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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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Hm. Society will once again open its eyes on medical practice but we're still not there yet. However, I'd imagine that the Gastroenterologist in Naperville, IL can help you to the best of his abilities in these current times. It's the confidence, skill and the experience that you can trust. (http://www.mechealth.com/)

I have just called that hospital and wrote them a comment on their web page. And believe me it wasn't nice. I am good mightn (southern talk) to call the local news station, if it already hasn't been done.

I hope they sue the &%#( out of them! What if someone did this to THEIR child?!?! THey wouldn't like that! What are the LEGAL reasons for doing this to that boy? Have they said? The )%_#($ bunch of scum bags. I'm going to write to them and tell them that too.

I don't know what world Cookie is living in. One obvious reason people end up not even trying is the lack of support offered by the medical profession, schools, social support services. And of course if it doesn't immediately go well, or it is just too difficult, they can turn on you. Even in some cases Munchausen type accusations can fly. Of course, it is deplorable if you get turned on by your own side as well. We really don't need this.

And I will agree with the fact that biomed is not a cure all as well. That is what we have come to as our children are so ill. We are seeing children with more complications than ever. We do need the help from mainstream med to stop the very serious disease process in some cases so our children can begin to heal. Unfortunately, as we see in the case with Alex, mainstream med refuses to take medical concerns for our children seriously.
Jackie

You should go back and re-read the accounts of what is going on. They have asked for a special diet due to allergies he has and it has been refused.

You are correct when you say something is wrong, something is wrong when adults, regardless of their job training/education, can day after day ignore the treatment of another human being and allow that person to be treated worse than an animal.

You are correct, biomed is not a panacea and comes with no guarantees - thanks for pointing that out. KS

Cookie, something is rotten in Denmark, and his name is Poul Thorsen.. There are even docs who are parents whose kids have spiraled into autism, and they are still lapping up what mainstream medicine has bought into. It is hard for a parent to make that shift when all the studies and docs tell us we are wrong. It is very hard when you have no support.
Jackie

Cookie,
I don't think it is fair to assume that this mom has not/is not doing biomed or even a diet with her son. I have a 14 yr old son who has been treated biomedically, including special diets, since he was three. He is still very much like Alex. I'm sick of people assuming that kids who do not recover or get significantly better are NOT being treated biomedically. There are an awful lot of kids out there whose parents have tried everything under the sun for their children, without a great deal of success. But we are supposed to keep quiet/remain hidden because nobody wants to know about us. Nobody wants to admit that biomed doesn't fix every single kid. I'm sick of it.

My son could easily be in Alex's place right now. The only difference is that when he has aggressive outbursts/uncontrollable rages, I don't call the police and I don't take him to a hospital. I do, however, get violently attacked in my home or in my car. That is not an acceptable alternative, but it is the only one I have right now. And that's part of what this whole story is about...that as our children who were damaged beyond repair by mainstream medicine get too old and too strong for us to manage, we ought to be able to turn to mainstream medicine for appropriate help without judgment, without losing custody of our children, and without having to watch our children get treated like caged animals.

Those criticizing the mother, READ before you comment.

Cookie, I think most kids do NOT get biomed or even diet - we're in a community here at AofA where it's the norm. But I can promise you, even here in wealthy Fairfield County - the Gucci Range Rover Moms often eschew these options. For a poorer or middle class Mom some of it is simply out of reach. And as others have said, even if Mom were bat guano crazy, her son should have access to actual medical care in a hospital setting. Even Charles Manson, if he were doubled over in pain and lashing out, would get more than Alex. And "For Cookie" also brings up a good point - biomed is NOT a panacea. I also know parents who have tried every intervention under the sun and still their children are in agony.

KIM

Something is rotten in the state of Denmark, folks. It sounds like this teenager has not received any treatment for any ASD issues until now-where has he been the last 14+ years?

I don't like to second-guess ASD parents, but this Mom is not a very effective advocate for her son on her own. She should have enlisted the services of other parents, other advocatees, etc.

I need much more info than what is presented here to offer advice or suggestions.

This is just not right!!! This is just inhumane. When I first saw this picture, I was thinking Russia or another country far away, and then I was just appalled when I realized it was in Chicago Illinois! I could not believe it. I mean what is come of our so-called team of professionals.. Our American system is failing badly. I know it has rained hard lately in my area and I wonder just how many tears God can cry.. before the end draws near..

The first hospital he was in, he was left in an ER bay - shower facilities probably weren't available. Even if they were, who would walk away and leave their upset, restrained, suffering child while they took a shower? Why do you assume she did nothing?

You need to understand that "they" have the power in those situations. If "they" think you aren't compliant, then "they" threaten you with CPS and CPS will remove your child.

Let's stop second guessing his mom, it isn't our place to and it just shifts the focus from where it should be. It should be on them - the ones that should be treating him and caring for him as a human being.

