Parenting PANDAS and PTSD

There are times when I don’t want to parent PANDAS anymore. I’d rather pretend it doesn’t exist. But then things get to the point where I have to address the looming presence of illness in our home again.

All the kids had been seeing a PANDAS doctor up until the summer of 2019. At that point, half of them refused to do any kind of testing (blood tests, etc) to see what specifically needed to be addressed to help them heal, and our doctor couldn’t move forward without having any data. So we took a break from treatment for a few months and pursued other ways of healing.

Some of the kids are responding well to this other, more natural, way of healing. And some are not.

When my twins were toddlers, they would get ear infections constantly. It would creep up on me. Their level of irritability would increase so gradually that I wouldn’t realize it was much harder than usual to soothe and care for them. Finally, it would get to a point where I was losing my mind, and then it would dawn on me that the boys were probably sick with another infection. We’d pack up all their gear and head to the doctor for a check and sure enough, every single time, they were sick. They would get antibiotics, and within 24 hours would be returning to their normal selves. Only then would I realize how much harder it had been to take care of my little boys for the past few days. Only when things returned to normal would I recognize what a struggle it had been lately.

The same thing has happened with my daughter recently. I realized how sick she really is.

For several months, she has had a flare of PANDAS symptoms: an increase in tics, skyrocketing anxiety, sensory issues that have gone bananas, feeling like she needs to pee even when her bladder is empty, OCD, sleep problems, school refusal, constant illness, debilitating anxiety about activities she used to love…the list is endless. I was distracted by my own health crisis, but now I’m healing and able to turn my attention completely to her.

I recognized that my girl was not responding to other interventions since we quit seeing our PANDAS doctor. I added things in like therapy, a tweak of her meds, more academic support. Nothing is an instant fix, so we have had to wait a few weeks after trying each new intervention to see if it would work. Weeks have turned into months, and my baby is tanking. I decided we need to have some PANDAS Doctor eyes on her again.

We’re seeing a new doctor but in the same office as our old PANDAS doctor, so they are familiar with our family. My girl was a hot mess. When I picked her up from school, she complained that her throat hurt again. She had a low fever too. Stupid germs. They make her flare constantly.

The doctor was fantastic. He has new ideas of things for my girl to try…assuming she can overcome her anxiety about pills, liquids, and powders with weird textures, and cooperate with the things the doctor says will help her heal. This doctor is smart and compassionate and cutting edge and I can tell he’s going to lead us to new places on my daughter’s health journey.

But wow, that appointment sucked the life out of me. Trying to keep my lethargic brain alert enough to grasp everything the doctor talked about was a chore. I can’t imagine how parents who are new to PANDAS must feel at these appointments, because I’ve been doing this for years and while the science is fascinating, it is overwhelming. It’s especially difficult when you have a sick, crying child whimpering on your lap, you’re trying to take notes with one hand and rub your child’s back with the other, all while trying to comprehend the science that has changed even since you saw a PANDAS doctor just months ago.

My girl needed to get a blood test and a throat swab for strep. She’s 10 years old-- past the “just hold her down” phase. Instead, we have to get her on board before any testing can be done, which is virtually impossible due to her extreme anxiety. This is phobia-level anxiety, not just the normal reluctance to have a blood test or throat culture. Picture panic attack. Times a million. That’s my girl when faced with testing.

Enter our favorite nurse of all time, Renae. Renae is literally an angel on Earth. Just looking at her, you can see that. But if you have the honor of knowing her, sheesh. She’s like a human made out of confectionary sugar. I mean she is just…there are no words. She’s the kindest, most compassionate, beautiful soul. When our older boys were getting daily treatment for their PANDAS, Renae was the one who kept them sane. She’s a world-changer.

Renae has a special way about her that makes her ideal for dealing with kids who have anxiety and need to get poked and prodded. She started bonding with my hot-mess-of-a-girl. It happened so slowly that my sweetheart didn’t even realize she was falling in love with her nurse. She had spent the whole time I spoke with our doctor crying into my shoulder about her sore throat. She had been holding it all together at school all day, and realized that this appointment was about how to help her, and she just melted into a puddle of tears. Renae picked her up and put her back together.

