Tuesday
Jun272023

Ticks & Trauma--What I Have Learned


When someone once declared that this PANDAS/PANS/Lyme thing is a marathon, not a race, I did not realize that it might be a lifelong struggle. It's not that I didn't pace myself; I had to, as the Lyme that hid in my body surfaced after my children became ill.

I take that back. I don't pace myself. I hurl myself into activities and I don't slow until my body screams at me. Now, my entire inner being is begging to be released from clinging to the myths I fed myself: we will all be better, this too shall pass, if you work hard, you will succeed. 

Treating infections is not like studying to graduate with an A+ average. No matter how hard one toils, no matter how much knowledge one acquires, no matter how many treatments one attempts, there are no guarantees.

I have learned a multitude of things on this journey:

1) Corruption amongst insurers and medical organizations (and many others) is not conspiracy theory. If you know, you know. It's not my place to convince anyone. The info is pervasive even if one chooses to remain ignorant. Once you open that door, there is no other way to view the world.

2) Our kids are resilient. Not perfect. Not cured. But they are fighters. Some of our kids suffer every single day.

3) There are many paths to earning a high school degree. There is no one correct way. College does not need to be the end-all for everyone. 

4) Those children who seemingly sail through childhood and teen years with no problems (at least on social media) are not without their own medical or mental health issues. 

5) More people are questioning food and vaccines, chemicals and post-infectious reactions than ever before.

6) I can get by with the love of a few very important people in my life.

7) My PANDAS/PANS parent friends are some of the strongest people one can ever meet; they were not necessarily "made" that way but transformed themselves in order to be able to save their children. I would trust many of these people with my life. 

8) PTSD lurks behind every corner and will not disappear simply because our offspring is safe for today. In fact, PTSD sees an opening and bangs at the door. Caregiver trauma and parent trauma is haunting, taunting and daunting.

9) Even after all these years, medical practitioners do not have a cure for these illnesses. Too many pediatricians and internists know NOTHING about these diseases, still. Gaslighting continues to occur--I see it all over the support groups, when parents are distressed because of medical practitioners undermining them.

10) Flares are to be expected. Be prepared to treat at any moment in time.

11) Exercise is a strong antidepressant. An inability to exercise in someone who craves it can result in depression.

12) When treating, jot down your detox plan, for when the Herxheimer's reaction strikes, you may completely forget to take your burber-pinella drops, etc.

13) PANDAS/PANS is misnomered. It is NOT merely pediatric and in fact, can strike adults as well. Not only that, but the syndrome does NOT disappear when a child matures into a teen or adult. However, immune systems can be strengthened. Maturity helps an individual learn to conceal or manage symptoms.

14) Some of the hardest-working advocates for these illnesses contend with them themselves. A few parents of children with PANDAS and Lyme also suffer from these illnesses and are some of the most incredible people one could ever hope to know.

15) Moms are usually the ones on the front lines. A few dads are there also, but it can take years for dads to join the fight, to read information, to understand that these problems cannot be easily remedied or made to disappear. It's lonely for the dads who are fighting. Sisterhood amongst the moms of kids with PANDAS is strong.

16) Lyme and PANDAS can strike any ethnic, "racial", and cultural group. Not everyone can find their way to a diagnosis or to online support systems.

17) I am stronger than I look. I am also tired of being told that I am resilient. I want to go out and play and wipe my mind and body of tick-borne disease and despair. Some days, I wish to escape this heavy world. See #20 and #21. I have learned to compartmentalize. When absorbed in other activities (such as work), I can temporarily forget all else.

18) I carry enough hope in me for my entire family, as do many other parents with sick children. This in itself can be a burden.

19) We are tired of people not understanding that our children have compromised immune systems. That includes the government when it demands that we pepper our arms with injections, especially those that have not been thoroughly tested. This includes doctors who want to do vaccine challenges to see how a child reacts, when any trigger to the immune system can cause a flare (that can last months if not longer). We are fatigued when family members don't bother to read anything about these conditions and yet find it within themselves to judge, demand, or criticize. We are tired of being labeled anti-vax when we are vaccine-cautious and want to understand the science behind all medical interventions.

20) Dogs. Pure love. Incredibly rewarding.

21) I am far from being a kid yet I still look at a tree with lots of low-lying limbs and fantasize about climbing it. I still think it awesome to jump into a pile of leaves. But leaves hide ticks and even the tiniest of ticks can infect a fully grown person with Borrelia, Bartonella, Babesia and a whole lot more. So not worth it. 

22) At some point, we need to find ourselves and take our own lives back. That means limiting the time we research medical studies. That means soaking our souls in arts and sports and interests so that we are replenished. 

