Thank you to a special NEPANS family for creating these wonderful bracelets, handouts with a short version of their story, information on My Kid Is Not Crazy and NEPANS information sheets! They have dropped them off at the following locations:
- The hospital that treated their daughter
- Primary care office
- Local walk in clinic where they get swabs at
- Children's schools with a reminder to try to schedule NEPANS to visit
- Mailed to most family and friends.
- Local Library
- Local CVS Pharmacy Staff
How fantastic is this! Below is the text printed on the handouts. Everyone can create a version of these handouts for themselves to hand out. You don't have to have the bracelets.
Thank you so much for helping spread PANS PANDAS Awareness and Understanding!
PANDAS/PANS AWARENESS DAY - Oct 9
Be Stronger than the PANDAS
We are asking that you wear this bracelet to help spread awareness about PANDAS/PANS on Oct 9th...tell people what it is, maybe you can help someone else who may be going undiagnosed! Many of you have kids, go in/out of daycare's, schools & doctors offices. Many of you work in hospitals or schools! I have already met so many people that know someone else with this horrible disorder. It's an UNDER DIAGNOSED disorder, not rare. Doctors and nurses are not fully aware of it yet. There is a very small population of doctors that treat this, it's very difficult for people to get diagnosed and then treated. Imagine years ago, Autism was very controversial-it took years and years for it to be recognized-by medical professionals, insurance, schools & parents. This is where this disorder is right now-awareness, research, training, trial treatments. The NIMH does recognize it-we are waiting for the rest of the medical world to get the word out. Raising awareness and sharing the knowledge will help people get diagnosed, get more research and help kids get treatments they need to enjoy their childhood.
Our daughter, Justine, had sudden onset of PANDAS and Autoimmune Encephalitis in Kindergarten, Nov 2016. Justine had a very sudden onset of multiple symptoms that concerned us as parents right away. It affected her immune system, which instead of fighting the infection, created an attack on her own immune system and her own antibodies! She was hospitalized 4 times for IVIG treatments at MGH Children's Hospital in Boston. She missed 89 school days & over 50 days were partial 45 minutes-1.5 hours. She had a very hard time with separating from family and a lot of anxiety and had varying symptoms on the attached list. Currently, she is doing very well....she has attended 20 FULL days of school and 4 half days. Only 1 missed school day! This is unbelievable. She is in an AMAZING program at school that is working to support her needs medically, socially, emotionally and academically. We are Lucky. We are the Lucky Unlucky ones. She was DIAGNOSED early, TREATED early and getting better!! We won't be out of the woods completely-Justine has lots of daily medications; we see therapists and much more. We aren't at 100% her anxiety is still pretty high after all she has been through. She doesn't have the same life she had before, we don't live like we lived before. Things have changed but we are very fortunate for her improvements.
You can't catch PANDAS from Justine, in fact, she is more likely to “flare” around others if they are carrying an infection like Strep, Mycoplasma (pneumonia), Lyme, Flu, Stomach bugs etc. There have already been over 10 cases of strep in Justine's school...she does react around it. Without even telling her, her immune system reacts.
Please don't forget about Justine and her story. She is not in hiding, but she is healing her immune system and doing the best she can with her anxiety.
This movie, My Kid is Not Crazy, was created by Tim Sorel. He dedicated his time to this movie and helping families with PANDAS/PANS to spread awareness and tell their stories. He lost his sister to cancer, he made her a promise to create this documentary before her death. His sister found out about PANDAS/PANS from Beth Alison Maloney, her lawyer while she was dying. Beth Alison Maloney, author of Saving Sammy and Childhood Interrupted, shared her story to help other families. Beth's son had PANDAS, they struggled too long for a diagnosis and treatment. She fought hard and long for answers, struggled to try to understand what happened to her son and begged for help for him, like most of us do with a PANDAS child. Today her son is better, they got a diagnosis, fought hard with treatments and he is functioning again. PANDAS is REAL. It's REAL AWFUL. It's REAL LIFE CHANGING. It's a REAL KIDNAPPER. It takes our kids and we have to fight SO hard to find them, get answers, get people to believe us, get people to test our kids, get people to treat them, get them to try new medications when if things aren't work, get them to get our kids better!!! Meanwhile, we actually have to deal with every day life, teach ourselves how to now bring up a child that has changed so dramatically from what their everyday life was, deal with every day life of their siblings, deal with the fact that it can run in families, deal with our own stress and medical conditions-especially for the sake of our now autoimmune child who is highly vulnerable to getting sick from you. Dealing with multiple doctors, nurses, therapists, schools, school nurses, teachers, IEP vs 504 school plans, insurance, pharmacies and so much more! Life goes on around you, it's not easy.
It is a difficult movie to watch-it is not for young children.
Please take a minute to watch this video for FREE on OCT 9th to learn more about this disorder.
Tim Sorel had no personal tie to PANDAS other than a promise to his sister based on hearing how kids were suffering. Things like this and people going out of their way to tell their stories are helping others.
We want to make sure kids don't suffer, they can get help and get treatments.
We appreciate your support in wearing this bracelet and remembering our story, Justine's story...the Unlucky Lucky one. PANDAS is real.
Please spread the word-PANDAS/PANS
Symptoms can vary. For some it's more gradual. For others it's overnight onset. For some it's only a few symptoms. For others it's several that vary and come and go. Not every case is the same, not every child reacts the same from the same treatment. It's very unpredictable.
For more information on PANDAS/PANS please visit www.nepans.org
Thank you for taking the time to read and learn about this. Please email me with questions (insert address).
NEPANS Board Members & Special Guests
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