Excerpt from the blog, Hidden Illness: Our Story of Recovery from PANS/PANDAS/LYME.
STRENGTH HOPE LOVE
Over the years we got a lot of well-meaning, really bad advice. In the beginning, one organization told me it wasn't Sensory Processing Disorder if it didn’t last all day. Our pediatrician said the UTI symptoms of frequency, accidents, and obsessive wiping, might be due to constipation even though I assured them she was perfectly regular. The sudden separation anxiety was a phase. The emotional outbursts that I could not console were typical developmental behaviors. No one knew what to make of it so when the symptoms subsided after a few weeks, we simply moved on.
Melatonin didn’t help. Reward charts brought her crushing disappointment when she couldn’t achieve her goals; dangling a carrot just out of reach is cruel. A psychologist, who couldn't get my daughter to look at him never mind talk to him, decided it was purely behavioral. I was instructed to tell her that these outbursts were "simply not allowed". He told me to take away something of great importance every time she didn't comply. "She will learn" he said, and me, desperate to bring her some relief, tried it. Desperate times. It only took me a few days to come to my senses and realize she could not help herself, but the mama guilt from a few of those nights is raw in my heart when I remember.
This child didn't need to learn these things; she had already learned all of it. She had hit every one of her developmental milestones on time but had somehow lost these abilities that had once come so naturally to her. This child, tortured from the inside, could not simply comply; she was sick and no one knew. I had always parented with a gentle guiding hand, setting boundaries and letting natural consequences aid our children in making better choices. Now I found myself reaching for straws, tough love, rewards, strong consequences, and some ABA therapy techniques. Nothing helped.
When the dark of night quieted my mind, my heart silently screamed out, "HOW could this have happened? Why? What happened to my child?" There had been no major life changes, no trauma. Nothing to warrant such a change in my child. She had been fine. I could remember her being a sensitive but pretty typical child in the not so distant past. What could have gone wrong?
PANS PANDAS Goals for 2018 from our Community!
We asked our PANS PANDAS Community what their PANS PANDAS Goals are for the New Year. We know recovery - or maintaining recovery - is at the top of the list. But how do we get there? Sometimes it helps to write down what you want to accomplish and how you are going to achieve it. Make a plan and put it into action! Below is a list of the 2018 Goals that were posted in response to our posts on social media or emailed to us. There were several people that had the same or very similar goals so we condensed them into one goal. We also provided suggestions to help you turn your Goals and Resolutions into Action!!
Get out that index card, write down your goals and the steps you are going to take. Pin it somewhere you see it every day. Turn Goals and Resolutions into Action!
GOAL: I want to read and have my family read what other families have gone through so we can learn from them but I also want to read success stories. I need to find hope and inspiration.
Suggestion: NEPANS has an entire blog section on PANS Stories! We encourage everyone to read them. We have tried to include many stories that cover a wide range of topics. You will find hope!
We encourage you to share your story with us. Stories can be anonymous or not. We can help you pinpoint what part of the journey to focus on and help you edit it. You don’t have to be a great writer. More information on PANS Stories
GOAL: I need to take care of myself this year.
Suggestion: Care for the Caregiver (that means YOU) more. It takes practice to take care of oneself! Make a schedule. Make yourself accountable to YOU! Sometimes starting with even the smallest Me Moment can be helpful. Remember these sayings that might sound trite but are true: you really can’t pour from an empty cup and you need to put your oxygen mask on first. It sometimes feels like the most impossible task but you can do it. Walk around the block. Drink more water. Actually sleep. See a therapist. Call a friend. Tell your husband to do the laundry. Put down the doughnut.
GOAL: To focus more on the cans than the cant’s. I have only seen the negative for the past year and it really is a terrible place to live
Comment: Yes you can!! You are already half way there when you believe you CAN! The negatives are still there but give as much weight as possible to the positives. You do not need all that negative weight on your shoulders.
GOAL: Be more consistent in giving supplements/meds prescribed by the doctor. We had a bad reaction to something and so we pulled everything to figure out what it was and have not been as consistent with what we know works and with starting new ones.
Suggestion 1: When starting a batch of new prescriptions/supplements, print out a blank calendar and write in what date you will start a new med and at what dose. Then you are not scrambling to remember what to do when.
Suggestion 2: There are lots of great pill canisters. Get different color boxes for morning, afternoon, dinner, before bed pills! It may seem like a lot of containers but it makes the day to day so much easier! Set aside twice a month to refill them. This may take a chunk of time but at least you are not scrambling to figure out what to give when in between morning anxiety, homework stress, lacrosse practice and the endless bedtime routine on a daily basis.
