Thursday, February 25, 2010

Strep/PANDAS... our story

Gabe tested positive for strep again today. I knew our few days of "thinking" Gabe was well was too good to be true. Poor guy was up for hours during the night, requesting a lot of water to drink, which I admit should have been a clue to me that he was not feeling well. Another clue I missed was his new "ritual" he began last night. He flapped his hands several times and then grabbed his legs in what resembled a Michael Jackson dance move. He did this repeatedly and I laughed it off as just another funny "stim" Gabe had created. It turns out that was a new ritual that was most likely due to his current strep infection. He tends to have flare-ups of increased OCD, verbal stimming and ritualistic behavior when he has a strep infection. This started when he was three and awoke in the middle of the night and began moving around frantically, completing complex rituals in each corner of his room. I was unable to engage him at all that night during the hours he spent performing these rituals. The next day, he continued to complete rituals in other rooms throughout the house. I was disturbed to say the least to watch him behave this way and I reached out to a friend who mentioned PANDAS to me. Once I researched it, I was convinced this is what was plaguing my son.

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Children with PANDAS usually have a dramatic, "overnight" onset of symptoms, including motor and vocal tics, obsessions and/or compulsions. This onset of symptoms is generally preceded by a strep throat infection.

The next day I made an appointment with my son's pediatrician and explained my concerns to him. I requested a strep test and the pediatrician looked in Gabe's throat and informed me that since Gabe did not have a red throat and no other "signs" of strep throat, there would be no need to test him. I argued that I had just listed off quite a few reason for the test (all relating to my research on PANDAS). He reluctantly agreed to test Gabe, but made sure to go out of his way to make me feel very foolish for requesting such a test. (I do not think he had even heard of PANDAS, which is scary since he is in fact a pediatrician.) I already knew this particular pediatrician knew very little about Autism and would not be surprised if he was chalking Gabe's symptoms up to Autism (the thing he knew nothing about).

I have to admit that it was more than satisfying when the doctor returned with his tail between his legs and a look of bewilderment as he explained that Gabe's strep test was positive. He just stared at me in disbelief. Wow! Imagine that... a mom knowing her child better than a doctor. Hmmm...

We treated Gabe's strep with an antibiotics and in time (approximately 6 weeks if I remember correctly) his PANDAS symptoms faded. I believe that my son's strep is systemic, meaning that he has chronic strep in his body. We will be completing a strep titers test as soon as he is well. When we last visited his DAN (Defeat Autism Now) doctor, he felt strongly that Gabe's frequent verbal stimming is related to strep. This doctor has ideas on how to best treat it and we are very anxious to begin this protocol. It's difficult for me to let my guard down long enough to get my hopes up about anything, so I won't get too excited just yet that his treatment plan will lessen the verbal stimming or any of Gabe's other related issues. It would be wonderful, though, should we be able to successfully treat the chronic strep and see improvements!

We are also seriously considering removing Gabe's tonsils and adenoids. We will meet with an ENT soon to discuss this part of the treatment plan. We have been told that removing Gabe's adenoids could help with his sleep issues, but again, I refuse to get my hopes up because the disappointment in this area (sleep) would be far too great. Yet, should we see improvements in his diagnosis of severe insomnia, I can't imagine what a substantial role this would play in the quality of our lives.

Autism is such a complex, mysterious puzzle with so many pieces to put together. If we can treat this one piece and begin to heal my sick boy, that would be huge! If we could find answers to another piece of the puzzle, involving his persistent insomnia, that would be just as significant! Despite my refusal to raise my hopes and get excited about something that may not happen (can you tell I have been burned a few times?), I will pursue these possibilities and pray God's will as I continue to search for answers... more pieces to fit into the puzzle of our lives.

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