Hi-- I am the mother of an 8 year old girl whom I adopted at 18 months of age from Kazakhstan. I have no past medical history except that she was abandoned at birth, reared in an orphanage and had chicken pox in the orphanage ? age and tested positive for maternal antibodies for Hep C (she was negative when tested at the appropriate age). My daughter was always a perfectionist and was comforted by orderliness..but approximately 1 year ago, she experienced a sudden onset of acute separation anxiety and 'checking', regression, handwriting changes, fear of urinating on herself, and worry about everything that I associated with the loss of a good friend (moved away) and our temporary relocation from Hurricane Gustav (we live in South Louisiana) and the trauma resulting from the family disruption, fear and anxiety. Unfortunately, her symptoms have waxed and waned and her "Mr. Bossy" tells her to perform rituals, check, seek MUCH reassurance and meltdown due to the frustration and fear associated with her actions. I am a psychiatric nurse and recognized these symptoms as OCD behavior which I thought related to the trauma/anxiety that she was experiencing. It was not until I began researching pediatric OCD and sat down and linked her frequent strept infections with the onset of the behaviors that I became aware of the link and possible diagnosis of PANDAS. She sees a child psych in New Orleans who prescribed Zoloft for the severe separation anxiety (it has helped) and she has taken a battery of tests at LSU in Baton Rouge and is going thru ERP behavior therapy with some positive (although slow) results. She was diagnosed with Separation Anxiety and OCD--and to monitor for correlation with strept infections for possible PANDAS diagnosis (ASO titer was WNL and rapid strept screen were negative when her pediatrician first prescribed the Zoloft for the anxiety).
Approximately 4 weeks ago, my daughter began an exacerbation of symptoms while we were on vacation and approximately 2 days later, began complaining of an ear ache and sinus congestion and was treated by her ENT with ear drops for swimmers ear. Her OCD behaviors began morphing into more rituals and meltdowns but seemed to level off until 3 days ago when she completely lost it and went into a full blown rage, complex rituals then broke out with a rash on her chest and a white coated ‘strawberry’ tongue which I associated with a throat infection. I brought her to her pediatrician hoping to get some antibiotics to help her and thru a LONG discussion, was told he thought it was viral and she would not get antibiotics. I practically begged and cited (although I did not bring) reports detailing the need for antibiotics even though it might not be strept but he would not buy it—he is VERY conservative—always has been.
Long story short, I acquired some Augmentin and started her on it last night. I do not promote self-medication and am somewhat uncomfortable with my choice but feel it is my only recourse until I find someone who is willing to listen and understand this issue. I will watch her closely for any symptom changes and am cautiously optimistic and anxious to see the results.
In the meantime, I am looking for a pediatrician or another provider in Louisiana who can and does understand this horrible illness. It has been a year of ups and downs and my dear child is so brave but exhausted in her battle--Does anyone have any suggestions? I am at the end of my rope!