GOAL: Create better documentation of labs and doctor’s notes
Suggestion 1: Get a 3” binder, a really good three-hole punch and a bunch of post it tabs. Put everything in chronologically. Use post it note tabs to mark important labs and doctor’s notes.
Suggestion 2: Scan most recent labs and important diagnosis notes from the doctor and keep on your phone in case of an emergency.
Suggestion 3: Have an separate binder for school. Make a binder for each year. Include the 504 plan, IEP, all drafts of the IEP, all correspondence, school and home work examples, doctor letters, evaluations and so on. You can put all these categories in separate tabs OR you can put it in chronologically and use post it tabs to make small sections. Make sure you write in the date on anything that is not already dated. Trust us. If that binder drops on the ground and blows up and everything scatters, you will want to know what order to put it all back in.
GOAL: I need to get better daily/weekly feedback on my child’s symptoms at school.
Suggestion: Not knowing the exact situation with your child, we will just talk generally. The school probably does not have anything set up already so you will have to make up a sheet. You may need an IEP and specific goals to get tracking actually done. But we suggest making a simple sheet that the teacher/s can check off symptoms with areas to elaborate as needed. You base the sheet off your child’s IEP/504 Accommodations. For example:
GOAL: I need to track behaviors/symptoms/triggers.
Suggestion: There is an app for your phone to track symptoms. PANDAS/PANS Journal.
You can also go old school and download some behavior tracking sheets that you can fill in daily. NEPANS- PANS PANDAS Symptom Scales/Tracking Tools
GOAL: I need to help my child set some achievable goals this year too.
Suggestion: What a great idea! Have them write up their own card and place it on the fridge and make sure they know the whole family is involved in supporting their progress and effort! Don't forget to check in as a family and see how those goals are going.
GOAL: To remember to praise my child more. PANS/PANDAS is so emotional and it it can be hard to focus on the positive
Suggestion: Yes! it is very important to acknowledge and reward our kids' efforts. Make a point to acknowledge their successes. Children PANS often experience self-esteem issues and all the behaviors can be so stressful and our kids can benefit from more support. The New Year is a perfect time to let them know you will help them accomplish their goals. And remember to compliment them not just on "typical" milestones and accomplishments but also on those related to PANS. So if they got out of the house with a little less stress, then tell them how proud you are of them! If they ate one bite of vegetable when they haven't done that in a month, well you might throw a mini-party!
GOAL: To be more patient with my child.
Suggestion: First remember, to be more patient with YOURSELF! And don't forget, Parents Need Time Outs Too! (that should be on a t-shirt.) Secondly, patience doesn't come easily. It takes some practice. Allow more time to get things done like getting out of the house. Schedule less activities because the focus is on healing and not doing. Healing takes a lot of work. Don't forget this. We, even as parents, sometimes forget the Invisible Illness part of PANS.
GOAL: My two kids have hit a wall in terms of recovery. I am not sure what my goal should be.
Suggestion: Start with a frank discussion with your child's PANS PANDAS main doctor. Ask for more testing, ask for suggestions of other treatment modalities and doctors you might want to explore. If your doctor is not particularly helpful in pushing forward then consider seeing a new or additional doctor. Usually one can't find a One Size Fits All doctor who can do everything for your child and a set of fresh eyes can be helpful. Remember to get copies of labs and notes before you see another doctor.
GOAL: To find a talk therapist for my child. As his PANS symptoms keep relapsing, his depression is getting harder to overcome.
Comment: So, so sorry. You are not alone and neither is your son in this. The rate of depression does seem to increase the longer kids have symptoms and more relapses. We definitely encourage you to find a therapist who your son can talk to and that you can talk to to gain strategies to support your son's emotional health. Please, also, keep searching for additional treatments to treat the root cause of the symptoms as well.
GOAL: I am pretty sure I am feeding my kid’s OCD. She is not in a full flare right now but still bedtime ritual is still 2 hours long and it is exhausting for all of us. I have to figure out how to help her but I don’t want to put more stress on her and make things worse.
Suggestion: Finding a good CBT therapist can be difficult but so worth it for many kids. The PANS Treatment Guidelines do support the idea that many therapists and parents have known for a long time that typically when the child is in a full flare that CBT might not be a great treatment modality to implement at that time. But note that it can be helpful for the parents to meet with the CBT therapist at this time to learn some tools. Then once the child is out of the worst of the flare, he/she can start to meet with the therapist. Treatment Guidelines
GOAL: Lower carb intake (again) to not feed the yeast.
