Chicago Hospital Locks Down Autistic Patient & Refuses Medical Testing

[Melbel]

I have been following this story about a non-verbal autistic child (age 14) who went to the hospital with abdominal pain. He was restrained and sedated. More than 3 weeks later, he has not received even the most basic medical testing. :( From an online article:


On February 16th, Dorothy Spourdalakis took her 14 year old son Alex - who suffers from autism and is nonverbal - to Gottlieb Hospital for severe gastrointestinal distress. There, Alex was placed in locked restraints to all four limbs. He remained restrained for there for 13 days while he suffered bouts of severe vomiting and diarrhea, naked save only a hospital sheet to cover him. On February 28th, Alex was transferred to to Loyola University Medical Center because they could provide the services that the hospital determined he needed - pediatric gastroenterology, neurology and anesthesiology. However, when the gastroenterologist saw Alex on March 5th he did not see the need to perform a physical exam. On March 12th, Dorothy had a care plan meeting at the hospital. She was told that the staff is “unable” to determine if Alex is having pain, and only psychiatric treatment has been ordered. Dorothy was told that if she does not agree fully to the terms, Alex would be removed and placed in the care of DCFS. Alex has now been in the hospital for almost a month (20+ days of which were spent in restraints). None of the many standardized assessment tools for nonverbal patients have been utilized .His pain has not yet been assessed or treated. He has not been medicated for pain. He is being denied medical care and accommodations for his disability of autism.

http://www.examiner.com/article/thinking-mom-tells-loyola-univ-medical-center-that-autism-is-not-a-mystery

Backstory with photos: http://www.ageofautism.com/2013/03/day-19-loyola-chicago-hospital-locks-down-autistic-patient.html

There is a Change.org petition if anyone is interested in signing. http://www.change.org/petitions/loyola-medical-center-maywood-chicago-illinois-provide-appropriate-medical-testing-and-medical-treatment-for-alex-spourdalakis

ETA: Link to news coverage - http://www.my50chicago.com/story/215...-him-to-suffer

[StantonHyde]

This is bizarre. I work in psych, there is no way we could/would restrain someone for that length of time. What the heck is going on?????

[OKKiddo]

What is up with that document they wanted her to sign?!! It was obvious someone just typed it up and it came across as more of a bully tactic than an actual medical care plan! And the mention of being forced to contact state agencies? No way! ETA: I signed the petition and I'm praying for the family!

[Tondi G]

I don't understand ... if I was unhappy with the care being provided to my child I would take the restraints off and remove him AMA. They can't keep him prisoner. Where is the child's pediatrician? They should be able to work with the hospital and the child's mother to get him moved or to get him the care he needs and deserves. This is crazy!

[sntm]

I don't know - the story seems fishy. I find it very hard to believe her allegations based on how hospitals run these days.

[sntm]

The article's sources include two links to an online website and one to Facebook. It doesn't read as credible.

[basil]

There's no way that's happening like represented. Keep in mind that Loyola can't tell their side of the story because of privacy laws.

My interpretation is that the mom brought her son to the hospital but no one can find anything wrong with him - other than he is agitated and aggressive because he is in an unfamiliar environment. They can't release his restraints cause he is a big kid who could hurt himself or someone else or escape or something.

The reason DCYF is mentioned is probably because mom is refusing to take him home.

I mean really - if mom weren't crazy off her rocker - why would she have sat there and let him sit there the whole time? And if there was really something wrong with the kid he would have either gotten worse or better or they would have figured it out by now.

I feel bad for the kid and for the doctors and nurses trying to help him.

[Cam&Clay]

I don't know - the story seems fishy. I find it very hard to believe her allegations based on how hospitals run these days.

Very fishy. When you search for info, you find FB pages and autism sites.

[alexsmommy]

I agree, this is very, very fishy.

[chlobo]

There was a girl brought to Children's hospital in Boston who had previously been sx with PANDAS. They were seeking treatment. The hospital decided they didn't believe the dx and took custody of te girl. Sometimes parents cannot just walk out because pediatric wards are locked.

