I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

Saturday
Mar102018

On Women's HERstory Month

March is Women's History (HER story) Month and it's time to celebrate the amazing mothers who work tirelessly to raise healthy, happy children. It's time to celebrate the mothers--the Katies, the Nancys/Tricias/ Gayles, the Anitas/ Gabriellas/ Emilys/Christines/ Jaimes and Beths, the Libbys/ Julies/Giulias, the Barbaras, the Gayles/ Melissas/ Valeries and Erins...the moms who aren't (as far as I know) famous, but who fastidiously love their children and do anything needed to care for them, despite overwhelming obstacles.

But I want more. 

Each year, for Women's HERstory month, a former and beloved history teacher, now retired, returns to my classroom to share his story of an ancestor who was an abolitionist. Each year, for many years now, I have asked my students to write a story of a female ancestor of their own--someone for whom books were not written, someone who was most likely a mother, someone whose story might eventually evaporate but for the telling.

My students need to interview living family members in order to find these stories, and in doing so, they learn not only about great grandmothers or great aunts but history. They learn about Irish ancestors escaping potato famines, about Holocaust survivors, about first generations that were born out of slavery. They learn about women who went to college when few others did, about women who raised seven children single-handedly, about poverty, prejudice, survival. They learn about the character traits that are still remembered--kindness, perseverance, stubbornness, industriousness--character traits that might be passed down to future generations, whether those generations be born to them or adopted. 

I want to be remembered, and not just for being a mom. Or a mom who fought for kids' medical health. Or a mom who fought for Lyme treatments while lying in bed, fatigued from Lyme. Not that that isn't enough, but I want more. At one time, I would have been happy to be remembered for singing. But I had aimed for a different path. I would love to be remembered for my writing. Most importantly, I would like to be remembered for bringing positive change to our world. 

But today, I am tired. I'm physically fatigued. I'm worn down. I joked with a colleague a few weeks ago that if I did not return from February break, I could be found somewhere in Italy.... maybe studying music. I know I'm fighting a cold. And the cold has caused some brain fog. All setbacks perturb me. I have so many goals I want need to accomplish.

Why is it so important for me to accomplish more than parenthood? Why is it integral that I am remembered? What is our purpose here in life? Is it to achieve happiness? To learn to accept all that we cannot change or to fight for the changes that must be made? Is it to plant a tree, have a child, write a book? Is it to make the place better for others?

Where do we current mothers fit into all of this? Will my children have children or will my great grandchildren someday be researching me? And if so, what could they learn? That I dabbled in musical theater, kept returning to college and racking up degrees, (yet still suffered financially)? That I fought for PANS legislation and Lyme treatments? Will they read that I published a book sometime in the 21st century (date unknown)? Will they read that I made great changes? Will my name persist past my life? Will my children grow old and carry with them good memories of me?

Or will I slowly disappear, much as my own great, great grandmothers have done? My great grandmother Nadia (renamed Nettie) came over from Russia, lost her thumbnail in a NYC sewing factory, lost her firstborn to a hole in her heart and nearly lost her son to polio despite the fact that my great grandfather was a doctor. My great grandmother was also mother to my grandmother, whom I loved but who will not be remembered for many generations. I know nothing about Nadia's mother or Louis's mother or my Great Grandmother Rose's mother, despite their accomplishments, despite the obstacles and suffering they had to surmount. Their names and their stories are now lost to history. 

Throughout my teens and twenties, I felt desperate to know why I was alive, why I was here. I knew I had a meaning in life but it was just a whisper of importance that evaded me. When I found the stage and could make people laugh and cry, I thought that part of my meaning was involved with musical theater. I believed that writing was linked to my meaning but had no direction yet. Ironically, I majored in finance. 

Once I had a family, that urge to find meaning calmed somewhat, until I was thrust into another world altogether. This new world would ultimately (hopefully) make me a more understanding and compassionate person, one that would lead to deeper connections with others. If I had not had setbacks that brought my world so much narrower, would it have grown wider? Would I know and care so very much for the same people? 

I want more.

I want more fun, more freedom, more finances. I want to make more changes, be able to volunteer at a conference two days in a row without growing fatigued. I want to be able to be two places at the same time! I want to spend quality time with my husband, my daughter, my son, my friends. I want to learn ukulele and play my guitar and write my novel and ride my bicycle and do yoga and save the world, but I have neither time enough nor sufficient energy. I feel fractured into many different directions, which is nothing new as I have always had many passions. I just cannot do it all.

And while I ponder my story, while I try to WRITE my story, I also try to shape that of my own daughter. She has strengths I never had at her age. She has personality and gifts that are blooming. She has the potential to make so many positive changes to our world. She is a gift to me and she is also one of my gifts to the world.

