It's a Small World After....

It's a small world after PANDAS/PANS and Lyme smack into the middle of your shoulder blades and then stab you in the gut. You learn who your best friends and family members are, acquaintances fall by the wayside and you make new friends through support groups. 

For a few years, around holiday time, my little family scheduled picture-taking, only to postpone when our child with PANDAS wasn't well. Had we photographed the kids at the time, you might have surmised they were starring in the worldwide wrestling arena. It helps to have a husband who is a photographer. Then again, if we'd hired an outside professional, maybe the kids would have kept it together for the photo session. As it was, we often had to bribe them. My husband prided himself on quirky creative cards that people would hesitate to throw away when February rolled around.

I loved our kitchen in December and January. Every card we received would be taped to one of our ancient wooden kitchen cabinets. I'd be surrounded by smiling faces and wishes for joy.

Last year, however, the PANDAS, etc. worsened. My husband spent his creative energy soothing a kid who was herxing from Bartonella medication. Hence, no pictures were taken, no cards sent.

I suppose I could have created a card detailing the effects of PANDAS and Lyme on a family. Or a card with simply the words: PANSLife.com. Not that I had the energy to send them out anyway. Lyme had sent me reeling.

But the cards came in and lined the outside of my kitchen cabinets, lifting my mood. I loved seeing the faces of children I had known since they were small. Although many of these people were friends from the past, many had no idea that life for us had changed dramatically. I don't include letters with my cards, documenting the year, telling about everyone's life.

Can you imagine if I did that? "2015 was a horrendous year. My son, who had started out in school (yes, he was BACK to school after being homebound for two years,) made Honor Roll, joined the track team and the Student Council. Despite all this, his co-infections caught up to him. As you may or may not know, he has trouble detoxing--he has two MTHFR mutations--and the 23andMe confirmed this--so we have never fully treated the Bartonella and Babesia.... My daughter, on the other hand, experienced an onrush of Lyme symptoms, while I battled fatigue and joint pain...." 

Yeah, right. Like anyone wants to know. I may as well send out a letter written in a foreign language. And none of this is new. It's been the same story for about six years now. Give or take a diagnosis or two.

It's a new holiday season and thus far we've received only a couple of cards. One from my cousin, who truly cares. Apparently because we stopped sending cards, people have dropped us from their mailing list. Perhaps they think we dropped them from ours. They don't realize that they're still in our hearts, our thoughts. We haven't kept in touch except for holiday cards; years of dealing with a chronic illness will do that to a family. But how would they know? We don't see many people, don't make too many plans. Come to think of it, we're not invited to many parties anymore. Not after cancelling a few at the last minute because of a flaring child who couldn't be left alone or with a babysitter.

Then again, I'm not very good at asking others for help. I might tell people about Lyme Disease, but I rarely ask someone to take care of a child or to drive. And I can't ask anyone to help with meals--that simply is not done (plus, we're Kosher, often organic, gluten free and I'm now dairy, oat, agave, pecan, coffee and pepper-free as well.) We're 'Complicated.'

So, yes, my world has become smaller. My good friends, the ones who have stuck around, have become diamonds. My inlaws, my dad and stepmother have all stood by us. We appreciate everyone we have in our corner. I acknowledge that my own Lyme and my PTSD over the family's ailments may have created a wedge between "ordinary folks" and me. When I speak with a person who has a regular life, I seldom have much to say that isn't centered around PANDAS and Lyme. My good friends put up with me, encourage me, and then I can go on and laugh, enjoy myself, be myself, celebrate being with them. They understand that there's an underlying sadness that pervades our lives, our days. They also can help us rise above that. As can parents in the online support groups, who with a word or two, can convey so much love and acceptance. But to share the events that unfold at home with people who do not deal with Lyme and PANDAS? I don't even blog about the specifics. People would judge.