[MamaMolly]

There's no way that's happening like represented. Keep in mind that Loyola can't tell their side of the story because of privacy laws.

My interpretation is that the mom brought her son to the hospital but no one can find anything wrong with him - other than he is agitated and aggressive because he is in an unfamiliar environment. They can't release his restraints cause he is a big kid who could hurt himself or someone else or escape or something.

The reason DCYF is mentioned is probably because mom is refusing to take him home.

I mean really - if mom weren't crazy off her rocker - why would she have sat there and let him sit there the whole time? And if there was really something wrong with the kid he would have either gotten worse or better or they would have figured it out by now.

I feel bad for the kid and for the doctors and nurses trying to help him.

While I would agree that we don't have the whole story, I'm saddens by your characterization of the mother as 'off her rocker'. You are making a pretty harsh judgement.

I spent 7 hours holding my daughter in my arms in an ER waiting room (for an allergic reaction). Realizing that the medical crisis had long since passed and exhausted and fed up, I told the nurse I was leaving. They immediately threatened Me with calling social services, as I would be taking a minor AMA. In my case, I had the education and experience to know my child would be fine.

It sounds like this young man was still in gastric distress at both ends. It is easy to say that she must have been crazy to allow XYZ, but I disagree. No matter what else is going on, she was relying on the medical professionals. We don't know her background, education level, etc.

I'm just saying, wait until you have the whole story before you nail this mama to the wall.

[Melbel]

The article's sources include two links to an online website and one to Facebook. It doesn't read as credible.


There's no way that's happening like represented. Keep in mind that Loyola can't tell their side of the story because of privacy laws.

My interpretation is that the mom brought her son to the hospital but no one can find anything wrong with him - other than he is agitated and aggressive because he is in an unfamiliar environment. They can't release his restraints cause he is a big kid who could hurt himself or someone else or escape or something.

The reason DCYF is mentioned is probably because mom is refusing to take him home.

I mean really - if mom weren't crazy off her rocker - why would she have sat there and let him sit there the whole time? And if there was really something wrong with the kid he would have either gotten worse or better or they would have figured it out by now.

I feel bad for the kid and for the doctors and nurses trying to help him.

The story is all over the autism sites. Jeanna Reed of AIM (Autism is Medical) and Lisa Joyce Goes who is the Contributing Editor for Age of Autism, Co-Founder of The Thinking Moms' Revolution, and Co-Author of the book, The Thinking Moms' Revolution, recently visited Dorothy and Alex Spourdalakis and confirmed that there had been no medical tests run. They cannot figure out what is wrong with him because they refuse to run tests.

I am sure that we do not have all of the facts, but there is corroboration from disinterested third parties (who would care about their own credibility given their positions in the Autism community). There are photographs that depict a child who is suffering (nude other than a blanket, restraints binding his wrists). At a minimum this matter needs to be investigated.

There is a similar case in Boston involving Elizabeth Wray, a child who has PANDAS (a chronic step infection that causes neuropsychiatric problems). Although the long term treatment of PANDAS with antibiotics is supported by clinical studies and the NIH, the BCH did not approve of her treatment and called DCFS and if I recall correctly, ignored dietary restrictions, took her off her antibiotic treatment regiment, and dosed her up with psych meds all against her parents wishes. The parents could not simply discharge her after DCFS was involved. In this case, the hospital was threatening DCFS as well. ETA - link to Elizabeth Wray news story - http://bostinno.com/2012/10/12/elizabeth-wray-boston-childrens-hopsital-custody-battle-pandas-pans-disease/