"Please Gd, please, don't let me be normal!" --Luisa from The Fantasticks

Wednesday
Feb072018

PANS/PANDAS: Words from the Frontline

“My son went from a smart, happy, self-sufficient 7 year old to a tormented, angry, helpless, regressed child overnight. Our family will never be the same.” –Lori Rowden

PANS: What is it?

Pediatric Acute-onset Neuropsychiatric Syndrome occurs in approximately 1 out of 225 kids. It shatters childhoods, spiriting away children from families. PANS plunges parents into a hellish, upside-down world. With the exception of a few people, PANS is NOT understood by the other 224 out of 225 people.

PANS is an autoimmune disease that attacks the brain. Triggers include, but are not limited to: strep (in which case it's refered to as PANDAS), pneumonia, flu, mycoplasma, Coxsackie, vaccinations, Lyme Disease. PANS has resulted in a tremendous impact on the happiness, health and finances of families involved.

Lynn Becker Haber explains the sudden onset of her son: “Our older son Gary, who was in the fifth grade at the time, complained of a sore throat, which turned out to be a strep throat. He took a round of antibiotics, and we expected life would go on as usual. Only it didn’t. What happened next is nearly impossible to describe. I can’t do it justice through my words.

“PANDAS is an autoimmune reaction to strep,” continues Lynn. “Antibodies that are supposed to fight strep mistakenly attack the part of the brain that controls thought and movement. It is often described as a rheumatic fever of the brain, but unlike the heart, the brain controls behaviors, which makes many assume it is psychiatric. This is a medical illness that can range from mild to debilitating in its symptoms. For Gary it quickly became debilitating, and he went from being an advanced student to a special needs student and was hospitalized multiple times over the next eight years.”

PANS creates a nightmarish existence for patient and family. And yet, in some of these families arises an amazing inner strength to contend with such an ordeal. A well of resilience, perseverance and faith binds parents to one another, a unity that is crucial when our children and families are pioneers in this new crazed time. Parents long to educate the world, to increase awareness and to help others just going through this experience. Following are the experiences, both devastating and inspiring, of some of these warrior parents.

Diagnosis and Treatment

Diagnosing PANS is challenging and many families have taken their child to numerous doctors. Treatment of PANS is another matter altogether, with no one protocol successful for every child and many doctors not knowledgeable enough to tackle the illness. Support from family, friends and community is not always guaranteed; in fact, as PANS presents as a "mental illness", many scatter away. Lastly, the financial repercussions and fear over losing a child can break up families.

“Having doctors not understand, having family think it's far-fetched, and ending up broke is all REAL. This disease is devastating in every aspect,” says Josette Krause.

Jennifer writes: “Daughter had a tick bite at 8. PANS symptoms showed up shortly thereafter. Tested Elisa for Lyme, negative. Daughter started suffering panic attacks, crippling anxiety, and OCD. Went on for 7 years before we learned of PANS. Daughter was suicidal and had a psych admit at age 15. We learned of PANS and did more thorough Lyme testing in which she came up CDC positive. Now at 16 we are seeing a LLMD [Lyme Literate doctor], she has not been suicidal in a year and she is much more like herself, the girl I thought I was going to lose forever. Her GPA so far this year is a 97, (4 points higher than last year) while taking 4 college level courses along with other high school courses. The Lyme doctor is out of pocket, but it’s what I need to do to get my child the treatment she needs. Times are tight, but my child’s health is paramount.”

Finding a good doctor can be nearly impossible. Libby Majewski adds, “I put a call into my pediatrician days ago and he finally called me back. Anyway he asked me questions like, “Have you talked to her teacher?” When I told him that she cries every morning about going to school and we’re getting close to school refusal and when I got annoyed with his questions and told him that I do talk to her teacher quite a bit and nothing is going on at school, he started asking me more questions like, could she be bullied?

“I said basically that this is ridiculous; he and I keep having the same conversations and I’m feeling that I’m not getting anywhere and I guess I have to go back to specialists out of state to get support and pay $$. He got so mad & said he needs to investigate other possibilities for her behavior. Anyway, he came around (I think once he started looking at her labs and chart) and in the end he agreed to do the “rheumatic fever” protocol of prophylactic antibiotics. She was in the freaking car and he was on speaker. Oh well, she heard a mouthful about herself and her anxiety, sensory issues, refusal to do any activities, etc. from me as I was explaining all her symptoms to him (‘It’s not JUST school anxiety’).”

