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« The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center | Main | Dachel Media Update: Canadian Vaccination Conference Uproar, Autism Discrimination »

Day 22 of Autism Agony at Loyola U Medical Center

Update 3/12. Alex's Mom Dorothy Spourdalakis has a care plan meeting scheduled  at the hospital - which, if she does not agree fully to the terms, will mean the removal of her son from her care and his being placed in DCFS.

AlexSick

This is Alex Spourdalakis, now 22 days at Loyola University Medical Center in Chicago, Illinois with debilitating GI pain.  Everyone in the autism community should be horrified and galvanized to action by the lack of care he has received.  Please contact the Joint Commission customer service line at:  630-792-5800. This is a governing body that accredits medical institutions. 

Politely tell them you are calling about the lack of medical care for Alex  Spourdalakis in the Loyola Healthcare system.   They need to receive as many calls as Loyola did 3 days ago.  They need to know what is happening behind the doors of the institutions they are accrediting.  

For background, read The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center  and our original post, Day 19: Chicago Hospital Locks Down Autistic Patient.

The members of AIM  and Alex's mother now fear for Alex's life as the result of medical negligence at Loyola University Medical Center.  If this was a typically developing child tests of every sort would be run to determine what is wrong.  Alex is holding his stomach and his head, IN PAIN.  Where is neurology?  Where are the gastroenterologists?  WHERE ARE THE "AUTISM SPECIALISTS"? 
Where are the qualified medical physicians who CARE SO MUCH?!  Day 22 for Alex Spourdalakis. His mother, Dorothy, has repeatedly shown good faith in the system she is trusting to help her son.  She continues to follow the dictates of Loyola physicians.  She has asked for a list of doctors and residents taking care of Alex and it has not been provided for her.  PLEASE CONTACT YOUR FAVORED RADIO SHOWS AND NEWS PROGRAMS AND LET THEM KNOW THIS CANNOT CONTINUE.  YOU CAN MAKE A HUGE DIFFERENCE IN THIS CHILD'S LIFE

What doctors are doing to "keep Alex safe":

Alex's pills

Comments

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Has anyone addressed gluten sensitivity as a possible causative agent for the abdominal pain?

How is this boy doing now? Did he get any help?

Autistic people with self injurious behavior are continually hurt by hospital staff who don't know what the hell they're doing. The most therapeutic intervention for this boy would've been to give him 8 mg of Morphine and an IV Banana Bag, which is chalk full of B vitamins, magnesium and other holistic treatments to soothe his pain without overmedicating him. Dear God it's 2013, haven't we yet learned that autistic people are NOT psychiatric patients who need to be doped up on conventional meds. Shoot, a large dose of medical cannabis would've been safer than just leaving him in pain and adding more pain by shoving a bunch of pharmaceutical medications down him that cause more pain and suffering. What is wrong with this country? Shame on the entire system serving disabled for continually ignoring the reality that autistic people who have GI problems require specialized interventions that are safe, effective and NON aversive!NO MORE heavy medications. The only reason I say first give morophine is to simply stabalize the patient and eradicate the pain, but from that point all efforts should be focused on identifying underlying etiologies causing the pain and working quickly, based on research, to mitigate that pain through the least restrictive meds possible. It's time to include medical cannabis in the possiblities, since it also increases appetite and eases pain, without horrible side effects of mainstream meds. Wake up America.

OH MY GOD THIS IS HORRIBLE! WE CAN'T ALLOW THESE DOCTORS, NURSES AND HOSPITALS TO DO THIS TO OUR CHILDREN AND OUR LOVED ONES! THIS IS AMERICA OR IS IT? THIS IS THE UNITED STATES OF AMERICA AND I MUST SAY I AM NOT PROUD OF IT AT ALL! THIS YOUNG BOY SHOULD BE REMOVED FROM THEIR CARE IMMEDIATELY AND TAKEN TO A DECENT HOSPITAL WHERE HE CAN BE TREATED WITH LOVE AND COMPASSION! THESE ARE MONSTER'S THERE AND PURE EVIL! I PRAY GOD HOLDS THEM ALL ACCOUNTABLE FOR WHAT THEY HAVE ALREADY DONE! I PRAY THEY ARE ALL PUT IN PRISON FOR CRIMINAL CHARGES! PROTEST THIS HOSPITAL AND CLOSE THEM DOWN NOW! WE ARE AMERICANS! WHEN WILL WE ACT LIKE IT AND STAND UP FOR OUR BROTHERS AND SISTERS IN NEED! PLEASE HELP THIS YOUNG BOY AND HIS MOTHER!

Christine,
You are darn right it is the hospital's responsibility while he is in their care. I could not agree more, and I am also a nurse. That is why I found that document for his plan of care so horrible. They dumped all responsibility back on the mom. It was a total set up for mom to fail. In all my years working as a nurse I have never seen a document like that drawn up for a patient.
Jackie

I have a brother who is a pediatric nurse. Guess what, a majority of the children do NOT hold still or cooperate readily with the caregivers, making any tests and procedures a challenge, but also a necessity. When my autistic son was hospitalized for failure to thrive and refusal to eat, it was extremely difficult for the staff to do the stomach scopes and insert feeding tubes, however, it was their responsibility. When we left the hospital it was up to Mom to learn how to insert a feeding tube once a month into a protesting 10 yr old. Did it for a year, and today he has gained weight and improved. Perhaps we need to address our letters to the publicity and marketing departments at Loyola, who are responsible for how its image is perceived by the public.

It breaks my heart to read the story and see the picture of Alex in pain. What year are we in? This is 2013, wake up world, this is autism in mainstream medicine. Time to try alternative holistic medicine... because it WORKS!!!!! I wish I could reach out and help but I don't know if you would listen. So many people have you believing you need a test for treatment but if you were in the hands of a Doctor that treats autistic children... he would know what to do and not allow Alex to suffer like this. I know this for a fact because my son was just like Alex many years ago. Today, he is doing great and we are so, so thankful and grateful to have gotten the help he needed years ago. God Bless you and I wish for a fast recovery for Alex.

