"Not Medically Necessary"

by Hila Federman Ralston, guest blogger to PANSLife

Today our 2nd IVIG insurance appeal denial letter came in. The grim verdict of "not medically necessary" echoed off the page into the gaping hole where once resided my hopes and dreams.

I used to be optimistic. I used to think that people sometimes make poor choices but eventually would come around with enough consistency and compassion. Like the quote from my favorite childhood story: " Quests may not simply be abandoned; prophecies may not be left to rot like unpicked fruit; unicorns may go unrescued for a very long time, but not forever." - The Last Unicorn

I wonder who sat behind the paperwork submission for my son's only chance of a semblance of a normal life again. Did they think about a 7 year old boy in his condition- my boy- who just two years ago was a confident, carefree, typical Kindergartner with dirt under his fingernails, a thirst for knowledge, and a bright contagious smile.

Could they imagine this same boy suddenly disabled, littered with anxiety and OCD, losing his ability to write and learn, be social and even participate in his favorite hobbies.

Could they possibly know the long string of doctor appointments, blood draws, therapists, behaviorists, psychiatrists, and medication trials that would follow with no answers and no change until we landed on the right diagnosis.

I know it’s not as easy and clear cut as other well documented and long-standing illnesses, but the multitude of supporting studies that were sent along with the insurance submission should have clued them into the fact that this isn't something that was pulled out of the sky. My boy needs this. His specialists agree- the same ones that are experts in this field and see thousands of patients with his diagnosis.

Who is this person that can decide otherwise?

Do they have the years of experience of seeing kids with similar symptoms and conditions?

Have they weighed in the added cost of continuing long-term antibiotics, therapies and treatments that can't do enough to bring him back?

Do they see the list of increased risks associated with a failing immune system and a brain under attack?

Have they poured over study after study, sifted through forums, researched every possible alternative and seen that we have trialed everything from diet, to acupuncture to psychiatric meds to behavior modification.

Do they know that one short course of oral steroids can bring back the light into his eyes and have him exclaim "mom, today I can convince my amygdala not to be so afraid!" and then watch that light turn right back off like a switch as soon as the course is done?

Would any of this pass even for a second across their mind before they closed his file for good?

This depersonalized medical system is killing our humanity. And for this boy- my boy- it's not good enough. I refuse to stand defeated. We will find a way to get him what he needs. Because children may go unrescued for a very long time, but not forever. It is our job as parents, friends, allies and humans to see them right, to take them in our arms and carry them out of the darkness.

PANDAS Mom on PANDAS Island

I am a PANDAS mom. I am 1 in 200, maybe less. Yet I feel like we, my kids and I, are on our remote little secluded island, surrounded by water, with telescopes that can view the mainland in all its burst of colors and activities. There are many of these secluded islands. You may even know a few moms that are living out there, and they may be PANDAS moms or other type of moms. You may even have a map of some of these remote islands.

But this is my story. See, I started out on the mainland yet I didn't know I was there, really. I had my own struggles. The ones that I now know as Before PANDAS. Before PANDAS, I only knew of raising my children, being a wife and a mom, then a single mom (that's a different story). I knew about the struggles of normal childhood development, and chatted with other mainland moms about the challenges of motherhood while working- breastfeeding (& pumping), toilet training, the "terrible" twos, and then "threes", vacations and illness, sibling rivalry, preschool and school, homework, and having little to no time for the things I used to enjoy. But these were Before PANDAS (let's say "BP" for short) struggles. In the BP timeline, my kids and I were seen and accepted in mainland society. The struggles we faced were acknowledged and encouragement was offered in bundles. I didn't know the benefits of that membership, until we were no longer there. See, even with the BP struggles, a mainland membership included get togethers and activities with other mainland families and groups- playdates and afterschool fun, potlucks and "moms only" dinners, kids’ camps and chatting with moms in the outskirts of school programs, birthdays and parties, lunches at the local eatery, and weekly outings as a family.

