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.

12079148_10206730651578866_4452449069466728222_n

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.

12122599_10206730733980926_7233887701920645087_n

Advertisements

Believing in My Bigs

My Bigs

My Bigs

These three are my teenagers. They keep me up to date on the latest apps, games, music, and pop culture. They are smart, funny, artistic, and completely different from each other, but they have a close bond and, boy, do they have each other’s back.

20150704_152516253_iOS

Mike enjoying the ocean.

Mike is our 16 year old. He is one of the most resilient people I have ever met. He joined our family almost 2 years ago, after months of visits, meetings and preparation. I can’t imagine our family without him. He is brave, loving, and kind. I am proud to be his mom; thankful that he chose to allow us to adopt him. Because the adoption is not finalized, I cannot post any identifying pictures of Mike.

20150520_233220278_iOS

Mike & Sirius

Mike loves dogs. He has taken a special liking to our 10 year old husky/ lab mix, Sirius. Sirius now enjoys sleeping in Mike’s bed and lounging in the quiet, though messy, solitude of Mike’s bedroom. Like most teens, Mike is a video game enthusiast. He also loves basketball, pizza and sugar. Mike is well spoken, and because of his history with foster care and adoption, he speaks at events encouraging other foster children not to give up hope.

Leo

Leo

Leo is our 15 year old. He is tall, smart, athletic, charismatic and engaging. He loves history, architecture and science as well as video games. He hates having his picture taken, so I don’t have a lot of photos to choose from. Though, I’m fairly certain he uses Snapchat without a problem. Leo attends a charter school and is enrolled in an IB (international baccalaureate) program. More importantly, he just received his driver’s permit. If you think of it, say a prayer for us.

20150619_193132287_iOS (2)

Leo catching in a tournament.

Leo also has an intricate knowledge of baseball. He has played travel baseball for several years and is developing his skills as a catcher, pitcher and first baseman. This year, he will be trying out for the local high school team.

Lu

Lu is our 13 year old. I wrote about her and her service dog, Noel, here. Lu is our artistic one. She is sweet and empathetic and wise beyond her years. Her illness has exposed her to a darker side of life, which has given her an even deeper compassion for others, especially those with mental illness. She was on track to attend the same school as Leo until she became ill, just under 2 years ago. Since then, Lu has worked on finding other areas to excel in. She has become an amazing dog handler, she has applied for and was accepted as a co-owner in 1 of her favorite band’s Instagram fan sites, she is learning photography, and her new passion is special effects make-up.

Lu loves coloring her hair.

Lu loves coloring her hair.

Lu is home-bound most of the time, so we do things here that help her to feel better. One of those things is changing the color of her hair. Lu has so much fun picking out the new colors and changing her make-up to accentuate her features and her hair. Her hair has been blue, green, pink, purple, red and mixtures of all of those. Right now, Lu’s hair is bright red. I love how it accents her skin color.

Mike, Leo and Lu keep this house filled with fun and laughter. They are quick with sharing a joke, a meme, or a funny video. I love watching their personalities grow and develop. They have so much potential. I really do believe in them.

Mad For My Middles

My Middles

My Middles

Oh, these three. Life is never dull with my middles. I was trying to come up with words that start with “M” to describe them. I thought about words like mischievous and misunderstood. But I think I would do better to think of a list of most likely to do. Most likely to say anything. Most likely to join in the adventure. Most likely to try something new. Most likely to think outside the box. Most likely to speak up. Most likely to help someone in need. Most likely to be ok with who they are. These three are heroes in my book.

Eddy is clearly awesome.

Eddy is clearly awesome.

My oldest middle is Eddy. He is 12 now. I have never met a kid so concerned about helping others. If Eddy sees a person in need, he helps. It’s just who he is. It’s not unusual for me to find him running to open doors for people, or carrying things for strangers, or going out of his way to help a little kid in need. He is my biggest helper in taking care of Lu. The two of them have been inseparable since he was born, and when Lu got sick, Eddy took it upon himself to stay by her side. I don’t know what I would do without him. Eddy doesn’t want recognition. He is happy to keep to himself, preferring time spent on his own projects than being with groups of friends. Not that he doesn’t have friends, he just needs time alone to recharge.

Eddy reading to Jimmy.

Eddy reading to Jimmy.

Besides being a Minecraft junkie, a computer whiz, and just a regular old smart kid, Eddy is an adventurer. He recently joined Civil Air Patrol. The program fits perfectly with Eddy’s thirst for adventure, love for aeronautics, and his desire to serve his community. I love that he is learning leadership skills and has found an activity that is his own.

Marie

Marie

Next in line, comes my Marie. She is 8 years old and in the 3rd grade. Marie is my tender hearted, animal loving thespian. When she was 2, she would perform during the 7th inning stretch at baseball games. Most recently, she played the role of The Ace of Spades in Alice in Wonderland Jr. at our local theater. Unfortunately, Marie has a milder form of the same autoimmune disorder that Lu has. We caught hers much earlier and so far have been able to keep her stabilized.

Marie and Lu after the play.

Marie and Lu after the play.

Marie is an awesome sister. She is good at keeping SJ and Jimmy entertained and she is Lu’s sidekick. She knows how to change diapers and feed babies. She can also make a mean cup of tea. Few have the capacity to love others like Marie has.

SJ

SJ

Do you see this kid? Can you see the mischief in his eyes? SJ is my fun loving, question asking, everything moving all of the time kid. He doesn’t stay still, even when he’s sleeping. He loves trucks, cars, planes, super heroes, and most of all . . . Dirt! If there is a pile of dirt, you will find SJ in it. Last year, he came home so covered in dirt and sand that he infested his bedroom with sand fleas, and that was after we showered him and took his dirty clothes- we think the culprits hid out in SJ’s shoes.

SJ is going to school.

SJ is going to school.

This is the big year that SJ joined Marie on the school bus and headed to the big kid school. I figure the sign SJ’s holding is fair warning. Thankfully, I haven’t received any calls from his teachers yet. The notes home don’t count.

My middles baking a treat.

My middles baking a treat.

I mentioned that these kids are heroes in my eyes. They really are. This crew has been through a lot. They know how to love hurting kids that join our family. They know how to encourage a chronically ill sibling. They know how to follow safety plans and how to react in crisis. They know how to have fun and the know how to make me smile after a hard day. My middles are amazing.

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.

IMG_4250

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.

Just Keeping On . . . to whom I write

I write to parents, to encourage them to keep on, because this parenting thing is hard and we never know what is going to come our way.

I write to new parents that are just starting this adventure, to encourage them to keep on through the sleepless nights and the long days and let go of guilt and just enjoy this time while their little ones are still little.

I write to the parents of children with chronic disorders, to encourage them to keep on fighting for their kiddos, to do what it takes, though the battle is long.

I write to the parents who have adopted their children, and daily fight the monsters of trauma and loss, to encourage them to keep on helping their children to heal and become whole.

I write to the foster parents who are ready to take in a child at a moment’s notice, those that give their love, time, money, and resources to help a child in need, to encourage them to keep on though the road is rough and uncertain.

I write to the host parents of international exchange students who take in teens from a different culture and show them love and give them a family while they are away from everything they have ever known, to keep on loving, learning, and teaching.

I write to the parents of teens in difficult places, who know the feeling of helplessness when their children make decisions that hurt and destroy, to keep on loving through the pain.

I write to the parents of large families, whether biological, adopted, foster, host, or a mixture of any of these, to keep on smiling through the chaos that their lives bring.

I write to share my story so that I might encourage others to keep on, because I’m on the journey too.