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.
Friday, November 02, 2012
Thursday, October 11, 2012
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.
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
** MEDIA ADVISORY **
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: http://www.fightingpandas1.blogspot.com/
The PANDAS Resource Network represents 4,000 families affected by this little known disorder.
Lynn M. Johnson
PANDAS Resource Network
Wednesday, October 10, 2012
Posted by KC at 4:11 PM
Tuesday, October 09, 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.
Posted by KC at 10:01 PM
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)
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
Friday, October 05, 2012
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.
Posted by KC at 12:50 AM
Thursday, October 04, 2012
This is just so wrong and makes me sick to think about. :( Here is more news on the story I posted yesterday about the girl with PANDAS taken fro her parents, if you didn't get to read it you can do so HERE ... this is an email I got from on of the PANDAS support groups I'm part of. Beth Maloney is Lawyer for the family, also a PANDAS mother and author of the book Saving Sammy
Here is the email.
For those of you who don't get Beth Maloney's emails, but want to know what you can do to help in the Boston case, this is from Beth. I think these people need national media exposure - NOW. I just cannot fathom that they have to wait 3 weeks for another hearing.
Wednesday, October 03, 2012
This story about this little girl has been all over the facebook and PANDAS world today and it is breaking my heart.
Here is a blog that can tell the story.. read it 1st.
I am so sick over this.. I have been going from wanting to jump on a plane and punch some...
WTHeck.. magic pills.. they Rx him Risperdal that is the pill the doctor told my 12 year old he had to take and then "believe really believe it would work" At this point i knew I was getting nowhere so I took the Rx and never filled it just so they would let him go home.
I guess.. this all just is eating at me... I can not imagen how scared any child would be being taken away from there parents.. but having PANDAS children and knowing and seeing 1st hand there fears and thoughts and how extream the anxeity is.. I feel like my heart is being tore in two for this little girl.. I wish there was something I could do to help and to keep this from ever
My poor poor blog that I never remember to write in anymore.. I'm sorry.. and I am going to make a promise to log into at least once a day and write something even if it's just "no time to post today" So for today's post.
Little Man and Sweet Pea are watching home movies.. they were watching one of Sweet Pea's 2nd birthday and I'm helping her open gifts and I was smiling and laughing in it.. Little Man turns around and gives me a upset looks and said "mom you were happy when I wasn't born??" as I'm LOL I said "No dear I didn't find happiness until the doctor placed you in my arms"(ha yeah I'm a smart butt even to my 7 year old..lol they stand no chance) He didn't pick up on this and said all sad like "yes you were see you were smiling.. without me" hahahahahahaha.. thank you Little Man for pulling me out of my ticked off mood and back to a Happy mommy because my youngest baby was born :)
I'll explain my ticked off mood in my next blog posting.
Friday, July 13, 2012
Sorry I have been away for so long.. there is so SOOOOOO muh I need to bring you all up to date on, but I just don't have the time to do that right now...
So for now I'm just jumping in and giving you a recap of my week..
Sunday July 8, 12 Princess's travel softball team took 2nd in the tournament they were playing in that weekend.
Wed. July 11, 12 in the evening I took the kids and friends to the drive-in to watch Brave and The advengers.
Thursday July 12, 12 I spent the day packing and planning for a trip to Detroit MI to the childrens Hospital.. something you all have missed since I have been gone is The Mr Man has been really sick. He has the same immune disorder as Sweet Pea(which I mentioned before I fell out of the blogging world) and he has been sick since Sept 2011 and hasn't been able to attend school since Oct 2011..
Friday July 13, 2012 was the big trip to MI for Mr Man to have high dose IVIG for his PANDAS(the immune disorder both Sweet Pea and Mr Man has and we fear Little Man has it also) I'll come back and explane more about what PANDAS and IVIG is later.. or you can visit my other blog Sweet Pea's journey with PANDAS.. I have to go take care of Little Man who has to be back in the hospital in the morning for the 2nd round of IVIG...
so how was that for a quick jumping in update..