Saturday, August 20, 2016

Pandas....and not the cute, cuddly bear kind.

PANDAS stands for Pediatric Autoimmune Neuro-psychiatric Disorders Associated with Strep. This disorder is the result of a misdirected immune response following an infection or illness usually associated with Strep. Children with PANDAS experience an acute onset of debilitating neuro-psychiatric symptoms when triggered by bacteria, viruses or strep.

We are all still learning about what it is....what it to get help for our son. We would LOVE your prayers and thoughts as we navigate through this journey.
After many, many years of me never feeling like we had an "answer" for Evan's roller coaster of emotions and behaviors and random illnesses and sicknesses, we finally have an answer of what has been going on in his little body. Evan has an autoimmune disease.
 We believe the onset of it happened when he was 2 and was hospitalized when he was found to have bacteria in his blood. 

(Read more about that here)

So our son, has Pandas and it isn't this cute, cuddly kind. It's messy, chaotic, hard to figure out, and has changed his life as well as our lives. 

In Pandas, the body becomes confused after a strep infection, or virus or bacteria infection and creates auto-antibodies that begin attacking....the brain. yes. the brain that controls everything. It's so scary. It specifically attacks the basal ganglia, which is the area of the brain that controls emotions, movements, certain learning processes and other functions. When the brain is being attacked and inflamed, it unleashes unrelated symptoms that may look like mental illnesses or behavioral problems or neurological issues. Pandas can happen suddenly and dramatically. It seems like overnight your child develops OCD, tics, ADHD, anxiety, sensory issues, urinary problems, insomnia, rages, impulse, manic stages, anorexia and more. School work may decline, especially math and handwriting. 

Here is a video from earlier this summer that shows how bad his anxiety gets and how fearful he is when he is in a flair. And come to find out, a few days later he was diagnosed with strep. The second video is food aversions and anxiety over a peanut butter and jelly sandwich from lunch from last week and then come to find out, he tested positive for strep today.  For us, the symptoms always show up first. Defiance, mood swings, rages, lack of sleep, not eating, saying his neck and legs hurt, impulse, and anxieties.
This is a hard road to go down and I'm hoping that since we now have the results back we can get some answers and find the best treatment for him.

End of school during a flair always, always, always resulted in a meltdown in the car on the way home. Crying, yelling at me, mad at himself, etc. We do a lot of blankets and holding to reset when upset. 

Wants to participate in activities, but then anxieties set in, and he feels like he can't do it. 

And when he isn't feeling good, almost every single night he is in our bed. Cuddled up and legs digging underneath for added pressure. 

Looking back, I have realized how much his body was crying out for help. Way more tantrums and more emotional outbursts the older he has gotten. More intense, more impulsive, more anxious, and even saying that he has wanted to be dead on more than one occasion. Saying that his body hurt, his legs hurt and his neck hurt. Over the last 5 years, we have seen multiple doctors, have tried multiple therapies and spent thousands and thousands of dollars trying to figure out what was going on with Evan. We have always had problems with preschools and mother's morning out and school. Looking back, when E was getting sick is when the behaviors would significantly increase. Not wanting to go to school, impulsive when something would happen to him and he would react back to them, usually with hitting, kicking or running away. ahh...the number of times he has run away....I can't even count. Running away from the situation, himself, other people....just to get away from it all. It's so scary knowing that something is going on in him that we can't control and never knowing when or how he will react. He's been so scared by something, usually insects, that he's run away or has refused to get out of the car, or had panic attacks on playgrounds because he can't make it back to the car. He's run away from us, from his teachers, run to other classrooms and hid, has run through the woods by our old house, across a 5 lane highway after running out of school, etc. He has hit us and punched and kicked and has tried to head butt others when his is in a flair and we have had to restrain him to hold him down to get him help him feel safe again.
Pandas symptoms are so fast and so intense and usually without warning. When E isn't sick or has all of this inflammation going on inside his body or his brain, man....that kid is amazing. Helpful, caring, kind, positive, loving, and on and on....but when he is having trouble, he's just crying out for help in a ton of different ways. 

