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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Wednesday, February 13, 2013

Neuro Film Festival

If I could ask you for your help..
There is a PANS/PANDAS Awareness video entered in the Neuro Film Festival.
Would you all please take a minute or two out of your day today to head over HERE and vote for the PANS/PANDAS Awareness video and help spread the word about PANDAS.

Thank you for your help.

Friday, November 02, 2012

30 days of Thanksgiving.

Think I'll do the 30 days of thanksgiving thing even though I missed day 1...

   1st and foremost.. I'm thankful for a God who choice me before the foundation of the world, and who gave himself for me.
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Thursday, October 11, 2012

Another Message for Boston Children's Hospital

Just got done posting this over at the Boston Children's Hospital Facebook Page.. It is so very important that they start listening and start learning how to treat children with this disorder.
This is my 13 year old son, getting the RIGHT kind of treatment for PANDAS/PANS
Last year at this time, my sons world was ripped away from him when he got a strep throat infection. My perfectly happy, healthy starting lineman for the school football team woke up one morning, deadly afraid if he played football he would die, until that morning football was his life his most favorite thing in the world. But at the mention of football, he was hiding under a blanket crying uncontrollably, along with that came other fears, and two days after that he had a blinking eye tic, the next morning after that his head was turning to the side and a should shrug tic came also. He was also running a fever so into the doctors we went and he tested Positive for strep that day... They treated the strep but it wasn't enough to stop the immune reaction he was having to the strep.
This last year has been a roller coaster ride of doctors and hospitals and improvements in his conditions only for him to be exposed again to make things worse..
Unlike with my daughter who had PANDAS for a few years now, antibiotics alone wasn't getting his life back for him.. Steroids helped a lot but it was only a short term fix. So in July 2012 he had high dose IVIG done at Children's Hospital of Michigan in Detroit.
BCH Please Please Please.. educate yourself, learn about PANDAS/PANS what it can do to a child, and what is the RIGHT kind of treatment that can help and heal a child... Do not let another child suffer from the wrong treatment.

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Rally to Support Family who lost Parenta Rights over Sick Child to Boston Children's Hospital.

Thanks to Athanasius Kircher  who read one of my earlier post about Elizabeth Wray..  I just received this Media Advisory.  I knew about the Rally and was planning on going until there was a death in the family and my plans changed.. but I had never seen the Media Advisory..  This is Excellent.   Thank you Lynn Johnson..  you are an amazing PANDAS/PANS warrior mom.

October 11, 2012 CONTACT: Lynn Johnson
PANDAS Resource Network


Rally to Support Family who lost Parental Rights over
Sick Child to Boston Children’s Hospital

Oct. 11 – 13, Blackfan Circle and Longwood Ave. Boston
Supporters working to return Elizabeth Wray to the care of her parents are holding a 3 day demonstration at Boston Children's Hospital to protest a lack of proper treatment for Wray's autoimmune disease Pediatric Autoimmune Neuropsychiatric Disorders (PANS). Boston Children's Hospital blocked Elizabeth's parents from seeking treatment at a different facility by having their custody taken away and placed with the Commonwealth of Massachusetts. They and their lawyer are currently under a gag order at BCH's request.
What: A rally to return Elizabeth Wray to her parents for proper care and ask that Boston Children's Hospital recognize PANS for the legitimate medical condition that it is, and stop treating it is a psychiatric disorder.

When: Oct. 11, 12, 13 2012, 8am-3pm

Where: Blackfan Circle and Longwood Avenue across from Boston Children's Hospital

Elizabeth Wray Story:

The PANDAS Resource Network represents 4,000 families affected by this little known disorder.

Lynn M. Johnson
Executive Director
PANDAS Resource Network

Wednesday, October 10, 2012

PANDAS PSA-Know the Symptoms (2)

Please help Elizabeth Wray

Petitioning Boston’s Children’s Hospital

Boston’s Children’s Hospital: Release Elizabeth Wray to her to her parents.

 The last I checked we were up to 555 signed, we still need 444 more to go, Please help Elizabeth by going HERE and signing  Thanks everyone for your continued support!
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Tuesday, October 09, 2012

Homecoming 2012

In some non PANDAS/PANS related news.. Princess had Homecoming this past weekend.  Thought I would share a few pictures that we took before they went to the dance.   

Princess and The Boyfriend

Princess and the girls


more of the girls

the whole group.

