PANS/PANDAS During the Corona Pandemic Study

Corona Pandemic and PANS/PANDAS

Please complete this study from the Karolinksa Institute on PAN/PANDAS during the Corona Pandemic. It will only take up to ten minutes. If you have several children with PANS/PANDAS, you can take the survey multiple times, once for each child. 

In this anonymous survey, we are interested in how children and adolescents with PANS/PANDAS are affected by the ongoing coronavirus pandemic. The results of the study will help us understand how the coronavirus pandemic affects children with PANS/PANDAS and their families. We are also interested in whether the healthcare system in your country is able to provide the support needed. Karolinska Institute Study

2 comments to PANS/PANDAS During the Corona Pandemic Study

  1. Christine
    June 7, 2020

    I wasn’t able to fully answer a couple of questions. After 7 years of torment wondering what was wrong with my son he finally was diagnosed with Lyme and PANS at 12. He had a tick bite at 5 and developed PANS like symptoms the month he was bit.

    my son is being treated by a an functional medical Dr. for 3 years now. She has been the most helpful and the dr who diagnosed him. We started in the traditional medical model and found it not to be helpful at all. It was a very frustrating/stressful time looking to physicians for direction and they didn’t seem to have any. The Lyme/PANS clinic in Cohasset MA was the beginning of our journey to healing.

    During Christmas vacation my son became more OCD, argumentative, some difficulty sleeping but little to no sick symptoms. I became concerned because in his face he looked very sick (circles around his eyes and no appetite) and would have a cough that sounded so bad as if he was coughing for weeks but was very occasional. I would check for fevers but he never developed one. This went on for 4-6 weeks. It was an illness that my son had with the most suppressed symptoms. It scared me. He gets something every winter but develops more symptoms than he did this winter. Such as Low grade fever, night cough sore throat…

    Reply
    • Gabriella True
      June 10, 2020

      Karolinksa Institute is in charge of this study. ASPIRE is simply sharing it to get more people to participate.  If you would like to add information to your survey, please email them directly. The lead researcher’s emails are on the link provided in the study information.  Also, if you would like to write your family story about your PANS journey, we would love to have you do so.  Here is more information on that program. https://aspire.care/get-involved/share-your-story/ If you have any questions, let me know; I have emailed you directly too.

      Reply

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