When Puberty Goes Bad

This is my fear now: that my son's miraculous recovery will go bad once puberty really hits. It's happened to others. It's happening as you read this. Some child who has been doing better has had a sudden recurrence of symptoms. Psychotic symptoms. Suicidal thoughts and talk. And there's nothing we can do about it. 

I breathe.

I am so fortunate. Three years ago, my son was 9, and we'd been dealing with PANS for nearly a year without knowing it. We were throwing mood stabilizers and SSRIs at him, trying to treat his depression and suicidal thoughts.

Two years ago, he fell apart as soon as he returned to school. We didn't yet correlate that school = germs = autoimmune response. We had just received the PANS diagnosis and we had him on antibiotics. We didn't know yet that he also had Lyme Disease and was probably reacting to all the bacteria dying off in his little body.

One year ago, he broke his arm shortly after having an IVIG that brought him back to us. He had returned to school and was exposed to germs. He had migraines hourly. Ticced and raged all day. 

We had to pull him out of school. High-dose IVIGs were helping...for a while. We ultimately changed around medication, put him on a strict diet of gluten-free, yeast-free, dairy-free, peanut-free, oat-free, egg yolk-free, etc. foods. Treated for Lyme. Treated for PANDAS. Treated for brain inflammation. Added propranolol.

And saw a change. 

My boy continues to have immune deficiencies. He continues to tic. He continues to have OCD, although some of that OCD appears in him having to take a shower every morning, which does not distress me at all. One germ, one back ache, and he's not well. 

But from being a kid who could not handle water at all, he's now washing dishes (yes, our dishwasher broke and the money that should've been there to fix it has gone to pay for all the meds and supplements that everyone in my family has to take.)

He's 12 and he's happy. He's now going to sleep in his OWN room! He's staying in his bed all night. I count my blessings. He's playing with friends...friends who know that he cannot be around them if they are ill in any way. My son has best friends who are like brothers to him. What a gift.

But I fear. When he truly goes through puberty, when he hits that growth spurt around the age of 15 or so, will he be OK? Is this "recovery" a shrinking oasis we've reached? Or the promised land? What effect will that rush of hormones have on him?

Funny how I define recovery. Tics? No problem anymore. Son, don't apologize for that loud throat-clearing tic. It's not a big deal. OCD? Yes, you can use the plastic fork. You can sit at that end of the table. Not a big deal.

Happy? Cool. Doing schoolwork? Fantastic. Able to see friends? Magnificent. Going to sleep on your own, giving hugs freely, being nice to your sister? I cannot ask for more.

The problem with these diseases is that so little is known about them. By the time a lot of research is done, my child will be an adult. Genetic testing, Lyme studies, research into encephalitis...we need all of this. Needed all of this a long time ago. 

I don't want my son to end up in a psychiatric hospital someday. I don't want to lose him. But I'm also aware that he's one of the more fragile children to suffer these diseases. Although, once upon a time, I think he was fine.

So, I treasure the moments I have with him. Mint each memory into my mind. I have a loving boy today. One who likes to listen to, "What the fox say...." with his buddies. One who earned the right to watch "Skyfall." One who responds to the consequences it pains us to give. A boy who asks me to cuddle him because he wants affection and not because he's so sick he needs comforting.

And we protect him as much as possible. Can I stick him in a bubble from the age of 14 until he grows up? Can I send him to the moon where there are no viruses? How do we save our kids from themselves? 

Research. And awareness. I'm grateful for each person who has done anything to increase awareness of these diseases, all those parents who wrote in to their states, requesting a proclamation to declare October 9 to be PANDAS/PANS/PITANDS Awareness Day.

The list grows....Arkansas, Connecticut, Illinois, Maine, Maryland, Minnesota, Missouri, Nevada, New York, North Carolina, Tennessee, Texas, Virginia, Wisconsin plus Louisville, KY and Lexington, KY. Bravo to all our brave parents. You're not alone.