Behavior is a form of communication, and the main form of communication for non-verbal patients such as, Alex. If "Hospitalist" is correct, and medical facilities cannot perform medical procedures in people who behaviorally express their pain, and mental health facilities can accommodate behaviors but cannot perform medical procedures, then we have a serious problem. People with behavioral communication, need and deserve medical treatment as well.

I would move to a state with better services!
That is BS!!
I have a 15 yr old severely autistic girl with GI issues so I Know some of what they are going thru. The dr's look at you and say, What do you want me to do?
I told them! Test her,draw blood, & find out whats wrong just like you would any other 15 yr old! Dont let them be so stupid!

Please, Please, Please try digestive enzymes and acidopholus (available at any major pharmacy OTC).

It is a very inexpensive way to relieve much of the GI pain.
Hugs and Kisses!
Cammy

What choice do you think she has? She has been threatened by CPS that they will remove him from her care if she doesn't agree to Loyola's treatment plan.

Besides, he is very ill. What would happen if she, first, was able to physically get him out of the hospital - where would she take him? Loyola is the second hospital that he has been to and the second one that has failed him.

His mom isn't the problem. The problem is the professionals who don't have the b*lls to do what needs to be done.

Just curious, have you ever sat by the hospital bed of your seriously ill child and been treated like sh*t by the staff? Watched your child become more ill by the day? She doesn't deserve to be second guessed by you.

Im just curious as a healthcare professional if the conditions are that bad why would you leave your child there.

HI Hospitalist;
Wow.
It appears that most hospitals are able to competently sedate young children, teenagers and adults with claustrophobia, for an MRI for example, and apparently these hospitals are able to interpret the results .
Were you saying Loyola isn't competent enough to interpret an X ray done under sedation?

Your dedication to protecting the state of Illinois budget at all costs, is surprising in a hospital with Catholic affiliations...
What do you feel about the requirement to treat patients in emergency conditions appropriately, regardless of the ability to pay?
Given your interest in budgetry considerations for the government, how much do you think it has cost the medicare to reimburse for an inpatient stay for nearly a month,and for a lot of psych med prescriptions?
To be blunt it would appear that if there is a medical condition that needs to be treated, then identifying and treating it would probably save everyone money.And get a patient you obviously don't want out of your hair.

You probably aren't aware of how very bad your comment sounded. Just imagine for a minute that the young man died, and you were explaining either to a review board, or to a judge, your rationale for refusing to treat.

To the Hospitalist,

You say you're confused at the outrage over this story. What is confusing is your confessed belief that being knowledgable and up to date on this boy's underlying diagnosis, that accurately diagnosing and treating him while supporting and respecting his family, is not your professional responsibility. What's confusing is that your priority seems to be meeting your needs and the state of Illinois' fiscal needs. The boy's needs don't seem to matter.

No one expects you to know everything, but you are supposed to continually educate yourself so you can SERVE your patients. Here is a post on this site from last week that will help:

http://www.ageofautism.com/2013/03/alert-the-media-yes-autistic-kids-have-a-novel-bowel-disease.html

"Hospitalist" said:

"Nor does the State of Illinois have the money to provide those specialists if you don't have the funds to pay for them."

To all those that live in civilized countries, this is the barbaric, shameful American health care system.

To the hospitalist,
I am a nurse and a mother of a severely autistic child with multiple medical diagnoses. Perhaps it is time for hospital staff to be trained in mental health and dealing with these patients. How else will providers be able to care for the tsunami of sick "autistic" children heading our way? Actually, they are here....our healthcare system has just refused to notice.
Jackie

Poor child a Dan doctor would relieve a lot of the problems..hitting is to do with pain..take the pain away the hitting,bitting,etc goes away..

SHAME ON THE TROLLS WHO COME ON HERE TO GLOAT..

Angus

A Hospitalist

Your comment is brutal, ignorant, devoid of compassion. If this is the mentality then it is no wonder that the evil things which have passed have come about. Does it not occur to you that autistic people need medical help like everyone else (and maybe more) and it is horrific that their needs should be failed in this way?

It would have been one thing if you had said "we cannot cope, we are just not geared" quite another to express yourself with such contemptuous disregard for all human decency. I could sypathise with part of the predicament of Loyola, but not on these terms.

Algernon;
There is an old joke from the movie the Princess Bride"I do not think that word means what you think it means," in this case your use of "saints".
I'm sure there are plenty of people working there who see themselves as good and who have genuinely helped plenty of children in acute illnesses.But they may need to learn about looking after children with autism.
A saint does not let a 14 year old child stay in restraints for 19 days, and only realize how bad that is when the public tells them it is wrong.
A saint goes the extra mile, advocates for needed tests and pain relief for the non verbal.
They don't just decide to tie the child down on a bed for weeks, then decide the Mom must have munchausens if she complains.
There are plenty of people in the autism community who deal with things on a daily basis that it is pretty obvious the people at DCSF can't handle at all.

When Lisa Goes was in the room with the physician, the hospital had a chance to say their piece.They did not say "We have already done tests and ruled out GI issues" or in fact contradict any other aspect of the story as reported here.
In fact everything they said seemed to support exactly what was reported here.
If psychiatric treatment isn't working, it may take a saint to say "we might have been approaching this wrong" and figure out if there is a medical condition that needs treating.
I hoep you are right, and there are some saints at the hospital. A lot of people are praying for a saint to appear.

I believe I have read all of this story as you have reported on this site. There are a few unanswered questions (or maybe I missed them in the text?). Did you interview Loyola and DCFS to get their reasoning for Alexs' treatment? I assume since the mom is allowing pictures of her son to be posted on social network sites, that she allowed the medical staff to be questioned to get the full story. Perhaps I overlooked it - but it would be good to reiterate what the professionals involved had to say about this case? Speculation about Alexs medical issues is fine, but some facts would be appreciated.

I have friends at DCFS, and theirs is a thankless and awful job. Those people are often saints. I could not do the job that they do, or deal with the horrific situations that they have to deal with. The same goes for hospital practitioners and staff. I don't believe that an "us" and "them" mentality is going to get anyone, anywhere. But then again - I am logical and not reactionary. It just feels like there is more to this story than is being reported here.

