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

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

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. 

 

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