointment, I would feel terrible that no one seemed to be helping us. But then I would rally. Maybe it's this, or maybe it's that. I never imagined it would actually be something like THIS. I never imagined that THAT would be the cause of all of our emotional and physical turmoil. As parents. As a family. And especially, for Catherine.

But I have not rallied. As each day goes on and I notice symptoms of this disease that I had not noticed before, or had thought of as "weird," I now know it is not Catherine's fault. That's what makes this difficult.

One of the symptoms is "emotional lability." I know what those words mean, but I could not for the life of me, understand what that would look like. I finally saw it today. She was walking her stroller around the cul-de-sac, happy as a lark, and the next second, she was demanding that I pick her up and carry her inside. We were 20 feet from our front door. She kept crying, "puppy, cold" meaning she wanted her puppy and her blanket. I told her to walk inside and get it. It was like she couldn't bring herself to go inside. She threw a massive temper tantrum and from there, I picked her up and walked her inside. I couldn't help it. This is my little girl.

Once situated on the couch, she calmed down and BOOM, it was like someone threw the switch and she was happy as a lark again.

Another symptom is severe anxiety, including separation anxiety. She is obsessed with where I am all the time. She throws tantrums like none other when I have to go out to my car to get something. If I am in the other room, she needs to know I am there and will physically check on me. If she wants me to sit on the couch with her, and I don't, she goes into hysterics. Again, it's like that emotional abuser component of it. I need my time too. I need a place to go where it's quiet, away from the kids every once in awhile. But every second that I am home and Catherine is there, she is with me every step of the way.

Another symptom is the tics. Think: Tourette's syndrome. The hitting, swearing, head twisting kind. This is Catherine. Tonight, she shook her head back and forth, looked down and to the right while opening her mouth wide, then gave a facial grimace, and then shook her shoulders up and down. This caused her to spill her plate. It was maybe 4 seconds long, but as I watched it happen while everyone else was playing in the yard, I was shocked. This was happening right before my eyes and there is nothing I can do about it. 

Since our diagnosis, I have talked to a few friends. "What I read about it, penicillin cures it, doesn't it?"

No. Penicillin is a bandaid. It lessens the effects because it does the work for the antibodies. So the antibodies chill out a little bit. This also causes them to die off, bringing her strep titres down. What is going on with Catherine is an immune overreaction to illness. Penicillin does not help the immune system. It helps stave off what the immune system reacts to. But that is not a guaranteed. It is not a for-sure thing that will cure Catherine.

I have watched countless websites, read countless articles, and have slept a total of 4-5 hours a night, because I am up so late researching and searching for other parents out there. I have connected with parents from California, New York and even right here in Des Moines. With the parents in Des Moines, it seems the only doctor who acknowledges it and treats it, treats it with penicillin. And behavior therapy. And a psychiatrist who dopes up their kids. I don't want Catherine on Ativan, or anti-psychotics, or mood suppressants. I want her to be a little girl.

I am at war with myself. On one hand, what if Penicillin is the trick? What if that really helps Catherine? But what if it doesn't? Then it's another year on pencillin. And then it doesn't clear up again? Another year. But modern medicine isn't always that great. It can wreak havoc on your body, and from the parents who had their kids on long-term penicillin, it messed with their white blood cell count so terribly, their children actually got more sick. MORE SICK. One parent I connected with said they are on year 5, with not a lot of hope in sight. Each time her kid gets sick, the symptoms come back even worse than the time before. And each time, they treat with antibiotics, and her kid gets "better." But not actually "better," just an improved version. Not a healed version.

