PANDAS Awareness Day

Today, October 9th, is PANDAS Awareness Day. I am dedicating this post to all of the families battling this terrible illness. You are not alone.

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One morning toward the end of February 2014, Lu woke up for school and complained that she wasn’t feeling well. She did not have a fever and her symptoms were vague, but I assumed that she was coming down with something so I sent her back to bed. A few days passed without improvement. There was never a fever and Lu never complained of any localized pain, just a feeling of general malaise and exhaustion. I took Lu to a local urgent care where she tested positive for the flu, specifically H1N1. We started Lu on Tamiflu that evening.

Lu was not feeling well.

Lu was not feeling well.

Several days passed and I was not seeing the improvement in Lu I would expect. She still had no fever and her symptoms continued to be vague but I had a feeling something wasn’t right. We went back to the urgent care and this time they did a throat swab. Lu tested positive for Strep A. The doctor was surprised because the symptoms we were seeing weren’t typical, but she didn’t seem too concerned. Lu started on a 10 day course of amoxicillin that evening.

The next week, Lu reluctantly returned to school. It was unusual for her to be so resistant about going to school. She was a straight A student, well liked by both students and teachers. Lu was known for being driven, intelligent, mature and responsible. This behavior was unlike her, but I wrote it off as evidence that she still did not feel well. She also began to behave as if she were much younger and she developed an intense fear of leaving the house. That week she was able to attend school 2 days out of 5. The next week, we still were not seeing improvement. Lu attended 1 1/2 days of school that week. One morning, after I told Lu that she needed to at least try going to school, her entire body froze and she became completely unresponsive. That morning we took our first trip to the ER. Their guess was that Lu had a seizure.

That weekend, Lu took the last of the antibiotics. She still was not feeling well, with constant headaches, joint pain, chest pain, abdominal pain, nausea, and lethargy. The next week, we saw one of the doctors from our general practitioner’s office. The doctor insisted that the strep infection had attacked her digestive tract and that it could take several weeks for Lu to start feeling like herself again.  Lu was also diagnosed with inflammation of her chest wall because of the chest pain. I was told to give her Motrin for the pain, but otherwise there was nothing wrong. Lu tried attending school a couple more times that week but was not able to make it through an entire day. Then things turned for the worse.

Lu began to have more seizures. She was terrified of leaving the house or riding in the car. She complained that she “felt dead.” She started hallucinating and talking about 3 friends that stayed in her room with her and kept her company. She became paranoid and believed that our family was going to die. Lu did not want me to leave her for any reason. She would walk around the house in a trance-like state with her hair in front of her face, stepping first on the toes of her one foot, then dropping down onto the ball of her foot with a jerky motion all while dragging the other foot behind her. As she would do this, she would tear paper into pieces and drop them all over the floor. She took 1 piece of paper and tore it into pieces, 1 piece for each family member, placed the pieces in a plastic cup and put the cup in the middle of the basement floor. Lu then covered the cup with a laundry basket and told us that it needed to stay there in order to keep her family safe. She would check on the cup several times a day to make sure it was not disturbed. One time, Lu found that the cup had been moved to the side of the room. She became distraught, completely inconsolable.

Lu in the ER.

Lu in the ER.

Every day, Lu would cycle between symptoms. Her vision would blur, she would lose the ability to speak, her handwriting would become illegible, she would lose feeling in parts or all of her body, she would lose the ability to hear, she would lose the ability to access her memory, she would struggle to fall asleep and then to wake up and we were still seeing the seizures. It was not unusual for Lu to have long periods of time, over 20 minutes, that she was unresponsive. She was battling major depression and rages. We were in and out of ERs, specialists’ offices, and hospitals. None of the doctors had an answer. My mother found PANDAS in her research and we suggested it as a possibility, but most of the doctors ignored the idea – mainly because Lu was presenting with psychosis, not OCD. Our family practitioner did not shut down the idea though. He placed Lu on Home Bound services for school and instructed me to find a PANDAS specialist. So, that’s what I did. It was April by this time.

In May 2014, we took a trip to Chicago to see a leading PANDAS doctor. He talked to Lu and made her feel comfortable. She described some of her symptoms and he responded with even more detail about what she was experiencing. It was the first time I saw her relax with a doctor. She could tell he understood. We were finally getting some answers. The doctor started Lu on more antibiotics and steroids. Within days, we began to see improvement.

Lu enjoying Chicago.

Lu enjoying Chicago.

The next problem was finding a local doctor that could treat Lu. Chicago is quite a distance from where we live and I really wanted a doctor that we could see regularly. Thankfully, I found a PANDAS Facebook group from my area. One of the mothers was kind enough to offer us her son’s upcoming June appointment with a pediatric neurologist that is familiar with and treats PANDAS. I will forever be thankful to her. Our neurologist is one of a kind. He has been helping us ever since.

