Wednesday, October 09, 2013

October 9,2013 PANDAS/PANS Awareness Day

Today is the First Ever PANDAS/PANS Awareness Day, and even though I don't get the time I would like to keep up with my blog, I can not let this day go by with out a post. 
PANDAS is one of the reasons, my blog time is a thing of the PANDAS..  because it has steeled way a normal childhood from my children.   I don't have the time right at the moment to share our story with PANDAS.  I'm hoping to find  time later today, fingers crossed..
I do however have permission to share one mothers story with you all... and If you lucky I"ll be able to share a lot more with you as I find time though out the day..

Here is her story.
PANDAS AWARENESS DAY…..this is Gianna’s Story

I share our struggle, so that others will not have to struggle.

When Gianna was 1 yr old, Gracie had strep 4 times, Skyler 3 times and I had it 3 times that year. We never swabbed Gianna for strep because the doctor said children that age rarely have strep and she showed no classic strep symptoms. However, she chronically had a fever spike that year of 101.8F. The fever would lower to 99.8F, go away briefly and return a few days later. She almost never had a normal body temperature. At the same time, her neutrophil counts (her immature white blood cells) were at a chronic scary level…just above leukemia levels which had us seeing a hematologist/oncologist for months. We now know she has neutropenia, so when she comes in contact with an infection, her body cannot make neutrophils fast enough to replace the ones her body is using causing illnesses to linger for long periods of time. A compromised immune system was building and creating the perfect storm for PANDAS.

Just before 2 yrs old, Gianna became very sick and a few days later her personality changed far beyond the typical toddler behaviors. She was always such a sweet, loving toddler. However, she turned into a raging, frustrated animal with blank stares and an inability to learn colors, letters, or retrieve words. I remember crying as I laid in bed asking Christian, “What am I doing wrong? I am parenting her the same as Gracie and Skyler, and they were always so sweet, compliant, and likable. I dread getting up every day knowing how difficult Gianna will be. It is like she changed overnight. I guess this is what the terrible 2’s look like. I guess I was blessed to have never gone through that with Gracie and Skyler.” I was heartbroken and exhausted.

Things calmed down between 2 1/2 and 4 yrs old, and I had no answers as to what changed her personality overnight and what brought my sweet little girl back…until Monday, Dec 10, 2012. You see…PANDAS parents can often tell you the day and exact moment they lose their child to PANDAS. She woke in a pee soaked bed. I knew something was wrong because from the moment I put big girl underwear on this child, she never had the slightest accident. Within minutes, I realized she had a fever of 101.9F. She was off…almost mute, stuttering, unable to find the words in her head. Her look was blank. The color in her eyes had disappeared…all that was left were BIG BLACK PUPILS. She sat watching TV while drinking a bottle and in a panic said, “Mommy, I can’t see. I can’t see.” I went to her and placed my hand on her leg so she knew I was there. “Mommy, I can’t hear you.” Pure panic…was my daughter having a stroke? In 2 minutes, her vision and hearing returned.

Off we went to the doctors, MRIs, EEGs, blood work and lots of worry. I came home from all of this to a phone call from my sister. “Jack just tested positive for strep. I just wanted you to know for Gracie’s sake since the kids were all together Saturday.” My heart sank…another child with PANDAS. This cannot be possible. It is supposed to be rare!

The weeks that followed brought me back to the Terrible 2’s Phase. She was totally non-compliant…down right defiant, but with a totally blank stare. She could not process anything we were saying to her. She was no longer behind those big black eyes. This was NOT my Gianna. She did not speak much except to tell me not to step on cracks (OCD), she had to wash her hands because they felt germy (OCD), she could not eat that food because it felt or looked weird (sensory issues), she was scared and could not sleep (anxiety), she was not hungry (anorexia), or she peed her pants (urinary frequency). And to voice these needs was a struggle…each word was lost in her brain which was literally on fire (Learning Impairment) and she spoke like a baby (Age Regressive Behaviors).

With a 30 day course of antibiotics, Gianna slowly returned as her immune system quieted down and stop attacking her brain instead of her infection. That is what PANDAS does. The immune system confuses the basal ganglia in the brain for the same type of cells as strep bacteria; thus, the immune system launches a full blow attack on your brain cause inflammation and neuropsychiatric symptoms.

Knowing the symptoms can change the outcome! Please, share the PANDAS awareness information I have posted today. 10 friends who have 10 friends share the information means 1000’s of  friends will become aware. You will touch a child’s life who is struggling right now, and the parents are sitting crying wondering where their child has gone.

I thank this mother very much for allowing me to share this with you... there are so many children struggling and so many parents wondering what is going on, what happened to my child, who is this child standing in front of me, why is my child acting this way... 

Folks we need to bring awareness to parents, to schools, to those in the medical community.  If you know the symptoms you can change the outcome.  
You can learn more about the signs and symptoms HERE

Help us pass the word along..  There is help for these children if they get the right treatment, but most children are getting incorrect Dx, they are being labeled according to the symptoms and not the cause. 
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