Diseases/Conditions

Hospital Locks Down Autistic Boy for 19 Days of Agony

March 8, 2013 by admin in Pharmaceuticals with 38 Comments

‘The use of antipsychotic, antiepileptic, and mood stabilizing medication may cause one or more side effects that will most likely require additional care management.’ So said the document Alex’s parents were told to sign—and it wasn’t on the hospital’s letterhead! They’ve strapped him down naked for 19 days & want to coerce his parents into this agreement. Please act now to save him!

Update: It’s over. Alex’s mother had no choice. She signed to avoid losing contact with her son. So the doctors will have their way – to drug Alex into oblivion. As if they actually care about him. They’ve made their point clear: Question their authority and you lose your child … and your child loses you.

This medical system created Alex and millions more. They’ve profited from their iatrogenics mightily, but when it comes down to it, all they really want to do is make sure that no one is even able to whimper after they’ve raked in their profits.

Will your child be next?

EMERGENCY UPDATE!! (Tuesday, 12 March 2013)

Alex’s mother is meeting with hospital officials today. She has been informed that she must sign and agree to everything they want to do to her son, or he will be removed from her custody and they will do it anyway. This is not just about Alex. This is about the future of your own right to refuse to allow a hospital or doctor to drug your child into oblivion. Speak out now!

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

by Lisa Goes

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

Alex in Restraints

“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 16^th 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.”

Alex’s Rash From This Treatment

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 Lorazepam, 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.

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.

Within 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 above (click image 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’s Wrist Injury from Restraints

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.

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.

Tagged alex hospital, alex hospital mistreatment, autism, autism iatrogenic, autism treatment, boy in pain locked down for 19 days, conventional medicine, hospital autism, hospital iatrogenic treatment, hospital mistreatment, modern medicine, pharmaceutical drugs, pharmaceuticals

http://www.facebook.com/heavenshalo1 Heaven’s Halo

REVOKE YOUR consent to treat and take him to someone else! This is horriffic neglect by this health care system. This child should be recieving some type of treatment, this is just ridiculous and all involved should be FIRED!!! Hold those people accountable they have a DUTY TO ACT and leaving this child and this type of treatment is not proper for Christ sakes at least allow him a few showers this is imprisonment! I would not take that S*** from these people, as the mother, you have the rights, and so does he!
http://www.facebook.com/heavenshalo1 Heaven’s Halo

I would have to say contact the State Department that oversees medical services also.
http://www.facebook.com/mitzi.f.evans Mitzi Fowler Evans

Please get this child to autism specialist, Dr. Kurt Woeller, http://drwoeller.com/ who treats the underlying causes of autism and reverses the symptoms.
- Shakamama
  
  True autism is not reversible, neither are the symptoms. However, the symptoms are often treatable.
http://www.facebook.com/carolyn.gammicchia Carolyn Gammicchia

Thank you for writing this piece. This young man needs appropriate medical intervention and hits life depends on it. My brother died from this type of inappropriate treatment in 1999 when his medical symptoms went unaddressed. He too had AS and epilepsy and did not obtain the medical care needed. I will pray that Alex does and his family is provided the support they need as well.
Lesle Nufer

Loyola is the best hospital around!! I have an autistic son that goes there and they treat him great. Maybe its the mom that can’t handle him and is looking for sympathy.
If she has all these complaints. ……..LEAVE!!!!!
WHY ARE U STILL THERE???!!!!
- / Heidi Stevenson
  
  Security staff defined as treatment? That’s as disgusting a statement as can possibly be.
  
