PANDAS and autism

May of 2009 our son Hunter ended his first year of developmental preschool. He had had a wonderful year and developed so many new skills. To everyone around him, he seemed like a totally different kid. We couldn’t have been happier with his progress.  We had no doubt that he would grow and develop wonderfully in his second year of developmental preschool.

Over the summer, however, he took a downward spiral of regression in skills that had been mastered. This was aweful for us to watch transpire. He had turned into a much more agressive, oppositional child. Emotional stability was so bad it was enough to bring any mother to tears. We tried to figure out what might be going on and could only contribute it to not being in the school routine.

All through the summer we watched as our child crumbled emotionally, lost control for no reason and failed and simple things he once knew. He developed a throat clearing tic and constantly yelled “stop talking”, for no apparent reason.  Sleep disturbances reoccurred as well as wetting himself during the day. We simply could not understand what had happened to him to cause this.

We hoped that once school was back in session, he would go back to his normal loving self and be able to stay on task and complete his work at school. However, that was not the case. When we questioned his behavior and adjustment to a new class, we soon learned that the change was evident at school as well.  The teacher reported crying jags, emotional lability, frequent urinations and loss of fine motor skills. This was becoming a parent’s worst nightmare come true.

We were determined to find out what had changed about our son. We were told that regression was part of autism and that he would probably turn around in time. We just couldn’t take that as an answer. Soon thereafter, I decided in desperation, that it was worth it to go to Charleston West Virginia to the only Defeat Autsim Now doctor that we had in the state.

We went on the long trip to Charleston looking for some kind of answer of how our child just did a 180 and turned into someone different overnight. Dr. J ordered some labs that, I as a nurse, was not familiar with. She also asked a lot of questions that seemed to specific to what we had seen happen to our son.

After a few days of waiting, we got a call from our regular pediatrician stating that his ASO titer was positive. Having never heard of this lab I quickly looked it up on the internet. The results could be a number of things and most of them not what a parent wants to hear. After talking to Dr. J we learned that our son’s possiblity of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep or PANDAS was what my son might have.

Everything that I could find on this was scary to me. I found that its hard to treat and anything sounding like a blood infection was down right terrifying. I was afraid that we might lose our son to this infection.  I have seen patients with blood infections working as a nurse and they are down right scary to treat.

My son has been treated with multiple rounds of antibiotics since then for strep infections.  We recently got approved to see a Defeat Autism Now specialist in Pennsylvania and started working on natural suppliments to boost and support his immune system over the summer.

The suppliments seemed to be helping tremendously. Throughout the summer, he only had some minor flare ups of allergies and asthma, no high fevers, regression or OCD type behaviors. However, we went a whole 3 weeks into the school year, and now we have Mono and strep, despite all the things we are doing to boost his immune system.

We are now looking at immunology specialists and ENT specialists to offer some sort of idea of what it is we are fighting against.  Dr. Suzanne, our Defeat Autism Now specialist, seems to be leaning on the PANDAS  diagnosis for our son. We really are waiting on pins and needles to find out how and if we can help our son fight back against all his chronic infections.

I must say the idea of some sort of cancer has crossed my mind as of late. I am terrified when he gets sick because I know we may be looking at a long course of antibiotics and regression of those most cherished skills he has mastered.  From all I have witnessed, with my own eyes, I really think that we are dealing with something very difficult to manage for our son’s future. But I will not give up on finding help and making him feel the best he can.

I will continue to keep all updated on our journey through his health issues. I have yet to find any parent that has this PANDAS diagnosis that can help ease our fears and offer hope. I praying everyday that new treatments will be available for our kids with chronic immune dysfunction and PANDAS.


1 Comment (+add yours?)

  1. Michelle
    Apr 21, 2011 @ 08:16:37

    Hi my name is Michelle, I am from Moundsville WV. My children have been passing strep back and forth for months. Now my 6 year old daughter has PANDAS. I am desperately trying to find a DR. in the area that can treat PANDAS. The closest I have found so far is close to 3 hours away from where I live. If you know of any Dr.s in the area please e-mail me. Thanks!!


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