“We were so lost and had no idea where to go,” writes Tracy. “I don't want others to go through that.” She adds that her first daughter had a positive Lyme test at age 6 and again at age 8. The first time, she was given a week of antibiotics. The second times, she was given three weeks of antibiotics. When at age 11, she again had a positive Lyme test, she was told by doctors that per the CDC, all were separate and new infections and that she was fine after antibiotics. However at age 13, she was anxiety ridden, suffered from an eating disorder, explosive angry, bad short term memory.

After working with three different therapists, neurologists and the pediatrician, a new therapist suggested that Tracy’s daughters’ “problems could be Lyme-related. NEVER had anyone told us that Lyme Disease could cause mental issues....years were wasted.”

Tracy was to repeat this experience with her second daughter, who suffered from sleep issues, nightmares, hallucinations, self-injury, foot pain and suicidal thoughts/attempts.  Tracy says that this finally “led us to a holistic psychiatrist who is now treating the Lyme – she [daughter] is not done yet but has seen a lot of improvement. “Again, no one ever mentioned that Lyme could cause this,” says Tracy.

When Angel Emrey sought treatment for her child, she learned that she would have to “travel from Tennessee to Washington, DC. Of course, insurance doesn't pay anything if you have IV antibiotics. It pays a little of the doctor's appointment and some of the oral antibiotics. Any of the things that we have to take [Many doctors prescribe supplements, herbal medications, etc.) are not prescription; they’re over-the-counter or natural so they are not covered. To say treatment is expensive is an understatement.”

Some doctors do not respect patients or parents researching and advocating for themselves. Doctors have gone to school for years and some will denigrate patients who have found facts via “Dr. Google.” According to Angel Emrey, one doctor told her then 7 year-old daughter, “I see your mom has been on the internet researching things that are wrong with you.” He said this despite the fact that the child “had the bulls’ eye rash and all the symptoms, plus I brought in the tick that was attached.”

Yet another doctor told Angel’s daughter, at 14, when she complained of hallucinations, constant headache, intense pain and frequent falls that she could not possibly have Lyme because they lived in Tennessee. “At this point, she had 3 positive tests! He asked her who had hurt her feelings on social media to cause her to make al this up and then told us to take her to a psychiatrist.”

Daily life continues to be a struggle for many. One good day can lead to three good days but can also lead to a complete meltdown or flare. Some of our children seem completely lost to us. Julie Parker says, “My daughter, now 20, experienced hallucinations, crippling anxiety, depression, and became a compulsive cutter, along with unbelievable pain. There were many other issues. She went from being an honors student and playing competitive softball to being unable to remember any new facts or even what she was told hours before, and unable to get out of bed. Her childhood would also have been much different had we gotten a diagnosis when she was young. All the signs were there from birth but no pediatrician or other specialist saw it for what it was. She had OCD, her days and nights were backward, she developed irrational fears, had horrible nightmares, anger, and intrusive thoughts. We only half-jokingly said she went "from zero to Hulk in under 10 seconds”.

“At age 15, she was finally correctly diagnosed and we were both relieved and horrified as we began to learn the reality of what she faced. I still remember the day she told me she felt no pain for the first day she could ever recall - at age 16 - and how we both cried tears of joy and regret about it. She had to drop out of high school before her senior year due to memory problems, anxiety, fatigue, and pain. Treatment has cost us approximately $75k and we realize that's less than others AND that we are fortunate to have had assets to liquidate in order to treat her. We, too, travelled from TN to DC for treatment and went through three Lyme doctors before finding one who could handle her complex case.”

Gene and Suzanne share their story on their website. They write, “We visited several neurologists and psychologists, and while he was hiding and screaming underneath their office tables, nobody could tell us what was wrong and couldn’t understand that this child had not been like this before. We told them over and over that he was the top of his class, one of only two kids who got into advanced math for middle school, sweet, loving, compassionate, empathetic, never mean or lashing out.  The doctors talked about “hot feelings” and “cold feelings”, that we couldn’t let him have his way with everything.  One doctor put him on Zoloft, which made him 100x worse.  We told the doctor it was making him worse and that we needed to stop the Zoloft and he said, “It sounds like you need more, not less.”  He said, we should “try outpatient hospitalization and if that doesn’t work than he’ll need inpatient treatment.” 

[As a side note, unbeknownst to many of the psychiatrists treating children with PANS, the PANDAS Physicians Network advocates going 'low and slow' when it comes to doling out SSRIs. “Clinical experience with PANDAS and PANS patients suggests that using a low dose and slow titration minimizes the risks of activation, agitation, akathisia, and other adverse effects of the drugs. The medications MUST be started at an extremely low dose (e.g., 1/4th or less of that used for a typical child). Upward titrations should be adjusted no faster than 2-week intervals. An adequate trial of an SSRI is 10-12 weeks at maximum dosage”.]