Is there no other medical facility? Advocates? Lawyers? Hello? Mother what are you doing dear? You are not helping him by staying and not bathing yourself? Take your son somewhere safe! Secondly, has anyone looked at his diet? My daughter is very diet sensitive and on a proper diet for her, she has little to no issues, off diet and she melts down, can focus, stims a lot , tries to run away etc. just my two cents.

Kim this is only contact I can find family friend http://www.facebook.com/nfrw1

I don't understand why this mother stayed at the hopital with her son. He wasn't under arrest. why did she sit in er for 13 days w/out showering and with her son in restraints? I would never have sat there and let that happen to my child. I don't get this. why did they stay at the hospital?

Know that Loyola Facebook page will not take any posts related to this incident. There needs to be a protest rally at this hospital. I am IN!

I would transfer my child out of that abusive hospital ASAP!! And why hasn't the child protective service investigate this hospital?! Why hasn't joint commission come yet? Please be more aggressive in speaking up for your son! I have learned from my journey with my daughter, being timid and nice will not get anywhere when speaking up for my daughter. Good luck! I wish you and your son the best!

As a behavioral therapist for children with autism and a mother of 3 boys two who are disabled. Autism and cerebral palsy. I am appalled! ! There should be a special needs advocate with in the hospitals to support and aide these patients and parents from preventing abuse. This story has left me broken. I pray fir u and your son.

Why is he still at this hospital? To me it seems that neglect on the mothers part is just as to blame as the hospitals. Are there no other hospitals in the area? In the next 50 miles? In the state? Move him to another hospital where he is going to get good care!

I pray for this child, it seems his needs aren't being met by any of his caregivers.

I certainly would have taken him out of there after the first day in restraints. I am praying for Alex with all my heart. A lawyer is needed and Alex needs to get proper care far away from there. The gut is directly related to the neuro pathways. GF/CF diet helps, along with very limited sweets, lots of clean water, and daily vitamins. Fresh foods, etc. Drugs are not the answer! That is obvious. Dont sit there watching while the child is being mistreated. Have everything documented and get a lawyer. Do what you know is right, not what they tell you is right for YOUR son you know better than anybody else. A DAN doctor is very helpful getting your son the proper diet he needs.

This is awful and I am so sorry that this has happened to your son. I am a teacher and I have had autistic children in my class and they are children who just learn differently than everybody else. I am appalled at the treatment of your son and I pray that he receives the treatment he needs because he is a human being and to be treated with dignity and respect. God bless you and your family


After the Trinitas Hospital experience, Eric was in the psychiatric section of St. Clare's Hospital in Boonton, NJ.
They couldn't handle him there either and the hospital's lawyers threaten to sue us if we didn't take Eric home or place him in Greystone Psychiatric Hospital in Morris Plains, NJ. Ironically, Eric was born at St. Clare's Hospital and why I try to see doctors for myself not associated with this place. We placed him in Greystone and he was only there for 2 or 3 weeks until he was moved to John Hopkins in Baltimore, MD. The patients and doctors at Greystone said that it was an inappropriate place for Eric. Eric was in John Hopkins for 4 to 5 months and they couldn't handle his aggressions either.

Only now where he is in the residential center in Delaware have they had success with lowering his aggressions.


Our son, Eric was put in Trinitas Hospital in Elizabeth, NJ for aggressions. He encountered the same treatment as Alex being tied to the bed. We took him out and brought him home and never placed him in there again. Before he was tied up Eric was running around and grabbing candy at the nurse's stations. It was before Christmas, and they had a poinsettia display out. We warned them that Eric could grab that and eat them (poisonous). After that, he was tied up because they couldn't deal with him and it seemed to be the only way they could....pathetic. It was noted as the best hospital in NJ to treat autism. I'm sure no one would want to see the worse one if this was supposed to be the best in NJ for autism.

See...........

http://www.originsgenomeresources.net/naminjucresources/?q=node/31

How something like this happen in our country,I am sick to read that this is taken place in the USA.Are we that blind to let something so crucial go on......... Please anybody Please help this Jung boy PLEASE

It has all been said here...the American Medical Industry MUST BE BROUGHT TO TASK...PERIOD. No other person, child should go through this kind of treatment...it is inhumane.

What kind of medicine is this?

Perhaps they will bleed him next.

That poor young man I pray he and his mother find healing now.

Hello, i would like to know if any parent is going to the hospial to support the family.I am willing to go if someone is oing to be there.you can give my contact number 8156034320. Thanks!

Angie,
That is so sweet. I am feeling so helpless in wanting solutions for that family too. i think all of our outpouring perhaps is more stressful. She is so brave to share her story. It could be any one of is in her shoes right now.

The hospital knows we are watching. They have been bombarded with our advice. I wonder if perhaps we could continue to show our support in one that helps the family? What do you think of the idea of anyone who can....sending a get well card to Alex at the hospital. We can put a few dollars in....the mom must be eating every meal there. Then they know they are supported, and we are offering help to her now...yet we are not stirring it up with administration? Just an idea.
Jackie

I am SERIUOS here, I a, willing to drive over there as along as at least one other or ore would come meet there too...to give mom some support, physical and emotional, and bring the physical pediatric jrnals abut autism/GI issues.......

