Missing

I've debated whether to post this story.  It is extremely emotional moment for me.  After reminding myself that my purpose in posting about PANDAS is the hope that just one person will recognize the signs earlier than we did, I decided to post it. So here is the story.

This past Monday, we were told to discontinue Brayden's newest antibiotic as it wasn't giving us the results we had hoped for.  By Wednesday, his behaviors were gradually getting worse.  He would cry for 30 minutes straight simply because he couldn't find something to do.  He couldn't do his math homework.  He started needing the bathroom all the time.  By Thursday, his tics had returned. He was swishing at his neck, clearing his throat continually and sucking on his fingers all day.  He was talking like a toddler again.  We were in a full regression.

On Friday, I had three errands to run.  The library, boy scout store and Trader Joe's.  All enjoyable outings for Brayden and he agreed that he was eager to go on them and get out of the house.  I was just hoping that his little sister avoided aggravating him in public and knew that he generally kept it together in public.

Here's where the story really starts.  We arrived at the library.  Brayden and Ellie immediately were drawn to the fall market stand in the kid's section and eagerly began playing with it.  I went to the nearby movie rentals to grab some for the weekend.  Eventually, Ellie aggravated Brayden by not giving him what he wanted. One thing you have to understand about Brayden is that normally he is a very good big brother that gives his little sister anything she wants without thinking twice.  When he is inflamed with PANDAS, he loses this rational thought process and has no emotional tolerance.  I reminded him to be patient with Ellie and that he could have his turn with the play food in just a minute.  Well, he did not like that answer and stomped off.

Brayden is a rule follower.  He knows to stay in the kid section so I never thought twice about where he stomped off to.  I proceeded to check out our movies in the kid area and suddenly had this panic over me that he was not present.  I looked around and no Brayden.  I grabbed Ellie and quickly looked down each isle.  No Brayden.   I checked the bathrooms, the car, the adult section.  He was missing.

My motherly panic set in as my brain tried to think like him and I feared he might be walking home.  He had tried to run away for the first time the night before, stopping at the front door with fear of the dark.  He had never left my presence in public but I quickly reminded myself that PANDAS behavior is so incredibly unpredictable.  The child you think you know is no longer there.

I immediately alerted the librarian and they manned the doors and started searching the library.  I dragged Ellie through the perimeter of the library while they paged his name.  I was about to call the police when I saw him.  Huddled up against the end of a row of books.  In the kid section.  Crying and rocking.

I went from feelings of joy to anger to sadness to relief.  I told the librarian he had been found and within her earshot told Brayden he was grounded.  I reprimanded him for hiding in the library when he knows better. He told me nobody loved him and he wishes he was dead.  What?  I immediately reprimanded myself for feeling the need to punish him in front of the librarian just so I could redeem myself as a parent.  This poor kid is never punished or grounded.  He is a good kid.  He doesn't do stuff like this.  PANDAS does.  I followed through with his grounding but he didn't care.  He sobbed at home curled in a ball for the next hour asking to die.  I was heartbroken, he had never hated life so much.  He let me hold him.  We talked about how this horrible PANDAS is making his brain make bad choices and feel so sad.  I told him how much we loved him and everything he brings to our family.

I decided after that moment that I am no longer on my doctor's agenda of wait and see.  The conservative approach is obviously not the right approach. If I have to drive across the country to get the help he needs, it will be done. PANDAS will not win!

Where it all began...Brayden's PANDAS story

The more I read about PANDAS, the more I learn where this all started for Brayden.  He has always been a sweet gentle child with great insight into the world around him. A deep thinker, he would be seen by others as quiet and a loner. His sensitivity made him a good friend to a few select people, a careful eater, and a passionate reader.  The question I keep asking myself is when did this all change?

Now the answer is clear.  The first month of kindergarten, Brayden developed strep throat.  By February, he was so sick that he became malnourished and stricken with anxiety. We went to doctor after doctor visit only to be told that he would be fine.  His food restricting became so severe during his malnourished period that we enlisted the help of an occupational therapist.  Still with no success, we started investigating physical possibilities.

In July of last year, he had his tonsils and adenoids removed as his ENT informed that they were chronically infected and blocking 70% of his airway sitting up. We thought this was the answer and waited for that miracle cure. We also discovered many food allergies at this time and removed all those.  We waited. We had progress.  Then it was gone.  The school anxiety crept back in and he started excessively eye blinking. We took him to an eye doctor. Nothing wrong.  He started repeated rap rhythms all the time. We then realized he had tics.