Suzanne and Gene also assert: “Usually, children with these symptoms are prescribed psychiatric medication, as ours were, which only serve to exacerbate their conditions.  This is then followed by more medications, and inevitably the children are lost down a rabbit hole of psychiatry and neuropharmacology.  We avoided the psych meds. sparing our children from the lifetime of hell that comes with a true psychiatric diagnosis.  And miraculously, after two years of hellacious anguish and seven years of misdiagnosis, we are somehow clawing our way out of the dark and treacherous hole, only to leave ourselves wallowing in the mud.

An anonymous parent writes, “My child was bitten by a tick at 3 and started falling down after that. A cognitive decline (inattentiveness) was noted by a preschool teacher but we thought it was due to stress because my ex and I were divorcing. Very significant fine and gross motor delays were noted. We had lots of visits to doctor due to colds and infections and there were persistent complaints of bone pain in the doctor records.

“Many more tick attachments followed but the Elisa tests throughout childhood were always negative. We actually never had a western blot test performed. At 15, he was at the doctor for another infection and I checked off the box on a lab slip for a Lyme test and he got a positive Elisa test, but a negative western blot. After that I started researching and found out about how useless WebMD is with regard to Lyme and co-infections and I found my son a LLMD. After starting treatment, he crashed horribly, had to stop school and never made it back. Now he has PANS and substance use disorder.”

PANS in adolescents can look much different than it does in younger children. If PANS is not diagnosed and treated promptly, it can become exacerbated with each new flare up. Teenagers tend to self-medicate when other treatments fail to work effectively. This is why it is crucial for pediatricians, who are often on the frontlines of child medical care, to know that any change in personality should be met with blood tests for triggers. Having said this, PANS/PANDAS is a clinical diagnosis.

According to New England PANS/PANDAS Association, "PANS/PANDAS is a clinical diagnosis and one of exclusion, based on history and examination, not simply one laboratory test.  PANS is thought to result from a variety of disease mechanisms and to have multiple etiologies, including but not limited to psychological trauma, underlying neurological, endocrine, and metabolic disorders or postinfectious autoimmune and neuroinflammatory disorders. Therefore, PANS diagnosis does not require a known trigger."

Stacy Rothman Fox adds that PANS is a “major emotional roller coaster! The past four days my son has been wonderful. He is loving. I can leave him in a room by himself. I can leave the house to walk the dogs.

“But the day before, he called me just to tell me that I should fall, that he can’t stand me and I should die. He proceeded to tell me these things all day. It wasn’t safe to leave him alone at all. The week before he was violent and the week before that. While I’m loving how wonderful he is right now, I’m terrified of the switch.”

PANS and the Outside World

When questioned about whether extended family understands, Sherry Howard responds, “It seems that every time you have a good day or a good week, they say something to the effect of, ‘Looks like things are turning around’ or ‘Sounds like he is getting better’. Then they don’t understand when that is not the case. Celebrate the good moments; they can be few and far between.”

Marianne G. says, “Extended family doesn't understand that you can't just pill-and-cure a chronic, complex condition.” She goes on to tell me that family members have actually rolled their eyes when she has related to them that her daughter is immune deficient and cannot be exposed to colds and other germs.

Terry adds, “When your ex doesn’t believe the lab reports and influences your child against you, it is heart-breaking! With support, we could treat his symptoms instead of just taking him to a counselor, a podiatrist, a tutor….”  Too many stories echo that of Terry and her child, unfortunately. 

Beth speaks for thousands of parents when she writes, "The loss of your child as you knew him (or her) is challenging enough. To then be questioned about what you're doing for your child, while going through crisis, is absolutely unbearable. Whether or not your child is seeing the best doctors, whether or not you're doing enough, whether or not he is on too many medications or supplements, why he isn't in therapy, why he isn't in school, why he doesn't spend time outside, etc. is more painful than I can express. Whether these things are said to my face or I know they are said behind my back or both, the additional pain that causes is indescribable. I deserve as much love and support as any other parent who is dealing with a sick child.

PANS affects the family's role in the community at large. Gone are the soccer or basketball games, the scouting, the day trips to museums, the vacations to faraway (or near) places. Not only can families sometimes not afford excursions, but children who are ill are unable to participate because of symptoms.

"We don’t go on vacations," says Laura Carmichael. "We don’t go out to eat as a family. Social outings are a rare occurrence (and are usually cut short). We walk on eggshells because sometimes the slightest thing can cause rage. We’re trying different antibiotics, but we can’t afford IVIG, so we hope clearing the infection will eventually work to relieve his symptoms. We talk to other parents for support, and we put our faith in our PANS specialist to figure out how to help our son. But for now, we tread water." 
 