While my world within our town, our local community has shrunk, my outside world has expanded. I am in touch with wonderful people in all different states and countries. The Lyme Disease Challenge has put many of us in touch with people from all over the world, because Lyme is...well, it's everywhere. And it continues to spread. And where there's Lyme, there is going to be some PANS.

I guess I'm saving money on stamps, saving time addressing envelopes. I do miss having a picture of my two children, though, and we haven't any good ones of them together this year. Despite the hardships, there are memories I want to keep. There are friends I treasure also. Because they reach out, keeping us from isolation, they remain in our world. And when times are better, I try to reach out and remain in theirs.

"It's a world of laughter, a world of tears
It's a world of hopes and a world of fears
There's so much that we share that it's time we're aware
It's a small world after all."

Read more:  Disney - It's A Small World Lyrics | MetroLyrics 

When All Goes Splat!: on spirituality & challenges

When All Goes Splat: On Spirituality & Challenges

Yes, that's our dining room chair that has gone splat. A perfect metaphor for our family on some days. We have taken yet one more hit; my husband isn't well. He's the one who keeps it all together, who makes sure that food is on the table, who works from home and is therefore here when someone needs him (or cannot go to school) while I escape the house and work elsewhere. It's been over six years since my son first became ill. I look around and see suffering everywhere--from Syrians fleeing ISIS to Israelis getting stabbed on their own streets, to my PANDAS/Lyme mom friends who are fighting daily for their children's lives. And I wonder--why? Why us? What's it all for?

One of my best friends asked me if I pray. She believes in prayer and she told me about a baby with a brain tumor who was kissed by the Pope when he recently visited the USA. The tumor has nearly been eradicated. Although we are of different religions, we share ideals and beliefs. I have prayed, both to G-d and to my grandmothers who loved me tremendously and would do anything they could to help me. If they could. I guess they can't. Why aren't prayers answered? Is anybody out there?

Then again, maybe some higher power has kept my son alive. Maybe these powers have helped him improve enough to attend school again and earn decent grades despite his everyday challenges. Maybe they have helped him keep the sense of humor he inherited from his dad. Maybe the glass is half full. 

I don't know if I believe in G-d, but when times are very distressed, I succumb to praying. I do believe that there is an underlying energy, some unknown power, and I do believe in science--and the fact that there are still worlds of information that we don't yet understand. I believe in the power of a community to support one another emotionally during a crisis. I don't necessarily believe in miracles. I don't believe that our time here is what it's all about, that we live, die and are buried--end of story. I don't believe that our kids should commit suicide. But I do believe in death with dignity, as in the case of Brittany Maynard, who took her own life before a brain tumor could. I think we have souls. 

I'll never forget the play, Waiting for Godot. I read it in high school when I was incredibly young, sheltered and niave despite my parents' pending divorce. When I learned about existentialism, I felt bereft, suddenly alone, apart from everyone else. I had always felt different from others, always felt that I had an unknown-to-me meaning in life, but I wasn't ready to be alone in my own world. As Jews, we wait for the Messiah. Will we always be waiting for something better?

When I was in college, studying psychology, I took a class in which we learned about out-of-the-body experiences and near-death experiences. Although these ideas frightened me, they also were affirming. I refused to read the instruction manual for I feared that it would lead to such an out-of-control experience! But this knowledge did create a belief in me that our souls were linked to our physical bodies...and that someday, our souls would survive even though our bodies did not.

I still question the purpose of suffering in our own world. My dog has a happier life. He's fed, given water, a bed, love, heat in the winter, cool air in the summer, toys, more love. It's so much harder to be human.

Years ago, when I was reading a great deal about the Holocaust, I wondered where G-d had been during all this time. I recall reading a line that stated that if we stopped believing in G-d because of the Holocaust, then we had permitted Hitler to win. I won't let him win, but I also don't believe in an all-powerful G-d who watches out for each one of us. I don't believe in a vengeful G-d. In fact, I don't know that an all powerful G-d would actually have anger at all. But sadness? 

