Susannah Cahalan wrote a memoir about her experience with an autoimmune disease – anti-NDMA-receptor encephalitis. Here is an article discussing her journey and excerpt of her book “Brain on Fire”
Great article from Boston Globe November 13, 2012
Here is a great article from the Boston Globe The PANDAS puzzle it is frightening how many similarities there are between this story and our story. Hopefully medical professionals will read this article and many others like it to realize that PANDAS is real and it is treatable!
Holding my breath November 11, 2012
We are approaching a year since we entered the twilight zone with the wonderful illness that is known as PANDAS – since our diagnosis we thankfully have had only two recurrences, one happened just before the school year began – and both boys started exhibiting symptoms within days of each other and the other recurrence happened just to my middle son (the one with the more severe symptoms). They both went on a round of antibiotics and all symptoms subsided. I am so afraid of going back to that place where we were a year ago, that I am super sensitive to their mood, their reactions, their comments – could it be PANDAS or could it be that he is just a 13-year-old boy! Will this nervousness ever ease? I think only time will tell, but I hope for my sanity it does. To be on hyper alert of how he is feeling, each morning when I wake him, I wonder is this the day he starts crying saying how horrible he feels – thankfully we know what causes these feelings and we have antibiotics on hand at all times, but I wonder what if I don’t see the signs early enough?
This is the part of PANDAS that makes mothers feel crazy – wondering should I give them antibiotics now, should I wait? I felt crazy before the diagnosis because of his symptoms and how severe they were and how fast downhill they both went – felt like my world was falling apart around me. Now we have a diagnosis, we know that antibiotics and a gluten-free diet help them with their symptoms, yet I am still scared, what if I let the symptoms go on too long? Holding my breath…waiting, monitoring, patiently supporting, educating myself on new research and telling myself to breathe. Dealing with PANDAS is a journey that our family will all go on together to help each other figure it out and support others in their journey with this illness.
PANDAS Support Group Meeting – 11/15 at 7pm November 5, 2012
Hope everyone is doing well! Our next meeting will be Thursday, November 15 at 7pm at Colin’s Coffee (3714 Riverside Dr, Columbus, 43221)
You can visit our Facebook page: https://www.facebook.com/PandasParentsColumbusOh?ref=hl
Or contact me at: firstname.lastname@example.org
Hope to see everyone then!