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Thursday, September 19, 2013

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.

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