There is a pattern where doctors are refusing to medically treat children who present with psychiatric problems, a problem we have seen first hand, unfortunately. Our own son had a dozen neurological symptoms (migraine, vertigo, balance disorder, memory deficits etc.). Months later, he suffered a severe side effect to a prophylactic medication to treat migraines/vertigo prescribed by the neurologist, at which point he started suffering from severe anxiety and panic attacks. The neurologist punted. He sent our son to a psychiatrist and refused further medical testing. When the psychiatrist and psychologist concluded that there was clearly an underlying medical problem, he chided us to get a psychiatric second opinion. There are very few child neurologists in town, and he was the head of the department at the only group. He also refused to test for Lyme Disease and the delays in his diagnosis and treatment may have caused him permanent neurological damage. It is a truly sad situation and children are suffering. Thankfully, my son's anxiety is vastly diminished since treating with antibiotics for Lyme Disease and four other infections. I shudder to think where he would be now if we had not figured out the route cause of his problem through testing.

[Kindra178]

I agree, this is very, very fishy.

I'm local to this. I read the Trib just about every day and have never heard of this. Gottlieb is affiliated with a major research university (Loyola) and well respected medical school. I just can't believe this is really happening.

ETA:

To complicate matters, these days hospitals do anything to get you home fast. Whether that's insurance driven or borne out of a fear of a patient getting a hospital caused infection, I don't know. I have had two surgeries in the past year. With my thryoidectomy, I was out of the hospital in 30 hours. I find it crazy that they would leave him there for all that time.

[Melbel]

I knew I had seen news coverage last week - here is a link: http://www.my50chicago.com/story/21560263/woman-claims-hospital-restrained-autistic-son-left-him-to-suffer

[Kindra178]

I knew I had seen news coverage last week - here is a link: http://www.my50chicago.com/story/21560263/woman-claims-hospital-restrained-autistic-son-left-him-to-suffer

What are the bug pictures? Ants?

[Melbel]

What are the bug pictures? Ants?

I guess so. I did not read anything about that picture, but I suppose it is to show that his room is unsanitary/bug ridden. It does not appear to be a major part of the story. We were appalled at the state of my FIL's room when he was in rehab (particularly my poor meticulously clean MIL).

[Kindra178]

I guess so. I did not read anything about that picture, but I suppose it is to show that his room is unsanitary/bug ridden. It does not appear to be a major part of the story. We were appalled at the state of my FIL's room when he was in rehab (particularly my poor meticulously clean MIL).

Thanks again. Frankly, I think that is weird as well. I have plenty of friends who delivered there, know tons of others who get their pediatric care there and Cardinal George, Cardinal of the Archdiocese of Chicago gets all his medical care there, including multiple cancer treatments. I also have several friends who went to medical school there and trained there. I have never heard that they have unsanitary conditions.

[kep]

There was a girl brought to Children's hospital in Boston who had previously been sx with PANDAS. They were seeking treatment. The hospital decided they didn't believe the dx and took custody of te girl. Sometimes parents cannot just walk out because pediatric wards are locked.

This is exactly what I thought of when I read the OP. Hospitals aren't infallible.

[Melbel]

There was a girl brought to Children's hospital in Boston who had previously been sx with PANDAS. They were seeking treatment. The hospital decided they didn't believe the dx and took custody of te girl. Sometimes parents cannot just walk out because pediatric wards are locked.


This is exactly what I thought of when I read the OP. Hospitals aren't infallible.

I missed your post chlobo because I must have been typing my response. I linked a story about Elizabeth Wray above.

Before his Lyme diagnosis, DS had numerous trips to the hospital for excruciating headaches and panic attacks. Within 10 minutes of morphine, he was doing much better. I can only imagine if they had only treated the psychiatric presentation, without treating the pain. It turned out that he was suffering from Lyme meningitis and/or encephalitis.

Our son had been thriving (academically, socially, sports) until he crashed with undiagnosed Lyme. We had large circles of friends, volunteered frequently and supported those in times of need. In addition to the stress of caring for a very sick child with an undiagnosed medical problem for ten months, we were judged rather than supported by many of our so called friends. It still hurts. Just because you do not understand a medical problem does not mean that you should judge the parents.