Perhaps I am doing it all wrong? I can learn from Victor Frankl, who wrote in Man's Search for Meaning, "When we are no longer able to change a situation, we are challenged to change ourselves.” 

He also writes that, “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” 

As much as I love my family members, I cannot allow myself to be brought down by the trials that plague us. I can learn from Buddhism if I make the time and effort. I can accept that pain is in our lives and stop fighting and questioning it. I can lead the best moral life possible and support others, meanwhile, finding happinesses along the way. I can release the leashes that bind me to yesterday and the webs that glue me to worries about tomorrow. I can enjoy each and every hug, the compliments for a dinner made (they don't always like what I cook,) my 14-year old calling me "Mommy" instead of "Mom," my 12 year old wanting me to lie down next to her and talk before she falls asleep. I must choose to live in the moment (while making plans to help my family) in the future.

Today, my walking buddy said that she had once read that perhaps suffering is the element that helps us to survive. If we're dealing with a Survival of the Fittest, it will be the people who suffer and make it through who endure. When she teaches her religion class or when her own children complain that something isn't fair, she shares with her students that all "have their own cross to bear." Despite different religions, we all search for meanings from our suffering. 

So, how does that translate to today--to me, to my family? Yes, times are rough but we do have family members who support us in a multitude of ways. We have friends who are gems. We have quiet moments and love despite the challenges. Perhaps we will never heal everyone. Perhaps we won't come out of our enormous financial debts. Perhaps I won't be able to afford to repair the once glorious dining room chairs that are breaking, one by one. But for this one moment, while I write away, my family is content, and I savor the tranquility. Don't remember, don't think ahead. Savor the moment. 

And then figure out what else we can do to get back on track!

Kids & Consequences

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Yesterday, my 12 year old told me that I was annoying her. So, I made sure that she wasn't a liar in addition to being a brat. I'm sure I annoyed her greatly by relieving her of her phone for the day. 

Weird, I thought. Earlier, the same day, she pulled the same crap on her dad, and lost another privilege for a period of time. She wouldn't even back down when warned.

As I thought about it, my mind circled back to the night before when her sibling cursed and said hateful things in the midst of a PANDAS or Bartonella rage. That drama was much more traumatic for everyone. Yet that child was not punished.

Perhaps my youngest was checking her own boundaries with us. She actually didn't seem that upset when I removed her phone. In fact, several years ago, she said to me, "Mommy, so-and-so's parents never punish them. I don't think they love them enough." Even at that age, she knew she needed parent-defined limits. 

When my son first became ill--even before the PANDAS struck, we could not understand why consequences didn't deter him. We took toys away, canceled a day trip--nothing we did helped. Fortunately, we didn't (and don't) believe in spanking. We also tried reward charts, stars, prizes. Nothing worked. Within a moment, he would spiral into an unreachable world. A place where consequences and rewards meant zilch. Later, sometimes, remorse would follow. At that point, punishments seemed harsh, especially as his mood became more depressed and confused.

But how do you handle a child whose brain is malfunctioning? As behavior ranging from rude to atrocious manifests, their siblings gape, wondering how far this child can go without being given some kind of punishment. 

There have been times that our oldest child took everything out of his closet and drawers, in effect destroying his room, and then was incapable of cleaning up after himself. Putting everything away would have been a natural consequence but that became MY own unjust punishment. Because he was in no shape to even help beyond picking up a shirt or two.

Then again, I tell myself, he is better than some kids suffering from PANDAS and/or Lyme. He is a gentle person. He hasn't attacked his sister or his parents. He hasn't broken TVs or computers, as some children and young adults have done. He empties folded laundry baskets and turns over chairs--gently. 

All this shows that he can retain some control when in a rage, though! If he has that much control, why bother trying to destroy something? He doesn't understand it himself, when contemplated in a more lucid state.