I connected with another mom in New York, whose son went undiagnosed for EIGHT YEARS. Eight! She said she had exhausted all her resources, had gone to every pediatrician, and no one had diagnosed it. Finally, she and her husband went completely off the wire and contacted a homeopath. In the first appointment, the homeopath diagnosed her son. In the second, she created a timeline of events. In the third, she prescribed Bella Donna. If you're familiar with it, it can kill you. Read: it's poisonous to the point of simply stopping your heart. He takes one dose once every four weeks. She said the other day she finally "met" her son for the first time. And he is sweet and charming and has a sense of humor. And he SMILES! She said life is so much better after the diagnosis 10 weeks ago, she could scream it from the mountain tops. I only hope I can do the same for Catherine.

So I researched Naturopathy and Homeopathy, and looked into what insurance covers.

NOTHING. Insurance covers nothing. This would be all out of pocket.

Thank God for savings, right?

So do we want to chance the penicillin, which is a $10 co-pay for each visit and prescription refill? But it might not even work? Or do we want to seek out a Naturopathic doctor and shell out thousands of dollars for something that we aren't even really sure about?

The more I think about it, the more I don't want Catherine on medications. She has been on meds for several years, just as simple as basic antibiotics and Miralax. But at the same time, what if it doesn't work? We will have put that into her body for nothing?

I am frustrated. I am exasperated. I am really, really, REALLY sad. This is my kid. You only want the best for your kid. You only want your kid to have a normal life. You only want your kid to have a bright future. Right now, that is not looking good for Catherine. Remember, each time they get sick again, the symptoms come back two-fold. But your'e thinking, "It's P for pediatric right?" Wrong. It's P for Pediatric, because no one has really studied it past the age of 14.

So think of where we will be in a couple of years? A decade? Catherine will be thirteen and in middle school. And middle school sucks for girls. SUCKS. I can't imagine having a facial grimace tic and a strange humming tic in middle school, let alone trying to find your place in the world.

My heart hurts, friends. It hurts for my little girl, who I, too, have never really met. It hurts for my family, and especially James, who doesn't understand why Catherine flies off the handle. It hurts for Drew, who loves playing with her, but is shocked when she hauls off an hits him. It hurts for me, for trying to navigate this crazy disease. It hurts for Eric, who is trying to keep us all together.

It hurts. I hurt. I love my daughter, and James and Drew, more than life itself. I cannot imagine life without them. But I can't imagine life with this disease. When we go to the doctor, we are ill. We get a prescription, we take it, we get better. That's not the case here. This isn't fatal. It won't kill her. But she might not come back from this. I may never actually know who she is.

I am humble enough to say I am no doctor, but I am also smart enough to know that this is not going to be easy. When we got a diagnosis, I thought, "YES! THIS IS IT!" And then I began researching. And I began to hear horror stories. The doctors tell me to stay off the internet. This doctor? He told me to research everything I could. He said it is not a well-known disease, and symptoms manifest themselves in dozens of ways. So, research I did. Maybe because he didn't want to tell me this is not going to be a good thing for our family?

This disease causes anorexia, homicidal thoughts, suicidal thoughts, hallucinations, tics, ADHD symptoms, OCD symptoms, ODD symptoms. This disease robs me of my baby girl.

Maybe I will go live with my Facebook page, maybe I won't. I started it as an outlet, much like this one. But I don't want to share this blog with many. I would rather keep it close to my heart. Because like anyone who is vulnerable, I don't want to share this. I want to share the help I am seeking for my little girl, in order to help someone else. I want to document all the things on Facebook in a much easier way than a fricken google document. I want someone to trip over my page and say, "YES, THIS IS MY KID TOO!" Catherine is at the very, VERY beginning of the "age of onset" in the eyes of doctors. But I firmly believe it started with the ear infections when she was 18 months. I wonder how many others, most likely with an autistic diagnosis, are actually PANDAS kids? On my Facebook page, it's told through her eyes. Her eyes told the story of a very sick little girl. The eyes started when she was 18 months old. They are glossy with dilated pupils. Add in the constant moving and tics, she looks like a tweaker. And it all started, overnight, with her eyes.

I am scared. I am tired. I am beaten. I am worn.

Pray for us, friends. Pray for us.