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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