Does Alex have some sort of communication device? PECS cards? Ipo/pad/anything he can use to tell/show pain, cux right now he is showing his nautiusness and pain by aggression....I am no doc, but that pretty common sense, as you feel nauseous, what would you do of someone you didn't know was getting up in your face or putting you I restraints?????

I will go do there RIGHT NOW if we can arrange something....if interested please get my email from the editors

Angie R
proud Mom of Ethan, Alex,Megan, and Sega our Miracle Dog

This is sickening. Someone should alert the State Attorney General for immediate investigation. If the internal hospital administration is unresponsive what is the recourse. This hospital should lose its accreditation.

The hospital needs to do the tests this mother is asking for.
PLEASE LOYOLA MEDICINE REMOVE THE RESTRAINING DEVICE AT ONCE.
THE AUTISM COMMUNITY IS WATCHING.

If he would be my Son,I would be calling the Police and report
this MALTREATMENT and ABUSE immediately.I would be calling a lawyer and would sue the hospital for traumatizing my son.
ENOUGH OF THIS KIND OF A TRAUMA,IT IS TIME TO TRAIN THE HEALTH PROFESSIONALS THAT OUR CHILDREN HAS SUFFERED ENOUGH,PLEASE DO NOT MAKE THEM SUFFER MORE.PLEASE REMOVE THE RESTRAINING CUFFS AT ONCE.MY HEART IS BREAKING TO SEE THESE PICTURES.PLEASE GOD,
HELP THIS FAMILY AND STOP HIS SUFFERING.

Why didn't she take him AMA to another hospital?

There is an answer for one of the underlying problems with Autism and that is the severe constipation. The medical device is called Pulsed Irrigation Evacuation (PIE*) which is a water system that will relieve the constipation. It is not a well-known device at this time, but it has been approved my many insurance companies for patients that have neurogenic bowel. California Medi-Cal has approved the unit, as well as VA hospitals. I have a child with spina bifida and I am aware of how serious the GI issues are with many of our disabled children. I have been using the device for 12 years now.

Note the doctor's quote on the Fox Chicago coverage, as an excuse not to do further testing:

'We have to heal the mind first and then the mind is going to heal the body.'

Then why don't we say the same thing to cancer patients: 'Heal your mind first, then your cancer will be healed.' No need for chemo and radiation, right?

No need for medecine and doctors at all, right? Heal your mind, everyone!

I used to speak locally on autism interventions but I stopped after two reports to DCFS that I had Munchausen's, was giving my children "harmful substances" (enzymes), neglect (gfcf). Effectively silenced.

My point though is that when I used to present and speak I would talk with some of the top people from around the US in this field and there was a general agreement from many who had been literally all over the world helping families and speaking that the Midwest, and Chicago in particular, seem not only in the dark ages in terms of autism, but proudly committed to staying that way.

Every year I used to hand out and put up hundreds of flyers about Autism One and they'd be ignored (some families actually returned the info to me with great displays of hostility.) It was just a neutral conference flyer. My son has always been the only child in his entire school on biomed, and that continues on in high school, with a huge population of clearly sick autistic kids.

There are several hospitals here that our local alternative ped has told me to avoid at all cost, even if my son is standing in front of the ER and has an emergency, because of how badly they treat autistic kids (and how quickly they'd use Risperdal or report me to DCFS if I refused to give it to him.) It's vital to be part of this online community (and for us, to mostly consult with out of state medical providers) because it is a frightening place to live.

Either Zyprexa or Depakote (think it's Zyprexa) can STOP BREATHING in conjunction with Ativan - to be safe he BREATHING needs to be monitored if he's being given both!!! (if it wasn't then they did something ELSE wrong). I will call to complain about Alex's treatment on Monday. This is RED TAPE, RIDICULOUS, UNACCEPTABLE, CRIMINAL - SOMEbody, PLEASE help this boy/family!!! My PRAYERS are with them... WE have an autistic (verbal) child who has mental illness subsequent to a bullying/abuse/death threats during the school day IN school for 4 months 2 1/2 yrs. ago. He also suffers from chronic bowel problems (encropresis, chronic consitipation with intermittent "running" from Miralax - all which only began AFTER his in-school trauma)... Educators, OBVIOUSLY this "hospital", etc. are NOT protecting our precious kids!!!

Jackie,

Thank you for sending them the consensus report. I am hoping that someone actually puts it in front of the personnel responsible for Alex's treatment - and asks whether they didn't know about these articles in *Pediatrics* (and have not kept up their continuing medical education!) or have been ignoring them.

I felt incarcerated by Reston Hospital staff when I took my son there a few years back. I found that they were inept at treating children in the spectrum, and that they would rather torture with threats for as many hours as possible to tire us, so that we would agree to their archaic suggestions. I found that there is a dearth of studies about this issue, and that until more of these incidents happen our kids our not safe in many of our local hospitals.