You may be thinking, "what's the problem? you can still do all of that", but you are living on the mainland with that wonderful all-inclusive membership. Before I could blink, my kids and I were no longer on the mainland. I woke up on the island, my little PANDAS island. I should have noticed the shift. It happened gradually at first. As our BP struggles morphed into, well, MORE, our mainland all-inclusive membership started getting more and more restrictive. Maybe it shifted, unnoticed to a trial membership- almost like a "well, you can stay on this trial membership for little while, but we need to see that you are back to the "regular" BP struggles or we will have to kick you out" membership. Yes, my trial membership was short lived. At first, they took away the afterschool fun, the chatting with other moms and the playdates. I didn't notice because I was dealing with the MORE struggles. See, I still considered myself a mainland mom. Then they reduced the potlucks, lunches and dinners, birthdays and parties. "How didn't you notice?" you may wonder. Well, when you are placed unknowingly on the mainland trial membership and are dealing with MORE, its impossible to notice the time away from these past all-inclusive activities until they literally vanish.

When I woke up on my PANDAS island one morning, I definitely noticed. It was heartbreaking. There was another level of grief that I don't think I can explain to a mainlander. There are moments from that time that I can only whisper to the wind. I also didn't know I was on a PANDAS island. To me, it was just an island and I didn't know how or why I had suddenly arrived. I kept trying to move back to the mainland but it was impossible. I tried different things. I reached out to my mainland "fixers"- you know, the ones that are supposed to help with any MORE issues. The ones listed on my membership card. My expired membership card. But I didn't know that "fixers" only help mainlanders. They looked at my card, and they kept trying to send me to other mainland fixers. One pointed to another, then that one to another. How does a mainland fixer help you on a PANDAS island unless they physically come over to your island? They don't. I still kept trying. I can tell you about all the time lost spent trying to stay on the mainland, and get help from mainland fixers, but it will make you shake your head and think me an idiot. I definitely feel like one sometimes. That's one effect that the island has on me. It's one I still struggle with.

But enough of my Before PANDAS timeline. Let me tell you a bit about my little PANDAS island, where I still reside. After a while of being on my island, realizing I couldn't move back to the mainland and wanting to know my island's name, I reached out to other island moms. I could see them through my little telescope scattered across the vast ocean. Even though they didn't know the name of my little island, they immediately knew of my journey there. They had been kicked off the mainland too, and remembered the heartache, grief, and isolation of waking up on their little island. They had island resources painstakingly gathered over time and offered encouragement. They could easily travel between islands and also had a list of mainlanders who were willing to travel to islands. I found myself suddenly embraced into these Islanders, a secret exclusive membership of island moms that became my lifeline. One of them was on her own little PANS island, a sister island to PANDAS. She noticed the similarities and gave me the name of a traveling mainlander who knew all about my PANDAS island. In fact, she used to live on one. Armed with the name of my island, I could now figure out how to start living there. Living instead of drowning. I needed to stop trying to swim to the mainland and instead focus on building a safe space on my little PANDAS island.

We have now been on my PANDAS island for a while. I can't say that I don't miss the mainland, but I'm more realistic as to the fact we may never get another membership there. I'm able to visit the mainland during good weather, meet up with mainlanders and commiserate on regular old mainland struggles- all the while keeping our little PANDAS island private. There are some mainlanders that I've opened up to about my PANDAS island, but I know they can never truly grasp the sharpness of our journey, the bitter taste left in my mouth and the overflow of grief over lost future mainland adventures. The tickets I've had to throw away. The dreams lost. The daily island struggles that are oh so much MORE. Now that I know my island's name, I've found other similarly named islands and those moms really understand the full spectrum of being an Islander. And living on my PANDAS island. They are also PANDAS moms. What is a PANDAS mom, you ask? It doesn't really matter what got us to that island. I wish for you to never understand that spectrum. May you always enjoy living on the mainland. The only thing I would like is for you to become more aware of the other islands, so that if you or a friend wakes up on an island, maybe even one called PANDAS, that maybe you/they wouldn't have to struggle quite as long before finding its' name and joining the Islanders. And maybe, just maybe, with this understanding will come more acceptance. Perhaps we can even visit each other more often. With enough visits perhaps the memberships can be disbanded altogether, and we can all be just moms.