It has been 20 months since Lu first got sick. The problem is that just because we have a diagnosis, it doesn’t mean we have all of the answers. We are still fighting to get Lu stabilized, though she is better than she was in the beginning. Her symptoms continue to go through cycles all day long. She does better in the warmer months, when we can keep her away from a lot of illnesses. PANDAS is an autoimmune disorder, so whenever Lu’s immune system flares up, symptoms get worse. We tried getting Lu back in school last year. She made it for half of the first day. That’s it. This year, our doctor didn’t even want us to try it. He wants me to keep her away from germs as much as possible.

Lu and Noel

Lu and Noel

 

In desperation, last year I started searching for anything in addition to meds that might help Lu. I came across the idea of a service dog. On November 1st of 2014, Noel, Lu’s assistance dog, joined our family. She has been a wonderful gift. Noel is able to do so many things for Lu that no person can do. She has made significant improvements in Lu’s quality of life. They are an amazing pair.

As a foster parent, I have access to resources that I otherwise might not know about. Thankfully, we have been able to obtain community services. A therapist comes into our home once a week to work with Lu. When we describe the symptoms of what we see, there are a lot of comparisons with multiple personality disorder, schizophrenia, catatonia, dementia, bipolar disorder, PTSD, OCD and major depressive disorder. Lu does not fit neatly into any of those diagnoses, but she definitely has components of each. In July, we also found that Lu has Lyme Disease. Though the new diagnosis answers a lot of questions about lingering symptoms, it muddies the water further as to treatment options. Adding to the difficulty is the lack of knowledge in the medical community about PANDAS. Often, I find myself explaining the illness to doctors and nurses. But honestly, I’m tired.

So, why did I write this post? To let the other PANDAS families out there know they are not alone. To help parents who are trying to find answers. To give a glimpse of what it can be like to live with this illness. To raise awareness.

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Poor Alex

Today is the big day. The day that Alex loses a part of himself. The day he becomes less than  he was. We knew this day was quickly approaching. This week at dog training, Alex lunged at another dog. Although he was immediately corrected, that behavior is never acceptable. Our trainer, Mrs. G, said, “Time to get him fixed.”

Mrs. G is a small woman, but boy does she carry a lot of authority. Mr. May’s response to her directive was, “If Mrs. G says it, then we do it.” (I am currently working on a list of things that I’m going to ask Mrs. G to tell Mr. May. Suggestions are welcome.)

Anyway, it’s been a rough couple of days for my poor naughty boy. The older boys in this house couldn’t walk past him without saying, “Snip, snip, Alex.”  He is at the vet’s now, and gets to come home later today. Hopefully, Alex will be a humble Alex, a small and sad Alex, and a “Oh, Mom, am I so glad to see you” Alex. “And it will take the bounces out of him.” (Rabbit is my BFF. Sorry, Winnie the Pooh.)


Alex, when he learned why he was at the vet this morning.

Enjoying the moment

IMG_5175 “Enjoy the little things in life, for one day you may look back and realize they were the big things.”

Two years ago, our lives changed forever. Our Lu came down with strep throat and suddenly everything changed. Overnight, she went from a straight A Honor Roll student on track to attend a prestigious academic high school to a girl that could barely function, let alone concentrate on schoolwork. Her body has turned on itself and her immune system is attacking her brain. For the first few months we were just trying to get a diagnosis. Finally, we found a specialist that could give us answers. Our Lu has PANDAS, pediatric autoimmune neuropsychiatric disorder associated with strep throat. Thankfully, through a PANDAS parent site, we were directed to a wonderful neurologist that has become a PANDAS expert. But, even with months of treatment, our Lu still could not stabilize. That’s when we learned that she also has Lyme Disease. We are on a big learning curve. I am hoping to share what I am learning, but most of all, I want to say . . .

Find joy!

Look for small moments that make you smile. Hold on to these treasures, because in the end, these are the things that matter.

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Our Lu is finding joy. Last autumn, in a desperate search to find anything to help our girl, I contacted a service dog company. Miracles happened, and our daughter was matched with a dog immediately. Noel has been a life line to Lu, even in some very dark and scary places. The two are inseparable. Noel keeps Lu safe and gives her something to feel good about. See, Lu can’t go to school. She can’t be left unattended. She has seizures, memory loss, her eyes have trouble focusing and that’s not the half of it. But Lu is really good at training her Noel. So good, in fact, that we got two more puppies for Lu to train. She may not be able to go to the high school she had heart set on, but she is a darn good dog trainer. Right now, this is where she finds her joy. And watching Lu work magic with these dogs fills my heart to overflowing.

