PANS/PANDAS

Join The Conversation on
PANS/PANDAS
1.6K people
0 stories
219 posts
  • About PANS/PANDAS
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
    Newsletters
    Don’t miss what’s new on The Mighty. We have over 20 email newsletters to choose from, from mental health to chronic illness.
    Browse and Subscribe
    What's New in PANS/PANDAS
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    Chasing Ghosts

    #MentalHealth #PANSPANDAS #Anxiety #AutoimmuneEncephalitis #Genetics

    Our son’s story of finally getting diagnosed with Pediatric Acute-onset Neuropsychiatric
    Syndrome (PANS)

    It was 2013 when I found myself at the local library thumbing through a book about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). I was scanning the pages for a solution on how to “fix” our son but nothing in this story sounded familiar. My husband told me I was chasing ghosts and maybe he was right. But I was still slipping into a yearlong obsession to find answers.
    At the time, Chris was six years old and we had already weathered through a handful of disturbances. With little guidance from our pediatrician, all of Chris’s issues had been explained away. The night terrors, the constant infections and fevers since birth - all were “normal”. But it wasn’t normal to us - he was having two or three a night terrors a night and their effects were spilling into his daytime life; he was exhausted, anxious, and started panicking every time I left the house. We were eventually given the anxiety diagnosis and Chris started meeting with a child therapist to learn how to talk down to his “brain monsters” (if only it had been that easy). Our pediatrician also offered an anti-depressant and we declined. He was only six years old and none of this felt right. A final blow, the pediatrician asked the dreaded question, “Does anyone in the family have a history of mental illness?”. I found myself confessing that at the same age, I also had panic attacks and separation anxiety. I explained that it eventually went away, however, as an adult, it morphed into a generalized anxiety that would rear its head during times of high stress and interestingly, during times of illness. In that moment, after I confessed my little secret, Chris’s health issues seemed to be immediately filed under the “Apple doesn’t fall far from the tree” folder or at least that’s how it felt.
    Through all of these appointments what was never discussed was Chris’s health history. His actual medical file, if anyone had bothered to look, was full of emergency room visits and hospitalizations. By three weeks old Chris spiked a 104 fever and was rushed to the hospital for a full septic work up. He was admitted for five days until the fever subsided. Bloodwork was inconclusive and we were sent home only to be readmitted four days later when another high fever spiked. No explanation from either hospital stay but now our nerves were rattled. In addition to the random high fevers, Chris’s first year of life was riddled with ear infections; ten in ten months to be exact, and two burst ear drums. By the time he turned three, the high fevers seemed normal to us. And then there was the Cervical Adenitis episode - an infected and inflamed lymph node in the neck. After a CT scan and another scheduled surgery, his lump was eventually drained under anesthesia and we were sent home with a three month supply of antibiotics and zero explanation of how or why this happened.
    These medical events from Chris’s infancy and toddler years were never brought up during therapy sessions. And I wanted to know how these awful fevers and infections were related to his night terrors and his growing separation anxiety? These questions wouldn’t leave me and instinct finally started to kick in. I had to stop shying away from pushing the doctors because I was embarrassed about my own history with anxiety. So that’s how I ended up at the library surrounded by medical journals that I barely understood and stories of children with Obsessive Compulsive Disorder (OCD) that came on overnight.
    Life marched along for us and we started chalking Chris’s anxieties to him just being “difficult” or “overtired”. However, after Chris’s 11 year old well visit, life as we knew it would be thrown off course for good. This visit included two booster vaccines (DTap and Meningitis) seven antigens at once. The appointment had been on a Friday and by Sunday night Chris was feverish and complaining of a headache. On Monday the school called, Chris was having a full-blown panic attack and I had to come get him right away. I took him straight to the pediatrician and after a quick eyeballing of his state (dark circles under his eyes and ghost white skin) and a glance at his file (you know the one) the pediatrician dismissed us with a “maybe he’s just afraid of shots” comment. This was the norm for us now. Any time I questioned the connection between Chris’s health and his anxiety I was told again and again that “anxiety just runs in families”.
    Chris sat on the couch that afternoon and sobbed and sobbed.... for hours! I had never witnessed anything like this and that night he started having night terrors again and every night after that for the next month. The school mornings became torture; we had to scrape him off the floor and wrestle him into the car. This was a new hell for our family, the intermittent night terrors and separation anxiety was one thing to deal with, but this, this was sheer awfulness.
    I started chasing ghosts again, but this time I saw them for what they really were; our genetics. With the help of a few selfless academics that took the time to answer my desperate emails I was pointed in the right direction. And that direction was 50 miles north in Boston. The day had finally come and we were seated in front of a doctor that specialized in PANDAS and PANS. He listened to me rattle off Chris’s symptoms, illnesses, lumps, fevers, the whole time he patiently took notes. I had been bracing for the mental illness confession but instead I found myself answering questions about my mother’s sisters that had rheumatic fever as children, my grandmother (their mother) that suffered from debilitating rheumatoid arthritis, and my own mother who had Polymyalgia rheumatica. It was becoming apparent how relevant it was that Autoimmune Disease ran on my side of the family. This doctor discussed with us that Chris most likely had a fever syndrome as an infant and toddler (random fevers and cervical adenitis were hallmarks of an autoinflammatory disorder called Periodic Fever, Aphthous Stomatitis,