I really hope Alex gets the care he needs and deserves, whatever that may be. I hope he is not in pain. I also hope that the apparent unbalanced reporting in this piece is not being used to manipulate peoples' emotions.

My heart breaks for this poor boy. I can't even imagine. My Autistic son was doubled over in GI pain for years. When he was four we took him to a local GI doc who did nothing but run a celiac test. Over the years he became self-injurious and aggressive, still doubled over in GI pain. Turned out he had a tethered spinal cord. Fortunately, we caught it in time (at age nine)and he had the surgery or he would have ended up paralized and incontinent. He has some residual nerve pain and occasional urinary accidents, which surgery would have resolved had it had it been found earlier, like, say, by the first GI doctor when my son was four! Another sad aspect to this story is he was automatically put on Risperdal for the aggression, which was ultimately caused by pain from a tethered spinal cord, not a deficiency of Risperdal. Aggression completely when away after the tethered cord surgery. When we removed the Risperdal it didn't even phase him, because he never needed to be on it in the first place! Yes, our children are grossly neglected by the medical community, in many cases. Yes, this needs to change. The time is now!

David Jenkins,

You might be new here but numerous people have tried to get the hospital and staff to understand that many of Alex's behaviors are connected to his GI issues. I will repost it for you along with some medical research. This is a serious medical issue and aggression and irritability are big red flags of pain:

Any unusual posturing, which may appear as individual postures or in various combinations: jaw thrust, neck torsion, arching of back, odd arm positioning, rotational distortions of torso/trunk, sensitivity to being touched in abdominal area/flinching

Agitation: pacing, jumping up and down

Unexplained increase in repetitive behaviors

Self-injurious behaviors: biting, hits/slaps face, head-banging, unexplained increase in self-injury

Aggression: onset of, or increase in, aggressive behavior

Facial grimacing

Gritting teeth

The Consenus of experts on Autism and GI issues:

"In persons with ASDs, gastrointestinal conditions can present typically or atypically as nongastrointestinal manifestations, including behavioral change and/or problem behaviors. Symptom severity can be quite variable in patients with ASDs, as in other patients.

The most common gastrointestinal symptoms and signs reported for persons with ASDs are chronic constipation, abdominal pain with or without diarrhea, and encopresis as a consequence of constipation. Other gastrointestinal abnormalities that have been described for individuals with ASDs include GERD, abdominal bloating, and disaccharidase deficiencies, as well as pathologic findings such as inflammation of the gastrointestinal tract and abnormalities of the enteric nervous system.

Gastrointestinal disorders can present as nongastrointestinal problems. For example, Horvath and Perman13 reported disturbed sleep and nighttime awakening for 52% of children with ASDs who had gastrointestinal symptoms (vs 7% of age-matched healthy siblings; P < .001). Children with ASDs who had reflux esophagitis exhibited unexplained irritability more frequently (43%) than those who did not (13%).13 Behaviors, including problem behavior, may be markers of abdominal pain or discomfort in individuals with ASDs.14,15

Behaviors That May Be Markers of Abdominal Pain or Discomfort in Individuals With ASDs:

Sleep disturbances: difficulty getting to sleep, difficulty staying asleep

Increased irritability (exaggerated responses to stimulation)

Mouthing behaviors: chewing on clothes (shirt sleeve cuff, neck of shirt, etc), pica

GER or excessive spitting up or emesis,
dysphagia, intermittent abdominal pain,
irritability, sleep disturbance, failure to
respond to conventional antireflux
medications

Non–IgE-mediated allergic reactions to
foods may be cell mediated. Examples
that involve the gastrointestinal tract include
food protein–induced syndromes
such as food protein–induced enterocolitis,
food protein–induced proctocolitis,
and food protein–induced enteropathy
syndromes.54,55 These disorders are
seen primarily in infants or young children
who present with abdominal
complaints such as vomiting, cramping
abdominal pain, diarrhea, and occasionally
blood in the stool

Mixed IgEand
cell-mediated allergic reactions to
foods are exemplified by eosinophilic
gut disorders, such as eosinophilic
esophagitis and allergic eosinophilic
gastroenteritis, or potentially other
entities such as atopic dermatitis or
asthma.58

The presence of gastrointestinal symptoms and/or related behaviors (Table 3), regardless of whether they are clearly temporally related to problem behavior, should be considered a strong and urgent indication for medical investigation. Clinical judgment will determine if medical investigation should precede or occur concurrently with behavioral and/or psychopharmacologic intervention; the latter, however, should never substitute for medical investigation"

http://pediatrics.aappublications.org/content/130/Supplement_2/S160.extract?cited-by=yes&legid=pediatrics;130/Supplement_2/S160

Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report
http://pediatrics.aappublications.org/content/125/Supplement_1/S1.full

Gastrointestinal Conditions in Children With Autism Spectrum Disorder: Developing a Research Agenda
http://pediatrics.aappublications.org/content/130/Supplement_2/S160.full

Differences between the gut microflora of children with autistic spectrum disorders and that of healthy children
http://jmm.sgmjournals.org/content/54/10/987.long

Autism linked to gut bacteria, study finds
http://www.thestar.com/news/gta/2013/01/28/autism_linked_to_gut_bacteria_study_finds.html

Immune activation of peripheral blood and mucosal CD3+ lymphocyte cytokine profiles in children with autism and gastrointestinal symptoms.
http://www.ncbi.nlm.nih.gov/pubmed/16494951

David Jenkins,
Pain can make anyone, ANYONE, irritable, inconsolable, hard to approach, leery of strangers, uncomfortable, unwilling to cooperate, etc. Realize that this is a man with autism trying to cope with pain and a boatload (see the bag) of drugs that may or may not be helping, that may or may not be interacting and causing more havoc and side effects for him. Abusive? I think it's the hospital that is being abusive to the patient by not accommodating his special needs, by refusing to properly medically investigate his symptoms to rule out physical causes, and by disrespecting, alienating, and stressing out his mother, who they are supposed to be supporting through this crisis.

How many people can attend a peaceful demonstration in front of this hospital in support of this family? I think that would be very helpful to bring attention to Alex and all the Alex's and also to put pressure on the hospital to let them know that the outcome will be scrutinized. If they move him before to a psych hospital before, then go wherever necessary. Shame both facilities. PROTEST the inappropriate and unfair treatment of this boy and his family!!!!!