~One PANDAS mom

Into the Light

by Jaime Heizler Tan

For years, I have been challenged with trying to find the words worthy of expressing the heartache of what PANDAS has stolen from us. Perhaps it is the struggle of finding words adequate to describe our lives living with pandas or my reluctance to write it down and breathe life into an illness that has already taken so much. However, in response to the disbelief many doctors express, I decided to try to shed some light on what families that battle PANDAS everyday go though. I use the word battle since pandas is like a war we fight. It is a physical war. A mental war. An emotional war. It is a war we are determined to win because we have no choice. We are warrior moms, dads, grandparents, aunts and uncles seeking help for the most important people in our lives- our children. We search and scour the internet and medical journals, spend endless amount of money and share our stories to advocate for our children. I assure you if any doctors who doubt the legitimacy of this illness would spend a week living with a PANDAS family, any doubts would dissipate. Instead, they would see families being ripped apart by an invisible illness that has stolen their child. 

At age 5, we saw her light dim. My once bright eyed, happy go lucky girl started to shy away from social interactions and cling to me. No matter how hard we tried to rekindle the light, it continued to fade. Nothing broke my heart more than watching my amazing beautiful daughter struggle with anxiety at the age of 5. It began with her standing beside me at the computer begging me to look up ways to get bad thoughts out of her mind. It was mild at first but with each exposure to strep, the flares would worsen. There were many times I would take her to the doctor and beg for a strep test without any physical symptoms. Doctors at first would look at me like I was crazy. Until of course, the culture would come back positive. I would like to think we have slowly educated some inexperienced doctors to look further than just a sore throat. 

In fact, what's amazing is that my daughter is the healthiest "sick" kid. She never gets physically sick. All symptoms are either behavioral or neurological, which makes perfect sense since by definition pandas is considered a misdirected immune response. Her body reacts by attacking the brain. 

As the years progressed, we found that anxiety was the least of our worries. Intrusive thoughts invaded my daughter's brain. She would cry every night for fear that she wouldn't wake up in the morning. When she was 9, my daughter handed me a note that said "I love you". When I looked at her she was crying. She told me she wanted me to know that she loved me, even though her brain was telling her to pick up the scissor and stab me. Her thoughts were terrifying to her. These thoughts were holding her prisoner. My innocent, sensitive and wonderful child was afraid she was going to hurt me. I can't imagine how exhausted and frightened she was battling these demons day and night. 

Luckily, we had doctors that ran blood tests and found infections triggering her. Within one week of starting antibiotics, all thoughts of hurting me were gone. 

At 9 years old, she developed an intense fear of throwing up. She restricted her food intake and lost so much weight we were considering hospitalization. My already frail child was wasting away in front of my eyes because she thought food was either poison or would make her sick. Our PANDAS specialist gave us an IV steroid burst and antibiotics. Luckily, within a few weeks she was able to reintroduce foods into her diet again and regain some weight. 

I can continue giving testimonies about how our doctors have proven that my daughters neuropsychiatric symptoms have resolved with antibiotics. We have been in this war with PANDAS for over 6 years. It is a war we are going to win because my daughter is worth fighting for. My mission is for ALL doctors to see how our children are worth fighting for.

I cannot stress the importance of having doctors on our side. On our children's side. We need doctors that are willing to help us turn the light back on in our kids. Don't keep them in the dark.

