I wasn’t crazy, it was symptoms of PANS/PANDAS

Symptoms of PANS/PANDAS can be easily dismissed or misdiagnosed by doctors, pediatricians and family members.

When I pleaded with doctors to listen to my concerns, I was not taken seriously. Little did I know, that all the problems that my daughter was having were due to a serious condition called pans / pandas. This is the story of how I listened to my gut, and never gave up until I figured out what was happening to my child.

It started on her 2^nd birthday.

During her party, I grabbed my camera to snap some pics of her in that cute little outfit, eating her cake. As I looked through the lens, I noticed something wasn’t right. She was just sitting there – SUPER STILL – with this blank look in her eyes. FROZEN.

I called her name, asking her what was wrong and couldn’t get a response. When her lips started to turn blue, I started to freak out. My husband ran over and we grabbed her, getting the cake out of her mouth and trying to get her to breathe and come back to “normal.”

It was the scariest experience…EVER.

As we drove home I couldn’t stop thinking about how her reaction to choking “wasn’t normal.”

Why wasn’t she coughing? Or trying to get our attention so that we could help?

As a mother, it really freaked me out that she could hide it so well. She had been choking on cake so quietly, and without moving. My mom brain was going crazy with worry…

“What if this happened again, but we were too busy to notice?”

I knew I was going to have to watch this kid like a hawk…

Over the next couple of years, my concerns for my daughter GREW.

Sensory Processing Disorder

She had sensory processing issues that were intense and just got worse with age. She would only wear clothes that were too small for her because she liked them to be tight. But, clothes could not have any embellishments – nothing dangling, no decoration, no glitter, nothing that made noise, and especially NO BOWS. She has never worn jeans in her life. Finding the right socks was a nightmare. Places that were too noisy or too crowded were too stimulating for her, and she would cling to me for dear life, digging her nails into my skin, while burying her face into my shoulder. As a family, we just adapted to meet her needs. We made sure she had clothes that made her feel comfortable, and we avoided crowded places and events. Going to the circus or the rodeo was just not going to be on our list of fun family outings.

“It was a symptom of PANS / PANDAS.”

Tantrums & Rage

The tantrums and rage were unreal. And they weren’t your typical toddler tantrum. Yes, she would fling herself on the ground like a normal toddler will during a tantrum, but then she would start banging her head on the wall or the floor as hard as she could trying to hurt herself. Sometimes she would grab her hair and pull so hard she would rip chunks of hair out of her head. It got to where we had to intervene and hold her in our arms so she wouldn’t injure herself. When these tantrums would occur, there was no “coming back down” from them. She would be this way until we could get her to fall asleep. And if it happened when we were out in public, then it was time for us to go. The best way I can explain this to another parent that might doubt my concern here, is this…When a normal child throws a tantrum over something, and the parent gives in and gives the child what they want, the tantrum stops. When my child threw a tantrum, if she got what she wanted, she would still be throwing a tantrum, it wouldn’t matter. Sometimes after a meltdown, she would frustratingly say with remorse “I don’t know why my brain is doing this!” These tantrums weren’t normal toddler tantrums, and it wasn’t normal for my child to harm herself…

“It was a symptom of PANS / PANDAS.”

Extreme Anxiety & Fear

One Halloween, she was so excited about being Doc McStuffins and her grandmother and cousins coming over to go trick-or-treating. These were family members that she was incredibly close to, so when they arrived at our house, and she ran into my closet and wouldn’t come out – we knew something was up. She was freaking out and crying and said she didn’t want to go. I tried to calm her down and reassure her that this would be fun and I would be right there with her, yet I quickly realized the idiocracy in my words. THIS WOULD NOT BE FUN FOR MY BABY. The thought of going up to a complete stranger’s door in the dark, and asking for candy, while tons of other people ran around outside in the dark in strange costumes, was incredibly frightening to her. How did I not see this coming? As I sat there on the floor of my closet, rocking her back and forth and stroking her forehead to try and calm her, she fell asleep. When I finally expressed all my concerns to her pediatrician, he easily dismissed me by saying “It’s just her personality! Some kids are just different.” No. It wasn’t her personality. She was experiencing extreme anxiety, and it was not normal for her age.

“It was a symptom of PANS / PANDAS.”

OCD – Obsessive Compulsive Disorder

One day when we were cooking in the kitchen, she kept leaving to wash her hands. Each time she left, she had a different excuse for why she was doing it again. My husband thought it was the kind of soap that just didn’t wash off all the way. I looked at her hands and noticed that they were dry and raw and sort of bleeding in some areas, but I couldn’t get her to stop. I had started to count the number of times she washed her hands, and once I hit the number 25, I knew this wasn’t normal, and I was right. It was OCD, or obsessive compulsive disorder, a common symptom of PANS/PANDAS when it follows an illness. And later I would realize that this incident DID follow her contracting an illness in the prior weeks.

“It was a symptom of PANS / PANDAS.”

Potty Training Issues / Incontinence

Then, there was the POTTY TRAINING. By God, we tried it all. We tried everything. And everyone had their two cents on the topic. Everyone thought it was us – that we weren’t strict enough, or that we weren’t “doing it right.” We knew in our hearts that we really tried everything we could to help her.

Children all potty train at different ages, but our concern with our daughter was that she had ZERO interest in learning to use the toilet and she FEARED it. It wasn’t normal for a child this age to not want to try and “be a big girl.” Later we would learn that almost all PANS/PANDAS kids have trouble potty training and also with incontinence.

It wasn’t our lack of parenting or potty training skills…

“It was a symptom of PANS / PANDAS.”

Tics

We noticed that she would constantly adjust her ponytail over and over and over. She couldn’t stop adjusting it, as if it weren’t tight enough, when it clearly was. Over and over and over. Sometimes 20 or 50 times within an hour.

“Mommy I HAVE to do it! I have to!” is what she would say to me.

She would get frustrated if her hands were in a position that didn’t allow her to adjust it.

“It was a symptom of PANS / PANDAS.”

You know your child best. Not your doctor. Listen to your GUT.

There were many more signs and symptoms then just the ones mentioned above. From not getting her to sleep through the night, to constantly being sick. And they were all symptoms of PANS/PANDAS.

(For a more complete list of PANS / PANDAS symptoms, check out my blog post: INSERT LINK HERE)

Symptoms can be subtle and can easily blend in with day to day life on some days, and more severe on other days. They can be dismissed by other family members or by your pediatrician.

DO NOT let them dismiss you. make them take you seriously.

They are not with you and your child 24/7. Only YOU, the parent, can see the BIG PICTURE and know that something isn’t right. 

TIP: Find a simple solution to keep notes and track symptoms for your child. This will help your child’s doctor see the bigger picture.

If your gut is telling you something is wrong, listen to it, and get your child to a doctor that specializes in screening for PANS/PANDAS.