Beth implores, "Please ask me if I'm OK. Please ask me if I need to go for a walk, go for coffee with a friend, get out of the house and get a break from being on 24/7 suicide watch. Please just be there for me." She adds, "You cannot imagine the gut wrenching pain when you hold your wailing son after he slams his head against a wall for hours, and ask God to take him if this is what his life is going to be like. Nothing can prepare you for that kind of pain. You could never imagine having to feel that way. Just be there for us."
 
Jaime Heizler Tan is more fortunate than most in receiving strong support from family. "I wouldn't be where we are without the support of my family," Jaime says. "It takes a village. My parents come to every specialist appointment and conference that is offered. Being educated and armed with an understanding of how PANDAS manifests and can be treated is half the battle. I thank my lucky stars everyday I have their support!
 
Despite Jaime's challenges, she shares, "I believe PANDAS has made everyone's relationships closer. My daughter has a bond with her grandparents beyond what is typical. They have seen her at her worst and she now knows that no matter what, family will always be there. It can be both a blessing and a curse like any chronic illness. Luckily for us, it brought everyone together.
 

Moving Forward

Lynn Becker Haber writes: “We agreed to participate in the film, My Kid is Not Crazy, to spread awareness that we hope will lead those in need of immunomodulatory interventions to get appropriate treatments early on, before long-term impairments set in and make this harder to treat. The documentary gives a glimpse into the struggles faced by Gary and others affected by PANDAS. The ending is powerful and sad, but it is not the end of the story.”

“It’s totally a day-to-day situation sometimes,” says Stacy Rothman Fox. “And yes, we celebrate things others take for granted…a day without violence, a day without being cursed at, a day when our child isn’t miserable, a day when we can leave the house with our child…. We all celebrate and savor these days. We know that the next day we can be back in Hell.”

“My son just did a month of steroids," writes Heather Lovrich-Cooke, "which was fascinating. He suddenly could do math quickly and easily instead of taking forever to do one simple addition problem and the whole time saying "it is too hard and too much work." Rages came down 90%. Oppositional behavior was down 70%. OCD is down. He is acting more rational and socializing more typically. If we weren't fortunate enough to have learned of PANDAS/PANS, he would likely be misdiagnosed as ADHD, ODD, OCD and would not be receiving the anti-inflammatory treatment that just turned his life around in an undeniable way.” 

Gene and Suzanne assert: “We’ll get through this because we don’t really have a choice – there’s no way that we’re going to give up on them.  We’ll educate the doctors and the so-called experts and we’ll educate our communities, our friends, and our families.  We’ll pressure the insurance companies, and we’ll pass legislation if we have to.  We’ll get this done.”

Like the energizer bunny, we parents just keep ticking away, trying to find that mysterious cure that will save our children. While we have lost faith in some of the medical system, we do have faith in the perseverance of PANDAS/PANS and Lyme literate doctors. We have faith in ourselves to never give up.

Yet, this is not enough. There is not enough time to save our kids from losing their childhoods. Insufficient time, money and resources have thus far been invested in the research for these diseases, despite tremendous efforts of a few. These diseases are still considered “rare.” But when your child is the 1 out of 225 who is afflicted, that disease ceases to be rare. Instead, it is rarely and often belatedly diagnosed. PANS/PANDAS takes no prisoners. All who encounter it, whether parents, siblings or afflicted persons, are forever changed.

 

More Resources:

www.NEPANS.org

www.PANDASNetwork.org

www.LymeDiseaseChallenge.org

www.ILADS.org

https://www.lymedisease.org

Sending a special thank you and hug to all parents who participated and shared their experiences. 

 

Thursday
Jan042018

Top New Year's Resolutions for a Lyme - PANS - PANDAS Parent

Top New Years resolutions of a strung out PANDAS parent, constructed by a few harried moms. And, in no particular order, here they go. Can you add something witty to the list?

