Giddy over Awareness! Finally!

It's after 9 PM and I should be getting ready for bed. But I'm sooooo excited! Tomorrow is the FIRST ever PANDAS/PANS/PITANDS Awareness Day. 

My son is 12. He became sick almost overnight when he was 8, going on 9. We had no idea what was going on. He was suddenly depressed, tic-ridden, living some unspoken nightmare. We actually wondered if someone had abused our son. We didn't know then that a bacterial infection could result in such a horrible illness.

And that's why I have this blog. To speak out in the hopes that our words and experiences will help another child. Our child is on his way to recovery. It's possible, but first parents and doctors must know that PANDAS and PANS exist. 

Now, 18 U.S. states, 4 cities and the country of Italy have proclaimed Oct. 9 as PANDAS Awareness Day. I just came across this video and it's a must-see. 

Wear black and white tomorrow. Put out black and white balloons. Tell people about this disease. You just might save a life. 

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.

My Son, the Iceberg

Copyright@L. Kilion; This article may be printed and shared.

What you see on the surface is not at all the person my son truly is. He fights an invisible illness to which many are blind. But what many people also miss is the strength and perseverance that lie within him.

My son was placed on homebound status at school last November. He is immune deficient and suffers from PANDAS (autoimmune psychiatric disorder) as well as Lyme Disease. He shows a pattern of faring better after receiving an IVIG, then returning to school, only to be bombarded with an army of germs. This leads to a renewal of symptoms plus heaps of stress which in turn leads to more symptoms and school refusal. 

My son's district has about 30 students in each class. But even with a class of 15, an educator would find it challenging to help a child like my son. I know. When he was not this sick, or when we just didn't know better, I took my child to my own school with me. Even then, he had needs: difficulty using scissors (a skill that waxes and wanes depending upon his health,) difficulty tearing paper, challenges with visual/spatial issues (even with fun, creative, artsy projects,) mental fatigue. 

If I were the teacher of a child with PANDAS, how would I view him? What would I see?

I might not know this child had any huge issues if I just saw him occasionally or had just met him. Even family members, upon seeing my boy on a good day, have trouble believing that he's truly as ill as I say. This kind of thinking does a lot of damage, not only to me, who is fighting for his health, but to my son as well, who shows a strength of character that few people will ever possess. Give the kid some credit for being a warrior! 

My son, like all people, has good days and bad days. But his days are so extreme, that he really is like a different person from one day to the next. This is what I might see:

Good Day, Kid A:  

If I were his teacher now, this is what I'd see: Kid A is a sweet, eager-to-please, handsome boy with big brown eyes. On a good day, I'd see that he's a good reader and likes to write. On a good day, I'd see that he struggles with math although he does recall many of his multiplication tables. On a good day, I'd see that he has some challenges with word recall and verbal expressive language. I'd see a child who gets along well with others, who is liked by his classmates, who is responsive to suggestions from me. I'd see that he has many ideas and can take on leadership roles. That he has a sense of humor. That his ideas are above grade-level and that he's a deep thinker. I'd see that by mid-morning, he's tired, and by lunchtime, he's mentally done. And physically hurting, although that wouldn't stop him from going to P.E.

So-So Day, Kid B:
I'd see a child who isn't paying attention much, but in a quiet way. So I might put a hand on his shoulder if he wasn't averse to that. Or ask him about his project. I'd tell him I would check back with him in a couple of minutes. I'd modify his work, see if he needs assistance. I might notice that when working in a group, he's the clown and isn't really doing his share of the work. I would see that his note-taking ability is extremely limited and that his hand-writing looks pained. That he takes many breaks from class. That he can't recall math facts. That he rubs his eyes a lot, which twitch, especially in the afternoon.

But what I wouldn't see on a so-so day is even more important. This child is an iceberg, and an educator just sees the prettiest part. What is below the peak of the giant iceberg is another story. This child is struggling to appear normal on the outside. He's trying to hold back his tics all day and this effort distracts him from academics. What I wouldn't see is that he has OCD and feels totally uncomfortable sitting in his chair with his group, because he must sit with his back to the wall. But because he knows that these OCD thoughts are not "normal," he won't tell anyone. What I don't know is how sad he is and how he's marbleizing his face so that he doesn't cry. What I don't know is that he hasn't slept well for nights. That he has separation anxiety at night and even though he's back to sleeping in his room after being in his parents' for many weeks, he is miserable. What I don't know is that he doesn't eat well; his sensation issues turn him off to many foods. What I don't know is how envious he is of his sister, his peers. How he wants to very much to be the regular kid he pretends to be.