We also wonder how much is manipulative. While there are certainly times when his brain is out-of-control, he can rein it back in a jiffy if a friend comes over. When asked to carry laundry baskets or wash some dishes, he suddenly has joint pain. Could it be that he's learned how to play his own game? We mustn't push him, mustn't stress him or we will cause an exacerbation of his PANDAS symptoms. How much of this is real and how much of this is manufactured for his own short-term benefit? We need a bullsh*t meter.

Then again, perhaps we are simply burned out after a long-term flare. When he was in a better place, he was much more helpful and could begin to handle more stress (i.e. chores.) Despite the difficulty in treating Lyme lately, he is earning and maintaining high grades. Do we look at this in a positive light--he's able to keep it together at school now? Or is this one more teenage trick?

Parents of children and teens with PANDAS agonize over these issues daily; there is even a Facebook closed support group for parents of kids who act out at home yet not at school. It's when our children are even more ill that the symptoms spill out at school. 

The rest of the world has no idea what we parents endure daily, hourly. Years of drama, tears, threats of hurting oneself and cries of not wanting to live become a grating part of our lives. Yet none of this will ever feel normal.

Normal is a young tween testing her limits. Normal is a tween texting me to see if she and friends can drive with a 17 year old I've never met, trusting that I will say no because she doesn't want to say no herself. Normal is taking away someone's phone for a day and having that child actually calm down!

I'm waiting for Normal. I wonder how long I'll be sitting here.

Just Keep Swimming

What a whirlwind of a weekend...or, it should have been. My birthday was Friday and after a fiasco last year, when my Lyme doctor "fired" me because I wasn't showing enough improvement (or so he said; I think I wasn't buying enough supplements from him,) I swore I would not make another doctor appointment on my birthday. 

I had two appointments on my birthday. Instead of bringing donuts to my class, I stayed home from work and my husband drove me around to doctors. I canceled/ postponed all birthday plans.

But my experience this year pales in comparison to one FB friend who suddenly lost his 20-something son this weekend. I've been following his postings, as he flew to his son's college. Lying on my bed, reading the outpouring of love flowing through messages for his family, I am filled with such sadness for him. As far as I knew (which was little,) he had a gorgeous, happy, successful family. This was not supposed to happen. For most of us (and perhaps for this friend as well,) this came as a total surprise.

I spoke with another friend this weekend, a PANDAS/Lyme mom. Both of us, as well as many others, have become too accustomed to fighting for our children's lives. I pray that my child grows up, happy, and does not decide to end life, as has been threatened. "I don't want to live anymore" is a way too-common PANDAS refrain. And every month, we see postings of adult Lyme victims who have taken their own lives.

This crazy Lyme experience wasn't supposed to happen either. We were supposed to have healthy, bright children, not kids who would be fighting their way to survive. I only hope that the child of mine who has PANDAS and Lyme can attend college, can master the symptoms and anxieties brought about by these conditions. I do worry at times that he won't make it. 

Meanwhile, other friends cheerfully ran a half-marathon this weekend. Pictures of smiling faces and postings of "Congratulations" highlight their FB walls. They deserve it; they've had their own struggles. Who hasn't?

If I drew a VENN diagram, where characteristics of our lives were contrasted, the unifying trait would be love and the endurance to prevail. None of us are giving up. We're all fighting for something, and with support, we will hopefully all make it.

I've been looking at the four walls of my bedroom for the last three days, but the fall foliage is glorious with its fire-reds and golden yellows; the trees parade their leaves as if rejoicing with pride.

And so our world goes on...a death, a marathon, my own child "disappointed" because I'm sick and not my usual self. He doesn't even remember my real usual self. My real usual self wasn't obsessed with kids taking their medicines on time, with planning for strenuous CSE meetings, with dodging dizziness and fatigue and no longer caring that my bedroom is a mess. My own real self was dancing with my children in my arms, singing, "Shall We Dance?" from The King and I. My own real self loved planning parties and having friends over. My own real self would be bicycling, rollerblading and playing guitar in the same day. 