When food chaining therapy didn't work, we switched therapist and found who I call our little angel, Emily. She taught us so much and developed a genuine loving concern for Brayden. She strengthened his weak core and aroused his nervous system that had been "sleeping" for years. We saw some progress until February came and strep showed up again.  This time is was tricky though. It showed as an ear infection, the first one in over 6 years.  It was quickly treated only to immediately return undetected. He cried and cried over going to school. He wouldn't eat more than 3 different foods at a time, none of them healthy.  Emily begged us to see a bio medical doctor, a Defeat Autism Now doctor, who would look for physical reasons for his problems.  I made the appointment with a four month wait!

The light bulb started to go off when I brought Brayden to the doctor for a cold. They automatically did a strep test even though he didn't have a sore throat.  It was positive.  This time, the antibiotics made a huge difference. He stopped crying about school, he started eating a little more, he was a happy kid for 10 days. Then the script was done and everything came back again.  I was counting the days until we would see the bio medical doctor.  When I talked to Emily about his anxiety coming back she asked me if I had heard of PANDAS.  Since it was suggested that Teagan may have had that with her fever disorder as a toddler, I was quite familiar with it but had never considered it.  The light bulb went off.  I was convinced he had it but knew so little about it.

School ended and we began our summer with the July 8th bio med doctor appointment in the backs of our mind. A week before that appointment, Brayden developed tooth pain from a cavity that was scheduled to be filled the following week. The dentist prescribed Amoxicillin and we took off for our 4th of July visit to Tennessee. The night before we were to see the bio med doctor in Nashville, TN, Brayden complained of a sore throat.  Since he was on Amoxicillin, we didn't worry about it.  At the visit we discussed his eating problems, sensory challenges and the possibility of PANDAs. Labs were ordered and supplements prescribed.

Two days after Brayden took his last dose of Amoxicillin, he began having rages of fury. This caused his sister to have rages of fury.  I played referee for weeks, sprinting through the house at the sound of his voice for fear he would hurt someone.  He was overly anxious about school and everything else. He wouldn't eat but a couple of the same foods every day. My sweet calm boy was no longer himself. I knew this was not right.  Then the labs came back with his strep titers.  This measures the antibodies our body produces to attack strep.  It should be zero if you don't have strep but up to 170 is considered normal.  Brayden's was 1030!  These are left over antibodies that don't go away after a strep infection, rather they start attacking other parts of your body. In Brayden's case, his brain.

He was prescribed Augmentin and within in two days, we had a new boy.  School was only weeks away, yet he had no anxiety.  He started eating foods he hadn't ate in years. He started devouring chapter books for the first time ever. He was calm and never agitated. For the first time ever, he no longer had nighttime accidents. The changes were just short of miraculous and continued daily.

Then school started.  When I picked him up that first day, he looked like he was in shock.  His eyes were blinking rapidly and he was quiet.  I knew starting school would be hard but by the weekend we had loss all the progress from the previous weeks. This continued each week.  They increased his meds, ran more labs. His strep antibodies were high and it seemed like cases of strep were popping up every week at school.

We tried to work through our local pediatrician only to be told he had rheumatic fever and needed a lower dose antibiotic.  We tried the lower dose and he got even worse.  She refused to change his antibiotic.  I called his bio med doc frantic and begged them to move his next appointment up.  We were lucky and they accommodated.

After meeting with this doc, he looked straight at us and said "you have to take him out of school".  The meds were changed, many were added and we were sent on our way with a homebound application and hopes of having our boy back.

So now today, the new meds aren't working.  We see glimpses here and there showing us that they are trying to work but he just isn't coming back today.  He eats the same three things every day.  His rages are few and far between but he gets mad easily.  He can't do math calculations and he is tired of taking medications.  Who can blame him?  So we email the doctor and wait the two days it takes to get a reply.

This is the journey of PANDAS.  So hard to treat, so hard to watch and so hard to wait.  Wait for the next message from the doctor, the next lab results, a new medication, another opinion.  It is always waiting but with hope that you will see that sweet boy again soon.

The world is gross!

I wrote this last week and forgot to post it:

It started with my usual good morning wake up, only this time Brayden grumbled "I can't go to school, the school is so yucky and dirty"  I knew at that moment, he was worse.  It then progressed to his breakfast was yucky after a few bites.  I reluctantly shipped him off to the "yucky" school with hopes that he would survive his day without too much anxiety.