Within the past few months of getting Evan to our infectious disease doctor, Dr. C, I've begun to notice changes with his behavior to recognize if he is having a flair. I can tell he is getting sick just by the changes in his behaviors. He starts having issues with sleeping and becomes way more anxious at night. He will say that he "never sleeps". He isn't hungry and won't eat. He has tantrums and huge emotional, crocodile tears where his feelings are hurt so bad. He is bouncing off walls and can't sit still and way more impulsive where he'll hit or throw and the chewing on his shirts starts back up again. He starts having tics by constantly sniffing as well as screaming to anyone who touches him to "don't touch me!". He becomes obsessive with certain toys or screen time or will obsess on repeatedly asking the same question over and over, even after getting an answer. He will pace and walk in circles. The onset of these behaviors is usually sudden and we are learning as we go with this. We got the blood results back less than a month ago, and now we take it a day at a time and hopefully continue to educate ourselves as well as others. 

It isn't "always" all of these symptoms at the same time. When E ran away from school and was found a mile away by a worker at a hardware store, he had had spots on his torso. I asked if he had ate something with eggs (since he is allergic) and he said no. Well, this most likely was a bacteria or a virus and his symptoms were on high alert and he wasn't himself or thinking. His brain was being attacked and he had some uncharacteristic behaviors. Last fall is when we noticed the huge shift in behavior. He was trying to head butt his Brain Balance instructors, spitting, kicking, running away and hiding. This was when we also went in to the doctor to see what was going on, and again he tested positive for Strep. He showed no signs of strep or complaining his throat was hurting. Just a huge shift in behaviors. These amazing instructors were the ones to actually suggest we look into Pandas and getting him tested for this disease. Another time this summer (before finding out he has Pandas, but suspecting he did), he was "off" again and I took all of us to get tested for Strep. Our younger son actually tested positive for Strep with the rapid test and then sent Evan's away for the culture and his ended up being positive too. Neither of them showed signs of strep except for E's change in behavior.
This first week of school, E's behavior was off. Anxieties, impulse, hitting, etc and this morning I took him in to get tested and sure enough....positive strep test.

And what can be confusing is that Evan doesn't exhibit these Panda's symptoms all of the time. He is not always ocd, adhd, anxious, sensory overload, etc. These are just symptoms of pandas that are not always present. Looking back, Evan can be fine for weeks and months at a time. He went 14 weeks this past school year without a referral. That was HUGE for him. He wasn't being impulsive and hitting others. He wasn't running out of the classroom. He will not run when bugs are around. When he is fine, he's fine and when he's not fine, it's hard and overwhelming. 

This video is one of my favorites. He's calm and talking and playing with a flying bug. Usually those stress him out big time. 

I cried when the Cunningham Blood test came back. I feel like we finally have a reason and an answer as to what has been going on with Evan these past 4-5 years. It's been a roller coaster ride for sure and I know we will continue to have our ups and downs, but I know that we will fight this and help Evan's brain recover. 

Pandas kids can recover and go into remission, but it can take months or even years. There may be new flares or a exacerbation of symptoms when they get sick or are exposed to illnesses that trigger the Pandas autoimmune reaction that results in brain inflammation. It's overwhelming for sure. There isn't a lot of attention for this disease and it's especially hard when something is going on with him and he's acting up, for others to look and judge him and his behavior. It makes me sad. It's an invisible disease and hard to explain to people.  I didn't know that an average, normal, everyday infection that we can all be exposed to, can trigger these behavior responses.  That when an infection or bacteria or virus is in him, it triggers a response and the child you see is suffering and you don't recognize him. The behaviors hit quickly with the sudden onset of different symptoms. 

I'm so incredibly proud of my son and everything he has to do to make it through each day. He is such a brave little guy.

Here are some helpful articles and websites
for kids (In a Pickle over Pandas book) helpful for kids and teachers
A new documentary called, My Kid is not Crazy

Thanks for reading along and joining us on this auto-immune journey. 


Erin said...

Bless his precious heart!!! I am so glad you have some answers finally. Will be praying for healing and coping skills until he is well.

Erin said...

Bless his precious heart!!! I am so glad you have some answers finally. Will be praying for healing and coping skills until he is well.

Anonymous said...

He is so lucky to have such a strong, supportive, and caring mother like you! You are amazing, friend!