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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Moments from My Week

Don't bother me, I'm concentrating.

Don’t bother me, I’m concentrating.

It’s been a busy week here, as usual. I thought it might be fun to post some moments, in photos and quotes, to give my readers a glimpse of what I hear and see in a normal week’s time. I hope you enjoy.

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Where’s Jimmy?

“Jimmy, GET OUT of the pantry!!!

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Let’s see if the Vaseline top will flush.

“Mom, he just flushed your good pen down the toilet.”

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Because there is no bad place for a monster truck.

“Give that to me! Do you want me to bite you?”

One tired Princess.

One tired Princess.

“Mom, my body and my brain don’t like my teachers. I like my teachers, but my body and brain don’t.”

What? I'm just reading a book.

What? I’m just reading a book.

“MOM, he’s in the dryer again.”

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Let’s hide the chips in the toy cabinet. Mom will never find them in there.

“I need more blood.” (Fake blood- that’s for a later post.)

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Quincy both resting in and chewing apart his toy bin.

“I got in trouble at school today because I burped in my friends’ faces.”

You mean it's not supposed to hang like that?

You mean it’s not supposed to hang like that?

“They locked us out!”

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Because you can’t have too much of a good thing.

“Night night, Grandma.”

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Jimmy couldn’t wait to try the zucchini. He didn’t like it.

“Mom, he put my toy in the tortoise tank!”

Because putting the toilet paper on the roll is just asking too much.

Because putting the toilet paper on the roll is just asking too much!”

“Mom, do you hate me now?”

“He wants to see you. He does not want to see his workers, but he wants to see you.”

“Mom, I’ll stay with her. You go rest on the couch and I’ll get you if I need you.”

“I love you, Mom.”

Everywhere and Nowhere

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Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

Excerpt from “The Road Not Taken” by Robert Frost

I have always felt different, like no matter how hard I tried I never quite fit in. When I was younger, this made me uncomfortable. I just wanted to be accepted and part of the crowd. But as much as I wanted to be normal, I didn’t want to be either. As a teenager, I fell in love with Robert Frost’s poetry, especially “The Road Not Taken.” I knew I wanted to live differently. Eventually, I became comfortable in my own skin. Being different became a blessing, not a curse.

As a teen, I knew that I wanted to adopt some day. I also knew that I wanted to have a large family. I told anyone that would listen that I wanted to have twelve kids. Now, I want more than that. I hope that I can continue to adopt older children for a long time to come. But, having a large family with children in many different age groups and from different backgrounds, races, and cultures makes me far different from the other mothers I know. I fit everywhere, and nowhere at the same time.

I have a toddler that will be potty training soon, but I am not a new mother. I have a child that will be going off to Kindergarten next week. This is the seventh child I’ve sent off to school for the first time. It’s lost its nuance. I have another elementary aged child and two middle school aged kids. One of my daughters is home bound. She cannot attend school so a teacher comes to her, but I am more than just a mother of a chronically ill child. I have one child in our local high school and one in a charter high school. I get requests to volunteer frequently, but that is usually not possible. I am not a mom that has the freedom to plan ahead. One of my kiddos is in a juvenile detention program. Some of my kids have histories filled with severe trauma, abuse, and neglect. Some of my kids have been abandoned. My kids have a lot of needs, but I am not just a special needs mother. I have a son that is a young adult in an independent living program, and two more young adult daughters that are out on their own making a way for themselves in this world, but I am not an empty nester. I have three grandchildren that are precious to me, but I am not just a grandmother. I have host sons from all over the world, and one host daughter. They worked in professional baseball or were exchange students. Some came and went, some stayed for a while and then went on their way, and some stayed and became permanent fixtures in our family. They are all my host sons, some are more than that. But I am not just a host mom. I am all of these, but by fitting in all of these categories, I fit in none. My brain and heart are too full to concentrate on just one or two of my mothering duties. I’ve seen too much.

My hope is that I can encourage other mothers out there. Ours is a difficult job, but well worth the price. Let’s lift each other up. Let’s help the moms that don’t quite fit in.