Suggestion: Work with your doctor in determining which diet is best for your child. Diets should be individualized and are generally not one size fits all! Seeing a nutritionist that is well versed in PANS and autoimmune disorders can be really helpful! Yeast is a tough beast so we wish you luck!!
GOAL: Try some new supplements to help adrenals that our Integrative doctor suggested based on labs and symptoms.
Comment: Great! It can be very helpful to not only treat PANS/PANDAS as per the Treatment Guidelines but also support whole body health in order to maximize wellness. Working with a good integrative doctor can really help pinpoint key areas to work on. Every child has individual needs that require individual treatments.
GOAL: Our goal is to do more testing and see what treatments we can add! He is doing fairly well but we have not reached full recovery. We want to do more extensive Tick borne illness testing. We also want to look at our child's gut health after being on antibiotics for so long; plus he seems to have signs of some gut issues. Our son has been having some pains in his feet so we are going to look at Bartonella and CDIP.
Comment: Definitely keep exploring if your child has not recovered from PANS PANDAS after appropriate treatment. We hope you find answers and solutions! You might need more than one doctor on your team!
GOAL: Advanced DNA testing for infections, genetic testing, learning as much as I can, exploring different treatment options, advocating for legislation and awareness, doing a fundraiser for a couple of PANS charities.
Comment: Super Mom. Remember to take time for YOU.
GOAL: Keep raising awareness, one person at a time!
Suggestion: Share posts from NEPANS via their social media. Also, we have many documents and awareness posters on the website that are easy to download and print!
NEPANS Awareness Posters
NEPANS Information Sheets & Handouts
GOAL: I need to deal with rude comments from people out in public better.
Suggestion: This actually can take some planning and practice. First, remember they are ignorant and do not know what they are talking about. If you have a short sound bite about PANS ready to go - well practiced - then you can help educate people. They won't be experts and they probably won't really remember what you said so don't get technical and scientific. Just emphasize that your child's brain is inflamed and he/she is very physically sick and behaviors are not choice based and add that PANS is very stressful and everyone is doing the best they can and the public's patience and acceptance is needed. Then there are the arrogant jerks who will not care at all no matter what; they are miserable people and should be ignored as much as possible; course you can tell them in a stinger voice... at least my child can recover but I fear mean people with no heart are irreparable... but again, they won't care what you say so just move along.... And last but not least, have your best friend's number on speed dial so you can vent!
GOAL: I am a parent to a newly diagnosed child with PANS. I definitely need to learn more about PANS. I thought all kids had to have tics and I want to know more about the other triggers besides strep.
Suggestion: NEPANS has many great resources. It is definitely a must to learn all about the different ways symptoms can manifest themselves, what the basic treatment protocols are, about how PANS/PANDAS can relapse and remit, what the triggers can be, how to get school support, and so much more. So take the time to read through the website and watch conference videos. You can also email us.
GOAL: My goal is to actively invite medical professionals to the PANDAS conference at Columbia University that is being held in March in NYC. It breaks my heart that there are not enough providers for children.
Comment: Fantastic! We definitely need more practitioners. See PANDAS Network for more information on the conference. The first day of the conference is going to be for Medical Professionals only. The second day will be open to parents.
GOAL: My goal is either to educate my family more or figure out a way to be okay with distancing our life from them. sigh.
Suggestion: Have them watch the documentary on PANDAS, My Kid is Not Crazy. Also, giving them articles that are fairly easy to understand, that clearly describe PANS as medical and stressful! NEPANS has a section of magazine/print articles that you can look through. The article from Discover magazine is really a great start. There are also two or three from Huffington Post and Natural Awakenings that are great resources. NEPANS - PANS in the News Section. Of course for any medical professionals you can include some studies as well - PANS Research, Studies, Journals.
GOAL: Get a better support for my kiddo at school. I know we need accommodations but don’t know where to start.
Suggestion: Getting proper systems in place at school are a must! Most kid will need a 504 and/or IEP. NEPANS Section on School Supports. Also, consider getting an advocate. A good advocate will teach you how to be a good school advocate so you can learn how to do it yourself.
GOAL: Get more 1-to-1 support for myself!
Suggestion: Yes! Facebook is great for support especially in the many groups but nothing beats meeting up with other parents. NEPANS supports several meet-up groups and is helping to form new ones in the New England area and beyond. You are NOT alone! Meet Up Group Information
GOAL: We have an IEP in place but we need to write better accommodations. He is doing pretty well right now but I don't trust what will happen as we transition into middle school.