Can someone organize this? Lisa? If the so called mainstream media won't cover it, then there are plenty of other news outlets (here included) that will.

People really dont understand and Alex mom isnt tell the whole truth. Alex is very combative with the staff and has abuse several of the medical staff.

Shocking but this is Pharma making money..SHAME ON THEM!!!

We don't have all the facts here. But one thing is for sure, is Alex is NOT getting any better or any sound medical treatment. This is so awful for Alex!!
Is there any Atty's able to have him released to go to another hospital or go home? How on earth are the parents holding up?
Who can get in to see he gets help?? Anyone in the area? This is all over the internet and I cannot believe days keep going by and hearing that he is still there.
Sending prayers but I know they need more.


Are we going to have to stop taking our children to hospitals, for fear of the worst?

"Should parents be forced to "lawyer-up" before bringing our children to the ER?" Christine, I think the answer to that is pretty obvious at this point.

Living in Illinois, I am not at all surprised at how this case has turned out. What Dorothy and Alex have been forced to endure is pretty much par for the course around here. But I do think it would be really helpful if maybe AutismOne could offer some sort of legal presentation regarding what parents should/shouldn't sign when seeking healthcare, at what point to get a lawyer involved (I'm thinking Day One), etc. Things are only going to get worse for all of us and it would be so helpful if we could all be better informed so that no other child has to go through what poor Alex has experienced.

Linda:

Well said. Alex's mom has been through hell because she turned to the Loyola medical community when her son needed help. It's disgusting that she has been forced into this crisis.

What kind of life do we have or will our children continue to have when we are forced as parents to constantly seek out legal support for adequate healthcare and educational services? Should parents be forced to "lawyer-up" before bringing our children to the ER? The IEP?

Those of you critical of the mother, please read the top line of this story:

"Update 3/12. Alex's Mom Dorothy Spourdalakis has a care plan meeting scheduled at the hospital - which, if she does not agree fully to the terms, will mean the removal of her son from her care and his being placed in DCFS."

If she does not do what they say, they will accuse her of child abuse and will take him away from her.

Hi, John - I'm confused. We should not jump to conclusions but we should conclude Mom is positioning herself for a payday by watching her son in agony for a potential lawsuit? I can speak from experience - my family is in a lawsuit that stemmed from my then 10 year old daughter with preverbal autism having been physically abused on the school bus - over and over - caught on tape. It has been almost 3 years and we are still in litigation and the mere thought of the money we might "win" on my child's back makes my stomach churn - it's like blood money. There is no joy, no victory. And no guarantee of some "pay day." It's a cruel comment to paint mom as a golddigger and I question your intent as a new commenter to this site. Yours in health. Stagmom.

Interesting story. It is a bit suspicious though, that the mother is so stubborn on keeping her son at Loyola and suffer. To me it seems more like she is doing it for the sake of exploiting her sons illness for a lawsuit for money/publicity. If she cared for her son that much, she should have taken her to a new hospital and then dealt with Loyola afterwards. Clearly in it for the money and publicity. Please, think about it for a couple minutes before we jump to conclusions.

After 23 days, it should be apparent this hospital is not going to compassionately care for Alex. So Mom should quit being so patient and compliant and either get her son out if there or bring in the lawyers AND advocates! This is her child's life, not a stand to show the ineptitude of care our kiddos receive. Also, where is the ombudsman??? Why has one not been brought in yet?

Could they hire Dr. Wakefield to help figure this issue out ???

Is there a place to donate to this family's expenses?

I just asked Fox in Chicago to please do a follow-up story.

"Please use the power of social media to bring Alex's ongoing tragedy to the public's attention. Here are some pertinent FB pages. Please post your comments on these FB pages and share this information so others can comment there, too.

Loyola University Medical Center has a Medical School which has a page on Facebook at: Loyola University Chicago Stritch School of Medicine Admissions Office.

The Loyola University nursing school is on Facebook at: Loyola University Chicago Marcella Niehoff School of Nursing

The Loyola University Medical Center's Facebook page has been merged with Loyola University's FB page: Loyola University Chicago (Right after I posted to this page, Loyola University removed the note that the Medical Center's FB page had been merged with Loyola U's FB page).

Please report to the Joint Commission which regulates hospitals in the area about Alex's situation. http://jcwebnoc.jcaho.org/QMSInternet/IncidentEntry.aspx This link can be pasted into your browser and takes you to the form to fill out."

At this site:

http://www.illinoisattorneygeneral.gov/rights/abuse.html

I found this: " To report abuse, neglect, or financial exploitation of an individual in a nursing home, hospital, or state operated developmental disability facility call:

Department of Public Health
(800) 252-4343
(800) 547-0466 (TTY)

I am wondering if Dorothy has made this call. I do not know if they would take the complaint from anyone not directly involved.

Take him home! Put him in his own bed, he's not being treated! This is heartbreaking, it could be any one of our sons, we can't allow them to be bullied to DEATH.

RE: Dymna R. Can you just post your info so that someone can contact you if they know the mom and forward her your info? Time is of the essence. They are transferring him to a psych hospital!

I have called 890 AM WLS news hotline leaving information and also my contact info. Hopefully we can get this story some legs.

I have now heard someone post that they are moving Alex to a psychiatric hospital. Their care plan does not include any GI treatment or care. The mom was threatened if she didn't agree to no care. Can anyone confirm this information? They'll just drug him out of his mind and not treat him physically! Please, someone get this mom's info and reach out to her with help!

"Update 3/12. Alex's Mom Dorothy Spourdalakis has a care plan meeting scheduled at the hospital - which, if she does not agree fully to the terms, will mean the removal of her son from her care and his being placed in DCFS."

So, this is the New World Order of hospital administration where parents are totally usurped. Where children (and the elderly too) lose their family advocates. When did this start? I believe most of the public is clueless as to our loss of these civil rights. This was not always the case. Reading about this ordeal has been a rude education for many of us. Corporations and their lawyers are draining all humanity and care from the system. Who doesn't, when they are trying to get medical help, just go ahead and sign the forms put in front of them? (And, what choice do you have if want help?)