XXXXX

Who will be the voice for my wife who suffers from Lyme?

by Adam Troy

I am no doctor, I can't even pretend to be, but I have eyes and I can definitely see the toll that this disease has had on my wife. I have seen the number of scoffs from medical officials and the brush off that comes at even the mention that there is something incomplete in their diagnosis. I am, though, a slightly educated person that has a voice and I believe that anyone with a voice should speak up for those who do not have one, for whatever reason. Sometimes people are just so used to trusting their doctors that they just cannot bring themselves to not openly accept what they say. Sometimes people are so scared that they do not realize that they too have a voice in their treatment and medical care. Sometimes people believe that because the doctor has to be so smart and is required to do the right thing every time that they allow themselves to be convinced that they are wrong or crazy, or depressed. Sometimes patients are just too tired of the fight (the everyday fight to exist, to face another day of pain and suffering, to put on a happy face) that they just stop.

My heart goes out to those that don't have anyone to fight for them. I have seen the struggle of constantly explaining things to friends and family. Explaining why she can't do something today or why she can't make it to the family function. I have seen friends turn their backs on my wife and I because they just could not understand what she struggles with. I have watched her cry because she just doesn't want to deal with it anymore. I have watched her walk away from a job that she loved, where she was able to help people, she was able to be a part of a bigger cause than herself. I tried for a full a year to convince her that her health was more important and now I have to watch her wrestle with that realization. I watch her cry over not being able to enjoy her granddaughter. I feel the financial, burden of dealing with a disease that the system believes is a myth.

 
I have wanted to sit down and tell her story so many times but have struggled over how to do so. Do I tell you about coming home from a vacation and realizing that there was something wrong with her? Do I tell about going to doctors who only wanted to prescribe narcotics and then treat her like a criminal after doing so? Or the many doctors that came after and just couldn't figure out what was going on? Or how many times doctors have looked at her with a smile and told her not to worry saying, "Let me worry about this"? I don't know if there was anything as disheartening or, for that matter, infuriating, as the doctor that refused to run the tests that we knew should be run and then just said "it's all in your head". 

 
To that doctor and to those like him I hope that they never have to walk a day in my shoes or, heaven forbid it, a day in hers. I would not wish this on anyone. I could not conceive of putting this on another person. But what will it take? How will the system that so adamantly refuses to acknowledge the existence of such a wide spread problem actually begin to believe the oath they took when they became doctors? What has caused the medical community, except for a few, to close their eyes to an epidemic? How can 300,000 newly diagnosed cases each year, according to the CDC, be written off as somatoform disorder after a round of antiquated treatment doesn't work? Where is the humanity in this? Who will be the voice for these people? Who will be the voice for my wife? Though it may just be a small voice in hurricane I cannot be quiet. I will not be quiet.

 
"I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may out weigh the surgeons knife or chemists drug." This is part of the Hippocratic oath. Where is this in the treatment of Lyme disease? How much sympathy is involved when the answer is simply, it must be in your head? There is no warmth or understanding involved when there is no real attempt to find a cure. The only thing that is done here is that the doctors are choosing not to become martyrs on a cross, they are choosing not to disagree with the CDC. My thanks goes to the doctors who HAVE staked their career on the fulfillment of this oath. I believe that you took your oath seriously and truly did care for your patients and some have paid dearly for that. I believe that the only way to change anything is try to be the change, so we have nothing to lose, I watch my wife carry her cross every day, I carry it for her most days so I will not let that be in vane. There must be a change.

 
"I will not be ashamed to say 'I know not,' nor will I fail to call in my colleagues when the skill of another is needed for a patient's recovery." More from the Hippocratic oath, Where is the consultation with others? Is it pride that keeps doctors from admitting that maybe they don't have all of the answers? Pride has no place here, your pride is a poor substitute for the sufferers' basic human dignity. Call in as many doctors as you have to, we're not afraid of another doctor. Anyone suffering from Lyme has seen enough doctors that they are no longer afraid, if the next one can get closer to an understanding. Calling a condition that you do not understand psychosomatic is lazy, it's more than that, it's demoralizing. You don't have to hear my wife beg me to believe her. Every time without fail, she begs me to reassure her that I believe she's not making this up. When a doctor says that, they plant the seed that the sufferer should just give up and that all of the people who have walked away were right to do so. You plant the seed that they need to give up because there is no hope. YOU ARE WRONG!! I will say it loud because I have nothing to lose. THE CDC IS WRONG, THE IDSA IS WRONG!! Any doctor who wants to tell my wife that she is not sick, "YOU ARE WRONG!!"