    Pharyngitis, Adenitis (PFAPA)). We walked away that day with a diagnosis of PANS. The next stop, tonsillectomy and antibiotics. The ghosts had spoken!
    Chris had not inherited an anxiety disorder; he had inherited an immune system with a roadmap that had mistakes. Slowly, he started getting better. The night terrors disappeared and along with them, the day time anxieties.
    For our son, symptom onset was not overnight. He had so many health issues starting the first few weeks of life, which continued throughout his early childhood. His body was in a near- constant state of infection and inflammation. Add in his medical history to a family history riddled with autoimmune and strep-related health issues and it is no wonder that our son has PANS/PANDAS.
    Today we know the flares will come but we now have a plan. We have doctors to call for advice and treatment and we have a village of families just like ours that we can reach out to. Our hope is that all of this hell that Chris has been through has some purpose. I hope his story resonates with a parent out there searching for answers. It took our family 11 years to get Chris diagnosed and on the path to healing. I hope someone reads this and the time it takes to find help is cut in half. Please remember that the ghosts and secrets we carry with us are there for a reason. #Parenting #Gaslighting

    Post

    I'm new here!

    Hi, nice to meet you! I’m new to The Mighty and look forward to sharing my story & connecting with fellow spoonies.

    #MightyTogether

    #OCD

    #PTSD

    #Migraine

    #Depression

    #Anxiety

    #PANS /PANDAS

    Post

    My week and my attitude, glad to be resting

    I started making plarn today. ( for those who don’t know what plarn is, it’s plastic yarn), and finger crocheting rope and the plarn. I'm gonna join the two together to make a bathroom mat.
    Had a lice scare yesterday. But it turned out to just be a case of dry scalp and bad eyesight. High anxiety, I’m still itching just thinking about it.
    I had a little money left over after paying some bills, just enough to buy myself a new bra. Super excited about that. (Having little to no money can also be a source of anxiety.
    Helped the kids (ages 7,5, & 4), clean up their bedrooms and the play room; an all day event and super frustrating for me.
    (I think I'm what people call an authoritarian when it comes to children and cleaning).
    Cleaned the kitchen, cleaned out the pantry, silverware drawer that was also the "catch all " draw, which drives me crazy. The pots and pans and baking sheets and such, hate all that chaos.
    I totes wish being a grandma was easier, Im too old for this mad house life.
    #parentingpast50
    #tired #anxious #ObsessiveCompulsivePersonalityDisorder
    And a few other issues thrown in for good mesure

    Post
    See full photo

    Cooking and Eating Healthy with Diabetes and Chronic Pain

    Eating healthy is so imperative for anyone, but it becomes even more imperative when living with a condition like diabetes. However, having chronic pain and diabetes makes it more challenging to both eat and cook healthy meals.

    Studies have shown that people with extreme chronic pain found it difficult to manage their diabetes, including taking medication as directed, exercising and eating healthy.

    Here are some ways to help you prepare and eat healthy with diabetes and chronic pain.

    🛒 Simplify Grocery Shopping

    Take advantage of grocery home delivery or pickup services to relieve yourself of the stress of grocery shopping on your own.

    Don't be afraid of a little pre-packaged or processed food. Food cooked fresh is a great thing, but for people with health conditions it's not always possible. Look for less sodium and sugar, fat content, and the number of ingredients on the label. You can use them as starters to your own meal. Choose pre-cut veggies in both fresh and frozen sections to save chopping, have the butcher debone fish or cut up meats, or buy precooked foods like roast chicken to doctor up at home.

    🍴 Working in the Kitchen

    Don’t stand for long stretches. Those with conditions that make standing or bending difficult, or who suffer from painful feet, knees and hips, may benefit from a perch or fold up stool. Use the kitchen table to prepare meals. Use an anti-fatigue kitchen mat if you are standing. Pace yourself and do things in stages. Prepare, rest, then prepare again.

