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.

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

Thanks to Athanasius Kircher who read one of my earlier post about Elizabeth Wray over at my Mindlesschatterofabusymom blog.. 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

Tuesday, October 9, 2012

Hoping this will help them see the light.

I posted this today over at the Boston Children's Hospital Facebook Page.
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

Thursday, October 4, 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.

This is just so WRONG.

Yesterday on my mindless chatter of a busy mom blog, I posted about a little girl with PANDAS whose family took her to Boston Children's hospital for care, was told PANDAS was not real and then the Hospital called CPS on the parents and the girl is now in state custody..  Today I gave an update with more of the story.  It hit me at that time that I should be posting this over on this blog which is my PANDAS blog.    So here is what I wrote today.

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.

Things are not good with Elizabeth. She remains at Boston Children's Hospital. BCH still refuses to recognize that its "treatment" is a complete failure. She continues to decline. She can no longer walk. She barely speaks. Earlier this evening, I listened to her screaming and wailing in the background from her bed as her brokenhearted father tried to bring me up to date.

There will be a piece in the Boston Globe Magazine about PANDAS within the next three weeks. They contacted me directly as a result of your efforts...someone posted or blogged regarding my earlier emails and that is how the Globe found the story and me. Based on my interview today, which lasted for over an hour, I expect this situation will receive a great deal of attention. Keep posting. Keep blogging. It makes a difference.

I want to be 100% clear that these parents did NOTHING wrong. They took the exact same steps that you or I would have taken to help our children. This could have happened to any one of us. They are living every parent's nightmare...losing custody of their child for trying to do the right thing. And these parents need your help.

The Wrays have given me written permission to share the following information with all of you and the media.

Briefly, Elizabeth was diagnosed with PANDAS by two doctors in NY February 2012. It first showed up as trouble eating. Blood work showed mycoplasma and Lyme. With antibiotic treatment she improved and did well over the summer. But she took a dive in early September. Her parents took her to a hospital near them, but the hospital felt she needed more than it could offer. There were two possibilities suggested: Rochester and Boston Children's. The parents wanted her to go to the first place that had a bed; that was at Boston Children's so she went there. BCH immediately decided that Elizabeth's issues were all psychiatric and not medical, not PANDAS. They have refused to introduce antibiotics. And although she was on a gluten & dairy free diet, BCH immediately introduced both. She has had a spinal tap, EKG, EEG, MRI and many, many other tests. The parents were never given any test results. They were told there were "irregularities" in some tests, but they have not been informed what those irregularities are so they still have no idea. Last Thursday and Friday, the hospital told Jay that Elizabeth was cleared to transfer. He was actively working with Dr. Geller, Dr. Jenike, the OCD Foundation and Rogers Hospital to figure out where would be best for Elizabeth to go. As far as Jay knew, BCH was on board and helping him figure this out. Then on Monday evening at about 5:30 pm he was told to be at Court the next morning when the State would attempt to take custody based on allegations made by BCH. We were in Court Tuesday morning.

The State has been placed in charge of Elizabeth’s care (because it has custody), but the Judge specifically instructed that she may not be moved to the hospital's locked psych unit. I do not fault the Judge for his decision on temporary custody. It's hard to explain in a few sentences... but when a Judge is confronted with the kind of accusations that were leveled against the Wrays, it would have been very difficult for him to simply dismiss the petition (although I tried to get him to do that). He heard me though, and he protected her as much as he felt that he could - given the circumstances - by specifying that she should not be moved pending his final decision. We are scheduled to go back to court on October 23rd. Her parents are in agony knowing that she may suffer for another three weeks at BCH.

Below is the list of the names I was given by the State of those at BCH who spoke with Child Protective Services about having the State of Massachusetts take custody of Elizabeth away from her parents. I have provided as much contact information as possible. Call them. Email them. Make them understand that there are thousands of parents standing behind the Wrays. You may want to begin by sending to this email which is a general for the hospital but I want you to do more

I want you to call the hospital and ask for these people. I want you to leave voicemails if you don't reach them. They need to know that this movement is only going to grow. Will you do that for us? The general number at the hospital is 617-355-6000. I want the switchboard jammed. Begin every call with “I’m calling about Elizabeth Wray. Please connect me to ...” I want your voices to be so strong and so many that - maybe - then they’ll begin to get it. I want them to know that parents are not longer going to bring their children to BCH. And I want them to know that they cannot hide behind the cloak of the State.