The Oath goes on to say that doctors do not simply "...treat a fever, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems if I am to care adequately for the sick." So, here I am, the voice of the affected family. I want answers, I want real answers to the questions I am asking. I am not asking what she is suffering from, I know that. I am not asking what her treatment will be, I know the answer to that. I am asking when will she be given validation and seen as sick human being and not some lunatic to be disregarded. I have seen the rashes, they are not in my head. I have seen the seizures, they are not in my head. I have seen the tears, they are not in my head. I have sat through every doctors appointment and heard every confused answer from every doctor who was too proud to say what they know to be true or too afraid to run the right tests because they didn't really want to see the answer, these are not in my head. Subsequently, I have picked up every prescription that should never have been prescribed because a doctor felt like he had to say or do something. A word of advice: A simple I don't know would be better than an unnecessary medicine. But that's the rub, most of you do know, you know damn well what is going on and you won't say it because it will cost you too much.

 
"I will prevent disease whenever I can, for prevention is preferable to cure." I've said before that I am no doctor but it seems to me that you cannot prevent something if you refuse to look at it when it's right in front of your face. If a gun is being held to your head, closing your eyes does not make it go away. Look at the facts, these are numbers from the CDC's own survey conducted in 2012, concerning the recovery time for Lyme patients who were treated by the IDSA guideline's from 2006:

-39% were treated for less than 4 weeks (consistent with IDSA) 
-20% were treated for 5 – 8 weeks 
-36% were treated more than 8 weeks 
-5% did not receive Tx
(https://www.lymedisease.org/alix-mayer-cdc-2/)

 
It's interesting to me that more than half of the diagnosed cases require treatment beyond the IDSA guidelines. I am a numbers guy, I work in sales, in evaluating the effectiveness of one of my employees all I have to do is look at the numbers. The numbers don't lie. As a matter of fact, I am held accountable to those numbers and if they are consistently short of where they need to be then I have to rethink what I am doing and change them or else I get fired. Who is holding the CDC and the IDSA accountable to their numbers? There are over 3,000,000 cases of Lyme in the U.S.. alone. Those are the diagnosed cases. How many people are suffering in silence because doctors just don't have an answer? How many more cases would we see and treat in this country if there was legitimacy given to those we already know about? Someone has to answer these questions. Is it our doctors? Senators? Governors? The President? I say yes to all of them. They need to hear our voices. One small voice in a hurricane will get lost but if there are enough small voices then eventually someone hears and maybe a rescue can be made.

Adam Troy is the loving husband of Lisa Quinn Troy who is one of the many sufferers of Lyme Disease. He is also a General Manager of a construction staffing firm. Adam is an advocate for change.

How to De-Stress

Have any stresses in your life?  I’m sure you do; don’t we all. I have dealt with a child with special needs with Asperger’s Syndrome, raising two other children, adopting two additional children due to a tragedy with their parents, all while constructing a new building for my business that happened to go $400,000 over budget due to rising energy costs in 2008.  Talking about challenges, I would say that my wife and I have had our share.  Miraculously, throughout all of the challenges, I was still able to stay centered and focused on the desired end result.  In fact, I remember my banker saying that he had never seen anyone overcome so many obstacles and still have a smile.  Many people would ask how I did it.  Are you curious?  Well, it’s simple.  I practice daily and consistent meditation.

See, I am a 30 year plus Martial Arts practitioner and a professional martial artist.  No, that doesn’t mean I go and fight all over the world.  It means that I make a living by teaching and training in the martial arts.  I have been blessed to have a mentor (Grandmaster Byung Min Kim) who has been guiding me in the spiritual aspects of martial arts, including meditation.   I have been practicing meditation consistently for over 15 years and I have to say, without a doubt, it is the best practice that anybody could do.  Especially if they experience stressful situations or challenges that must overcome.