To Carolyn. I sent them that consensus report. I am a nurse and mother of a very sick autistic child in California. Our GI findings were only confirmed after I paid out of pocket to get our son, Fintan, to Krigsman. Prior to that I would get pictures from the school of him leaning across the tables and chairs in pain. They thought it was cute. The doctor whould tell me he had toddler diarrhea despite the fact his bottom was bleeding and he was throwing up all day.

I told Loyola's office that our community is watching them. Alex will be looked after now and will get his care because the public has shamed you. And when he does...my bet is the mother's fears will be confirmed. Which leaves you wide open for a malpractice lawsuit. so he best be taken care of now while you are still able to provide him the care.

This is such a distressing story. A sort of microcosm of the autism disaster. Doctors who have no idea what to do- probably never heard about DAN ! They have been lied to by their medical associations about what autism is and what the cause is. Just look at Kasey's suggestions- Have they heard of any of them for an autistic child.? Some of these doctors have autistic kids themselves, and yet may still be in the dark, trying to tow the mainsteam autism line.(I know of a pediatician at one of these hospitals who has an autistic child) . We are all truly living through a holocaust in our time. Im with those who would like to fight back more aggressively whenever possible.

I am so disgusted reding this. this poor young man and his mother, to have to go through all this for so long, because of untrained professionals, when will our society catch up with the reality of what is happening. I am the mother of a 32, yr old daughter who is blind, non verbal and mild to moderate mental disabilities. she also suffers with seizure disorder. We dread going to the hospital, as we know, we may run into some terribly untrained staff, who have no idea how to handle her situation. I would not allow those restraints, Poor mother. My heart goes out to her. Please, we all need to take a stand for this population of people with imaiprements. May God Bless her and her son.

I remember taking my daughter to the ER in our CT hospital for severe GI pain and behaviors. She was a tot, and so I could control her little body. She was screaming though. I convinced the ER doc to please take X-rays of her belly. Nothing showed up - at all - but I later determined that BHA preservative chemical from the newly Gluten Free CHEX cereal was causing her agony. I was so excited to find a CHEAP GF cereal I was using the Chex like MacGuyver - as bread crumbs, cereal, marshmallow treats, I OD'd my kids on them. And my daughter paid the price in her gut. I've never bought them since. I remember feeling totally afraid and defensive in the hospital - the docs just did not know what to do for my girl - and they hate when parents make suggestions. It was dreadful, but nothing like this horror show in Chicago. I hope Mom is getting results as a function of the sunlight we have cast from AofA and elsewhere. KIM

This could have gone completely different. Several years ago, my ASD son had severe aggression to the point that I had to call the police. We took him to the emergency room and I told the doctor that I think he is severely constipated. She felt his abdomen and said that it felt "soft" and did not think he was constipated. I told her to do an x-ray to make sure. She was not going to do it but the police said to listen to the mother and just do it. She agreed to do one x-ray. It eventually turned into 4 x-rays because his whole GI tract was filled with stool. After a good clean out, my son was back to normal. The staff at Chicago Hospital are in the dark ages.

Shame on all those who have had a hand in keeping Alex in deplorable conditions. Isn't the dcoctors Hippocratic oath still valid? First do no harm. Lets help Dorothy spread the word and get her and Alex, some help.

Well, you won't use what I sent. All I will say is that my son was nearly dying too due to bowel impactions and institutional neglect just like this. So I have faced this with my son who is 39 year old. But I found a solution and my doctor is amazed at what it has done to bring my son's health back. My son had a huge megacolon and now it seems to be minimal. If someone wants to be in touch with me I will tell you about this procedure that is just about as simple as an enema but does a wonderful job of bringing health back. My son was dying...now he isn't. Bowel doctors just don't know what to do. If someone wants to contact me then they can.

Les miserables, thank you for the link.

I noticed that Alex's mother was told, "we have to heal the mind first and then the mind is going to heal the body." In other words, the hospital and its personnel think that he doesn't have a physiological problem, only a psychological problem (ie. they are thinking the old cliche, "its all in his head").

These people have an ignorance problem. They need to be shown the 2010 GI Consensus Reports and the applicable articles from the November 2012 Supplement (published in *Pediatrics*). It should be pointed out to them that these articles state that aggression (and self-injurious behaviors) can be indications of abdominal pain and that "Individuals with ASDs who present with gastrointestinal symptoms warrant a thorough evaluation, as would be undertaken for individuals without ASDs who have the same symptoms or signs." The quote is from "Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals with ASDs: A Consensus Report". I doubt that they think *Pediatrics* is a "fringe" or "unreliable" publication.

The hospital and its personnel also have other problems - such as a noticeable absence of compassion for special needs children - but those problems are much harder to correct.

This young man would benefit from the homeopathic remedy APIS 30c to reduce the inflammation and swelling seen in the picture of his back. He will most likely also get mental relief from this remedy. Please tell the mom she can get this at any natural food store or even some drugstores carry homeopathic remedies. This remedy saved my son on many occasions from anaphylactic reactions to allergens.