[Momit]

What an awful situation. I feel for that boy and his mom.

[basil]

What is the hospital's possible motivation for letting that boy sit there? They enjoy child torture? They like wasting money on long stays that are clearly not going to be reimbursed by insurance as there is no diagnosis? They're bored and don't have enough patients to see???

If it were actually happening why is it not reported in the mainstream media and not just autism sites? Clearly mom is out for publicity so it's not like she didn't contact them.

Hospitals are not infallible but there are some crazy crazy parents out there, even of kids with disabilities.

[Melbel]

What is the hospital's possible motivation for letting that boy sit there? They enjoy child torture? They like wasting money on long stays that are clearly not going to be reimbursed by insurance as there is no diagnosis? They're bored and don't have enough patients to see???

If it were actually happening why is it not reported in the mainstream media and not just autism sites? Clearly mom is out for publicity so it's not like she didn't contact them.

Hospitals are not infallible but there are some crazy crazy parents out there, even of kids with disabilities.

I linked a news report in which the mom is interviewed. She actually sounded remakably calm and rationale to me. The child is not yet stable enogh to be released. The mom has sought additional press coverage. The inference that the mom is crazy even with corroborated reports and photos is disturbing. I guess if we presume THAT mom is crazy (or crazy crazy) then it is safe to assume that something like this could not happen to you (generally).

[kep]

Hospitals are not infallible but there are some crazy crazy parents out there, even of kids with disabilities.

There are definitely crazy parents out there, but there are also really bad situations where the hospital officials/doctors make bad choices. Since the hospital attributes the situation to be purely psychological and not medically based, they may deem the child unsafe to be released as is. And this is definitely not the first (nor will it be the last) time a hospital has used CPS as a means of forcing what they want.

Not all doctors have the best interest of the patient in mind.

[Ceepa]

I agree that the presentation of this story is unbalanced and while I don't believe the mother is without merit, I'm hesitant to demonize the hospital staff and embrace the mother's story in its entirety.

[kep]

I agree that the presentation of this story is unbalanced and while I don't believe the mother is without merit, I'm hesitant to demonize the hospital staff and embrace the mother's story in its entirety.

Yes. Without hearing both sides, which the hospital obviously won't be providing due to HIPPA, it's hard to get an accurate picture as to what's going on. I see no need to assume the mom is crazy or unbalanced either.

[Melbel]

I agree that the presentation of this story is unbalanced and while I don't believe the mother is without merit, I'm hesitant to demonize the hospital staff and embrace the mother's story in its entirety.

I agree and think further investigation is warranted. In particular, I would want to know what tests were run for his clear GI distress, how the hospital would normally treat similar GI presentations in patients without autism or psychiatric problems and whether the hospital has violated procedures with respect to his prolonged restraint. To outright dismiss the claims without further inquiry, assuming they cannot be true or that the mother must be crazy is downright disturbing.

[newnana]

Agree with other posters that we don't have enough info. Something is amiss and we won't get the full story because we can't.

That being said, as a mom, if my kiddo was not being cared for and I was being threatened and I had already done my best to get care for my child and then my child was already referred to other specialists that I felt did nothing and I didn't know where else to turn, media seems like a pretty good option. And I'd probably seem off my rocker if my kiddo was suffering and I couldn't get help. Just sayin

[gatorsmom]

I agree that the presentation of this story is unbalanced and while I don't believe the mother is without merit, I'm hesitant to demonize the hospital staff and embrace the mother's story in its entirety.


Yes. Without hearing both sides, which the hospital obviously won't be providing due to HIPPA, it's hard to get an accurate picture as to what's going on. I see no need to assume the mom is crazy or unbalanced either.

I agree. And I also agree that unless you have had a child with a rare or undiagnosed medical or mental condition, you would be shocked and dismayed by the judgments other parents and the medical community make of you and your child.

I don't judge that mom. Scary situations could turn any of us into "that" crazy mom. She is clearly trying to get help any way she can. I'd do the same.