As Carrie Boden comments:

"...If their laws are like Ohio's,she lost her rights when she took him in.Parents don't have the right to sign an AMA form for a minor & leave,like we can do for ourselves & go somewhere else..."

We need to change back the laws written by these special interests in order to protect our loved ones.

Disgraceful how this can happen in 2013. Alex needs to be removed immediately from this place to a hospital where he can have the necessary tests that he requires to diagnose his pain and treat him. He needs to be living in the community with family and friends with sufficient support to help him lead a dignified life, a life without drugs and restraints. He could have ABA therapy to help with his language which would help with his frustration, there are many ways that Alex could be helped.

The Loyola Medical Center should be closed down as this is not care, it is inhumane. PLEASE SOMEBODY HELP ALEX TO GET OUT OF THIS PLACE, HE NEEDS YOU.

How do they know he hasn't accidentally injested something that has caused twisting of his intestines? I mean it may not be an earth shattering problem but obviously it is causing this boy great distress! (Ex marbles)

I have received a response from EBCALA, "We are aware of the situation and trying to assist a local attorney". Thank God for that! I hope it is not too late!

Susie, this is my oldest son, not my son on the spectrum, he's still a work in progress, however, doing very well. I do wonder if those that show symptoms at birth experienced their toxins/infections in the womb, much like one very infectious cause of autism, rubella or the toxic rx, valproic acid It seems in most everything I read "regressive autism" is the minority, but in everything I SEE it IS the epidemic.
Why isn't someone stepping in to help this boy and his family? Wakefield should have him flown to a clinic where gastro docs familiar with autism can help. I can't stand to watch this.

I have been following this story since Friday. I don't have any contacts in Chicago but I have been doing everything I can to spread the word and have filed a complaint with the joint commission. There is too little information being given out and everyone has so many questions! Does the mother have an advocate or an attorney? If not, why not? I understand that money is an issue but aren't there organizations that do pro bono work? After three weeks of agony, why are they still stuck in the same situation with no change? This isn't a third world country where lack of care would be understandable, but CHICAGO! There are hundreds of autism moms and dad living in the area and someone must be aware of the situation through autism media. Does no one have any connections that are able to help this family?! Is the mother stuck because of consent forms she has already signed? Why has the hospital not done any GI testing when that is clearly where the pain is emanating from? Is Dr. Anju Usman (located nearby in Naperville) aware of this situation and can she do anything to intervene, or know of someone who can? I think this has been handled very badly from the start with Alex being escorted to the hospital by police and paramedics, as that set a bad tone for how Alex would be treated. I'm sure his mother thought Alex would finally get the help he needs. I'm sure so many of us feel this would have never happened if this were our child and we were in charge. But you can't know that. This hospital system seems to be a monster that can't be fought against. For the love of God, will someone do something to get Alex the help he needs?! I am praying! But it is so frustrating to not see anything changing. :(

To the moderators:Is there a way to contact the mom?I live in the area and would very much like to offer my support/help to her.I work in the medical field.(You dont have to put this in the comment,BTW)

Barbara,

That's excellent news of your son's remission. I am familiar with horizontal transmission, although with my family of four as well as many other unvaxed kids I know, there was something wrong at birth or shortly thereafter. My kids have had titers and they have no measles virus or anything else in their titers that would point to vaccines. I believe we are dealing with a lot of infections, that were transferred in my case to my children during pregnancy. In our case, it was Lyme disease and my oldest son with ASD got the major brunt of it since he was my first. My kids are also home schooled, and never went to day care. My last vaccine, the DT (not Dpt) was 8 months before he was conceived. Although it is possible that he got some remnants of that, perhaps adjuvants and such that stayed in my system, my son's titers show nothing with diptheria or tetanus. I think there are a lot of unvaccinated kids getting Lyme and other diseases from mom during pregnancy. We are still an exception to the rule, but we are here.

Tim Kasemodel- I have plenty of compassion and for you to assume that I do not is childish and rude. I simply stated how I felt and what I would do for my own child and wondered why she hadn't just removed her son from that horrid facility that they are calling a hospital. This in no way reflects the fact that Alex's mother isn't distraught over the treatment of her son. I just hope and pray that something/ someone is able to help them BOTH.

BTW, I FOUND THIS DISTURBING INFORMATION BELOW JUST NOW:

Posted by Age of Autism on March 12, 2013 at 5:46 AM | Permalink | Comments (1)
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John Stone
Alex Spourdalakis and The Future

Update 3/12. Alex's Mom Dorothy Spourdalakis has a care plan meeting scheduled at the hospital - which, if she does not agree fully to the terms, will mean the removal of her son from her care and his being placed in DCFS.

I don't understand why someone with money who cares about these kids hasn't flown in the specialists... Hello! Where is Jenny when you need her? Her X, Jim?

I have been down this road with my now 24 y/o son who was diagnosed with Aspergers, PDD-NOS; severe ADHD by duPont and CHOP. What NO ONE tried to find were the root cause of all of his symptoms. MOM did. Both of my sons were born with lyme disease and it manifested itself by the time we found it in both their brains (neurolyme). The son with all the labels, whom I was told would be pushing a shopping cart, never go to a prom or drive, owns 3 cars, his own business since he was 16 and is finishing college. I beg you to look into lyme disease as the cause and it will help the gut problems as well. IF he is on abx he must have the likes of Florastor to keep the good bacteria in the gut going. Feel free to contact me. Joanne http://www.lymeinducedautism.com/lymeautismconnection.html

If their laws are like Ohio's,she lost her rights when she took him in.Parents don't have the right to sign an AMA form for a minor & leave,like we can do for ourselves & go somewhere else.Learned while sitting in an E.R. for 3 days w/my son waiting on a bed.If she tried to leave w/him,even to transport to another facility,security would detain her until police arrive to arrest her.Children's services would obtain temp custody of her son.The entire system is just wrong.Though,at this point children services may actually help w/situation.