What a shame! I have a high functioning son with Autism, this type of treatment would make him worse. Does the State of Ill not have Autism Awareness? Or people who specialize in how to handle and traet people with these conditions? I would remove my child from this institution immediately whither hopes of finding better care for him

This is a hospital which mandates flu vaccines for all employees and students: http://stritch.luc.edu/depts/regrec/catalog/visiting.htm (3rd to last paragraph). It must be a great medical center then.

i am disgusted that your hospital and others have let this happen to this young boy,the safety and his human rights have been taken away,he is a human that deserves to be treated as such didability or not.our family have two autistic children and no way would i allow this to happen.this young man was in pain and suffering from a medical condition that needed treatment,is it because he was autistic that you decided to treat him as non human. shame on you where are your ethics as drs and as medical personnel.wheres the treat as equals,wheres your compassion. im disgusted you are a disgrace.

Roll over and settle, Loyola; you cannot defend this.

The "agreement" they wanted her to sign is notably coercive. Note they make the mother "responsible for [his] medical care and treatment"!? What are the hospital's responsibilities, then? Obviously, the hospital lawyer drew this up specifically for this patient, and it is setting the mother up to "fail" in her numerous obligations, at which point they can dump the patient somewhere else, probably to a psych ward. The administrators and risk management department of the hospital look like clowns; they are compounding their errors further. You can't make up this degree of incompetence.

Mom should have plenty of witnesses, and keep those cameras rolling. Meanwhile, I hope there is a gastroenterologist on staff who will take this patient seriously. The problem is, he may say, sure, I'll scope the patient, but then say, there was no pathology. The eyes do not see when the mind is closed. And sometimes the findings in this disease are subtle to the untrained. Many of the abnormalities in autistic enterocolitis are seen only on super specialized tests- cytokine levels, for example. They ought to fly Dr. Wakefield in at the hospital's expense, and do every test he recommends.

There will be a lot of pressure by administration to get the patient out of there- I hope there are physicians there who are up to the job. Thank you for publicizing this case of medical child abuse.

I feel physical pain looking at these picture
all the idiotic $ spent on genome nonsense but this is were mainstream treatment is?

God bless his Mom. She is so brave to put this out there.

Dear Doctors at Loyola,
You are icky. Please leave the profession. If you don't care about kids.... especially nonverbal kids in pain with GI issues that you woudn't want yourself, then you really need to find another job. Perhaps you would do well working as a waste engineer since you are good at treating kids like trash. I'll pray for you all.

when my son was bent over from terrible pain I took him to the hospital. Note I live in ALABAMA so not the most technologically and medically cutting edge place. They gave him electronic toys to play with while we waited...and scanned him. They immediately pinpointed my son had an impacted bowel. He was given something for pain, miralax, and enemas. I took him home and he is now mostly fine.

IF Alabama can manage that then Loyola has no damned excuse.

Why doesn't she report patient abuse? Illinois had a number of resources for immediate action: http://www.dhs.state.il.us/page.aspx?item=29428

My heart is broken for this child and his Mom
Why is this happening in this age of acceptance and equality for just about anyone else in this country? Animals are far more protected than this child had been.
Stop this immediately! God please help this family. They must feel so alone. But please know that there are so many of us who are outraged and will support you anyway that we can.
I will be making calls as soon as myheart stops racing and my hands stop shaking.
Please feel better Alex and strength and peace for his Mom!

This is absolutely deplorable! A patient who cannot speak for himself should be treated with MORE delicacy, not like a rabid animal. The so-called medial staff involved should all be brought up on charge of malpractice, neglect, and abuse! Alex needs to be transferred to a facility where he will be treated with proper medial care and the compassion that doctors and nurses are supposed to possess.

FOX 32 just finished an interview with Dorothy at the hospital. It will be on at 9:00pm, Fox 32.

I am horrified at what I just read and can not imagine that this happened.Where are the answers for this situation and who will be held accountable...certainly not Dorothy and her autistic son...did they ask for this to happen???? I think not!!!!

I will not rest until this situation is rectified and medical staff be accountable for such deplorable behavior.

I will pray for this child and mother, always. DRB

When will we wake up that people with bowel issues need appropriate treatment? I keep trying to tell people about a procedure that saved the life of my son who was dying due to many bowel impactions. See www.piemed.com. It is a device that cleans out the upper and lower bowel like a pulsating enema. Without it my son was ill,sickly. With it his health returned. He needs the procedure three times a week. It saved his life! Martha

There should be a patient advocate in the hospital. Get hold of them,and maybe even mention you have already had his situation published on the web. Are they monitoring the restraints? Should be every 15 minutes, I think..?If you want to be nice to them, you can ask them how often someone will be checking on the restraints.
Then keep a record of what is going on,how long is passing without someone checking on restraints,( hey a video camera with time markers might be ok,if you just film your son.Don't know the law in your state.) A documented hour or two of no one checking on him is going to look very bad indeed.) Are the doctors coming in to assess him on that 4 hour marker? If it isn't happening, document it all.
At that point they should be more than willing to work with you to get better care.
Also, when you talk to the patient advocate, be clear about what you want them to do. Tests, consults etc.
You should have a lot of negotiating power, and they will probably be willing to do a lot.So figure out what you think he needs, then get it done.
Good luck.
My prayers are with you and your son.