One last shot of Princess and The Boyfriend
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Still trying to get BCH to see the light.

Still trying to get BCH to see the light about PANDAS/PANS after sending links to every website I could think of I decided to start putting faces to the disorder..  Posted this today on their facebook Page..  You all would know this girl as my younger daughter Sweet Pea(the pic was taken last Thursday Oct 4, 2012)

This is my Daughter.. In January 2013 she will be 11 years old. When she was 7 years old PANDAS changed her life.. If I would have taken her to BCH I fear They would have placed her in a locked  psych ward and would have drugged her up on Psych drugs that would have done my daughter more harm then already was done. They would have let her symptoms get worse by not treating the problem, she never would have healed. She would have had to live her life every day with OCD, fears, high anxiety, sensory issues and an eating disorder... all because they want to close their eyes to the fact that PANDAS is real and it is caused by infections that can be treated with antibiotics. With antibiotic treatment my little girl is able to live her life... Unlike the children who go to this hospital for help and end up being ripped from their families and kept away from the treatment they so desperately need.
BCH Please PLEASE please.. educate yourself on PANDAS and the real treatment that has helped so many children with this disorder.. Don't let anymore children suffer at your hand with the wrong treatment.. Please stand by your statement "Till Every Child is Well" Learn and offer the correct treatment for PANDAS/PANS
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Friday, October 05, 2012

Boston Children's Hospital You Are Still WRONG

This is a facebook status that the Boston childrens Hopsital put out in responce to the PANDAS commuity telling them they are wrong and this poor little girl needs to be returned to her parents.

"Providing safe and appropriate care in a safe and protective environment is the paramount priority for Boston Children's Hospital. Boston Children's is dedicated to the care of each and every one of our patients. We evaluate every patient carefully and thoroughly to be sure they get the treatment they need.

Federal regulations do not allow Boston Children's or any health care provider to comment on the specific care of a minor without consent of the minor's custodial guardian.

Recent online activity has suggested that Boston Children's does not consider Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) to be legitimate medical disorders. Boston Children's takes every patient care situation very seriously and provides a careful and thoughtful diagnosis based on clinical evidence so that every patient gets the treatment he or she needs. This includes diagnosing and treating conditions such PANDAS/PANS." if you would like to read this off there facebook you can find it HERE

