Battling the PANDAS Disorder

It has been quite awhile since I have written about PANDAS Disorder, but I feel I am definately learned where to go to find an enormous amount of information about this fairly newly acknowledged disorder. I have googled until my eyes were burning, but what I found was worth it’s weight in gold.

Finally, I see that there just might be a reason for all the strange behaviors that have engulfed my son’s being. There are a vast amount of sites that have shown me the way but the easiest for me to navigate as a parent were: Saving Sammy, PANDAS FOUNDATION, PANDAS network.org, and P.A.N.D.A.S resource network.  I was amazed at how only a year ago, I could find a scant amount of information on this sneaky disorder that I see wrecking havoc on my son’s life.

Now, if I do a search, I find a wide variety of informative research that was once a  paragraph in every book I picked up.  Even though I have found mountains of research and helpful information, I have been to 3 doctors: one and ear, nose and throat, an immunologist, and our previous pedicatrician and NO ONE believes or even will look at the vast binder full of information from studies that I have found.

Isn’t that odd? I do all this research, essentially on my own to help figure out my child’s illness that is clearly related to having strep throat for well over 6 months and no one can even listen or look at what a mother is seeing right before her very eyes. I am an educated woman and still no one will even think outside the box?

I have been told by the ENT that the only cure is to remove tonsils, addenoids and put tubes in my son’s ears. Immunology has done scratch tests, blood tests, and pulmonary function testing. HIs diagnosis for me was that my son “just has bad luck”. Thank you for your medical opinion Dr. cracker jack, tell me something I didn’t know or maybe help my kid feel better. I had a giant 3 ring binder of scientific studies on the disorder and no one will hear me.

Thousands of dollars worth of tests later, I decided it was time to get a new pediatrician. Surgery was a part of the equation, but I knew otherwise as far as his immune system. Dr. Dolittle sent me a nice bill that I personally want to burn in my front lawn for the lack of empathy he showed me. I have since found a PCP that will work with our Defeat Autism Now specialist to figure out the root of the problem.

Currently, we are waiting for approval for an MRI of his brain to see just what is going on in there that just may possibly be causing my son to turn into a whole different child. Behaviorally speaking, this is not the norm for my son. He is not an aggressive, emotionally labile, terrified, bedwetting boy. There is a reason, other than bad luck. Also, we have found out the hard way, that most doctors do not even acknowledge PANDAS disorder and there are NO specialist’s anywhere in our area. Although, I am willing to travel through hell or high water to get to one if need be.

I have found a very large amount of woman on the web, that in fact, have children with autism and PANDAS disorder that have been to the specialist’s and recovered their children from this disorder that magnifies the symptoms of autism by ten fold. So there is hope and answers out there if you are willing to advocate for your child.

I urge any parent that witnesses a dramatic change in their child’s behavior to extreme obsessive compulsiveness, fears, tics, overnight loss or decrease in fine motor skills, or dramatic emotional changes to check into the possibility of this disorder. I have witnessed my child take a major regression over the last year and if this information can help anyone in this situation, I will feel relief in knowing I helped just one person.

I will continue to post updates on our son’s journey. Hopefully, we will have answers and a healthier happier little boy soon.

If you want to learn about this disorder please look up the symptoms on the websites I have provided. There is also a lot of research available.

 http://www.pediatrics.or/cgi/content/full/113/4/907

www.elsevier.com/locate/jneuroim

Journal of Child and Adolescent PyschopharmacologyThe Immunology of Tourette’s Disorder, Pediatrics Autoimmune Neuropsychiatric Disorders

Volume 20, Number 4, 2010

Mary Ann Liebert, Inc

Pp.317-331

DOI:10.1089/cap2010.0043

 Associated with Streptococcus, and Related Disorders: A Way Forward.  Tanya K. Murphy, M.D., Roger Kurlan, M.D. , and James Leckerman, M.D.

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2 Comments (+add yours?)

  1. Jackie
    Nov 29, 2010 @ 13:08:58

    Hello, I have a daughter who was diagnosed with Autism before she was 3. She developed PANDAS about 3 yrs ago. Her neurologist at Dartmouth Hitchcock diagnosed her. He said they would treat with a high dose of antibiotics and if that did t work sometimes they need to do a blood transfusion to get it out of the blood. It seemed to have gotten better for a while but the last year has been terrible. Her behaviors are something we have never seen so aggressive. I am reading this thinking is this why she is so out of control? She has trouble swallowing food now and gags a lot. She will only eat soft things now. I am planning to call her neurologist to find out where we go from here? Do I beg for them to take her tonsils/adnoids as well? She had tubes when she was a year old. She has had strep quite a bit and many that went undiagnosed. Any help you could give me would be greatly appreciated.
    Thank you
    Jackie

    Reply

  2. liz
    Apr 04, 2011 @ 11:17:06

    My son was diagnosed at childrens hosptial in cincinnati with pandas

    Reply

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