What I might notice is that he hasn't learned that much today.

Bad Day, KID C:
If this child was forced to come to school, this day--and the only way to get him to school is to physically carry him out of the house--I'd see him slapping his arms and legs because slapping himself is a compulsion or tic. I'd hear him yelling out when the sensations, even regular classroom noise, gets too much for him. 

And when I rush to his side (remember, I'm a regular classroom teacher--I can't act like a parent and hold him, rock him in front of the class or privately,) his stress level increases and he suddenly has throat-clearing tics. On a bad day, he gets very angry with another student and declares that this friendship is over, or even threatens him verbally. On a super bad day, he lunges at another student. On a super duper bad day, he leaps from desk to desk and hisses at me. And afterward, cries from remorse.

And of course, on a bad day, this kid can't learn academic subjects.

The only thing he can learn is whether or not he can trust me and the educational system.

I want my child educated. I want him to have every opportunity in life imaginable. It's enough that PANDAS and Lyme have robbed so much of his childhood. He dreams of going to Hawaii and studying to become a marine biologist. Dreams change. I know that. But we still need to believe in him as a student. We need to be able to find a way to meet him where he is and help him find the path to education while his doctors help him along the road to health. I just don't know that our educational system is set up for this. And as a regular classroom teacher, I'm in it. 

Lyme on the Brain

I move the phone from the kitchen to the dining room table and only when I notice it there much later do I recall that I had intended to make a call. I find a paper on which I wrote that my son's tutor is coming today at 2:45; I had completely forgotten and hadn't told anyone.

This is just one afternoon. 

I let filtered water flow into the pitcher while I set the table and pull food out of the microwave. And I forget the water flowing into the pitcher until it's pooling up on the counter.

This happens three days in a row. Really?

This is so not like me. No, it's not me at all.

I'm not claiming that some alien has taken over my body. But this doesn't feel like my competent self. Which kinda shakes me up a bit. I'm a responsible, more-than-competent person and I'm letting a lot slide.

I used to be able to super multi-task. I was the one who fast-walked two babies in a double jogging stroller, with an 80 pound German Shepherd on the leash beside me and my cell phone to my ear. While doing a crossword puzzle in pen! (Just kidding about the crossword puzzle.)

Is this a facet of Lyme Disease? My symptoms are very subtle. And I'm grateful for that--I don't have crippling joint pain. But what about my mind? Is there a shadow slowly moving in? A Voldemort-type dark cloud?

Could Samento stir up biofilms of borrellia? Was I like this before I began Lyme treatment-and if so, for how long? Why didn't anyone notice?

Then, again, maybe the stress of saving a child with PANDAS/PANS and Lyme finally got to me.

My brain is just not right. Who are you, brain? And what have you done with my real brain?

My 12-year old son must feel this way, and perhaps to a much worse extent. He has visual-spatial issues because of Lyme. He has focusing and attention issues. But he's a super bright kid (just read his blog!) It's frustrating.

I'm not drop-dead gorgeous or model-skinny. I can't dance professionally or win a tennis match but I can sing, teach, write, and mother. My identity is wrapped up in being intelligent and creative. I'm still creative but I haven't energy for big projects. My novel is totally on-hold. I'm smart but I feel like my IQ is dipping daily. I'm getting ditzy. Spilling water on the table. Forgetting why I walk into a room. I feel lazy.

My husband and I just watched The Bourne Legacy. (SPOILER ALERT!) The main character takes pills to enhance his intelligence. In that unfinished novel I started twelve years ago, I wrote about memory and skill-enhancing pills. Gosh. I think I might be the one who needs 'em. 

Maybe it's herxing. Maybe it's because I am of a "certain" age.

I am different from me. I reside in my brain a lot. And I'm not liking this one bit. 

My next appointment with my LLMD is in a couple of weeks and I'll ask about this. I think what bothers me most is the insidiousness of this brain-draining calamity. Maybe it's been sneaking up on me for years!  I'm still very capable. No one would look at me and see a different person. It's all in my mind.

Or maybe it is all in my mind. 

Creepshow

I'm full of bugs. 

My body is a huge planet, or maybe an entire solar system, and it's colonized by bacteria. They live in their little huddles, their apartment buildings, and when threatened, dig deeper, underground, into tissues. 

OK--I'm dating myself, I know, but do you remember a horror movie in the early 1980s called, "Creepshow" based on stories by Stephen King?  Now I never, ever liked horror films and I have no idea why I went to see this movie. Images from it still play in my mind all these years later. 