  • To write sad country music about holding back tears or alternatively, hard rock about OCD
  • To breathe. Ohmmm..... breathe out fear and breathe in less chocolate
  • To clean out my child's compulsively messy room and actually throw it all away unless I see something I want for myself, that is
  • To get my kids’ medical binders organized
  • To be able to identify each medication by its size, shape, or color, and not by the label on the bottle
  • To compile a list of civil come-backs for those who criticize what they perceive to be my not ultra-amazing parenting skills
  • To not over-share with people who do not care
  • To corral the drama-llamas and stay far, far away, in another galaxy….
  • To not wait till 9:00 on a Saturday night to dole out medicines for the week...
  • To stalk every support group and doctor website for the next greatest supplement that could save my kid’s life
  • To read every PUBMED article ever published about autoimmune encephalitis
  • To be able to pronounce methylenetetrahydrofolate reductase. And say it 5 times fast (just kidding, even saying it once counts!)
  • To carry on an entire conversation using acronyms: PANDAS, PANS, MTHFR, CBS, COMT, MAO, VDR, HLA....
  • To finally understand methylation and the mother-father-shut-the-door gene
  • To be able to decipher a 23andMe and comprehend snips (SNPs)
  • To memorize the Lyme-specific bands on a Western blot. No, wait, I did that already!
  • To play Cards against Humanity: the PANDAS pack
  • To watch every Dwayne Johnson movie, because they have absolutely nothing to do with PANS or Lyme. And because Dwayne Johnson. Or to alternatively, watch every Avengers film because of Thor, who can save the world with his muscles and his hammer. The old movies, where his hair is long….
  • To play more board games as a family, so that we can create some pleasant memories. Once I bribe them all to sit there
  • To make gluten- and dairy-free more enticing, especially because I detest cooking
  • To get off all sugar--yeah, right!
  • To develop a non-toxic, Teflon-like skin, so that criticisms, complaints, and even well-meaning-yet-unhelpful comments roll off of me like water from a duck’s back
  • To win the lottery to pay off all of those medical bills
  • To go a whole day without mentioning Lyme or PANDAS! 
Sunday
Nov052017

Adversity, Illness, Family & Hope

I recently held separate parent teacher conferences with divorced parents of a child in my class. One of the parents expressed anguish over the drama that had played out in the last few years, saying that the daughter even had her own lawyer for part of the time. 

This ignited my own memories, although I didn't share them. My parents had an acrimonious divorce. My mother blamed me for her "financial loss" as she saw it because I was 18 and contrary to my people-pleasing personality, would not go to court on her behalf. Bitter years followed, which took much work for me to overcome. 

Overcome them I did. I figured that I had paid back the universe. I had dealt with more than my portion of despicable behaviors and anguish. Friends had not known such difficult times; I saw that first-hand when I was invited into their warm, calm homes and treated ever so kindly. Hence, when, years later, my son first became sick, I wondered, as many of us parents do--why me? Haven't I endured enough? Haven't I already paid my dues?

This child in my class has suffered, yet to know her, to see her from the outside, one would never know. She's sweet, mellow, has kind friends, tries her best in school. She's likeable and well-liked. Her parents both deeply care for her although they continue to dislike each other. Why her?

But then again, I thought, why not her? Perhaps she will be stronger for all this than the adult she would have grown into someday. Perhaps she will be stronger than the classmates orbiting about her. Perhaps despite the angst and anxiety, or because of it, she has developed courage and fortitude that will protect her for the rest of her life. If so, what happens to the kids who do not learn how to climb above adversity? What happens to those kids with "perfect lives?" Will they fall apart when as adults, they must suddenly deal with job loss, a sick spouse, a child with Lyme?

Following this thought, maybe I needed to be kicked out of the house for no reason, as were my brother and sister. Perhaps I needed to be blamed for my mother's financial ills and be subjected to helping her lest she drive herself off a bridge. Maybe I needed to finally say NO to my own mother. Maybe I needed to be open to letting in people who were not blood-family. Maybe I needed to stop cringing when people went out of their way to do something kind for me. Maybe I needed to accept into my life a most lovely woman who called me her G-ddaughter because she said that G-d put me in her life. Maybe, in order to deal with the adversity that was yet to come, I needed to see that I could survive because I was strong enough with the help of people who were once strangers.

I took a self-directed trip to Italy once, alone, when I was younger and single. Each day, I met people from all over the world with whom I bonded for an hour or a day or more and I had an overwhelming sense that something was looking out for me. I went by myself and returned feeling that I was not alone. 

As parents of children who are sick, as parents who are sometimes ill ourselves, we question--why us? Why our babies? My son was healthy and happy before be became ill. Will he emerge from this with strength or with scars? My daughter, the healthier sibling, knows so much more than I ever did at her age, and not just because of the internet. Has she been affected? Yes. Her petals have been injured, but she continues to bloom.

Many of us parents of sick children have met through support groups, but the threads that keep us connected are not the shared feelings of being victims but of the determination to navigate this fight. We are drawn together from a sense of power and purpose. We struggle to make our families blossom despite the concrete weighting us down. We reach toward other parents through the cracks of the internet as we would toward the sun. 

Paul Tough is the author of How Children Succeed: Grit, Curiosity, and the Hidden Power of Character. According to Tough, "People who have an easy time of things, who get eight hundreds on their SATs, I worry that those people get feedback that everything they’re doing is great. And I think as a result, we are actually setting them up for long-term failure. When that person suddenly has to face up to a difficult moment, then I think they’re screwed, to be honest. I don’t think they’ve grown the capacities to be able to handle that."

