Thursday, October 09, 2014

Little Man's story

During the school year of 2011/2012.. While we were dealing with trying to get Mr Man well and get him the correct treatment. Little Man was in 2nd grade.. and was getting sick ALL the time.. each time he got sick I would see mild PANDAS like symptoms in him. Each time I would take him to the doctor they would give him an antibiotic and the symptoms would go away. Each time he was sick it was all Sinus stuff. Then came Spring of 2012 the antibiotic wasn't taking away the sinus i...nfection after months of trying to clear it up and even after a CT scan.. they found an antibiotic that cleared the sinus infection up. ONLY problem was it didn't touch his PANDAS symptoms. Which started out as a few fears and anxieties and some mild OCD issues, have now turned into a sneezing Tic. it took me MONTHS to get the doctor on board that this was a Tic and not an allergy.. my poor little boy spent All day long doing some weird kind of cough/sneeze tic. It sounded like a sneeze but it was a cough. Just over and over and over and over non stop. Our Local Doctors didn't know what to do, even though I told them I was pretty sure this is some form of PANDAS given he was sick, then all these PANDAS symptoms kept coming and now this sneeze tic.. But it wasn't until I took a few shorts videos of him at the end of summer 2012 of him doing it.. my old cell phone only took 16 sec videos so I sent the doctor a ton of them so he could see what I was talking about(PANDAS doctor out of state, this is why the video and not a visit) He agreed with me and looked and sounded like PANDAS and after a ton of blood work, they found Little Man's trigger was Mycoplasma and Coxsackie virus.. They started antibiotics and antivirals and his symptoms went away and I had my 3rd Child Dx with PANDAS/PANS. That was Fall of 2012 and the same time my oldest Princess was having very mild symptoms and was Dx with it also Fall of 2012 and started treatment also. Here is a short video really short 16 sec and my old phone didn't take that great of videos so it's not the best.. but it shows you what Little Man's sneeze tic was like.. 4 or 5 sneezes in 16 seconds. and this continued ALL day long.. There needs to be more awareness, more doctors and parents and hospitals and insurance companies need to learn about this.. Today 10/9/2014 is PANDAS/PANS Awareness Day.. Please spread the word. #PANDASawareness 

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