Why?  It can be summed up in two words.  MENTAL REJUVENATION.  Let me ask you a question.  Have you ever had an emotionally challenging day and become physically drained?  Yet, you have not exercised?  Of course you have; we all have.  Do you know why?  It is because all of your mental energy was depleted and you had nothing left to give.  It is as if your cell phone died and needed recharging.  The challenge that most people have is that they don’t give themselves an opportunity to recharge their batteries.  Therefore, they are stuck in the midst of the crisis or the situation and not able to approach things with a clear mind.  That is where meditation comes in.

Meditation gives you the opportunity to recharge your batteries and approach things from a 30,000-foot view rather then in the middle.  Here’s another angle for you.  Did you know that our personal energy is like a hose?  When there is stress, doubt, fear, frustration or any negative emotion, this causes a kink in your energy hose.  As a result, thought-energy is unable to flow freely and effortlessly through you and you remain stuck without a solution.

Here is another question for you.  Have you ever had an idea come to you in the shower?  What about when you were exercising?  Or maybe right before you went to sleep?  Has that ever happened?  My guess is yes and it is important to know why.  When you are relaxed and able to calm your mind, all those kinks in your energy hose becomes undone and your thought-energy flows more freely.  This is, without a doubt, the biggest benefit of meditation.

OK, so how do I meditate?  First thing is you will need to breathe properly.  Most people breathe with their upper chest and their lungs.  While this is correct, it is the deep abdominal breathing that brings you the most benefit.  If you ever watch a baby breathe, you will notice that their belly will go in and out, not their chest.  So, as you inhale, you want to push out your lower stomach, and as you exhale, your lower stomach retracts.  It will feel like backwards breathing at first but once you get used to it, it will feel like second nature.   Practice breathing like this when you are driving, when you are sitting, when you are experiencing stress, whenever you can and this alone will help you.  This is the first step.  Once you learn how to breathe properly, we can get you into practicing meditation.

Now, next step is to find a quiet place to practice meditation.  I recommend a chair or pillow in front of your bed.  When I wake up in the morning, I first drink some water, use the bathroom and go right into meditation in front of my bed.   Sit down comfortably, making sure your back is completely erect, close your eyes and count your breaths.  Every inhale and exhale is a count of one. Give yourself a goal to start with.  For example, 50 deep breaths may turn out to be a fifteen-minute meditation.  100 deep breaths may turn out to be a half hour.  When you are in meditation, thoughts will come into your mind.  Your job is to not resist those thoughts but to let them roll out as quickly as they came in.  If you think about resisting the thought, you will not be able to focus on the counting.  Over time, this will relax you and each meditation will feel as if you were on a mini vacation.  Trust me, it works.

Recommendation:  Start small at first by doing ten-minute meditations and as that gets easier, add on the time.  Before you know it, you will be practicing an hour a day.  Remember to focus solely on your breathing and practice first thing as you wake up in the morning.   Our mind is a little less filled with clutter at this time and it is a bit more impactful.  Lastly, please do not expect immediate results after one ten-minute meditation.  It takes diligence and consistency for you to receive the mental clarity you are seeking. As with anything, it takes time. 

I truly believe that this is what has helped me through extremely challenging times and still helps me to this day.  I hope you receive the same kind of benefits that I have.

Enjoy and happy meditating!

Chris Berlow

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Editor's Note: Master Chris Berlow is a 6th degree black belt and the owner of the highly successful United Martial Arts Centers in Briarcliff Manor NY. He’s been teaching Martial Arts and Meditation for over 20 years. He is also a principal of EMPOWERED MASTERY, a personal transformation coaching firm that has had a positive impact on thousands of individuals. Additionally, Master Berlow is a co-author of the best-selling book, “YOU HAVE INFINITE POWER,” and the author of “IT’S NOT ABOUT THE BELT.” He is currently producing a video to be released this August that will instruct parents on how to do mindful meditation with children.