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Day 19: Chicago Hospital Locks Down Autistic Patient

Alex1UPDATE 3/9:  Fox Chicago ran a story on this situation and Philly picked up this story, read and watch video here.

Managing Editor's Note:  Loyola Medicine in Chicago, IL Act now! has as its tagline, "We also treat the human spirit." But they forgot the ending, "..like a dog."

Email Ann Dillon in Media Relations with the link to this post.  Tweet them our link @LoyolaHealth.   Share our link on their Loyola Health FB page.

LoyolaMedicine.org

Vice President and CNE, Paula Hindel 708-216-3802
CEO Larry M Goldberg  708-216-3215

By Lisa Goes

Patient Safety Awareness Week, Spotlighting Loyola University Medical Center: A Parent’s Perspective

“I need to tell you Alex’s story.” Dorothy Spourdalakis, Alex’s mom spoke professionally with a deliberateness I was not expecting—considering she has been by Alex’s bedside awaiting proper medical care for his gastrointestinal symptoms, for 19 days.

19 days. 456 hours. 27,360 minutes. 1,641,600 seconds.

This is Alex. 

The irony of this week marking The National Patient Safety Foundation’s “Patient Safety Awareness Week” is not lost on Dorothy. According to her, at 14 years of age, Alex has a diagnosis of severe autism and cognitive impairment. He is non-verbal. In October of 2012, Alex began to suffer neurological events that prevented a healthy sleep cycle. He was awake for many hours at a time. Agitation and aggression ensued as a result of sleep deprivation. During this time, symptoms and behaviors that were indicative of severe gastrointestinal distress developed as well.  A cycle of constipation, diarrhea and formed bowel movements surfaced and became a chronic problem. On February 16th at 5:00 am, with the assistance of police and paramedics, Dorothy took her inconsolable and highly-distressed non-verbal child to Gottlieb Hospital in Melrose Park, Illinois.

Because of Alex’s physical aggression, he was placed in locked restraints. At that time, Dorothy did not know the ER would be their home for the next several days, as Alex lay naked, in locked restraints, suffering bouts of violent vomiting, severe constipation and diarrhea. Neither she nor Alex bathed for the next 13 days while hospital staff and administrators attempted to devise a plan to care for Alex. “He was given Colace for his constipation and sometimes it would take security staff and nurses more than 15 minutes to arrive to help unshackle him so he could use the bathroom,” Dorothy explained. “Alex would scream as best he could when he knew he was going to have a vomiting episode, but security took several minutes to respond so Alex would lay in his own vomit, waiting to be released by a representative of security. He would be wiped down and returned to the same restraints.”

Autism Is Medical (AIM), a support group that helps parents identify the underlying medical issues
associated with the label of autism, was contacted on Sunday, February 24th.  They were enrolled to help the staff at Gottlieb understand Alex’s complex medical profile. According to one of the AIM representatives,  “Clearly, what they are doing isn’t working.” The AIM advocates,(all mothers to children fully recovered from iatrogenic autism), went on to say,  “Currently, this child is being treated with Lorezepam, Oxezepam, Benzatropine, Zyprexa and Ativan.  These drugs do nothing to address the intense gastrointestinal issues he is experiencing, nor do they alleviate his pain.”  Dorothy explained that Alex remains in a highly-agitated state. He was also prescribed Depakote, to which he had an adverse reaction (elevated lipase). In addition to these issues, Alex’s mom explained he has many allergies. Both physicians at Gottlieb and Loyola told her that IgG and IgE food sensitivies were invalid. Dorothy was told by the attending physician to give her son milk at Loyola, not in the ER. When a possible reaction occurred she was told the bed caused his contact dermatitis.

AlexRashes2


Alex was not assigned to a room at Gottleib and was never formally admitted as a patient. He remained in an ER bay during his entire stay at Gottlieb. He was transferred to Loyola University Medical Center on February 28th at 3:00 p.m. after 13 days in the hopes that they could better serve his needs. It was determined that he needed the care of a pediatric gastroenterologist, neurologist and anesthesiologist, and Loyola could provide those services. On Friday, March 1st, a GI (gastrointestinal) consult was ordered. 

