‘Her pupils became dilated and dark. She started wetting the bed, baby talking. My once happy daughter became angry and rude.’: Girl diagnosed with PANDAS after months of turmoil, ‘No one knows your child better than you do’

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“This journey began on March 20, 2017. It had actually been working up to this moment for a long time, maybe for a few years or even since her birth. No one is really sure. Nonetheless, this was the pivotal moment that set our daughter on the path we have been carefully navigating ever since.

Addi was 8 years old at the time and I had always taken pride in the fact that she was never sickly. She had her bouts of occasional strep throat and ear infections that resulted in tubes being put in, but nothing a round of antibiotics couldn’t cure. Turns out, however, that her immune system didn’t react appropriately to the pathogens she was exposed to.

Her catalyst was the flu. After she had recovered from it, I noticed a month later that she was making a sniffing noise. I didn’t think much of it at the time and I thought it was likely a habit that would eventually stop if I didn’t bring attention to it. The sniffling went away in a little bit of time but was soon replaced with eyebrow scrunching. Fast forward a few weeks and she began to wet the bed, pee in her pants while at school, have night terrors, and sleepwalk. She said she didn’t know she had to go to the bathroom and it would just happen without her realizing it. She had been completely potty trained since she was 2 with no accidents – so this definitely got my attention.

Her attitude changed practically overnight. My once happy, lighthearted daughter was becoming belligerent, rude, and obstinate. She would argue over the smallest things and she would refuse to listen to us. She was angry and threw epic tantrums. If things weren’t exactly how she thought they should be, she’d have meltdowns nothing but time could bring her out of. Now this probably seems like common childhood behavior at times, but my instincts knew better. Addi had always been very mature for her age. I consider her an old soul. For her to revert to some of these very uncharacteristic behaviors really worried me.

Courtesy of Jennifer Wall

As I was trying to determine why her behavior had changed, new issues kept popping up overnight. She began to really struggle with fear. She didn’t want me to leave her side. She would cry and get very anxious when she had to go to school. She loved school! She had always been a straight-A student and now, suddenly, she was terrified of going. She was terrified that something was going to happen to her while she slept.

Courtesy of Jennifer Wall

She worried about fires, robbers, storms. Endless possibilities where something bad would happen to her father or myself and she would end up alone. Her handwriting started to deteriorate. It was sloppy and she would switch letters. She had a difficult time processing logic, so math became a struggle. It was extremely difficult for her to make simple decisions. She would escalate from frustrated to angry and then to enraged within seconds with no ability to diffuse. If she was forced to make a decision as simple as what shirt she wanted to wear that day, she would rage and scream, ‘I don’t know!!!’ At the same time, she didn’t want anyone else telling her what to do. She wanted to make the decision but couldn’t. Basic decision-making skills were tormenting for her.

She began to exhibit OCD behavior as well. If she touched something with her right hand, she had to touch it with her left. If she tapped something 3 times with one hand she had to follow with the other hand. Her eyebrow-scrunching tic developed into a throat-clearing tic, which then over time developed into a screeching/yelping tic. She would bottle it all up during school and after school she would let loose for hours. Almost like holding off on scratching an itch. You can deny the impulse for a little while, but eventually you have to scratch it. To say that our house was a stressful place was an understatement. To see your child morph into someone you don’t know is devastating.

She was under an enormous amount of stress and confusion. She didn’t know what was happening or why and we couldn’t figure out how to make it stop. I can’t begin to explain what it was like to look at your beautiful daughter and see a dead-eyed, hateful look directed at you. Sometimes she would get so angry I feared for her little sister’s safety. She said she thought about hurting her but would quickly add that she would never do it. She was conflicted and didn’t understand her own mind. Why was she thinking things she knew she would never do? She was a prisoner of her mind. She was having intrusive thoughts that bothered her but wouldn’t go away. She would think of all types of disturbing things that I know she had no experience with. It worried and confused me. She would sometimes laugh for no reason or at things that weren’t funny. She would talk in baby talk, and the pitch and volume of her voice would fluctuate. Then, ADHD developed. She couldn’t focus, finish her sentences, or tell a complete story without being distracted and flighty. Her pupils were always dilated and dark. I had to find answers.