  By the way, in her follow-up on Shane, Lisa Goes states that, and explains what it consists of: http://tinyurl.com/cj6hn3n
  
  She also describes the “care” he’s getting.
- http://www.facebook.com/karen.seraphine Karen Ossler Seraphine
  
  Wow. Attacking the parent? Do you know the whole story, then? I know I don’t. Please, share. I would think that as a fellow-parent of a child with autism, you’d be more inclined to SUPPORT Alex and his family, rather than judge his mom without knowing the whole story.
- AS
  
  And if the next time you are there something similar happened to your child, it would be your fault right? You should do something about the hatred in your heart and come back when you are ready to have a level head and an open heart.
- Abby Doodle
  
  The hospital kidnapped the child and overrode parents rights. Duh. get caught up fool.
  - http://www.facebook.com/birdie1120 Rebecca Smith
    
    This woman and anyone attacks the mom look at the pic of the restraint. It has a lock on it. You should think before talking. What would you do if it was on and no key for you? I would be pissed, but the disadvantage is they forced this and no one should judge before knowing the truth. What can we do? Let us hope the naysayers don’t have this happen to them.
- http://www.facebook.com/profile.php?id=721312553 Mandy Winter
  
  Regardless of the mother’s presence, is it really ok to treat a human being this way? It’s not the mother who has shackled him to the bed and leaves him naked in his own vomit and excrement, drugged up to the eyeballs to control him instead of showing him understanding and support.
- Anonymous
  
  Okay, fine, I’ll answer your question so you can better understand. Maybe the same situation isn’t happening to you, but you evidently don’t understand half of what goes on behind the locked doors of mental hospitals. The places are set up as a hierarchy of power. You’re child- whoever he is- is on the lowest place in that totum pole. He has no power, no control, no way to communicate decisions. In these places, they tell you to speak to them, and then they use your words to mark you insane. It is immoral, unjust, unrighteous, but no one has enough power to protest. The method they use there is fear. If they spark enough fear in you, then you’ll be to afraid to go back to your old “habits,” and thus you will return as a more “socially acceptable” model. As for your question: “why are you still there?”, the answer is this: there is no way to escape, no way to have any control over the situation, no way to fight against people who so evidently have much more power than you. What’s more, you are barred- both physically and mentally- from doing anything to save yourself or the person you love. Physically, they lock all doors inside the unit. They only let you in if they want to let you in. And they only let you out if they want to let you out. No matter what you do to protest, you have no power, no say, no rights. And a human without rights is nothing. A human without rights can only submit to whoever has taken them, and hope that someday those people will give you those rights back.
  - / Heidi Stevenson
    
    In this particular instance, the young man wasn’t locked up in a psychiatric hospital. However, the fact that this can go on in plain sight in a regular facility clarifies just how horrific the mental ones are.
Pingback: Autistic Boy's Case Worsens: 22 Days in Pain & No TreatmentGaia Health
G Martinez

He is a child with Autism not a wild animal…. what is wrong with people now a days??
Does he not have rights???
- http://www.facebook.com/michelin.anderson Michelin Anderson
  
  None of us have rights – civil or human when it comes to medical care. I refused to admit myself to a hospital which I went to for diagnoses and meds only. I am deaf – LDA – they sent my son away telling him he could pick me up in AM from ER. He was my interpreter. Doctor said I could lip read ??? It got very ugly because I am very loud when crossed – they just moved me to an empty hallway and gave me an injection of Fentanyl. My point is – this poor child has his parents asking for competent care – maybe we don’t have all the facts – but, contacting TJC will do no good. They don’t do anything – nor does HHS/CMS. My heart goes out to parents and child – something has turned quite evil in so many instances of medical care. The stress this family is going through must be horrific. Call the CEO/COO offices.
http://www.facebook.com/pamela.nation.7 Pamela Nation

I called both phone numbers to speak to someone about the treatment of Alex. One voice box is full and the other was answered by a secretary who passed me on to Patient Relations Department. The Patient Relations Dept only took my name and phone number to give to an administrator that “may call back tomorrow sometime because he/she is in a meeting at this time”. I asked why he was not properly being treated as any other patient would be and why there was not someone assigned to stand by to undo the restraints in case on an emergency such as Alex vomiting or needing to go to the rest room. The lady’s response was she “couldn’t answer these questions and she would give my name and phone number to the administrator who would return my call”. Yeah right when???? When Alex is dead?
millie hernandez

If the mother was so concerned about his safety, why is this child still there in that hospital?! I have a disabled child and if I was going through this, I would get the hell out!! What is wrong with this mother!!! If a child was being treated this way as described..why wasnt child protective services involved. Two sides too every story.
If its that bad…WHY ARE YOU STILL THERE???
- / Heidi Stevenson
  
  If she’d done that, she’s have lost custody immediately – and if she’d run, they’d have gone after her – and then she’d have lost custody.
  
