Onset occurred at age 5, almost 5.5, in September 2010, the Thursday of the second full week of school. He came off the bus that way, moving like electricity was running through him, afraid to sleep alone, with urinary frequency. Those symptoms were just the start, as more features (fight/flight anxiety, extreme sensory defensiveness, trouble swallowing, fear of vomiting, dilated pupils and light sensitivity) came on in unexpected waves throughout that year. He did have a “sore throat/cold” and pink eye summer 2010.
We saw many doctors over 18 months; we visited our family doctor, a pediatric urologist, ER doctors, 2 neurologists, psychotherapist, neuropsychologist, allergist, immunologist trying to get to the bottom of all the new symptoms. I was surprised at the ease with which some providers would want to prescribe big-ticket psych drugs without doing things like checking blood sugar or thyroid! He was eventually worked up for diabetes (negative) and other urinary disorders (also negative). As waves of more symptoms hit including, sudden sensory defensiveness, irrational and overwhelming fear of red lights, extreme perfectionism, declaring that he wished he were dead; we scurried from one specialist to another searching for help.
DIAGNOSIS & TREATMENT
We learned about PANDAS from co-workers familiar with Dr. Louise Kiessling's work in RI and from the April 2012 Parents Magazine article on PANDAS. One co-worker was listening to our struggles and ran in with the article saying it sounded just like what I had been describing. I read that article and wondered if the reporter had a spy-cam in my house. Our family doctor looked at the article and agreed that could be a possibility, checking his throat, sinuses, ears, perianal region and blood for strep. The throat culture was positive despite treatment for strep back in Jan-Feb. In April of 2012 with our family doctor, for his initial treatment for suspected PANDAS, he started a round of antibiotics (Pen V), receiving 3-10 day rounds totally about 4 weeks of antibiotics. We saw dramatic improvements 4 days in. No antibiotic = full relapse.
My daughter was 7 years old when her personality completely changed; she went from a happy go lucky little girl to a paranoid child with unrealistic fears of tornadoes. It was so bad, she could not be near windows, all of the shades had to be closed, and was not be able to leave the house if it was dark or raining. I also had to have her seat in school moved away from the windows. Her fears were severe and real to her and as a result had full-blown panic attacks. She not only had obsessive-compulsive thoughts but also did cartwheels non-stop as if she was driven by a motor. She had severe separation anxiety, wet the bed, hallucinated, paced around the house at night not sleeping, and when she did sleep, it was in bed with us. She had sensory issues; she had trouble with her socks and pants, just the feeling of them on her skin would bother her.
Everyday I brought my daughter to school she cried, she cried so much the nurse would call and I would have to come take her home. I was so lucky I did not lose my job and was able to bring her to work with me. Then there was a really bad rainstorm and she was so distraught that she stated she wanted to die. I immediately brought her to the hospital, where I saw a physician who thought she might have PANDAS. They did a rapid strep test but it came back negative. At the time, I did not realize the antibiotic she was on for a urinary tract infection could mask the results.
We followed up with her pediatrician who put her on adult doses of anti-anxiety medications, doses so high that the pharmacy called concerned. In my opinion, these medicines also contributed to hallucinations she was having.
DIAGNOSIS & TREATMENT
I poured over case studies on the Internet and was convinced regardless of the negative rapid strep test, PANDAS was still the proper diagnosis. Two months went by with no changes, and I contacted the emergency room doctor to see if she could run a blood titer to check for strep in her system. She did have an elevated titer so was put on an antibiotic. It took another year and a half of low dose antibiotics to see continued results.
She had seen at least 5 therapists, 2 psychiatrists, a neurologist and 3 pediatricians before being treated. She lost 18 months of her childhood before proper treatment.
RELAPSE & REMITTANCE
After treatment, she got about 70% better for about 3 years. She still had anxiety but was able to manage well enough. But then she got a severe cellulitis eye infection in which both eyes were swollen shut; she was sent by ambulance from the local hospital to the large city hospital. She received the strongest IV antibiotic to control the infection. She had pockets of fluid in her eyes, which required surgery. This is when we started re-living the nightmare! We honestly thought antibiotics had treated her problem and we would never be here again! This flare started with major fears and anxieties: she thought her teeth were falling out, that her appendix burst and started having chest pain. We had EKG's, XRAY's, Ultrasounds, and finally our pediatrician suggested seeing someone at a mental health facility. I reluctantly took her there, where they separated us by a locked door, had an evaluation with her and then brought me in. I knew my daughter did not belong there, or did she? It is so hard to see your child decline like that, you wonder why this is happening and if this will be for the rest of her life. We started back on our journey with PANDAS. Thank God I had started a support group in the midst of all of this to ensure other people would not feel alone; I needed these people now. When my daughter first got sick there were no resources, only case studies on the Internet, so it was a very lonely time.
She has since been treated again for Strep and also has tested positive for Lyme, Bartonella, Erlichiosis, Mycoplasma pneumoniae. In addition to these infections, she has POTS. She also had neck swelling which has since gone away with antibiotic treatment. They think she is a strep carrier so does not show typical symptoms. I feel as if Strep and Lyme have both been culprits in her illness. She is 17 now and is still being treated, we are hopeful that with this new treatment plan she will continue to get better and not remit again.
We also have a son that was diagnosed with a much more mild form of PANDAS which did not require long-term antibiotics to treat.
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