Courtesy of Jennifer Wall

I did what most doctors will tell you not to do. I Googled, I searched, I scoured, I researched, and I sought out all the information I could get about her symptoms. I knew it wasn’t Tourette’s. We had no family history and it was such a sudden onset. Something had a hold on her and I was bound and determined to find the source and fix it. I am not a doctor, and there’s a lot to be said for listening to medical professionals, but there is NO ONE who knows your child better than you do. If there is ever anything that doesn’t settle right in your heart of hearts, then you fight for your child. Don’t assume the doctors know everything, because while they are smart, they are not all knowing. You were put in that child’s life because you have the skills needed to protect them and advocate for them. There is no power on earth that could have stopped me from getting to the bottom of what was tormenting her.

I lost my father to cancer and grew up with a dysfunctional family. I had my share of pain, but nothing could have prepared me for this trial in our lives. It was truly the deepest and darkest pain because of the helplessness I felt being unable to help my child. As a mom, my instinct to protect her was beyond comparison. I had to fight for her. I had to fix this. I remember we were travelling home from visiting family and her tics were out of control. She had managed to subdue them while around family so the car ride home was extremely stressful.

Soon after this day, I remember looking online at a medical forum where a mom was reaching out for answers on her own child’s symptoms. I don’t know who this one particular commenter was, what her name was, or anything else she said but I remember her asking if the mom had heard of PANDAS. I praise God for this woman. I had never heard of PANDAS, so I took off on another lead.

In my research, I learned about PANS, the twin sister of the medical condition called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections) where the immune system has a misdirected response to pathogens. Out of all of the symptoms, my sweet Addi had every single one (which were plenty) except restrictive eating. I immediately knew this was the problem. This was what had a hold on my daughter. I thought, ‘Finally! We have answers! This is exactly what she has! There’s hope for her!’ My joy at finding the culprit was soon extinguished by the despair of learning how difficult it is to find help for this illness. You see, despite thousands of children suffering from these life-altering symptoms, PANDAS/PANS is still considered a ‘theory’ to some medical professionals. Some do not recognize it as an illness at all. Some recognize it, but aren’t educated enough about it to be able to treat it effectively or even give sound diagnostic advice about it. I went on a search for a PANDAS/PANS support group to get a handle on what to do next. If I couldn’t find easily accessible healthcare for her, I would find a way.

I searched out a Facebook group for PANDAS support. It was overwhelming reading the posts of other parents who were in the trenches fighting for their children. I went there to find hope and stories of healing and I found mostly the opposite. I found parents whom doctors had written off. I found children who were misdiagnosed and parents who struggled to salvage what was left of their child after years of having incorrect and even harmful medical treatment. I found parents who had given up on the medical community because they were tired of not being taken seriously or literally being called crazy. Parents who went bankrupt, who lost everything, who moved, lost family, had broken marriages because of unbelieving/unsupportive spouses, all because they sacrificed everything on a quest for treatment to ‘possibly’ save their child. I found desperate, depressed, beaten down, and exhausted parents who were so busy pouring themselves out for their child that they were barely holding onto themselves. This resonated with me.

To say I was hopeless and petrified of what this possibly meant for her, is an understatement. I cried all the time. There were days I couldn’t get out of bed. I felt like I had lost my daughter, my sweet baby girl who I was entrusted with, but couldn’t help. I felt like a failure of a mom. What mom can’t protect and help their child? At my lowest, most hopeless and darkest state, although I would never have done it – I had fleeting thoughts of suicide. But then I would think, ‘Who would fight for her? I can’t give up.’ This is a common feeling among parents in my situation. It’s like you’ve been dropped down the rabbit hole and nothing makes sense anymore.

Everything you held true no longer applies to your child. Doctors aren’t always on your side, they don’t always believe you, and there isn’t always one magic medicine that will make it all go away. It wakes you up but the reality only makes you want to go back to sleep. It truly is maddening. Finding answers consumed my mind. The feeling of being out of control and stuck permanently in this alternate universe was tormenting. Seeing my daughter struggle, knowing what ailed her but not having the ability to find help was absolute hell. The more I read on this forum, the more hopeless things seemed. I felt like my youngest was left in the dust because of how much attention and focus was always on her sister. Trying to explain to my 5-year-old why her sister doesn’t want to play with her anymore or assure her that she still loves her very much but is just very sick right now… that’s an incredibly painful place to be.