Thanks, Tim. I do understand but it still bothers me. You know I am raising my grandson who has autism. I have seen everything with him except for removing his clothes in public. Thinking of you and your son.
maurine

Susie, My son did not have the MMR, so I assumed the regression was related to his dtp, the one he got the day his brother received his MMR. Wrong, as Dr.Wakefield explained, there can be horizontal transmission , it was this guy who experienced a measle like reaction, all the while his brother was bent over with gastro pain for four months and came out unscathed. I am very careful now, I did not send my youngest unvaccinated child to nursery at church, or to be babysat by those with vaccinated children, and he is fine. I also treat bathroom accidents as hazmet situations for fear that persistent measle virus lives forever in the gut of those infected.Since they have found vaccine derived measles in those never vaccinated it's time for protective measures. For my oldest son, who is not asd, and now a young man, his Crohn's has been halted in it's tracks as Debbie suggested there is a treatment that surpasses any rx in providing a state of remission and freedom from not only the bowel episodes and the pain, but freedom from the disease process that extends out from the gastro system ,one we don't understand, one that causes temporary blindness, as was with my son, torturous pain when swallowing, issues with hearing, numbness in extremities and an occasional seizure. Seven years!! of remission!

I received a reply today from the Joint commisson below.

BTW: Someone asked why there were no sheets on Alex's air bed. Usually do not put sheets on the airbed to prevent skin break down, and the medical staff just use chucks (the pads through on the bed to keep it from getting soiled).

Thank you for contacting The Joint Commission Customer Service Center.

By way of this reply your inquiry is being forwarded to our Standards Interpretation Group for response.

If you should have additional standards related questions you may submit your inquiry via the Standards On-Line Question Submission Form

See link:

http://www.jointcommission.org/standards_information/standards_online_question_form.aspx

To report a complaint about a Joint Commission accredited and/or certified health care organization, please contact our Office of Quality Monitoring:

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

E-Mail: complaint@jointcommission.org

Fax: Office of Quality Monitoring - 630-792-5636

If you have questions about how to file your complaint, you may contact the Office of Quality Monitoring at 1-800-994-6610, 8:30 am to 5 pm, Central Time, weekdays.

Thank you,

Linda Spychala
Customer Service
The Joint Commission
One Renaissance Boulevard
Oakbrook Terrace IL 60181
Ph # 630-792-5800
Fax # 630-792-3202
email: lspychala@jointcommission.org
Website: www.jointcommission.org

I'm not trying to take away from this story, but feel that I need to speak for my children. When people assume that these kids are sick because of vaccines, it's almost as bad as those who say this kid has "autism" therefore, he can't be treated with traditional medicine. I am one of a small percentage of people who never vaccinated my children, however they are all sick. One is "on the spectrum." Please don't assume that we have all been damaged by vaccines because it's just not true. I know others with completely unvaxed kids who also have "autism." It's not so simple. We are dealing with infections, metals, toxins, etc. etc. I am convinced that vaccines definitely have adversely affected many children, this is why I didn't vaccinate in the first place. However, they are not the only reason why our kids are sick. It feels very isolating when the community ignores those of us who are unvaccinated.

I emailed the tip emails for abc7 in Chicago, and the Tribune. Perhaps if they get enough requests to cover the story, they will put more focus on this case.

I am a legitimate high functioning autistic person myself and I know how this teenager feels. every day I do my " business" in the "latrine" there is blood and mucus in the stool. I was colonoscopy myself in 2011 at age 20 and the finding were inflamed blood vessels and angioma like growths as well as illietis and esophagitis which doctors erroneously concluded were Neurofibromatosis related I have that disase. Lies, nf tumor re on the nerve and are so rare in the colon that a doctor will never see one in is career. it is possible I have tuberous sclerosis the natural autism disease as that colon problem I have is a symptom. just imagine if I was this poor teenager in layola hospital and was OD on psych med which almost killed me as well I tried Haldol and risperdol and was in freaking agony. out ere in so California there is a disability rights organization called disability rights of California I believe they are in others state as well.

Commentor Linda is right about "hospitalists." Never sign any papers that will commit your, or your loved one's, care to a hospitalist. He/she will take over all medical decisions from now to forever and the contract is difficult if not impossible to break. For all we know, Alex's mother may not have the choice to remove her son from his appalling surroundings, or may have been persuaded to believe she doesn't.

Has anyone contacted the Illinois State Medical Board? Is this child being held against his will? Why is the mother tolerating this prison camp type treatment for her son? A lot of this needs to be clarified. She would also have to consent to anything they are doing to him so I can't undertand how she is allowing this.

Has she never heard of a DAN! doctor and how come no patient advocate in the hospital is helping her?

Can someone please clarify: Is this child be held against his will? If not, why doesn't the family move him out of there?

I echo J's thoughts. Why is he not been moved to a different hospital? Where's the patient advocate, every hospital has one?

I can't help but wonder if there is not something fishy going on here. You ask for our help in making this story visible to the world yet, Alex is left in that hospital by choice. He is not a prisoner. Call an ambulance and take him elsewhere.

http://jcwebnoc.jcaho.org/QMSInternet/IncidentEntry.aspx

please everyone, go this this link copy and paste this entire post and send to the joint commission. there is a space on the form where all you have to do it fill it out, paste this link in and send, they need to be bombarded with this!! This family needs everyone to take the 3 minutes it took me to do and fill it out and send it, I am beyond sick following this story as I have a son Alex with severe GI issues and have been in hospital situations with him that were horrendoues, but pale in comparison to this.
How this boy is enduring this after all these days is beyond comprehension. Is there not an autism group in Chicage that can picket out in front of this torture chamber, hand out flyers,hold a peaceful demonstration, etc??? Val