Well here is my responce to them.
This may be the worst attempt at trying to cover your backside I have ever seen.
"Recent online activity has suggested that Boston Children's does not consider Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) to be legitimate medical disorders." Not once in here did you say you do consider it a legitimate disorder.. "This includes diagnosing and treating conditions such PANDAS/PANS." Such as PANDAS/PANS or do you treat PANDAS/PANS.. and if you do say your treating it, how??? are you just treating symptoms which could make the child worse or are you treating PANDAS/PANS the way it should be treated, with Antibiotics, Steroids and if it comes to it IVIG or PEX?? Yeah from what I have been reading and hearing your hospital doesn't have the 1st clue how to treat PANDAS/PANS... So how can you state your "Providing safe and appropriate care" when you don't even know what appropriate and safe care is for a PANDAS/PANS child..
To those who have posted who are not PANDAS parents and who BCH has saved your childs life.. I'm am very thankful you were able to find the care you needed for your children. That is what the Wray family was trying to do for there child also.. They already knew what she had, they were not looking for this hospital to tell them what was wrong with their child, they just needed some help with treating some of her symptoms that came on from the auto immune disorder.. A hospital can be very good at one thing but not so knowledgeable or still in the stone age in another area. Last year I found myself in a spot like that at a well known children's hospital in Ohio. This hospital was a hospital I trusted, when my youngest son was 4 days old and extremely sick, they saved his life and I'm very thankful for that, But last year when my oldest son got hit hard by PANDAS and our doctor didnt' know what to do, they admitted him to this same hospital where the doctors wouldn't listen to me at all. You see my youngest daughter was Dx with PANDAS 2 1/2 years before my son was hit with it.. and I knew my son's case was a classic PANDAS.. OCD, fears, anxiety and a tic and movement disorder all showed up overnight and at the same time he tested Pos for strep.. I mean that is a clear a cut case you can get.. Pos strep infection in hand at the onset of the overnight change and symptoms... yet This hospital sat there telling me it is not PANDAS even while they were holding high ASO titers in hand.. They called in Psych and wanted to put him on psych meds and told me and my husband this was all because we were pushing him too hard to play football(which was never the case my son loved football until he woke up with PANDAS then the OCD thinking told him over and over in his brain if he played football something bad would happen) Thankfully the Akron Children's Hospital didn't call CPS on me for refusing to accept what they were telling me.. and I looked right at the doctors and told them they were wrong, and handed them all the updated paper work and research I could get my hand on about PANDAS. and I took my son out of that hospital and got him the care he needed to get better. That is all this poor family is wanting to do, they know the doctors at BCH are wrong and they need to get there daughter help, and BCH is harming this poor little girl by not treating her the way this disorder needs to be treated... not to mention that separation anxiety is a big PANDAS/PANS symptoms.. When my youngest daughter came down with PANDAS she would have a complete mental breakdown fit if I stepped more then two steps away from her.. It would be extremely scary and heartbreaking for any child to be away from their parents, but for a PANDAS/PANS child it is 1000% worse.. the stuff going on in there little brains that they have no control over it's awful.
at my daughters onset and worst of it all.. she refused to eat, she couldnt' wear cloths due to sensory issues from PANDAS along with the extreme seperationanxiety.. when I sought help from the Pedi he Dx her with OCD, high anxiety and a conversion disorder(his reason for the sensory stuff) a few weeks after that all heck broke loose... she stopped eating all together, stopped sleeping, did nothing but scream and cry while she sat naked in the middle of my bed rocking back and forth she couldn't lean back on the couch or chair cuz she said it felt like people were stabbing her with a knife(though at the time she wasn't telling me this stuff just screaming her head off in pain) she couldn't sleep because laying down on the bed sheets put her in pain also.. she sat with her arms around her knees rocking back and forth just crying till she would get so tired she would pass out and fall over, only it would only be for a bit because falling over waking up and feeling the stuff touching her had her screaming and rocking again... My husband wanted to rush her to the ER. he was worried she was going to dehydrate.. I fought with him, because I already had one doctor her Pedi trying to get her in with a psychiatrist, I just had this sick gut feeling if I took her in to the hospital in this state they would think she was crazy and want to admit her into the psych ward and I didn't want that for her.. so I fought with my husband... I was worried if they did that they would make me leave her and she was already having complete melt downs if I took two steps away from her, I couldn't do that to her.. Only after 3 days of this I was getting worried also and was trying everything to get something into her.. on day 3 of this.. she fell asleep.. it was only for 30 mins but it was sleep after 3 days of none(for both of us) when she woke up she was running a fever.. So I did get her into the pedi's office.. which was no easy task for a child who wouldn't put cloths on and I had to force cloths on her(even through they were way to big on her hung like tents on her she was still screaming they were too tight, get them off me they are killing me) she screamed for 2 hours non stop in the office jumping up and down biting and tearing at the cloths, rolling on the floor, standing on chairs screaming at the top of her lungs that they are killing her while trying to rip the cloths in half. That day she tested pos. for strep.. We saw an NP that day.. it took 5 adults to hold down my at the time 8 year old 30 some pound daughter and 1 to pry her mouth open to get the strep swab. I looked at the NP.. and I said.. can you please call her Pedi and tell him about this right away.. this is the stuff I was telling him about that he didn't see when I brought her in.. That night her Pedi called me and told me he had good news and bad news.. Good new he no longer thought it was a conversion disorder, Bad news he thought she had something called PANDAS.. later I found out that when the NP called the Pedi, she told him "this child doesn't need a doctor she needs an exorcist. I think back to those time with my daughter and I can see how this could be us in this same spot. That all was 3 years ago, and with long term antibiotic the girl I just told you about is in school straight A's, on the 5th grade football cheerleading squad, on the volleyball team and plays travel softball. BUT none of this would be true IF SHE DIDN'T GET THE RIGHT TREATMENT.... Psych meds would not have helped. My sons case was not as easy, antibiotics alone was not enough.. and steroids helped but only for a short time.. He had IVIG this summer and is now doing so much better. If I would have listened to the doctors at the Akron Hospital my son would be on Psych meds trying to treat a conversion disorder and tourettes and not a one of those medications would have helped him he would have just kept getting worse and worse.
Elizabeth needs to be returned to her parents so she can get the treatment she needs. BCH You are doing more harm to this poor child who is suffering so much already.

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