Courtesy of Jennifer Wall

But what I did find in this group was a tribe of parents who banded together to survive. Much like passengers of a wrecked ship, who bind up bits and pieces of wood and debris, in order to create a makeshift raft simply to stay above water. We all felt like we were drowning. This consumed us, this never-ending quest to put the pieces of the puzzle together into something that cured our children. They shared tips, trial and error suggestions, and vitamin and supplement regimens. What worked and what didn’t. What doctors to avoid, what doctors to attempt to try to see. Who would advocate for our children and who was a waste of time. I found out about histamine production, how that linked to inflammatory responses, and how to counteract those with antihistamines and ibuprofen. I became a rudimentary biomedical student. I read medical journals and looked up definitions. I learned the fundamentals of how things metabolized and how certain genetic mutations can either help or hinder a body’s ability to detoxify. Things I never had a clue about were suddenly all I could think about.

I’m so thankful for the parents who reached out to me when I was new and lost. The time they took to explain things and show me the ropes and pitfalls of this awful illness is priceless. I’m so thankful for my beautiful friend Alexis who I met there. She had found the group in efforts to help her daughter Baylee who is the same age as Addi. Alexis and I quickly became great friends. She’s only in the next state over from where we live and had found a doctor in an integrative medicine facility that was highly recommended. Baylee was finding a lot of success already under his treatment protocol. I had opted for a doctor a few hours away because he took insurance and said he treated PANDAS. He did treat PANDAS, but not PANS – which requires a lot more work in order to determine what pathogens are triggering the illness.

Addi actually got worse under this doctor. He wouldn’t listen to anything I had to say about Addi’s condition or my concerns about what was and wasn’t working. Again, I was thrown back into the despairing situation of not finding help for her. One step forward and three leaps back. That is the cycle. I knew in my heart she needed to see the doctor that Baylee was seeing but as they don’t take insurance, I knew we could never afford treatment for her. Appointments were close to $500 a visit and that’s not including blood work or the protocol plan that involved multiple supplements.

I was terrified and still felt like there was no way. I hate accepting help from people and I hate asking for help even more. Alexis had mentioned the idea of a GoFundMe account. The thought made me so uncomfortable, but I knew in my heart I couldn’t let my fear or pride keep me from reaching out for help. So, I started a GoFundMe. I felt sick to my stomach as I posted it and set the goal at a low amount. Over the next few weeks, I was provided above and beyond. People were coming out of the woodwork to pray for her and lift her up in prayer and send their love to our family. Addi would not be where she is today were it not for the faithful generosity of the people who love us and love her. It is a debt I can never repay. I scheduled an appointment and knew in my heart that things would be okay.

Courtesy of Jennifer Wall

I can’t express the depth of gratitude I have for the wonderful people at this doctor’s office. It’s a private clinic a few hours away. The staff prayed with us, prayed over Addi, cried with me, and hugged me. She currently takes several vitamins and supplements based on her extensive blood work results. She takes numerous pills, several times a day, has routine blood work and labs drawn, and goes every 6 months for a full visit. She is on long-term antibiotic treatments to combat the mycoplasma infection that was found in her lab work.

Courtesy of Jennifer Wall
Courtesy of Jennifer Wall

Within several weeks of implementing one supplement at a time, she slowly began to get better. After a year and a half, I can say that I have my daughter back. The OCD, Oppositional Defiance Disorder, ADHD, ADD, and the entire host of symptoms are gone. We still have to manage her exposure to illnesses because just being around someone who is sick can cause her immune system response to go haywire and cause symptoms – but thankfully that hasn’t been the case the past few times she’s been around sick people. I fully believe that she will be in complete remission and healed from this illness.

If you’re reading this, please fight for your child. Don’t just accept a diagnosis if your gut says otherwise. Advocate, research, learn, and love your child above all else. If this helps just one parent to notice the signs of PANDAS/PANS and begins the journey of healing for their own child, or a child they love – it has been worth it.”

Courtesy of Jennifer Wall

This story was submitted to Love What Matters by Jennifer Wall of Ashland, Kentucky. You can follow her journey on Facebook here and Instagram here. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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