Additionally, in an interview with Dallas News, Tough states, "There’s lots of evidence out there that growing up in a childhood that has too much adversity, too much stress, too much trauma is terrible for kids. It doesn’t make them stronger and more resilient. It harms them in all sorts of psychological, emotional and physical ways. But at the same time there’s also evidence that too little adversity can be harmful as well."

What significance does this have for our children who suffer from Lyme, PANS, PANDAS, other chronic or poorly-treated diseases? How does this help to calm our worries about the siblings who are also losing chunks of childhood due to family medical issues? 

The child in my classroom who has dealt with divorce will hopefully never have to deal with such adversity again. But if she does, she has already learned that she is not alone. Her teacher is just one person who is there for her. Our kids at home who endure years of treatments for chronic illnesses...some are already pursuing their dreams. For others, just holding on one more day to fight this illness shows perseverance. When that strength is finally used for something other than survival, whether it be for mere pleasure which has often been forsaken, or for a meaning in life, that child will soar.

As a parent, I can truly say that today, I survive because I am strong enough to accept the help and love of people who were once strangers. I am not formidable, but I have power. I may not be able to save my son, but I will not quit until he is better. Perhaps the difficult times I was forced to manage as a teen and young adult prepared me for this concrete path today. 

 

 

Sunday
Oct012017

Answers to "How Is Your Child?" #Lyme #PANS #PANDAS

You slide into the supermarket, push the cart through as you search for organic vegetables (or not, because you haven’t money left for organic), when an acquaintance stops you and asks how everything is. You smile, skate by the question by saying fine, but they persist and ask, how is your child?

You go to a family BBQ and someone asks, in the midst of company, about your child. How do you respond when your child is not well?

PANSLife surveyed a bunch of parents of kids with PANS AND Lyme and came up with the following answers. How many of these resonate with you? How many of you are able to be truthful? To not shield yourself and your family from the world? And to venture receiving either compassion…or criticism?

Sometimes, families are the worst culprits when it comes to belittling parents’ attempts of solving the problem of PANDAS. Or PANS or Lyme. Sometimes, acquaintances and colleagues would rather not know. Yet occasionally, our sharing can lead to another child being correctly diagnosed and treated before the infections cause irreparable damage.

Here are your words:

 “He’s had a rough year fighting…”

 “They don’t ask.”

 “She’s struggling right now. Keep us in your prayers.”

 “He is struggling, better than he was a few years ago, but has no life outside of the house. Thank you for asking since everyone seems to have forgotten about him.”

“We do not talk with distant family. I have posted articles about PANS online for general reference. My teenager is triggered by me oversharing. We talk about it with close friends. Otherwise, we just make small talk.”

“Most don’t ask. When they do, it’s such a vague question and I don’t know how to answer it. I don’t think they are prepared for the reality.”

“I cannot go into details with most unless I know they have a background knowledge to understand. You can’t just say he hit a teacher, then smashed his head into a wall…it’s unfathomable to most. And many people would judge you and your child harshly.”

“When she was spiraling in PANDAS in the past, everyone went silent. No one asked about her or our family. I still don’t think some family members every acknowledged her diagnosis.”

“My mother-in-law is an MD. She told us PANDAS was not real.”

(PANSLIFE note: PANDAS/PANS is recognized by the National Institute of Mental Health, by the American Pediatric Association and has been written about extensively in the Journal of Child and Adolescent Psychopharmacology.) 

“It’s a long story.”

“I used to share more, but people don’t understand; how could they? I can’t believe how hard it is, and I live it every day. Too much information can bring unwanted attention from do-gooders who report your family to children’s protective services or advise us what we are doing wrong and how we should get help. As if we haven’t exhausted every resource we can find.”

“We have a reunion coming up and my family didn’t go last year. This year, I don’t want to go either because no one gets it!!! My husband will stay home with my child. I will get questions like where she is, isn’t she don’t better? I try to explain what’s going on but I just get confused looks. My sisters just ask how she is; I just say better and they accept that and walk away. The whole situation is sad. I have no idea what to say to my aunts this year. Sometimes I wish no one asked, then I get upset when no one asked!? Vicious cycle!!!!”

“I say ‘fine’.”

“’I can share some literature with you that explains his medical issues if you are up to reading it, but if not, it’s too complicated.’ Sad thing is no one except one jewel of a family member has even showed interest in reading or understanding anything.”

 "I call it Autoimmune Encephalitis now because PANDAS sounds too cutesy. AE gets more respect."

“We have our good days and our bad days.”

“Distant family doesn’t ask, close family doesn’t understand, so they get a general “OK” response. Only few understand and care to really hear the true answer.”