Alex and Dorothy were not visited by a gastroenterologist until March 5th, four days after their admission.  The physician took an oral medical history on Alex and expressed that he wasn’t sure why they were doing this procedure, and that Alex would be pushed back for some reason having to do with the pediatric anesthesiologist’s “complicated” schedule, according to Dorothy. In the 15 minutes the gastroenterologist spent in the room with Dorothy and her son, an event that was 17 days in the making, he did not see the need to perform a physical exam on Alex.   

On March 6th, Dorothy met with another gastroenterologist who observed that Alex was indeed in pain. For the first time in 18 days, it was recognized that he was in pain by someone in the hospital system. Dorothy was encouraged. Gastroenterologist number two scheduled the appropriate procedures -- procedures AIM founders believe would have been ordered much sooner for a neurotypical child.

AlexloyolaWithin hours of meeting with the second gastroenterologist, a CNE (Certified Nurse Executive) spoke with Dorothy and asked to meet with her about insurance issues. During the meeting, she was asked to sign the paper attached in the photo (click to enlarge), immediately.  Dorothy was hesitant because, “The form is not printed on Loyola letterhead as is the standard policy for routine hospital documentation.” According to Dorothy, during this meeting the CNE admitted the JACHO (Joint Commission on Accreditation of Healthcare Organizations) required assessments of a restrained child by a physician every four hours to reassess his need to remain in locked restraints had not been met.  Dorothy said the CNE explained that they may "have missed a few." (Read more about ethical restraint practices.)

 The same CNE, who previously had promised a plain-clothes security officer for Alex’s room, stated at this meeting there was some confusion on this issue, and he would not be receiving that additional support because it was against hospital policy.  

This is the stagnant state Alex has been living in for the past 19 days.

19 days. 456 hours. 27,360 minutes. 1,641,600 seconds.

Alex remains in locked restraints awaiting appropriate medical testing and follow-up care. Dorothy is concerned that no one has given her a plan as to what the exact goals are for his healthcare or how they will be achieved. She is concerned about “weaning” him off the restraints as well. No hospital personnel have addressed this with her.  “He has been conditioned to them, now,”  she stated.

AlexRestraint
I asked Dorothy what she wants people to know about what has happened to her son Alex: "I want people to know this is what is happening. They need to know, children with special needs, especially autism, children with cognitive impairments are all at risk for this sort of treatment. All families are at risk. Families who do not speak English, or speak English as a second language are at risk, too.  This is how the system is set up. Elderly people are at risk.  Who is protecting these children and adults? How can we as a society allow this to happen to our weakest?  This is apparently the norm.  Their medical needs are met with medications that do nothing to address their physical illnesses but purposefully make them silent and unable to protest any longer.  Is this all we have to offer our children, our family members, parents and spouses?”  she implored.

The members of AIM confirmed Dorothy’s concerns:  “There is no plan for him. Patients who suffer from disabilities are at risk for abuse and neglect. In a day where patient satisfaction scores determine reimbursement rates, and hospitals are competing for market share, I wonder if this same story would unfold if the patient was admitted for heart disease or elective surgery. Policies and safety measures are already in place in every hospital system and acute care facilities across this nation. Internal regulatory audits for things like restraint use, falls and infections are done routinely. Loyola's website shows pictures of happy patients getting the treatment they need. It highlights partnerships with physicians, a team approach for high-risk pregnancies, their cardiology program -- one of the leading in the nation, and the benefit of second opinions. Apparently that type of care isn't available to children with an autism disability. We entrust our doctors and healthcare institutions to take care of our children who can't speak for themselves and can't advocate for their own safety. Where is the picture of Alex, locked in restraints, covered in a rash on their website?  Please call them and let them know the entire autism community is watching.”

LoyolaMedicine.org

Contact Vice President and CNE, Paula Hindel at 708-216-3802 to express your concerns for Alex’s care.    

Let CEO, Larry M Goldberg know what is happening to voiceless children in Loyola’s healthcare system.  708-216-3215

Lisa Joyce Goes is a free-lance essayist, Contributing Editor for Age of Autism, and Co-Founder of The Thinking Moms’ Revolution.