Suggestion: Our school accommodation motto pretty much is, Plan For The Worst. Hope For The Best. We really urge everyone to make sure their accommodations reflect this. No one can completely foresee the future and what a kid will need during a flare but it is very important to get those discussions started as early as possible. We like to ask a lot of "What If..." questions. These hopefully will set up a system that will allow for fluidity in and out of services as needed. Also, it is often much easier to get a well written 504 plan and/or IEP with teachers and therapists that know your kid. It is much better to have a content rich document that can be passed on to the next school than one with a lot of holes. Of course you will have to meet with the new team next year and explain everything but at least you have a good document to start with.
GOAL: I have to find a way to give more focus to my son's sister and brother.
Suggestion: Absolutely. It is near impossible to spend any time focusing on the siblings during the crisis of a flare. That is okay; that is real life. It is one heck of a life lesson but it will make them stronger and more caring in the future. But once the immediate crisis of the acute flare has waned, focusing on the siblings is crucial. Sometimes it is easy as taking them out to dinner every once in a while and giving them that one on one time, or sending them and a friend to a movie as a special surprise or even making sure they get to their sports practice on time consistently! But what they also need is emotional support. Watching and living through their siblings flare can be scary and frustrating; they need a space to express this and have their emotions validated and supported. In some areas there are group meetings for children called Sib Shops, which are often open to children of various disabilities and illnesses. If there is one near you but is only open to sibling of kids with autism, sometimes if you can get a group of other PANS kids together, you can ask that SibShop to expand their group to you all as well. NEPANS has hosted some family events as well so don't miss those when they come up in the future.
GOAL: To find and accept more help from others.
Suggestion: Yes, this! Just because most of us did not get a bunch of casseroles after diagnosis doesn't mean that we don't have a few friends and family that can help out. Help comes in many shapes and forms. Maybe it is telling your soccer team carpool friends that you really are going to rely on them much more this season. Maybe it is remembering that your best friend from across the country who keeps telling you to call her really, really means it and calling her more than twice a year. Sometimes it takes a little work to figure out who can help out how but it is worth it. Many of our families have the tendency to close themselves off and not let anyone in, but do yourself a big favor and don't. Of course there are some friends that will never be helpful, never try and "get it" and it hurts to know you can't turn to them. But not all your friends are like that; don't sell them short.
GOAL: I need to see a therapist for myself. I feel so broken by years of dealing with PANS. I have very little patience with myself and I am in constant fear that things with my daughter and son will suddenly get worse again. I might have PTSD or something too.
Comment: First, big big hugs. Yes, definitely make your mental health a priority! There was an article a few years back about how parents of children with Autism have PTSD worse than some combat soldiers. It is fair to say this would apply to parents of PANS kids as well. And here is another big cyber hug.
GOAL: I am not sure if this realistic but my goal is to make my husband become more involved in the care of our PANS PANDAS child. It really should be HIS goal.
Suggestion: This is so relatable! Moms really do shoulder so much of the day to day burden and it can seem like men are not doing anything and are "checked out". But many are not exactly sure what to do and are way more apprehensive about diving in and helping than they were changing their first diaper. Some dads simply need much more education, especially about choice based behaviors versus behaviors during a flare that are truly a manifestation of the disability. The answer for that maybe making sure they are at all doctor appointments and meeting with the therapist too. While others, need tasks that they can complete so they know they have contributed. Also, if you know there are Dads in your area that "get it", then try to host a get together that includes Dads so they can talk... or not talk... about PANS. We know that has been helpful for a bunch of families.
And last but not least...
GOAL: Winning the lottery to pay for all of the medical bills!!!
Comment: I have always loved this quote from Elizabeth Gilbert's book, Eat Pray Love: “There's a wonderful old Italian joke about a poor man who goes to church every day and prays before the statue of a great saint, begging, "Dear saint-please, please, please...give me the grace to win the lottery." This lament goes on for months. Finally the exasperated statue comes to life, looks down at the begging man and says in weary disgust, "My son-please, please, please...buy a ticket."
Not that we are condoning gambling but like anything, you can wish all you want for something... but you have to buy a ticket to win it. So remember Turn Goals and Resolutions into Action!
We wish you a happy, healthy, and hopeful year!
This letter from a young boy with PANS to his parents is heart wrenching. What a beautiful little soul he is. Thank you to his parents for allowing us to share it with you.
We need health insurance coverage for PANS PANDAS. We need all insurance companies to create new policy to cover PANS PANDAS. Families should not struggle so hard. PANS is treatable especially if treated correctly and quickly.
