Back in 2005 we were still putting smiling photos on our holiday cards and we still had a tiny bit of free time even with three kids age 5 and under, one of whom was a newborn and another had just been diagnosed with Autism. But come September of that year things really started to hit the fan. In 2004 when our son was diagnosed with Autism and as devastating as that diagnosis was, we thought for sure we had it under control. It was our older daughter who was the mixed bag of anxiety and emotions heading in to kindergarten, though her “crazy” behavior had started years earlier. The preschool teacher had seen the signs but never went as far as to interpret them for us. We do not think she would have called it PANDAS. At that point, I hadn’t even heard the term yet. Fortunately her Kindergarten teacher, who as a PhD in Early Childhood Education, noticed her behaviors insisted there was something wrong – really wrong but did not make a connection to PANDAS.
We took her to several pediatricians and developmental specialists who insisted that her behavior was a response to her younger sister’s birth or her brother’s autism. It was in the course of confirming a piece of information about Autism for my son that we stumbled on the term PANDAS. In its nascent stages of development PANDAS was very new as was the criteria for PANDAS as defined at the time. Our daughter was too young for the criteria, she had too few of the symptoms, she was not anxious enough to have PANDAS were some of the things I heard from the nice people. The not-nice people would not even discuss it.
By stroke of luck I had the baby in for a checkup at the pediatrician and she happened to be seen by an elderly semi-retired doctor in the practice. At the end of the exam he asked if there was anything else I needed, I took the opening and asked about PANDAS for my older daughter. By that time, honestly, I was willing to chat up anyone. This wonderful older doctor saw her a few days later. We talked all about PANDAS; he gave me instructions, 2 months’ worth of antibiotics and sent me off telling me that the invoice would only read ‘Anxiety’ not as a favor but because the practice was not allowed to code PANDAS. He said they could not support PANDAS in a pediatric practice. He also told me, I’d have to go out of state to find a practice for further care. He offered no more help and no other names or advice.
Fortunately our son’s private teacher provided the next clue. She had had several kids from lower Westchester seek out an integrative medical practice in Connecticut with promising results in many cases. That was our next step; it was a big one emotionally and financially. We are very grateful to have been given the direction we needed. It was not an easy direction and still is not to this day.
The two older kids got IVIG treatments covered by insurance for two and a half years. In the end our older daughter benefited greatly and is on the road too managed recovery. Our son’s body did not hold on to his gains from the IVIG but it helped while he was repeating courses of IVIG. When he went off IVIG, he went on different protocols that still need to be changed occasionally.
Our baby is now 10. When she was in preschool we watched her like a hawk. In Kindergarten as soon as we saw signs of PANDAS we sought treatment and because her older siblings had undergone extensive therapies and our practitioners knew our family history. At age 4 ¾, as soon as she began exhibiting PANDAS symptoms, she was treated right away without having to endure a “wait and see” approach. Her siblings age 13 and 15 now still have their ups and downs with PANDAS, they still get treatment on an as needed basis.
Our son with Autism, now age 13, still struggles with symptoms of PANDAS, Autism and food allergies. We are lucky to have caught his PANDAS relatively early. The earlier the better it seems.
Our oldest daughter who originally drove her preschool and Kindergartens teachers a bit crazy is now days an amazing student, artist and writer. She also seems to have reconciled what she used to call “The loss of 6 years of writing ability, and friend ships” into a stepping-stone and is building her future.
We hope to God that your journey is made quicker and easier having read this information. Best wishes on your journey.
NEPANS Board Members & Special Guests
Many Blog entries are long enough to go onto a 2nd page. Please click Read More in the bottom right of some blog entries!