23) Life will edge forward no matter what. Years ago, i wrote a poem about my hands--I believed that my hands would age, as they do, and that my children would be better when my hands showed aged spots and crevices. That the passing of time would indicate healing. The passage of time does not bring about healing; we need to actively seek treatmemt. 

Sometimes our kids don't. Sometimes we need to let go and let them fall because we have no control. We cannot force our children to take those pills we discover hidden in crevices of couches and bookbags. We cannot require young adults to throw themselves into horrible herxes that require hospitalization. We cannot sage these illnesses out of the rooms of our lives.

But we can continue with our own accomplishments, pleasures, pursuits. And treatments. Be the role model.

24) A newbie parent who is in the midst of researching will talk only about these diseases. Sometimes the only way to quickly accumulate the knowledge necessary is to immerse oneself in it, even to obsess about it. The overwhelm of a newbie is all-encompassing.

25) There is no great plan or design. Our children were not chosen to receive these illnesses. There is no purpose to suffering. We can attempt to aid our children to find the lights in their own lives, whether it be through a therapeutic horseback riding program or another activity. This disease may linger indefinitely. Our job as parents will never be done. There is no great meaning hidden in our struggles; our world is existential. 

I have also learned how to not get what I want. I have had to change expectations, live only in today, value all the good that has been in my life. I wanted to be that family that regained what we had lost and leapt forward from there. Instead, we are the family that is learning to grow into the space our house settled, post, or even midst tornado. I am learning to deal with the grief of lost years, lost dreams and to create new ones.

Monday
Nov222021

On Loss, Time & Hope

Time is measured in refilling monthly pill prescriptions, laundry twice a week (if not more frequently), daily dishes, brushing and flossing my teeth. Again. Again. Again. 

Time is measured in the number of years we've dealt with PANS and Lyme. Strep. Any infection.

And time is measured by all we have lost, from the absence of normality in the lives of my children to the loss of our beloved older dog this year. 

And the loss of my cousin, to pancreatic cancer this year.

The loss of my father-in-law, who died peacefully at home, surrounded by loved ones.

The loss of my mother, to Covid, not so peacefully, and alone.

The days rush by with their busy-ness, the hectic scattering of activity and work. And then the weekend stops by. Fatigue folds itself around me, much as the fog smothers the earth. Sadness seeps in under the layers of heaviness and I feel. 

I find that when I'm in crisis, when something is terribly wrong with one of the children, I act. I react. I remain calm. I do. I'm strong. 

It's in those in-between minutes, Saturdays, and the Three A.M. Room, when everyone else sleeps, when I wake to find myself alone with my thoughts, that grief finds a perch. 

To be fair, time is also measured in the bicycle rides my husband and I challenge ourselves with, and our climbing speeds.

Time is also measured in the years since our last horrible episode endured by one of the kids.

And time is measured by the longevity of friendships and the love of close family that have helped us rise above the hardships.

Mindfulness means that I think only about right now, this moment in time, where one child is happy and the other, at least, is safe, and I am warm and snug in my house, a house with light in the midst of a cold, dark autumn night.

A husband who wants to drive me to pick up one of our kids because he knows I'm tired. The dog who is thrilled to join us.

The cozy, hot apple tea made by my daugher for me.

Comfort can be found in the smallest of things. 

Comfort means that both kids are safe for today, that we are a family and despite the cold world outside, we share love and warmth. 

But comfort cannot dim the truth that PANS will not disappear on its own. PANS (and Bartonella) do not resolve without interventions and when children and adults have been sick for too long and refuse medical treatments, we parents are helpless. 

Much as I was helpless to save my cousin, my dog, my mother.

But perhaps time also offers hope.

Maybe time will move them to a maturity wherein they choose for themselves to conquer these illnesses.

Perhaps time will provide us with stronger research and remedies.

And maybe someday, we will measure time in the number of days we celebrate healing.

Thursday
Aug122021

ADVOCACY SPOTLIGHT: Julie Cox

This is a series of interviews with influential PANDAS/PANS and Lyme advocates. How do they DO it? How do they contend with their own challenges as well as day-to-day life and advocacy fatigue? What can we learn from these incredible people?

From the hearts of some of the most resilient, hard-working, wanting-to-make-a-difference warriors... I introduce to you: Julie Cox, LCSW.

I have been a warrior since the day my daughter was born.  That was 17 years ago.  My full-term daughter struggled at birth and was transported to a neonatal ICU (NICU) at a separate hospital from me.  I had had a C-section and the hospital where I gave birth did not have a NICU.  This separation from my baby when her health was so unstable was traumatic for all of us.  