“In the past, my sister was honest in communicating her thoughts about my lack of parenting skills. However, she gets it now and is one of my greatest long distance supporters. She calls just about every day and lets me tell her what is really going on. I am so thankful for her.”

“We are still working on his health and learning about his immune system. He is not where we would like him to be, but we are continuing to move forward.”

“I say up and down. We’re hanging in there.”

“I tell them he’s struggling, but we’ll get through it. I’m really honest about everything.”

“I’m honest but don’t do a lot of details.”

 "Not everyone believes in chronic Lyme. Not everyone believes that chronic Lyme or Bartonella can cause this much destruction in a small person. I've gotten pretty good at reading facial expressions of disbelief and I've learned when to stop talking."

“Not well at the moment. He is struggling. We are hanging on with hope but thanks for asking.” Then—move to another topic. I don’t over-share. I’ve learned not to after all this time.”

“I say, ‘up and down, as always.”

“She’s doing ok.”

“We say it ebbs and flows and that we just keep going….”

“I answer honestly, depending on how she is at the time.”

“I say fine. But no one really wants to know, unfortunately. In fact, I think they specifically don’t ask about him for that very reason. If I do open up, I often get advice that just makes me angry. But that’s just me.”

“Depends on how they ask. If it’s just small talk, I say ‘fine’ and redirect the conversation. If they want more, they will press on for it. They usually just follow up with ‘Is she still…’ and that’s the cue to go into more detail.”

“One day at a time. I’ve also just recently decided that if someone tries to give me their ‘advice’, I’m going to whip out my phone and read excerpts from this [closed support] group and then ask, ‘What would you do?’”

“People asked how school went this year. My response was, ‘Well, it’s the first year he didn’t get suspended, so better.’”

“My answer depends on the person. If it’s someone that I know cares, I’ll spill the beans. If it's a family member that cares but gets too involved, I halfway spill. If it’s someone making small talk, I say, ‘He’s hanging in there.’”

“I was having a conversation with a friend the other day and said, ‘It’s been a rough road recently.’ At the end of the call, he said, ‘Post an update on Facebook.’ He doesn’t even realize that I left Facebook. I am not posting updates anymore! If you care and want to know, you can call! I don’t have time to look at all the happy posts.”

“It’s complicated but overall, things are going OK.”

“I have always been very honest and factual. I try to educate as to what we are dealing with at the moment. Awareness goes a long way. If they don’t want to know, they won’t ask or will stop asking.”

“I also answer honestly, depending upon how she is at the time they ask. My family makes suggestions but it doesn’t anger me. It comes from love and wanting to help. And they want to understand. I am blessed.”

“I like to think of it as where he was on the road to recovery in terms of percentage. Like 50% better, then 65% and so on. I think that is meaningful to people, so they can understand where your child is in the healing process, and shows there is progress. I also rated each day 0-4 and recorded that so I could see looking back how severe his symptoms were and look for any pattern. 4 was for severe symptoms, and 0 was none, but of course he never got a rating of 0 while healing. I remember towards the end, he was getting many 1's. If someone was interested enough I shared this rating system with them. I think speaking of "symptoms" helps distinguish what is the illness and what is your child.”

“Terrible. Thanks for asking.”

“Great question.”

“He’s coming along. Hoping to see the day that I can say, ‘He’s great!’”

“She goes up and down and she’s down right now but we’re hoping that changes soon.”

"He's being so brave! This is such a challenge for him. We celebrated _____ this week but he really had a tough time with ___"

“I've stopped being truthful. They don't understand and don't truly want to know. I instead say "she struggles with some health issues, but we'll get there" and then I change the subject to something I know they want to talk about - their own kids, themselves, or anything other than my own family.”

“I usually said "this is a good week" or "this is a rough week" and follow up with a sentence that includes the word PANDAS. I find that people are really interested. Ironically, it's actually our immediate family who seems not to get it or be interested in how/why/what we are doing. So it's nice to teach someone about it who seems interested.”

“Better, but he still has a long way to go.”

“Most people really just want to hear a happy ending. There is little understanding for “chronic” or relapsing.”

 

PANS/PANDAS takes its toll on the entire family: parents, siblings, extended family member who choose to care. Sometimes when we try to share, all we hear are crickets. Occasionally, a confidante will actually take the time to listen. And rarely, someone will even admire the persistence of parents who refuse to give up on their beloved children. It sure beats criticism, either direct or implied, or a move to distance oneself from the stricken family.

Facebook has its place in the lives of the struggling. Closed, private support groups offer a refuge for parents fighting daily for the lives of their children. It is often here, with strangers, some of whom become best friends either over the internet or in real-life as well, that parents feel the freedom to confide the most horrific side of PANS. It is here that parents can receive the support and unconditional love so desperately needed through this ordeal.