IMG_4256This evening, like most Wednesday evenings, we were at dog training class. Lu had a seizure and collapsed to the floor. Noel jumped into action doing exactly what she has been trained to do. Noel has a vest that she wears in public to identify her as a service dog. We all agree that her vest is really a cape because Noel is a super hero.

A Day in the life . . .


In a busy house like ours, you never know what’s going to happen next. And, as every mom knows, the most likely time for catastrophe to strike is when she is taking a potty break.

True to form, I came out of the bathroom first thing this morning to find that my puppies, under the watchful eye of my husband, had chewed a good size hole in my leather couch. What was a small tear is now a gaping hole. They literally removed a chunk of leather, batting, and foam. It’s gone. How am I supposed to fix that? My husband patched it with duct tape.

After breakfast, when things were relatively calm, I started to clean the turtle tanks. Carefully, I set the pet supplies on the bench next to me. Wrong move. James, the two year old, reached over the couch, grabbed the container of fish food, uncapped the top, and poured flakes all over my newly ruined sofa. I ran over to stop the miscreant, grabbed some cloths and started cleaning the mess. James seized the moment. He and Alex, the one year old golden, were in cahoots. James ran to the front door, opened it, and charged outside, laughing the whole way. Alex followed.

Now, opening doors is a new trick for James and we are not used to it yet. I stood there dumbfounded for just a fraction of a second, still holding cleaning cloths laden with fish flakes. I considered the possibility of letting them both go find a new home to destroy, but the paperwork I’d have to fill out just isn’t worth it. I ran out and caught James pretty quickly. I’m still faster than he is. Unfortunately, that’s not true for Alex. The neighbor’s dog was outside and Alex has been waiting for the moment when his collar for our invisible fence would be off so he could go greet and intimidate this friend from across the street. He was running back and forth in our street, trying to decide on his approach when the neighbor came out and grabbed her dog. Seeing that the fun was over, Alex walked into another neighbor’s yard and pooped. With a satisfied grin, Alex returned home to spend the next hour in his crate. I had turtle tanks to clean.

The morning had been exciting enough for me, so I sent James upstairs to spend some quality time with Eddy, the 12 year old. Somehow James ended up in Eddy’s military backpack. They were both pleased with themselves, so all that was left was to take a picture.

This afternoon, I got word that our daughter and two granddaughters need a new place to stay. It looks like I will be spending the next few hours getting the basement room set up for them. This is how we live. We never know how many people will be staying here at any given time. Life is unpredictable. I can plan all I want, but only God knows what will happen from one moment to the next. I’m just trying my best to enjoy the ride.

It Begins

It’s almost quiet here tonight so I am taking this opportunity to get my first post in. Quiet doesn’t happen here often. Most of the kids are in bed. The big boys are downstairs watching TV. I’m stealing this moment. I should be in bed, but the idea of finally starting this blog is too tantalizing.

I’ve been thinking about starting a blog for a long time now. Many of my friends suggested I should. My story is a long one. I’m not sure how much I am ready to tell, but we will start here and see where we end up together, ok?

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First, a look into my life: My name is Mandy. I am a wife and mother. It’s that simple. I am married to Jeff. He’s an incredible man that keeps our family going. His passion is technology and he works as a computer programmer. The depth of his knowledge amazes me. He is a devoted husband and father and I am blessed to be his wife.

We have seven children living at home right now. That number can change at any given moment because we are foster parents. Our youngest is two years old. Our oldest living at home is sixteen. Our youngest is adopted. Our sixteen year old will be soon. There are four biological kids in the middle and one more adopted kiddo in the middle as well. Then we have three more adopted kids that live out on their own and one foster child that is currently out of our home, but we are hoping he can come home soon.

Then we have our five exchange students, two of whom still call our place home. They are from all over the globe, making our home multicultural and multilingual. And then there’s our baseball host sons and daughter that left us with a passion for baseball and a deep love for baseball players, especially the ones we call our own.

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I can’t forget to mention our furry family members. We have a slightly obsessive love for golden retrievers. There is a story behind that. We have three Goldens that share our home. We also have an old lab/ husky mix that keeps us safe from anyone that would dare to come to the front door.  Yes, that is four big dogs, if you were counting. I told you we have an obsession. Our dogs are kept amused by our three degus that occupy a large cage in a corner. Then we have our turtles and our tortoise. What can I say, we like animals.

That’s a quick overview of our family. I hope you enjoy getting to know us as I post more about each member of our family and our adventures together.