As far as emails, from the few that I know it appears that the pattern is

Here are the specific people I was told that the State spoke with:
Dr. Othman Mohammad
Dr. Simona Bigourno
Dr. Gary Gosselin fax 617-730-0917
Dr. Lydia Shrier 617-355-7181
Elizabeth Holleran, child abuse social worker
Deb Sorentino, child protection team
Ellen Rothstein, Esq. Associate General Counsel

Others to contact would be:
James Mandell, Chief Executive Officer
Sandra Fenwick, President & Chief Operating Officer
Stuart Novick, General Counsel 617-355-4937

This is a link to the entire leadership team

Many of you have asked if you can help with a donation. Jay wants to be clear that he is, "not the type to ask for money," but if you want to help he will gratefully accept. He is the family breadwinner and is presently on medical leave from his job where he has worked for the same employer in customer service for fifteen years. His family home is more than five hours from Boston. His family has living expenses in Boston, a huge liability for all the "co-pays" that will be charged for hospital stay, legal fees, expenses at home to manage, and no end in sight. He asks that checks be made to “Beth Maloney Esq. Trust Account” and indicate "for Elizabeth Wray" on the check. The mailing address is Beth Maloney, Esq., P.O. Box 468, Kennebunkport, ME 04046

I wish I could write more. I am so exhausted that can only imagine how the family feels. I keep picturing Sammy in that hospital bed, unable to walk, screaming as they try to force food down his throat.

Be our voice.


Tuesday, July 10, 2012

been so long Update

It has been forever since i wrote on any of my blogs..  But this would be the week for me to update here at the PANDAS blog. 
Things with Sweet Pea are ok.  Not 100% but what has become the norm.  She goes up and down depending on what her immune system is doing..  Mostly she is good, but she has little flare up of PANDAS symptoms every time she is exposed to anything.   She is still on daily antibiotics 250 mg of Keeflex once in the morning and  once at night..  But she is living a normal life for the most part.  she will be entering the 5th grade in the fall and made the 5th grade football cheer leading.  She is still playing softball and Volleyball and just having fun.. today she is having a mild PANDAS flare with alot of crying and moodiness..  She spent last week with my parents and my sister and all her cousins.. and I think my nice might have been sick.. because Sweet Pea has been having mild flares every day since being home. 

BUT now for the big news which i haven't blogged about..  Mr Man.. our 12 year old has PANDAS Also.   His is really bad.  He has been dealing with it for the last 10 months.   it came on after having his 12 year vaccines.. a few weeks later he got sick.  I thought it was strep because his throat was killing her he ran a super high fever and Because Sweet Pea was reacting badly to it.  Got him into the doctors the 1st day of the fever.. They did a rapid strep it came back neg they didn't treat him just sent us home calling it a virus.  He was sick for the whole week with the fever and just feeling awful with his throat killing him..  Two weeks later like over night.. He was having major fears and anxieties and a few days after that he started ticking started with eye blinking and head turning ticks..  I got him into the doctors thinking it was PANDAS but they wanted to rule  out other things because he was in football at the time and had taken some helmet to helmet hits..  the day of his EEG his ticks became so much worse and he started running a fever.  Got him right back to the doctors and that day he tested Pos for strep...  you think with me already having a PANDAS child and Mr Man having PANDAS symptoms and Strep at the same time this would be a no brainer for the doctors but that isn't the case... they wouldn't call it PANDAS.   Long LONG story short it took us 3 months and Mr Man getting worse for them to start treating him with antibiotics and steroids.. which helped alot..  didn't get him back to normal though..  by December 2011 he couldn't sit up he couldn't walk, he laid around flopping around like a fish out of water.. that is when they started treating PANDAS...  it got him to walking playing, back to living but at a different level then he was...  He still had anxiety and OCD fear issues, just not as  bad as they were, he still had none stop movements and tics.. just Not as bad as they were..   they would get him Alot better then he would be exposed to something and they would get worse again.. 
At this point in time.. he is left with intrusive thoughts and fears, tremors in his hands and his head jerks backward every so many mins..  He hasn't been able to attend school since oct 2011 and is on home bound schooling with a tutor even though the summer since Oct- Jan he was unable to do that, he is doing summer school so he can move on to the next grade with his class.

AT this point in time.. the doctors feel he needs IVIG..  and He will be having that this Friday and Saturday  July 13 and 14, 2012..

I will try to remember to keep the blog updated with how this goes.. and also keep updating on Sweet Pea as well.

That is 2 of my 4 kids who have dx for PANDAS and we feel that our youngest Little Man also has PANDAS.. He gets mild PANDAS symptoms every time he is sick, but since he hasn't had anything Major the doctors won't listen to me(well the doctors here around us) the PANDAS experts I'm working with in NJ(Dr T) thinks I'm right but doesn't feel he needs treatment for it yet.. I just need to watch him and get him to the doctors right away and get him on antibiotics at the 1st sign of him being sick. 

So that is where we are at this time on this journey into the world of PANDAS.