I have a son with severe autism so this story about Alex is extremely distressing for me. I am going to share some information that I hope will reach Alex's parents. We have been treating our son with medical marijuana for the past 3 years, with amazing results. It has been nothing short of miraculous. Our son went from being extremely anxious, highly aggressive and destructive, to actually being able to enjoy and "have a life". Please believe me when I say we tried everything that his doctors and therapists advised - Private speech and OT, an ABA in-home program, gluten and casein free diet, mega vitamin and nutrient regiman, auditory training, secretin infusions, and finally prescription medications...you name it, we tried it. Our son remained low-functioning and highly aggressive. The decision to try medical marijuana was not taken lightly. It took a while to "wrap my head" around the idea, but after some research into it, we decided to try it. I just have to say, without question, giving our son medical marijuana is the very best thing we have ever done for him. It has drastically improved his quality of life, more than any of the other therapies or medications. Along with the decrease in anxiety and aggression, our son has experienced an increase in verbal ability and social awareness. We love our son more than life itself, and just want him to be the best that he can be, and for him to be happy and free from pain. My son also experienced bouts of GI distress and had explosive bowel movements. I could just tell that he did not feel well most of the time. I know that the medical marijuana has helped with my son's gut sensitivity, and I am convinced that Alex would benefit from medical marijuana too. I have done quite a bit of research on medical marijuana, and I am convinced of its safety and effectiveness for alleviating pain, and its' ability to aid in healing many illnesses, including GI issues. Alex is suffering, and he deserves the chance to try this medication. I understand that medical marijuana is not legal in Illinois, but that should not matter. This child is in pain, and he should not be denied access to this medication. If he were my child, I would try the medical marijuana in the form of oil or juice. Please, please, please consider this medication for Alex. There are several stories on the internet about the effectiveness of treating autism with medical marijuana. Please, you owe it to Alex to research this for yourself and provide this very healing medicine to him. My heart just hurts for him, and I know this can help him. Dorothy, if you read this, and would like more information from me, just respond to my comment. I would be happy to help in any way I can.

Remember when a patient's physician handled an in hospital crisis? The physician was chosen by the patient and would have a relationship with the patient and family ideally based on trust. If the physician did a bad job, the physician could be fired by the patient, an incentive to do a good job.

Since the 1990's, the hospitalist specialty was created. Now more and more office doctors of most specialties do not admit or manage hospital patients, will only attend for consultation upon request, leaving the patient's management to a hospitalist, a stranger that does not know the patient, that the patient does not have a relationship with, and that the patient did not have an opportunity to choose and hire. Unlike the private physician that used to follow the patient into the hospital, the hospitalist works for the hospital, not the patient, so does not have to fear losing business if the patient is not satisfied with his care.

Just saying - I think there may be some pros to the hospitalist specialty, but I suspect the cons greatly outweigh them, at least for the patient. If Alex had his own doctor coordinating his in patient care, he'd be much better off and his family would have much less stress knowing that someone that knows Alex and his history, and that they know and trust is in charge of the crisis.

If his mom can produce an exit of Morgellons on the skin with animal wormer paste and see the spirochetes exit with a micro magnifying glass

surrounded in Junk DNA they build around them with sticky cholesterol lipids they can treat the truth and cannot deny he is sick, not syndromatic.

It is easiest in palms of hands or soles of feet...

Or perhaps on his rashes would get a great exit...

Shame is upon the ignorance of the Medical Mafia killing our kids.

It can take 5 mths to culture these gene sharing critters and they are NOT going to make enuf antibodies to satisfy the strict CDC/IDSA guideline killing the people on purpose when China tells us you only need ONE BAND to say pos. and NO ELISA WILL WORK.
http://www.ncbi.nlm.nih.gov/pubmed/23470960
So out of 122 POS. cases they were able to find 48 NEG. with a 94% POS. rate at week 16 of cultures.....While we know some Autistic pts. do not exhibit lyme symptoms until 1 yr. old.....

Morgellons spirochetal prion proteins sharing their genes-- why all those Autism babies and syndromatic cannot tolerate gluten...
http://f1000research.com/articles/2-25/v1

But it NOT just in the skin....ITS IN THE GUT TOO...
Segmented Filamentous Bacteria in human ileostomy samples after high fiber intake.
http://www.ncbi.nlm.nih.gov/pubmed/23406300

Of course not all labs can have advanced detection like China and France that can even detect GMO before it gets off a ship. But hey that's the Corrupt America stupid way....
http://www.youtube.com/watch?v=LRQ-NhEkLXU&feature=youtu.be
http://www.youtube.com/watch?feature=player_embedded&v=yOno_2m_8LY

If they fail to do their job...FIRE THEM AND SUE THE CRAP OUT OF THEM FOR FAILURE TO TREAT!

The email I sent to the Joint Commission bounced right away, but they have a Facebook page and I was able to leave a comment there.

Just to comment on the sheet. It may be that he is on an airbed to prevent pressure sores. I know that when I practiced there were beds that we did not use sheets on and the rationale was to prevent pressure sores. The sheets could get bunched up under pressure on skin and cause problems. Hope this helps.
Jackie

J,

Blaming the parents in this case get us no where. Did you ever consider what kind of scenario may have landed them in this position in the first place? I have, and it does not involve blaming the parents. I am sure that everyone (with the exception of of the hospital) is doing the best they can to get through this.

What does it mean for our community that we have become so divided that another fellow autism parent finds that contempt is easier to reach for than compassion?

I hope that you can reach within yourself and look for understanding in what must be a mother's worst nightmare.

NO ONE should have to suffer this way autistic or not. Just wondering as to why his mother hasn't removed him from this medical center. I'm sorry but as a mother and one who HAS a child with autism I would NOT for the life of me have my child in a hospital for 1 day let alone 22 days that wasn't giving him proper care. The mother is just as responsible in my my opinion as the medical team. There is NO reason that she can't leave with her son and seek medical attention somewhere else. I do believe that someone should get this child a lawyer etc. and sue the pants off of ALL staff at LMC. Discrimination in ANY manner let alone against a child who can't even speak up for himself is just deplorable! If it was one of the staff's children I'm sure this wouldn't even be news. I DO hope and pray that Alex gets the medical attention he needs.

Maurine, maybe I can help explain your dignity concerns.

My son is nearly 16 and whenever he is at home he is naked, and allowed to be naked. When outside home he will wear clothes but often rips them to shreds before he gets home. Giving our son dignity means giving him what he needs to be comfortable. Remember that Alex in the photos you see is probably in great pain. When I look at these pictures Alex I see my own son.

From Wikipedia:

"Dignity is a term used in moral, ethical, legal, and political discussions to signify that a being has an innate right to be valued and receive ethical treatment."