My real self has grown more serious. What can I say? This is our new reality. Having an ill child will change your world. Being sick and in pain stinks in every way, but my physical pain, as much as I likened it this weekend to pure torture, has been nothing in comparison to the pain of the parents who must bury their child.

I make my gratitude lists. My friends and in-laws will wait to celebrate with me another day. My husband has been taking care of us all, despite being ill himself. My daughter has been happier this year than she has in a very long time. My son is better than he was three years ago. My dog is always happy to see me, even if I left the house for five minutes. (Yeah, he's a little like Dory from Finding Nemo in that way.)

We run our own marathon with PANDAS and Lyme. Many of us parents of chronically ill children are suffering from stress and weakened immune systems. Our journeys might not end with with happily-ever-afters. But we're still striving.

"Just keep swimming."

Note: Image borrowed from http://www.olivinthelife.com/uploads/5/3/2/8/53288721/5266301_orig.jpg.

Transitions and Expectations

There's nothing quite like the first semester of freshman year high school for any student. Add a twist of Lyme and some High Anxiety and you have a cocktail for disaster.

My son always had trouble with transitions. When he was a toddler and it was snowing, he would refuse to go outside. But when he was finally bundled up and playing in the snow, he would refuse to come back into the house. Night time wasn't a huge problem; I'd ask him if he wanted to crawl up the steps or if he wanted me to carry him. Having two options worked well for him. Having two options did not work for my daughter--she would make up a third option (not going upstairs at all!)

When middle school began, we were in the beginning of our war against PANDAS and Lyme. This resulted in my boy being unable to think, unable to attend school. He was tutored by the school district at home for nearly two years, returning successfully in the fourth marking period of 7th grade. 

Now it's the start of high school. New school, new friends, new schedules, new teachers, new transportation--too many options, too many choices, too many changes. Everything is new and Nu, it's not working yet. Oh, how I miss those gates that locked at the top of the stairs so that our small children could not fall down. 

Perhaps he's suffered a flare. It's possible. Even someone shedding a FluMist vaccine could potentially set off a kid with immune deficiency and PANDAS. But maybe it's just the stress of transitioning. One of my best friends told me that first semester freshman year was challenging for her oldest boy who is exceedingly bright with no issues. He had to get used to organizing his work and turning in homework exactly on time. Thanks to an IEP, my son has some leeway with deadlines. But so many changes at once have definitely thrown him under the yellow schoolbus, despite the wonderful help he has received from the school.

So, I decided to do a little research.

Sandy Berenbaum, LSW, BDC, writes that "Kids with chronic Lyme might find it hard to retain new information. Lyme also can effect receptive and expressive language, visual-spatial processing, abstract reasoning, processing speed. Just as Lyme disease can affect any part of the body, it can affect any cognitive process."

She adds: "These kids may appear to be distracted easily, have poor concentration, appear scattered, have just about any symptom of attention deficit disorder. Or if the child had ADD before she got Lyme, her ADD symptoms are often exaggerated by the illness."

While that is the case for both my kids, we have seen improvement since beginning treatment. However, when we hit a snag, we removed my son from medications that were working and that needs to be remedied. He is having major issues with focusing. In addition, any child who is withholding tics throughout the day at school is going to be spent by the time they get home. So focusing and studying when the sunshine is receding can be daunting and the cause of much frustration. 

When school is stressful, many other expectations are shoved aside. Yes, kids are expected to brush teeth and shower, but cleaning their bedrooms, making beds, even setting the table or prepping their own breakfasts can be just too much. This creates increased burdens for the adults. What to do?