After school, "Brayden, why didn't you eat your lunch again at school?"   I'm really not sure why I ask this question because I know the answer. "The cafeteria is so gross, even the peanut table was gross, so I couldn't eat it"  This is the same kid who a month ago ordered his first healthy meal at a restaurant.  I then inform with excitement that we are going out for frozen yogurt to support his schools PTA.  "Mom, I have to go potty and the bathroom there is dark and yucky. We have to go home".  Ughh, this time I essentially tell him no, I'm not ruining it for the girls and he manages to do his business and enjoy the yogurt.  Later at home, my youngest is trying a paleo treat that arrived in the mail. Brayden gets site of it on her face and freaks out "get her out of here! She is gross, get her away!"  This is OCD.

Obsessive compulsive disorder is a crippling disorder for everyone involved. It causes a person's mind to have unwanted feelings or thoughts that often lead to compulsions.  Brayden's OCD was mostly limited to food.  Food has to be perfect or there is something wrong with it. The only perfect food is processes food which is horrible for a growing child. I have been told by doctor after doctor that he won't starve.  We put this to the test several times and found that yes, he will starve.  When he actively has OCD, there is no way to get Brayden to eat anything but perfect food.  Our current doctor understands this.

I actually thought Brayden did not have complusions although the psychologist in me knew they had to be there somewhere.  When I finally explained OCD to Brayden, he thought for a moment and said "you mean like how I have to darken the lines on my assignments at school without my teacher seeing?"  Wow, that poor kid makes more work for himself than anyone knows.  How many other compulsions does he have that no one is aware of?  Often these rituals are seen as funny quirks or not even noticed at all but for the child, they are completely exhausting.  As Brayden has become sicker this week, I noticed he has stopped playing the iTouch that he previously could play for hours on end.  As we talked about OCD, he mentioned that he has to rub the screen of the iTouch repeatedly while playing the iTouch.  Again exhausting.

Unlike most cases of OCD, Brayden's is almost completely absent when his PANDAs is controlled.  He starts exploring new foods, leaves the house without anxiety and acts like a normal kid.  We just started a new course of treatment and here is hoping we have our kid back in the next few days!

Lost

I sit on the bench enjoying conversation with a friend as our kids run and play.  Inside I'm really on edge wondering if Brayden can hold it together for this play date. I see Brayden heading my way looking defeated. I give my friend the look and she knows this is the end of our play date.  My 8 year old, normally confident and fun loving son starts sobbing "nobody likes me. I want to go home"  There is no use negotiating or telling him otherwise.  He has lost all mental flexibility this week and the way he views our world is the way it really is in his mind.

I want to say "suck it up" but my heart tells me that won't go well.  That darn strep monster is eating at his basil ganglia again. The part of the brain that controls emotion is being attacked.  My son doesn't have a strep infection.  He is actually very healthy at the moment.  Instead, his brain is being attacked by the left overs from an infection months ago.  The antibodies that his body made to attack the strep infection have become confused.  Those antibodies now think that his brain is what needs attacking.  I really wish they would stop. Weeks ago this same kid would have to be pried off the playground in the middle of some game he created with his friends.  But today, nobody wants to play with him because there are no games. There is no creativity. He can't even come up with a conversation.  He is lost.

So we head home. He fights with his sister the whole way and our night begins...

Your brain is on fire!

There is a wonderful book called Brain on Fire about a terrible neurological disease not all that different from Brayden's PANDAs.  But this post is just a glimpse into how PANDAS effects Brayden.

"Mommy, why can't I get to sleep anymore? I used to but now it's like I'm not even in my own room anymore. If I can't hear anyone out there it's like I'm the only one home. My legs itch, I feel sick and I just want it to be morning.  Please don't go to sleep before me. Why I can't I fall asleep?"

I want to say "My dear Brayden. You can't sleep because the strep monsters have your brain on fire. These monsters are not under your bed. They are not in your closet. They are in your brain. They are attacking your basal ganglia and depleting the dopamine your body needs to help you fall asleep.  They are messing with your emotions and behaviors. They are making you think that all food is gross so that your little tummy is growling right now with a hunger that I can't take away. We are trying to fight those monsters but it takes time. Your mainstream doctor doesn't see those monsters. Your other doctor who knows about those monsters is too busy helping other kid with monsters. So my dear Brayden, you can't sleep tonight because of strep monsters and unlike other monsters that kids have, a spray bottle of monster eliminator will not get rid of them.  But I promise your mommy will not stop trying to get rid of them and one day you will sleep soundly in your own bed safe and secure."

But I don't say any of that.  I say "Little buddy, mommy has made you a comfy bed in our room right next to our bed."  I get a big smile, and within minutes, he is asleep.