Comments

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Brittanyrichardsonsmom@gmail.com

Call their senator as well. Senator Richard Durbin. http://www.durbin.senate.gov/public/index.cfm/contact

Laura Hayes

Also, I just called Dr. Usman's office, per the information in the comments that she is located nearby in Naperville, and have alerted her office staff to this situation. Perhaps she will be able to help.

Kim for Shavonne

Shavonne, I'm sorry that happens to you. Thanks for commenting at AofA. Kim, Managing Editor

Jayne

This is so heartbreaking! Someone needs to advocate for both this mother and her son. Everyone needs to forward this article to people they know.

Danielle

This is so heart breaking.I called they heard 2 secs. And hung up on me!! Horrible

jackie

Please note this article that appeared in the Official Journal of American Acadamy of Pediatrics. A team was put together in 2008 to address the issue of GI problems in the autistic child. The end result was that this population was as likely as any to experience GI problems, but would have a hard time expressing what their symptoms are. Pediatricians where advised to work up patients independent of an autism diagnosis. I truely believe that we need to start holding these physicans accountable and making an expamle of them by taking legal action. They need to be sued for malpractice....failure to diagnose and failure to treat. When this happens over and over and the evidence is there that these childrend are sick...it WILL become the new standard of practice to work these kids up and treat them.
http://pediatrics.aappublications.org/content/125/Supplement_1/S1.full
jackie in SF

Shavonne B

I may have physical disabilities but I'm coherent and verbal my doctors have always listen to me because they know my history. However I'm always aggravated that when I have to go to the ER, despite knowing exactly whats wrong doctors act like I am to stupid to know my own health and my needs. If I was treated as poorly as this boy and his mother were I would be in an uproar and start suing, once this nightmare was over.

Marie Duggan

I am the parent of a 22 year old son with autism and I literally started to shake and feel sick after reading and seeing these pictures of Alex! OMG! Please -- this is an absolute outrage!
That poor kid...I can't even type right now I am such a mess after seeing this.

Pat

I knew of a time we(care givers) took a autism client to emergency to have a cut above his eye stiched as he fell. Well these nurses and a doctor gave this young man nothing to numb the area about to be stiched. Strapped him to a guerney and stiched the area. Could and still can't believe the treatment for this client! :( :(

Brenda

Is it at all possible for the mother to remove her child, even if AMA, and transfer him to another hospital?

diane neuman

I have been frustrated by the lack of care for our daughter, but nothing like this has ever happened likely because she is neurotypical. We call it "pass the bucket". At this point in her care we found most medical specialists were unwilling to acknowledge her unique needs when ordering tests or treatments- when we tried to advocate we were blown off as nuts or eccentrics. After leaving their care our daughter has done better by a family Dr, and Dr. Wikipedia- our medical system is failing as quickly as our public schools. They fear failure and refuse to acknowledge their part in the failure.
As for this young man, criminal charges should be made against the hospitals. if any Parent in the USA treated their child this way in our own homes, CPS would sweep in and remove our child and charge us with neglect or abuse- as it should be. Why are Drs. allowed to abuse our children? Or the school systems?

Sara Murdock

its horribly wrong and unacceptable makes me sick but ur guardian take him out to new hosp. and sue them for maltreatment

Laura Hayes

Just called the CEO's office. Hope the surge of calls will get this boy some humane treatment and help. Told them their doctors will not be able to help this boy, that they must call for some help from some doctors who have actually made it their business to help these/our children.

jackie

I am a mother and an RN. My son was denied medical care that we went ahead and paid out of pocket for. He would lean over the tables and chairs in pain. I was told by professionals how "cute" it was. When we got him scoped he had a duodenal ulcer...at age three. He was in horrible pain.