I was in shock for several hours after my daughter was separated from me.  After those few hours, my warrior self kicked in and I began to ask questions of the hospital staff: ”Why didn’t they transfer me to be with my baby!?”  No one could give me a definitive answer.

When my husband, who was at the other hospital with my daughter, called to tell me that they weren’t sure my daughter was going to survive, my warrior self became stronger, and angry. I believe that anger can be a warrior parent’s best asset.  It gives us strength and courage to stand up, speak up and go after what we know is right.

I demanded that I be discharged early so that I could go to the other hospital to be with my daughter.  My doctor did not agree to release me immediately, but she did agree to release me early, after a lot of insistence on my part.

When I arrived at the other hospital, my daughter was in the highest level NICU available and her survival was guarded.  I knew how important it was for her to hear my voice, so I spoke to her through the incubator.  Immediately, she turned towards me, recognizing my voice and reached towards me.  Her vitals significantly improved within minutes.  The nurses looked surprised, but I wasn’t!  All I could think was, “Well of course she is going to do better when she hears her mother’s voice!  She has lived inside me all this time and I am the only familiar thing to her!”  My daughter’s health continued to stabilize over  the next 12 hours, and within 5 days she was discharged to go home.

Little did I know that my daughter’s NICU experience wouldn’t be the end of my warrior experience.  I didn’t know then for the next 17 years I would continue to call upon my inner warrior to advocate for my daughter regarding ongoing medical issues, developmental issues, mental health issues, academic issues and social issues.   

What has kept me going as a warrior for these past 17 years is my personal belief that every child deserves the opportunity to have a good life.  It doesn’t have to be a perfect life, but all kids need to know that someone worked their hardest to give them the best chance to have a good life.

This belief that all kids deserve a chance at a good life led me to dedicate my therapy practice to children and families, including many PANDAS/PANS/Lyme families. To this day, I continue to feel a need to assure other parents and kids that they are not alone, and since I have walked much of this path already, I will be there to guide them and help them.  

One important piece of advice that I give warrior parents is to find ways to support yourself while you support your PANDAS/PANS child/children.  One way to do this is to be part of the many Facebook groups dedicated to PANDAS/PANS.  Connect with the parents in the group, reach out to them, ask to private message them, and if you connect, make time to talk on the phone or meet up if you are local to each other.  This has made a world of difference for myself and so many warrior parents.  

The stronger our PANDAS/PANS communities are, the more we will be able to enact change.  Not only is there strength in numbers, but also, giving and receiving support from each other strengthens our resilience as warriors.

*****

Note: Being a long-time warrior has led Julie to learn numerous therapy approaches to help kids and families. These therapy approaches include ERP (Exposure and Response Prevention) for OCD and EMDR (Eye Movement Desensitization and Reprocessing) for anxiety, trauma, phobias and grief. She is also trained in DBT (Dialectical Behavior Therapy) for kids, teens and families to learn how to handle big emotions, and play therapy/sand tray work to help kids process feelings when words aren’t available or the best approach.  

Outside of her therapy practice, Julie created a Facebook group for parents of kids with PANDAS/PANS to come together and support each other called Parenting with PANS hosted by Julie Cox. Her website www.parentingwithpans.com also provides resources, blogs and an upcoming course for PANDAS/PANS parents.

 

Thursday
Aug122021

ADVOCACY SPOTLIGHT: Natalie Christenson Barnes

This is a series of interviews with influential PANDAS/PANS and Lyme advocates. How do they DO it? How do they contend with their own challenges as well as day-to-day life and advocacy fatigue? What can we learn from these incredible people?

From the hearts of some of the most resilient, hard-working, wanting-to-make-a-difference warriors... I introduce to you: Natalie Christenson Barnes of Minnesota.


 

Natalie: Our son Parker's story is just one among so many of the hundreds of thousands of children affected by autoimmune basal ganglia encephalitis.

Our parent community is key. We can change the scope of treatment: early identification, insurance coverage, legislation for awareness and ultimately healing our kids.

We need to move forward as the warriors that we are. The path will be frought with frustrations and challenges, but we together will push the pendulum in the right direction.

Go forth. Be bold. Be confident. We are victors for our kids, their heroes and advocates.

They have been stolen from us but we will not surrender. We will see them return to us fully whole and healed. Happily walking through life as heroes in their own right.

Parker didn’t even attend school for over 2 years. 

We advocated and were able to get an insurance mandate bill passed in Minnesota. Parker graduated from 8th grade with highest honors. He was the keynote speaker.....from a child who lost his ability to talk during his worst days.