We spent an hour talking to the doctor, and an hour and a half trying to get a blood test and strep test. My baby cried the whole time. She fell in love with Renae, but cried as she loved. Renae brought her numbing cream for her arm to help with the pain of the poke, if we got to that point. She brought my girl an ice pack for her warm, aching head. She brought a cup of cold water to soothe my baby’s throat. She genuinely cared for my girl, and even though she was panicking, my daughter recognized that. She could tell that she was being loved on.

My job was to sit next to my baby and try to cajole her through her anxiety and into cooperating. Sometimes my child’s anxiety feels like my full-time job. It’s gut-wrenching and debilitating and frustrating and so painful on every level. I can feel my kids’ emotions, almost stronger than they experience them. So not only do I need to help them find a way to navigate their anxiety, but I have to do that while experiencing their anxiety myself. And not fall apart. That’s the hardest part- keeping up my brave face when all I want to do is gather my girl in my arms while I weep for the suffering that she is experiencing and run far far away from anything related to PANDAS.

We weren't successful in our efforts to do a throat and blood test. It was exhausting and frustrating, and Renae and I tried our very best, but we couldn't get our girl comfortable and calm enough to cooperate. Sometimes you have to let the best plan go and try Plan B.

Parenting a child who is ill is the hardest, bravest, mightiest thing any parent faces. Our babies should not experience this level of suffering.

I had a reprieve from the pain of PANDAS doctors’ appointment for a few months. I would like to live in denial and not have to subject my daughter and myself to the hell that is treating this disease, but leaving it untreated is a worse kind of hell. This appointment gave me a jolt when I realized, again, how sick my baby actually is. It brought back vivid, painful memories of all the treating of this disease I have witnessed with each one of my four children.

My PTSD is alive and kicking.

My soul was swollen and heavy with grief as I watched the sunset over the crawling traffic on our drive home after that grueling appointment. I was hoping that my daughter would magically escape the depths of the Crazy that PANDAS brings. No such luck. We’re back in the thick of it.

I have hope, of course, and I am certain we will find the light on the other side of this disease. But getting to the light takes so much energy and drive and perseverance and courage and understanding that my child is ill, not “bad.”

The other night when my daughter couldn’t go into her dance class that she has always adored because her anxiety was soaring, she felt like her body and brain have betrayed her. She tried to choke back her tears of frustration and sadness. Sadness because she is letting her friends and teacher down. She is letting herself down. And there is not a thing she can do about it.

Finally I turned to my girl and told her how when her big brother used to have rages every single day because his brain was inflamed from PANDAS, I would hug him when he was calm again and remind him that this angry, out of control boy was not the Real Him. I would tell him every single day that I knew he was not this boy. He was not this thing that PANDAS made him into. I would tell him that I loved him, no matter what. And that he had to trust that I would find a way for him to become the Real Him again, it was just taking some time. My son would always hug me and weep with the relief that he was still loved and understood, no matter what his illness did.

I told my daughter the same thing in the lobby of our dance studio. I took her smooth, delicious cheeks in my hands and told her, “I know this is not the Real you.” She burst into tears. Then she broke my heart. She said in a tender, wounded voice, “But what if it is the Real me?”

Good lord. This Mama thing is killing me. My own eyes welled up and I said to my sweet girl that I KNOW this is not the Real Her. I told her not to worry, we will find the Real Her again. It will take time, but we will not give up. She buried herself in my chest and through her tears thanked me for loving her. She thanked me for understanding her.

Parenting a sick child takes every ounce of faith and will that I can muster. So often I wonder how this level of Crazy can be our life.

*sigh* Bring it, PANDAS. Let's do this. As reluctant as I am to have to jump back into the abyss that is treatment, I’m ready to try again. Anything for my girl. I will find the Real Her.