    Use lighter weight pots and pans like silicone cookware, and plastic storage containers to prevent possible injury.

    Dishes, bowls, and eating and cooking utensils can be placed in the dishwasher for easier cleanup. Prepare ahead of time for less mess by using liners in your slow cooker, aluminum foil in your roasting pans, and parchment paper on your cookie sheets.

    If you are in severe pain, ask your partner, kids, or loved ones for help. Ask them to chop foods, fetch ingredients, or load the dishwasher for you.

    🍳 Simply Cooking

    You can simplify your prep and cleanup with one-pot meals. You can cook once and have leftovers, or you can have meals ready to go in the freezer on the days when you aren't feeling well.

    Slow cookers and Instant Pots make it easy to cook food without standing over a stove. All you have to do is throw the ingredients in and let them cook.

    Additionally, use your microwave to steam veggies or rice. Rather than boiling some items, you could just put them in the microwave and heat them up. Make room on the countertop for your microwave so you don't have to reach up or down to use it.

    You can still cook or eat healthy even if you have diabetes and chronic pain if you prepare ahead of time and have the right tools that can help simplify your tasks.

    #Diabetes #DiabetesType2 #DiabetesType1 #prediabetes #ChronicPain #EatingHealthy #ChronicIllness #AutoimmuneDisease #Lifestyle #Food #Health

    Post

    Has anyone experienced trauma from childhood chronic illness?

    I try searching for stuff about it online, but it’s usually like how trauma can cause chronic illness. So the experience feels isolating.

    I’ve been chronically ill since the age of 5, starting with PANDAS (often called BGE). Which is basically brain damage caused by strep throat that gives me ~lovely~ mental and neurological issues.

    And, of course, in true chronic illness fashion, I have since gained more diagnoses, including PTSD.

    And I feel like the actual chronic illnesses that have plagued basically my entire life + how they (and I) were treated because of it: medical neglect, medical abuse, bullying, loss of a normal childhood, etc, has led me to develop a unique type of trauma.

    #PANDAS #PANSPANDAS #PANS #bge #Encephalitis #OCD #Tourettes #PTSD #CPTSD

    Post
    See full photo

    A Path to a Better Self?

    Greetings,
    Please close your eyes and picture this.
    It is a cool November day and you are waiting for a call that can give you the hope you so desperately need right now. A call you have waited for previously that has contributed to years of traumatic roller coaster emotions and constant butterflies fluttering in your stomach and mind.
    The person on the line can give you the time and the peace of mind to make life changing decisions for yourself and your family.
    The phone rings and as you answer you are trying to think positively, staying optimistic but at the same time you feel dread, hopelessness and fear. You are already exhausted when you say hello.
    The voice you are expecting speaks and tells you that they are recording the conversation for quality and training purposes. You agree and wait for the words that can change your current way of life. Your heart is beating, your mind swirling and tears are at the edge of your eyes waiting for the information.
    The answer you have been waiting weeks for is “you have been denied.”
    Your heart sinks, you can’t breathe, your throat tightens and tears flush down your face.
    How can this be? You are supposed to help, aren’t you?
    Why do I have to prove myself again and again?
    I want to scream and swear at you. Even though you are just doing your job I hate you, I want you to just understand what I am feeling, the constant pain, the anxiety, the sadness, the desperation and the feeling that I am doing everything wrong everyday.
    You don’t care, this saves you money and when you hang up your life has not changed at all.
    When I hang up my already exhausting and confusing life has just gotten turned upside down.
    How do you prove an invisible illness that effects your everyday life? Your family? Your job?
    The word “denied” spoken with ease from those unaffected is forcing you to possibly live a life that you weren’t expecting.
    A path that once brought you satisfaction and purpose is now filled with stress and uncomfortable feelings and thoughts. An uncertainty that is no longer in your best interest. Too many factors out of your control, too many lives affected by your long and winding road of healing
    Going backward is not an option and as much as you hate that person that left you stuck and feeling lost. The decision has to be made, change your path or redecorate the one you are on.
    I obviously do not know what the future holds but I know I am grateful for my family, photography, warm hugs, red pandas and my favourite tea cup.
    Just looking for some ᴊᴏʏ & ᴘᴇᴀᴄᴇ on the new path
    I am hoping to take.
    #Anxiety #AnxietyAttack #Depression #longtermdisability #HealthInsurance #Insurance #denied #Newstart #exhusted #tears #sad #MentalHealth #Emotion #PanicAttacks #hopeless #nocontrol #ChronicPain

    Post
    See full photo

    Panda hat

    I think my little sister will like it. It's a gift for her gotcha day. She loves pandas.