I have called expressing my disgust as well. We must stand behind this mother and stand up for Alex. I know all too well what bullies doctors can be and they refuse to take responsability. they like to put any wrong doing on anyone else before they take accountability.
Jackie in San Francisco

Kathy Blanco

This somewhat happened to my son, to a lesser degree. He was having a raging pandas outbreak, with not sleeping, and and throwing things at family members, he was sick, not twisted. I entertained the thought of Zyprexia and the like, but refused when I read he had pandas, had him tested by Dr Cunningham, resulting in a confirmation of my "crazy ideas". A round of many antibiotics, and antivirals and gut support helped him to come out of this abyss.....had I not been a well informed, researched THINKING mom, I would have lost my child. And let's talk "child"....we are talking a thirty year old MAN....who has PANDAS....yep.....

Maria Hrabowski

I have 21 years old with autism, who at different periods of his time went through attacks of digestive track pains. At that time he seemed to have tantrums, was aggressive and self abusing. As he grew older, he stopped being aggressive toward others but when in pain he hits himself so hard and screams terribly. In the past, just (at the advise of GI doctor) giving him metamucil crackers for gases, or later myralax for constipation, and changing with difficulties diet to include more fiber as well as avoiding any food with barbecue seasoning helped. Yet, hte first reaction of medical stuff (nurses and doctors) was that my son screamed because of autism. I said NO< HE SCREAMS BECAUSE HE IS IN PAIN. THE AUTISM IS NOT A REASON FOR HIS SCREAMING. THE AUTISM IS A REASON WHY HE CANNOT EXPLAIN TO DOCTORS HIS PAIN.
Not once I heard horror stories about doctors ignoring severe condition resulting in pain because they dismissed self abusing behavior, aggression, tantrum as "AUTISM". The child whose mother asked for 3 hours to do ultrasound, which later discover hernia on a verge of bursting, was ignored as the one with autism. For my son, the first reaction is _Autism-. Pain is very abstract concept for my son, and he still cannot understand that something attacks him from inside, and he cannot reliably answer any question about pain, although he can multiply and divide. I am happy I don't live in Chicago any more but in Boston. As I remember there was LOYOLA UNiversity, so that must be a TEACHING hospital. What are those doctor taught there? Being inhuman, being a monster, being greedy, being cruel? How many interns pr last year students witnessed this treatment and did not react? It is all beyond me. I see my own son in Alex.

Kim Morton

I just called the office and told them how disgusting
this is. No neurotypical child would be treated this way and
the entire autism community is watching. I said I saw pictures
of this child in restraints and why aren't these pictures posted on their website?
I said that at BEST they should expect a big fat lawsuit and these
pictures and story of this little boy are being shared with the public and people are outraged.
Can we get the news to cover this story? It needs to be ASAP. Does anyone have any contacts????

KD

Feel free to let the Joint Commission know that patient safety is being violated...

http://www.jointcommission.org/report_a_complaint.aspx

Valerie Boergesson

This makes me physically ill and I am shaking just reading it. I have just written, facebooked, etc and will call when I calm down a little. I have been in this situation with my own son, in a hospital violent with GI pain and colitis,but we had a better outcome, but it took me cornering the head of the GI dept on an elevator and yelling and embarassing the hell out of her to get morphine and IV's. We got out of there asap, and went directly to Dr Krigman who scoped him and his gut was a mess. I feel so badly for this child and his family, I am absolutely sick over this, everyone, please call, tweet, facebook, etc. this is criminal!!!!!!!

Linda M. Amity

Also, Dr. Anju Usman is right there in Naperville, IL - can the Mom reach out to see if she could help Alex?

Linda M. Amity

Praying for this precious young man and his Mother. To the family, I say, is there any way you can schedule Dr. Arthur Krigsman, or Dr. Elizabeth Mumper, or Dr. Tim Buie, (any of the Ped. G.I.'s who KNOW "autism"'s GI health needs), to come and collab/consult with the Loyola team?

kasey

Any rescue angels? He needs a DAN dr asap!!!!! Anyone who can get iv gluathione, magnesium, vanco, nystatin, dyflucan, enzymes, probiotics,etc to this young man???? He could benefit from the RIGHT seizure medication and the RIGHT allergy meds. I'm certain the gut issues r causing the neuro issues??? He needs a dan dr to come there!!!

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