Although my son is not on the Autism spectrum, PANDAS can mimic certain sensory and cognitive elements of autism. This article by Lynne Soraya states that it might be hard for kids to access certain skills for a multitude of reasons; in fact, some kids develop in what we might consider an atypical fashion. For instance, my son taught himself to juggle, to unicycle and to play electric bass; however, he still has difficulty with buttons, calculator cases that snap on and combination locks. Soraya writes that

"Kids on the spectrum tend to develop asynchronously: “later” skills may develop earlier, “earlier” skills may develop later and skill level in one area will often be vastly out of sync with skill level in another. A child may have advanced skills in memorization or certain areas of academics, yet still struggle to cross the street safely or order his or her own meal in a restaurant.

Another aspect of this is that skills that have been already attained can be variable as well. Why is this? Well, every person has a finite amount of cognitive resources at any point in time to use for things like problem-solving, navigating barriers and making sense of the input from the senses. In most people, a lot of these tasks, such as managing sensory input, are done almost completely subconsciously. In contrast, those of us on the autism spectrum have to utilize a lot more conscious thought and working memory to deal with such things. Because of that, navigating a new situation can easily tax our resources beyond what we can handle."

It’s like the brain is a bucket that fills with too much water: something winds up going over the side, and what “goes over the side” may vary. In my case, what went “over the side” first were executive processing skills. I had trouble getting organized, I’d get lost in environments that should be familiar and worse, I began to lose things. I didn’t know why. Difficulties with academics soon followed."

Oh boy--this is enough to create a lot of anxiety in a person. I know that my bucket was way overfilled last summer when I was herxing from minocycline. I have experienced some of what my own kids have suffered through. The difference is that as an adult, I know what I'm capable of and what I need to aim for, upon improving my health. My kids don't yet understand how bright they are.

Lyme and anxiety often go hand-in-hand. PANDAS and its accompanying symptoms (that look like behaviors and moods) cause stress for every member of the family. Daniel Sonkin, Ph.D, writes that stress is contagious.

According to Sonkin, "This may seem like a bizarre suggestion, but recent neuroscience findings suggest that our brains are wired to communicate in such a way, that when we are feeling anxious, we can contagiously convey that feeling to others, especially those with whom we have a close relationship. That means kids convey their anxiety to parents, and visa versa, parents convey anxiety to their children. Think of it like the flu – contagious especially between people who are in close proximity. One way to reduce the anxiety between parent and child is for one person to break the cycle of emotion contagion."

So, as parents, what do we do about all of this? Every article will encourage positive communication and problem solving. To me, that reads as a "no duh." It's not enough for a child who is a breath away from being unable to attend school. Personally, I can see how having a school that supports the child/student is crucial. My son's guidance counselor has been very accessible and communicative throughout all of this and has helped alleviate some of the stress.

I also read that run-throughs are good; in fact, the high school had just that as well as a freshman orientation. I can also tell you that it's not enough for a kid like mine. Or many others, including children who have no diseases. Perhaps there is no way to completely eradicate the stress around a transition. Perhaps the best we can do is to support our child as best we can, with additional counseling when necessary, with help studying if need be, with encouragement, problem-solving and sometimes direct advocating when our kids cannot advocate for themselves--until they learn to do so. 

I want my son to grow and thrive. I want him to be able to let others know when he is feeling as though he is in a rut. This week, he worried himself sick over upcoming quizzes. Ironically, he came home with 90s on some of these assessments. I have no idea how he accomplished this.

But this transition is NORMAL, whether or not the child has Lyme or PANDAS. In 7 Tips to Help Teens Successfully Transition to High School, Bonnie Rubenstein writes: "The higher academic standards of high school and increased competition will take some time and adjustment. Often students earn their lowest GPA freshman year, and then begin to figure things out.  When I interview students and ask the question “if you could start high school over again, what would you do differently?” many students answer that they would take freshman year more seriously.  Some freshmen don’t even understand that their freshman grades are part of the high school transcript that is submitted when they apply to college."  

Hmmm. Can't wait for those college years. Just kidding.