Ethical treatment in Alex's case may be for him, to be as comfortable as he can in his particular situation, not constrained with a gown that he probably chewed up long ago. A diaper is also sometimes not so comfortable either - I know my son cant seem to find one that fits well that he will not tear so it isn't tight, and loose ones are worse for him. There is no in-between.

Continuing from Wikipedia:

"In ordinary usage it denotes respect and status, and it is often used to suggest that someone is not receiving a proper degree of respect, or even that they are failing to treat themselves with proper self-respect."

Alex is treating himself the best way he can. Self Respect for Alex, and even my own son means something completely different than what one might expect. It means taking care of themselves in ways we might not understand, for instance, head banging, spinning, toe walking..... ways that these idiot quacks at Loyola are treating with the wrong protocols.

Lesly asks:

....and why is there no sheet on his bed?

I can only guess but here you have a patient with severe GI symptoms - it is much easier to clean up - believe me.

We have a hospital mattress for our own son and he sometimes does not allow sheets on it - tears them right off, especially when his GI symptoms worsen. We don't question why...

Because we respect his dignity.

Hope this helps.

Occupy Loyola. I see the American Academy of Pediatrics, a few miles away, has chimed in to protect and heal this child.... (insert irony emoticon.)

I called Joint Commission Customer Service. At the mention of Alex's name I was interrupted and told they accept complaints only by email at complaints@jointcommission.org

My email was returned with the error message "mailbox unavailable."

At least by now they've heard of Alex!

Alex needs a lawyer NOW. Someone from EBCALA?

Anne - I know I'm preaching to the choir when I say that the so-called mystery of "autism" makes the suffering acceptable and the inaction a mattter of practice. He needs a compassionate thinking doctor to step in and stop this nightmare but I'm afraid that isn't going to happen in a mainstream hospital as Raymond has pointed out.

There but for the grace....everyone of us with children who are non-verbal or with limited expressive language could end up in this exact place. My worst fear and why I am so thankful that bio-med, diet and I'm sure some luck has kept her healthy. We had one GI blockage crisis emergency room visit when she was three and were told by a snide intern that "kids get sick" and only after we pushed and obnoxiously insisted on an IV and enima was she reluctantly treated (i'm sure to just shut us up!)After she relieved herself of what seemed to be her own body weight - the intern was stunned and speechless. We got out of there and haven't had to return.

We have to keep talking, exposing and showing the world what's happening to our kids!

Barry I could not agree with you more! Our children don't have Autism they have encephalomyelitis presenting with Autistic like symptoms caused by an adverse reaction to a vaccine when they were babies! All the time and money wasted on the Combating Autism Act! What a crock! The Pretending to Combat Autism Act, as Bernie Rimland called it before it ever passed. It was then and is today the Pretending to Combat Autism Act. What has all that time and money done for our children? NOTHING!!except direct attention away from the true cause of our childrens suffering. VACCINES! Poor Alex suffers in a hospital with clear signs of GI disease and these doctors if you can even call them doctors won't even do a GI workup. I'm so upset for this poor family. Please leave that hospital and find someone who will do the tests and give him the meds he needs to be free from the pain.

I fully understand why people are so outraged by this story, because I too am heartbroken by the way this child is being treated. And to be honest, it make me more than just a little uneasy, because deep down I know that this child could just as easily be mine.

But what I'm struggling to understand, is why no one seems outraged by what put this child in that bed in the first place. The same thing that has put ALL of our children in their tragic states of abysmal physical health.

Little Alex is not in that bed because of autism, he's in that bed because his health was ravaged by the vaccines he received when he was still just a baby.

Autism is just a name, that was cleverly invented by the same medical "experts" who KNOW they're responsible for poisoning our children. It was invented to create a shroud of mystery, around something that's really not mysterious at all.

In my humble opinion, when we allow them to call it autism, we are literally protecting them instead of the children we all know they've hurt.

Autism IS vaccine damage, period. And the only way to stop the madness, is by exposing this truth for what it really is.

That will never happen, as long as we continue to call it autism.

.........and why is there no sheet on his bed?

I called the hospital 3 days ago and will now go call the joint commissioner - but i'm wondering why Alex is still there. shouldn't he go to a different hospital .......... like 21 days ago? Why on earth would you keep him there? What help is he receiving?

DLD--I get that and I know children who do and have done that. But, then again, the whole world wasn't viewing them either.
Maurine

My little guy is the same about clothing. This was especially true when he had such pain issues.

Poor Alex really does look uncomfortable. Perhaps Loyola needs to brush up on their assessment skills. If they can't see the nonverbal cues of medical problems and pain in Alex perhaps they ought not be practicing medicine. This situation is so upsetting.

Well Maurine, I can't speak for this family but I know my autistic child at one point hated wearing clothes and would frequently take them off screaming. If the boy is already in agony perhaps they want to allow him to be as comfortable as possible.

Why the hell can't he put some clothes on? At least some underwear or shorts. This is really bothering me. I find it outrageous He's a human being for gods sakes. Give him some dignity.
Maurine

Call made to the Standards Department. I hope this will change his care...UNbelievable!!!

I just contacted the Illinois Protection and Advocacy Group in the hopes that it will provide legal counsel for Alex and his parents.


My experience with Eric and hospitals over the years are similiar to what this poor Alex is going through. Nightmares for Eric and us!!!! They either chained Eric to a bed like at Trinitas Hospital in Elizabeth, NJ or locked him up in a room by himself in St. Clare's Hospital in Boonton, NJ (where he was born), Greystone Psychiatric Hospital in Morris Plains, NJ or John Hopkins in Baltimore, MD.

Hospitals in the US or anywhere else can't handle kids with autism....period. I dealt with what were supposed to be premier hospitals in NJ and Maryland like John Hopkins. Forget about it!!!!!

I don't think there is a hospital in God's green earth that can treat a child/adult with autism in a civilized manner.

It's called discrimination! Where are the lawyers?

http://www.jesuit.org/about/provinces/ Contact every priest and every Jesuit organization you can about this

It's a pity that the staff at Loyola Medical Center fails to see their own child when they look at Alex. How much suffering is acceptable when the victim has autism?

Anne Dachel, Media editor: Age of Autism

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