  She did EVERYTHING RIGHT. She behaved as the hospital wished. But they still forced her to accept their will – to drug her son into oblivion – or lose custody, which would mean even the ability to stay with him. So he would also lose her.
  
  By the way, the hospital used the threat of calling child services against the mother. The reality is that child services don’t work for the family or the benefit of the child. Here’s a story out of Canada: /gaia-blog/2011-11-05/ayn-stolen-from-her-family-by-canadian-government-wants-to-come-home/ After a year and a half, this girl may be coming home – and that’s an unusual result. During the interim, she’s been drugged every day with antipsychotics.
  - Lesle Nufer
    
    Would you leave your disabled child in this facility? I don’t think so. So if the mother is still at this hospital, they must be doing something right. Any responsible loving parent wouldn’t continue to stay. And I truly believe that.
http://www.facebook.com/rofiste Roxie Fiste

This is shocking but not surprising as many medical doctors, hospitals, and specialists have no traing in the areas of Autism, vaccine injury, environmental illnesses. I do not understand the callousness of this hospital staff, their attitude of cruelty, negligence, and their determination to HARM this boy! After watching my wn child being mistreated in a hospital we took her home. She now is being treated by an alternative specialist for her physical issues – and is he is treated with respect! Take your son away from this monsterous place!
sharinglifewautism

i am just about broken by this story… i have 2 little boys and we live this lifestyle everyday… this could easily be my oldest boy… who is severe non verbal and very large for his age with all the very same ailments as this boy… i have written CNN in the hopes that this story receives national attention and this family most importantly this child receives the help he deserves humanely just like any other child taken to the hospital for help with medical issues…. my heart goes out to this family and i pray for them that they receive help and this child is released to his family and home.
- Lesle Nufer
  
  Why would any parent leave a child in this facility, if all this was going on. I would really like to know.
  - / Heidi Stevenson
    
    Lack of options.
    A desperately ill child who couldn’t be moved.
    Lack of funds.
    Knowing that doing so would result in children’s services being called and losing custody.
    
    How many reasons do you need?
  - Abby Doodle
    
    The hospital terminated the parents rights what do you think. This is happen all over US.
http://www.facebook.com/rebecca.gay Doula Rebecca Gay

I am utterly horrified and despondent after reading this article. I have a son with Aspergers. He has had violent outbursts in the past. The thought that someone could put my beloved child in restraints, take his clothing from him, and try to mute his intelligent, funny, albeit different voice is just beyond my comprehension. I’m crying and I can’t help it….

As a birth worker I see women mistreated, coerced, manipulated, lied to, and forced into interventions and medical procedures ALL the time; they threatened with having their children taken away if they do not agree to do whatever the “all knowing Doctor” tells them to do.

Women, particularly Mothers, are being taught NOT to follow their intuition and are being bullied in some of the most psychologically damaging ways you could ever dream. I am so sick of it… so sad over it…. We have GOT to stand up for each other or our daughters are going to suffer in a big way.