The "neurodiversity movement" can get stuffed. As someone who at times works with kids that can't toilet themselves, can't speak... they.do.not.speak.for.them.for.them.

Pure Horror,

This child, in addition to being previously poisoned with toxic vaccines, is now further tortured and poisoned with many psychotropic drugs (Lorezepam, Oxezepam, Benzatropine, Zyprexa and Ativan), which are totally useless but harmful for autistic persons (by the way, Ativan is Lorazepam; is he taking this drug under two different names?). These drugs give him pain, make him more aggressive, unable to sleep, addicted, and totally incapacitated. He is being treated as a human guinea pig in Nazi-German death camps.
He should be taken slowly OFF all these drugs, given possibly an anti androgenic and analgetic medicines, and put on biological DAN therapy.

This makes me sick, sick sick.
I am it far from this area (within 1.5 hours or so) adm I am willing to drive down there to help be emotional and physical support for Alex and Dorothy, we all have been thru some sort of medical malpractice with our kids to some degree, but I believe THIS is just what we fear most. My Alex is also non-verbal and when he is in Pain he can also get anxious and upset, however because I'd the great info families have shared here, until we can get into a specialist, we at least have been able to help control it al so our boys don't end up in situations like this!
Dorothy must be sleepless and on edge herself, so is there ANYWAY we can organize some thing where a few of us at a time can be down there for here???

Lisa, can you get in touch with her and see if she wants some company? I KNOW, the hospital might start to actuall ACT if they saw some support for them, don't you think?

Please let me know here or email, and I am on the road right away to help, I am just a little 1.5 hours away or so, so it's a hop, skip and a jump for me to go over for the day(s)...AND the more PRESENCE there by educated and experienced Autism moms/families that are PRESENT there, the BETTER chance for media, local And national outlets to cover this, and then the more help will be offered by the right people, don't you think?

I know there has to be at LEAST a handful or two people that are not too far..and. Would organize if needbe...land so happens, this weekend for me is wide open too....come on and lets get Alex out of this nightmare! I CAN NOT IMGAINE!

If this is not resolved, just think of what his lifelong medical record will look like? First thing every future medical treatment will start off with restraints,,,and I am willing to be if they stopped the drugs for behavior/neuro problems, that anger and aggression would leave so they could SEE he is in pain, oh man, these guys need our help. Period.

Who is with me?
Angie R
Proud Mom to Ethan, Alex, Megan, and Sega our Miracle Service dog

I do not understand this at all. It is beyond all comprehension. Surely a child, even a child with severe aggression, can be medicated with some kind of twilight sedative which will knock him completely out, for a short period of time while a gastroenterologist does a proper work up of his GI tract. Clearly if the child has severe vomiting and diarrhea, that will not stop, there is a medical problem that goes beyond "autism". What is most disturbing to me is the length of time that medical professionals have completely ignored the medical problems which brought him to a hospital in the first place, yet they are willing, instead to confine him STARK NAKED without even an adult sized diaper which he obviously couldn't possibly remove due to his hand and foot restraints, and let him rot in their facility with no apparent end in sight, and with no treatment plan at all. Who is coordinating this young person's care? Where is the hospital case worker? How is this going to end? Is this child ever to be released from the hospital, or is this to become a lifetime stay? What does the health insurance company have to say about this? Is this non-treatment stay going to rack up millions of dollars in costs for services that were not even provided? This is insane! I know a person who had brain surgery and she was released from the hospital only two days later. Why aren't this child's medical problems being addressed by anyone? This is shameful.

Nightmare for us and worse for the child horrific..

Angus

No one wants to listen to me. My adult with autism is like this individual and GI specialists have no clue about what what to do. I found a device that turned my son around into a healthy, happy, and non constipated individual but no one will approve it. I have, at my senior citizen age, taken over his Medicaid waiver provider care program in order to use administrative funds for the PIE Machine. Check out www.piemed.com It may have been Depakote that contributed to paralyzed bowels which he has today after four impactions. I know institutional neglect was the final thing that sent him crying and to a hospital. He has three cleanouts with the PIE every week. His health came back. Martha

forgot to mention, I agree with Kasey above, a DAN doctor would be able to lead him through recovery and help with the GAPS diet etc

Resolving his gut issues will help improve his "autistic" issues..He needs to do the GAPS diet by Dr. Natasha Campbell McBride and be weaned off his meds and given supplements and real foods that support the healing of his gut and mind...look at Dr Amen also, at the Amen Clinic in California.For his sleep issues he could have been given a natural supplement 5 HTP. I use it on my Down Syndrome son who has issues with sleep, frustration due to communication problems and consequently aggression.
I hope this helps. I am a neuro developmental therapist/psychologist.