But one picture that continues to stand out, if I choose to think of it, is that of cockroaches crawling out of a man's body. 

Ewwww.

On second thought, am I like that? Full of yucky stuff?

Could one tiny tick bite actually do that to a person? Infect me with zillions of life forms?

Are you smarter than a fifth grader? Because the answer is....YES!

They're not cockroaches in my body...no, but they're scary enough. And they MORPH! 

When the tick first attaches, its saliva, complete with Lyme spirochetes and co-infections, is transmitted into the person's blood.  According to the CDC it will take from 36-48 hours for borrellia (Lyme Disease) to be transmitted. But those of us in the Lyme community, as well as Lyme Literate doctors (LLMDs) know that is a fallacy. For a three-year old treated by Dr. Jones, it took about 20 minutes or less. And some co-infections are transmitted immediately.

Perhaps I was bitten as a child. My mother remembers removing many ticks from me, but my parents didn't know about Lyme Disease in those days. I spent much of my childhood playing in the woods, making forts, picking leaves (they were "money!") and jumping into piles of freshly raked leaves. Lying back on the grass and gazing at the deep blue sky, the snowy clouds. Rolling down clover-covered hills.

Yikes. Idyllic? Umm, in a world without bugs, yes. 

Both my kids have been diagnosed with Lyme. Did I give it to them? Who knows. Again, the CDC will not publish anything yet that says that Lyme can be congenital. But if you do your research, you'll find that it can be. In fact, many people believe that it can also be sexually transmitted. After all, it comes in spirochete form, just as syphilis does. 

So, the Lyme is in my body. It's in corkscrew form but then it converts into biofilms and what University of New Haven researcher Dr. Eva Sapi calls, "round bodies." It's an intelligent, tough little bugger that has survived for thousands of years. 

Kill it.

Get it out.

Granted we have bacteria in our body that is beneficial. We don't live in isolation. But borrellia and company are parastical. They give nothing back. They're takers. No reciprocity in this relationship. I want to unfriend Lyme and Co.

That being said, I'm one of the lucky ones. I am fatigued at times. I get headaches lately. Stress comes over me, feeling like a sweater knitted with nettles that is suddenly shrunk on me so that I end up on the floor, my knees hugged to my chest.

Maybe I have a little brain fog and maybe that's just me, my pre-menopausal age, or who knows what. 

But that's it. I bicycled twenty miles this morning and then went shopping.

My son has joint pain and major neurocognitive symptoms. He's had a hard time sleeping for nights now and spent much of this brilliant day curled up on the sofa. A friend of mine thought she'd end up in a wheelchair from Lyme until she had IVIG treatments. She still keeps a cane handy, just in case.

Lyme kills. Lyme causes suicides. Lyme ends careers, marriages, lives. 

So, why me? Why do I have it? And why is my body strong enough to fight it--so much so that enough bands show up on the Western Blot to prove it to the CDC?

Why don't you have it? Aye...there's the rub. Maybe you do.

I would never have tested myself except that my son has been so sick. I thought my fatigue was...well, I didn't know. My doctor once asked if I wanted antidepressants for it (No!) I was later to sent to a rheumotologist (all negative.) Never did they give me a Western Blot for Lyme, and never once did I know enough to ask.

I'll bet there are millions of people walking around with Lyme Disease, with spirochetes and round bodies and biofilms clustering in their bodies, making themselves Oh-So-Cozy. Some people just never get sick; their immune systems are strong enough to combat it all. 

A recent trip to a new internist revealed that she orders a Lyme Test for each patient upon their annual physical, and finds that many people have Lyme. They thought they had arthritis. Or depression. Never realized it was Lyme. Now I didn't ask if she orders the ELISA (worthless!) or the Western Blot (much better.) I didn't want to get into a medical discussion, given that after a year and a half of reading articles and patient comments, I know more about Lyme Disease than your average infectious disease doctor. And if there's one thing many doctors and nurses don't like, it's the patient telling them what they should know, however nicely.

That's pretty sad, huh? That I, who never went to medical school, know more about Lyme Disease (and PANDAS!) than most doctors? What does that say about our society?

So, where do I go from here? I guess I'm living in a real-life Creepshow. What Stephen King could do with this! 

It's fighting time. Hit them with your best shot, Samento and Banderol!

Furthermore, if someone as brilliant and active as Dr. Eva Sapi can suffer through Lyme and then proceed to be one of our foremost scientists, I can do what I must do! 

I'll write about it.