NEPANS is so thrilled that our friend, The Dreaming Panda, has written a guest blog for us. This is our first story written not by the parent but by the person with PANS herself. We of course will continue to share PANS from parents too!
A few years ago, I was poking around twitter looking up PANS/PANDAS posts and came across The Dreaming PANDA. I read one blog entry then went back and read several more. It was the first time I had read something by someone with PANS. I had talked to many kids about their experiences but seeing her struggles and triumphs dealing with PANS while attending college, all written down really inspired me to keep working for people with PANS. Since then she and I have emailed and kept in touch. She is truly an inspiration for everyone. She has had some dark dark day but always keeps fighting, keeps hoping and keeps encouraging others to keep going, to keep Reaching Recovery. Please read her story and share with others. There is hope. And as she says, "Take courage! You’re not alone; you’re stronger than you know, and there’s hope for life after PANS. This disease is not the end of our stories." Thank you for sharing your story with us. It is an honor to have you guest blog for us. - Gabriella True
After eight years of mental illness and symptoms that over a dozen doctors failed to explain, in 2014, I was diagnosed with PANS. My symptoms had come and gone since I developed the disease at age eleven, so I’d successfully completed my first year of college a couple of months before my diagnosis. At nineteen, I’d been sure that my future was full of possibilities, but after what seemed like a mild case of mono, instead, I lost my mind that summer. My whole world shattered.
Out of nowhere one afternoon, I went from being filled with dreams to becoming inexplicably suicidal and terrified at the thought of simply continuing to exist. My entire body was suddenly consumed with wild involuntary movements, and I couldn’t walk. I was delusional and convinced I was going to die, but the indescribable psychiatric torture that had overtaken me was so intense that the delusion was the only thing that gave me peace.
My PANS was so severe that my specialist gave me high-dose IVIG right away, and she said it would start to help in six weeks. I naively assumed that after a few months, I would have my life back, and things would be how they were before. But more than three years later, I’m still fighting.
There are so many things that no one told me about what it takes to beat PANS—far more than I could possibly fit into one post—but for anyone out there beginning the healing process, there are three key pieces of wisdom that I’ve discovered along the way.
It might be a long road, it won't be easy, but you WILL get there.
1) It might be a long road.
My doctor warned that it could be several months for the full effects of my first IVIG to kick in. Indeed, a year and-a-half passed before I truly went into remission, and recovery was so slow that I often felt like I wasn’t making any progress. Nevertheless, after two high-dose IVIG infusions, months of antibiotics and steroids, a tonsillectomy, and some therapy to eliminate what was left of my OCD, I did finally get better in 2015.
I wish I could say that was the end of my journey, but a few months later, I contracted Lyme disease in 2016 and relapsed. My progress has been just as slow this time around, but the long road to healing is more endurable and less discouraging now that I know what to expect.
Recovery isn’t a straight line—there are lots of ups and downs and twists and turns, but if you keep fighting, the road ends in a beautiful return to health
I hope sharing my story can bring awareness to PANS/PANDAS and inspire people to keep going because one day, it will get better.
Hi! My name is Lily, I’m 23 years old and I have PANS. I’ve been hospitalized so many times I can't even count, seen doctors of practically every specialty recognized in the US, and had nearly every type of medical test run on me. I’ve spent 20 years fighting this, with only 5 years since official diagnosis, but today I’m in remission and this is my story.
I wasn’t actually diagnosed until I was 17, but my parents suspect I’ve had PANS since I first had a flare at 13 months. In the 1990s and early 2000s, PANDAS was only beginning to be researched, so my parents dragged me to doctor after doctor with no answers. The most prominent symptom was a head twitch that occurred after any acute bacterial infection, coupled with severe separation anxiety, episodes of rage and significant OCD tendencies. With no seizure activity and the behavioral symptoms chalked up to personality or growing-up, my symptoms faded in and out with each frequent infection.
After having chronic bronchitis for a year and getting the last of my Gardasil vaccines, I started shaking all over my body. It was the perfect storm. I was a senior in high school and the doctors were at a loss. They gave me Valium to put me to sleep each time I started shaking but offered no solution to the endless tics. I missed more than 45 days of school and desperate for answers, my mom started researching online. Once she found PANDAS, everything fell into place. The diagnosis fit me like a glove and we headed out to my family doctor to confirm and start treatment.
If only it was that easy. The primary care physician was convinced PANDAS, which had just started making the news, was a hoax and instead insisted I was faking it and needed to be sent to the hospital for a psychiatric evaluation. He scolded my mom for “trusting Dr. Google” over his expertise and only agreed to an ASO titer blood test after 30 minutes of begging.
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