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 

http://youtu.be/ao_SE_PjNcg

Mr Man's story

In Sept 2011 Mr Man went to bed a heathy happy 11 year old boy.. When he woke up he had extreme anxiety, OCD intrusive thoughts, and tic, Tourette syndrome like movements.. AND Strep Throat.. Antibiotic was not enough to stop the symptoms, Mr man needed IVIG,a blood product administered intravenously.. It contains the pool polyvalent, IgG antibodies extracted from the plasma if over one thousand blood donors ..IVIG sort if shuts down the immune system and allows the donor antibo...dies to take over.. So that His antibodies are not misfiring and attacking his brain...only due to lack if awareness and studies insurance companies do not have to cover this important but highly expensive treatment that alot of PANDAS kids so desperately need.. We are in the middle if this battle right now trying to get it approved while Mr Man is suffering with symptoms if PANS being triggered from coming in contact with the Coxsackie virus aka Hand Foot & Mouth.. Now is the time to spread awareness 10/9/14 PANDAS/PANS awareness day#PANDASawareness

My Sweet Pea

On her 7th birthday Sweat Pea got sick with in a week her world was flipped upside down never to be the same again.. We found out in April 2010  what was going on it was PANDAS an autoimmune encephalitis.. When her body builds antibodies they go faulty and attack her brain bring on a world of messed up symptoms this top pic was shortly after starting treatment.. Notice her cloths pandas brought on sensory issues for her where everything that touched her hurt her and left her in... pain she took to wearing things 10 times to big and they still felt too tight to her.. Pandas/pans can be triggered by anything that causes an immune response and the symptoms can be sudden onset of OCD, anxiety, tic disorder, ADHD, ODD, mood swing, Tourette's, phobias, sensory issues, sleep issues, decline in math and reading and handwriting skills, and so much more.. PANDAS/PANS isn't really rare but it is rarely Dx due to lack of knowledge and awareness It's time to spread the word bring awareness to parents and Doctors so these children suffering from this gets the correct Dx and treatment for the cause of their symptoms.. 10/9/14

PANDAS/ PANS Awareness Day

Today is PANDAS/PANS awareness day

And over the next few post I'm going to share short versions of why this is so very important to me