I'm so sorry you've endured this Alex... hugs for you and your Mom. Tried calling Paula Hindel's line but I couldn't leave a msg. Mailbox was full! Will keep trying other means and share your story. Hugs and prayers from Hawaii.

This story is about abuse and neglect. It's absolute proof that the medical community has completely failed a generation of disabled children. After two decades of soaring autism rates, mainstream medicine has no understanding of how to help these affected patients nor do they have even the appearance of compassion or concern for what these children are going through.

Words can not describe my disgust and anger at the treatment of this young boy and his Mom! I have emailed Erin Burnett at CNN and am hoping and praying that she will pick up the story. My daughter is also tweeting about it and she has over 5000 followers. Hopefully someone will pick up the story, this needs to be told!
Alex and Dorothy please know that you are in our prayers!! I wish that there was more I could do to help you.

This is a scandal and violates Alex's Human Rights. Use whatever legal avenues are open to you. There are pro bono legal charities. This is happening the world over. While my son is not as badly disabled, I know exactly how Dorothy feels. I had to watch while my son was put into a coma for 10 days with Acuphase. He had been admitted for the second time with acute diarrhoea and psychosis. They refused to take a stool sample. The nurses in charge were so appalled at this treatment, they contacted the media. Other adults with autism have been drugged to the point of near death.
When will this madness end and our children be treated like human beings.? The law would not allow animals to be treated like this!

Please call the hospital CEO's office and demand that this child's shackles be taken off and that he be given a full gi workup immediately. Mom-your child needs to see Dr Arthur Krigsman or Dr Tim Buie pronto. This is horrific and needs to stop NOW.

I've sent a copy of the link to JACHO FB page,and here is their response:

The Joint Commission: After reading through your post, we’d like to offer you the chance to further voice your concerns and ask questions. You can do this by contacting our Office of Quality Monitoring at 630-792-5800 or online at http://bit.ly/f6A0Dq.
2 minutes ago · Like

wow....the more I think about that document they drew up...I can't believe it. Talk about a bullying attempt to cover their butts. The language dumping it on the mom that she needs to follow their schedule to dope this kid up or she could be in trouble and then wanting her to sign it. This is happening every day. And she went to them to get help for this poor kids pain and GI issues that they have told her they will not address and did not do a physical evaluation of him? This has malpractice written all over it. Are there any lawyers in the area willing to take this on for this family? This poor boy needs pain relief and medical treatment for his GI and this would resolve a lot of behavior problems. I also believe that legal action should be taken and because this mom has been so brave to share her story it may set an example for physicians in the future. This is a huge opportunity here to help this family and others. Hopeing the best for them!

I'm so glad the Thinking Mom's Revolution is going to be championing cases like these. It seems a natural extension of everything you guys are trying to do and so necessary. These things happen every damned day to so many children. The Home School Legal Defense Association exists to defend parental rights of home schoolers but there is no such focused parallel action network to protect medical rights of families or to do the down and dirty work of helping as many cases as possible. We'll be fully behind this effort and will await future alerts and efforts as well. Get the word out on what we can all do to help this boy and all the others children who are taken hostage like this.

Alex staying in ER for days is unacceptable and waiting for 15 minutes for the restraints to be removed for his basic needs to be attended to, is unsafe standard practice of care.
I am a registered nurse(also a mother of autistic teenage son) and we put patient on behavioral restraints for patient's safety and safety of the people caring for that patient. Along with the application of restraints are guidelines like frequent monitoring of patients basic needs, anticipating needs both verbal and non-verbal, monitoring his skin/circulation of arms and legs on restraints every 15 minutes or every hour and releasing restraints every 2 hours in addition to releasing it for addressing basic needs, and skin care. Reading his story, there is a lot of violation committed here with restraints application.There should also be a restraint de-briefing, attempts to remove restraints, alternative to restraints use and family education. let me name a few violations that I seen based on the photo 1. restraints are too tight based on the redness in the wrist 2.improper monitoring of skin based on the redness 3. poor skin care 4.basic needs not addressed 5.pain 6. position change, 7.hygiene/toileting 8. hydration/food 9.privacy 10.seclusion 11. loss of dignity, just to name a few. This is just on the restraints, I have not say anything about the he medical care he received.

This is a violation of Alex patient's rights. JACHO should be notified of this violation.If a case is filed with JACHO,an investigation will be opened and they will visit the hospital and review Alex case. JACHO is very strict about use of restraints and very particular about maintaining patient's safety, dignity and privacy while on restraints.Looks like the violations are not only in the restraints application, the medical treatment and delivery of care is also deficient. If the hospital is guilty of such violations, JACHO will give them the fine of each violations committed.

I urge Alex's mother, Dorothy to call JACHO and file a complaint.

