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 

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

Thursday, June 26, 2014

Graduation Party part 2

Ready for a party??  Take a peek into Princess Grad Party from last Sunday night.. June 8,2914
It really did turn out nice.. For me throwing it together last minute and all ��
Princess & The SIL
The SIL's Family
A few pics of mine and DH families and our friends 
Meanwhile out in the yard
Back in the house
And back outside
The kids all had fun and the adults did also..

Thursday, June 12, 2014

Graduation Party part 1

Princess didn't want a huge party, so after Graduation we invited a few family and friends back to the house for food and fellowship... I didn't go all out but here are a few of the decoration I did throw out..
And here is the cake and cupcakes which my mother made for the party
Still can't get over that my baby girl is no longer in High School, but a College Freshman 

After Graduation pictures

Thought I would share a few more pictures from graduation 

Walking out after graduation
Hugging her great grandma, my grandma
This is her boyfriend, hmmm what should we call him on the blog?? What about "The SIL" that should work.. Anyways here is the SIL giving her a hug
And here they are posing
Back at the house here is a pic of me and Princess
And last one for this post will be my favorite girls, Princess, Sweet Pea, and my Little Princess 

Princess Graduated !!!!

  I know I said I would do updates to get you all caught up, sorry about that just been way busy..

One of the things keeping me busy is my baby girl #1, Princess had Graduation..
She had it last Sunday June 8,2014
So proud of her she has became an amazing young lady who has so tremendous strength and courage over the last year.. 

I love you Princess and Praying Gods will for you in the rest of your life

Friday, May 30, 2014

Moble blogging

It has been ages since I posted.. So much has happened, but I just downloaded the blogger app to my phone,soooo maybe I'll be better at keeping up with my long forgotten blogs.. 

Hmmm wonder if anyone even remembers that I have a blog ��

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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