To the Mother of Alex: you are in my prayers and my thoughts. I apologize on behalf of the system that has broken your trust and further harmed your son. My heart is grieved for your son and you. In the morning will be making a phone call to Vice President and CNE, Paula Hindel at 708-216-3802, to express my concerns for Alex’s care.
- / Heidi Stevenson
  
  Thank you for your testament – and the documentation that this sort of thing begins at birth.
Abby Doodle

Note if this child had a reaction to Depakoate the damn doctors need to read the black box warning put on there by the FDA. Reactions to Depakoate can be frontline indicators that the child has a urea cycle disorder the most common being OTC. Have the doctors run an ammonia test. The child probably is having spastic colon which is common with OTC. You treat with benyln to stop the spasms not with what they are doing. I believe this child has been misdiagnosed and may have a urea cycle disorder along with the autism. Many of the symptoms are treated differently under urea cycle disorder. I really want to write that whom ever the doctor was that knew he had the reaction on the depakoate and did not test for UCDs is the biggest DF in the world. The FDA requires this now when there are reactions!!! It happened to me.
mychildren

that is disgusting i have a special needs son n a autistic brother i am sick to fink that a child just like any other is being treated differently. i hope you n ur family survive that horrible ordeal.
http://www.facebook.com/profile.php?id=721312553 Mandy Winter

This story needs to get to the international press immediately. They are doping a young man up because he is distressed, but wouldn’t you be if you had gastroenteritis and was shackled naked to a bed, not to mention suffering allergic reactions to all kinds of stuff? Where are the autism activists who claim to fight for the rights of autistic people? This is a hideous situation which should never be allowed to happen.
Alexia

If this young man was in the UK I would happily work with him and place him in one of my supported living homes. We would have him out in the community and living as independent and “normal” a life as possible. We don’t rely on medication only use minimal amounts as possible as a tool to help them learn to manage their own anxieties. I cannot believe the authorities have allowed this to happen. It sickens me when there are so many good facilities out there who make the time to understand the individual and their autism.
Denielle Sartori

How dare they treat a child that way, It doesn’t matter how old, or his disability. This poor boy/man. I am stuck with a really sick feeling in my stomach. My tears are flowing with out any control. I am heart broken to think anyone could do this. People who break the law, and the people whom committed September 11th Travesty, were better treated than this poor innocent boy. How dare they, shame on all of you, for treating another human in such a way. May god deal you 10 fold. of what you have dealt out… Shame Shame Shame. Never in my 48 years of living have I heard of someone treating a person like an animal. Actually no, Animals even have rights and if someone was to do this to them they would go to jail….. What is wrong with our human race… I am guttered….
Pingback: Tired Moms, Ignored Worlds: My Time with Alex & His Mom | Gaia HealthGaia Health
Shakamama

I could not read the whole article, it was too upsetting. I did read enough to know that my son has similar difficulties with regard to diarrhea and constipation (and vomiting and skin irritation) when exposed to dairy (diarrhea and constipation), soy (diarrhea, constipation, vomiting, skin irritation), perfumes that are in soap (skin irritation), clothes that have been bleached (skin irritation), and latex (skin irritation). He was also allergic to wheat at one time. The food sensitivity is an A-typical food allergy and is called allergic entero-colitis. If not addressed can develop into full blown colitis.
Dee

Forget calling the stupid CEO!!! I have a niece who is autistic. And if crap like this ever happens to her, I would get a lawyer for my sister and jump on a lawsuit right away because I DON’T PLAY!!!!!
Anonymous

In all honesty, one lawsuit will do nothing to make a difference in the immoralities of this “practice.” The whole idea of mental hospitals is inhumane and repulsive, but unfortunately, once people are actually let out of them, they are much to afraid to protest. I think that something needs to be done to address these immoralities to the government- something big. These places are 99 percent more “prison” than they are “hospital.” And why? Children have not committed crime, and yet they are treated like that. Honest to god, I don’t think the whole mental health “business” is there to help people. I also don’t think it’s there to make much of a profit. What I do think, however, is that the mental health business is there because it gives the people involved a sense of power and control. And that’s frightening. Because once your enveloped by such a thing, there IS no escape.
- / Heidi Stevenson
  
  I could not agree more. The psychiatric profession is guilty of some of the worst criminal offense imaginable. As you note, once caught up in it, there may be no way out.