Has this parent looked into UIC Medical Center??? I've heard that they have an excellent program for children neurological/ medical conditions. Plus it is a teaching college. And works w/ public Aid .

Get the restraints taken off and take your child the heck out of there? Why this went on this long just baffles me. If my child wasn't being treated properly we would have been out of there! My son has autism. He's non-verbal. He also has epilepsy so we've spent our fair share of time in emergency rooms, and yes, I have gotten up and walked out with my child. I would never tolerate this kind of treatment of my child. Good lord!

This is incredibly cruel and sickening. The lack of interest in helping poor Alex and his mother is so heartless that it's hard to find words to describe. I found this contact form and have sent a message. http://www.loyolamedicine.org/contact-us

yes Margie GI problems are very common which is why children with autism should be treated medically. My sons GI doctor said most of the children with autism he examined have gut issues. Either an imbalance (dysbiosis), inflammation, and/or too many bad gut bugs. It is unclear how this may be effecting the children's behavior but regardless it should be treated and very often finding a GI doctor who is willing to treat a child with autism is an uphill battle and it shouldn't be.

There much more information on the web if you look up "GI issues, autism". Dr. Timothy Buie, Dr. Derrick McFabe and Dr. Sydney Finegold have written about this. There's also information on "The Autism Enigma" web site.

http://cogentbenger.com/autism/

Dr. Usman is amazing!!! This is disgusting. Someone help this lady...

Please give him good probiotics and ENZYMES will help him more than anything. The best brand developed for autism is Houston Enzymes and please get the tri-enza one. This company will send you free samples if you email them on their website. I have tried many these are best and enzymedica is runner up. God bless you!!! Abundance of love to you!!

My heart breaks for this woman and her child and I hope people in the medical profession see this post and get them the help they need! I'm praying for them.

How appalling!! This shows the blantant lack of understand or supports in regards to a child with autism. That staff needs current training in autism and patient care skills.
I hope the family instigates a law suit and hospital staff is charged with abuse and neglect towards a child. Look at the pictures, how can you not see the abuse this child was subjected to. Shame on Loyola Medicine and the staff involved.

I am a CEASE homeopath. This boy needs Saccharum Officinale 6x daily. You can't find it on the store, but I could send.

Www.lotushomeopathy.com

This is sickening and it hurts my heart for Alex. My best friend (of thirty years) has an autistic son (now 20...gosh that's hard to believe!) I will take a better look at this and make some phone calls later on. I don't know how much good it will do, but it certainly can't hurt! But I have a question for parents of autistic children...Is it common for children with autism to have gastrointestinal issues? When my friend's son was about 3 years old, he had a bowel obstruction, and needed surgery. And from reading some of the comments, it seems like children with autism have a lot of "stomach" issues. I wonder if it is from stress. Anyway, I'm reposting this now on my fb page.

I work in a hospital but I also have autistic children I am appalled at the unethical treatment you received. You need to file suit and own that hospital

I don't know if this will help Alex but my son recently had a colonscopy and I had to clear his colon with 9 ounces of magnesium citrate. The effects of the Mg citrate on his behavior just from cleaning were very noticeble. He is much calmer and attentive. Magneisum also helps with sleep.

Anyway here is some information on magnesium that I think all ASD parents would find very informative.

Magnesium: The Most Powerful Relaxation Mineral Available
http://www.huffingtonpost.com/dr-mark-hyman/magnesium-the-most-powerf_b_425499.html

I'm so saddened to hear this & see the photos. I am outraged! Did not 1 person on staff think this was inhumane treatment? Where are the morals & ethics of the people on staff at this hospital? This is a horror story! I will definitely pass this story around so that awareness can be brought for all the cases that I'm sure are undocumented & similarly happening all over the country. I will write to my Senators & Representatives, as well as the joint commission. We have to stand up for our children with Autism Spectrum Disorders & raise awareness! Police forces & Hospitals should receive special training so they do not discrimate against those with ASD. Autistic & nonverbal autistic need us to speak for them, but professionals in the medical field need to know better just in case a family member isn't available to speak up!!!!

I can only pray/hope that this story will change the ways of the system for the younger generations of kids. But the price Alex and his family is paying....it is unforgivable. The moral liability, cant even begin to wrap my head around that thought. I've called, sent email, contacted the joint commission and posted on their FB page. Wish I could do more.....

This makes me want to vomit. I emailed the media relations director -- and encouraged my friends to do the same.

This is the nightmare our loved ones are facing. What happens when I'm gone???

I'm sending prayers from Michigan. I wish Alex were here. WE have very understanding and helpful gastroenterologists, in the Lansing area.

I just reported this to an old contact (I am a former hospital administrator) at the Joint Commission and had a conversation with investigative desk at ABC News in Chicago. Let's see if we can get them exposed! Also Tweeted out all over. WRONG WRONG WRONG!

I called there and gave them dr Timothy Buie's name and number to call a GI who understands our children. I hope they contact him and get instructions on how to help Alex!

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