Thursday
Jul222021

ADVOCACY SPOTLIGHT: Dorothy Leland

This is a series of interviews with influential PANDAS/PANS and Lyme advocates. How do they DO it? How do they contend with their own challenges as well as day-to-day life and advocacy fatigue? What can we learn from these incredible people?

From the hearts of some of the most resilient, hard-working, wanting-to-make-a-difference warriors... I introduce to you: Dorothy Leland, Vice President, LymeDisease.org

 

Advocacy Fatigue and Resiliency

By Dorothy Leland

I’ve been involved with Lyme disease advocacy ever since my then-13-year-old daughter started experiencing troubling physical symptoms back in 2005. Of course, at first, we didn’t know we were dealing with Lyme and related ills. So, I was just advocating for my daughter’s health—trying to get help for the mysterious condition that forced her into a wheelchair practically overnight.

By the time we finally figured out that we were dealing with Lyme and made our way to a Lyme-literate physician, our family came to recognize that we were battling systemic deficiencies within the whole medical system. This was a much bigger problem than just one child’s medical needs. However, that one child’s needs overwhelmed me, and for quite a while, I couldn’t think beyond what it took to care for her and to keep our family functioning. Doing anything more than that was utterly beyond my capabilities.

In time, however, her health slowly improved—and as it did, my world opened up a bit. I learned as much as I could about Lyme-related issues and looked for ways to get involved. I co-founded a Lyme support group and helped lead it for eight years. I also became active with LymeDisease.org. 

In 2009, I started writing the “Touched by Lyme” blog, now in its twelfth year. A few years later, I co-wrote a book called “When Your Child Has Lyme Disease: A Parent’s Survival Guide,” with Sandra Berenbaum, a Lyme-literate family therapist. Throughout my years with LymeDisease.org, I have helped put on Lyme patient conferences, organized protests against the IDSA Lyme guidelines, lobbied for legislation in Washington DC, and given both verbal and written comments to the federal Tick-Borne Disease Working Group. 

I’ve met many patients and advocates over the years and am very familiar with the concept of “advocacy fatigue.” Many advocates are struggling with chronic tick-borne infections themselves or have loved ones who do. They are highly motivated to try to change the world for the better. But sometimes, they overextend themselves—and suffer because of it. About 10 years ago, a woman I knew overcame years of sickness and disability to finally achieve what seemed like a good state of health. It was a dream of hers to return to long-distance cycling—this time to raise money for Lyme research. Although her first big ride was a fundraising success, she had a huge relapse after all that exertion. It set her health way back. It must have been terribly discouraging for her.

When I first entered Lyme advocacy, Facebook and Twitter were in their infancy. And Instagram hadn’t been invented yet. Now, these and other social media platforms offer opportunities for people to help raise Lyme disease awareness in ways that don’t require a lot of physical stamina. 

Furthermore, because of changes brought about by the COVID pandemic, many events that used to be in person have migrated to being held online. This has been a boon for would-be advocates. I was pleased to participate in the Center For Lyme Advocacy’s “Virtual Fly-in” in February 2021. Advocates from all over the US met with Congressional staffers to lobby for increase federal funding for Lyme disease—via zoom. As much as I had enjoyed prior in-person meetings in Washington DC, the new way of doing things was so much easier, on so many levels. (And, importantly, many more people were able to participate.) 

So, what advice would I offer other advocates, on preventing “advocacy fatigue”?

1. Take advantage of online resources to educate yourself as much as possible about what’s going on in the Lyme community and related issues. (Shameless plug: Sign up for LymeDisease.org’s email newsletters [link: https://www.lymedisease.org/sign-up-lyme-disease-newsletter/]. I curate these weekly new summaries and strive to keep my readers well-informed!)

2. Join online forums to foster connections with others in the Lyme community. Facebook offers a lot of such groups. Another choice is US National Lyme group, also sponsored by LymeDisease.org. [link: https://groups.lymedisease.org/g/Lyme]

3. Don’t ignore your own physical and emotional needs. One advocate I know who overcame serious illness arranges her life to take a nap every afternoon, without fail. She knows it’s essential for her continued well-being.

4. Even though I’m pointing you towards a lot of online activity, don’t be its captive. Be willing to periodically unplug from the world of Lyme activity—and from the internet in general. Get out in nature, if you’re able to (with proper tick protection of course). When you can do it safely, connect with other people in person. And find whatever it is that nourishes you spiritually—and do it often.

You are more use to yourself, the Lyme community, and everybody else if you DON’T run yourself into the ground!