Living in the Real World

From Jenny Allen: I don't have personal experience about other countries, but in Scotland where I live, peanut, egg and other child allergies are profoundly changing procedures and protocols in schools and nurseries. Baking and eating the baked items, used...

How Mercury Triggered The Age of Autism

Autism Public Service Announcement

Canary Party Vaccine Court Video

A Glimpse into Autism

Meet Our Advertisers


Olmsted's Original UPI Series

  • The Age of Autism Tag

« Alert the Media: Yes, Autistic kids have a Novel Bowel Disease | Main | Day 22 of Autism Agony at Loyola U Medical Center »

The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center

JeannaandAlex


By Lisa Goes

On Sunday morning, Jeanna Reed of AIM (Autism is Medical) and I visited Dorothy and Alex Spourdalakis, who are now on their 21st day in the Loyola Healthcare System.  (From left, Jenna, Godmother Agatha, Alex, Lisa).

The restraints have been removed and replaced with a nameless security guard dressed in scrubs and a charge nurse by the name of "Debbie" who wore no identification. They sit in a dark corner of Alex's room beside the door, in silence, until he emotes.  

"Don't spit Alex!  Don't hit Alex!", the guard barks like clockwork as Alex rises from his bed and lumbers toward him.  

The phone and call light have been removed from Alex's room as both were considered "safety concerns."  Dorothy must now leave the room to make a call, leaving Alex unattended. 

While the security guard remained a constant, another nurse we could not identify by badge entered and left.   A physician who referred to himself as "the hospitalist" and a colleague came in to examine Alex.  

By that time, he'd awakened and was moving about the room, grabbing food and attempting to speak.  While the staff would not allow a phone or call light, a set of silverware, knife included, was present on a meal tray.  

With an air of affability completely inappropriate for the occasion, the colleague smiled at Alex and told him he was going to examine him.  With little protest and a few pulled chin hairs, he was able to briefly listen to Alex's lungs and midsection.

As the mother of a child with autism, I was wondering how Alex was keeping it together. As he rocked naked on a  bed amidst a room full of strangers, he presented only sensory problems, which he self-regulated by chewing on a strip of sheet from his bed.   Despite Loyola's advertisement of medical professionals that are "always in reach," there was nary an autism specialist among the group. No therapists. NO BCBAs to educate the staff handling him.  No occupational therapy. Not even a chewy tube to help facilitate his need to bite. 

One of the nameless nurses questioned Dorothy's judgment in allowing Alex to chew on a torn piece of sheet. "I'm just concerned he'll choke" she said.   With an educational and articulate tone of authority, Dorothy explained how the sheet was soothing his sensory needs. Instead of justifying his behavior, or lashing out at her ignorance, Dorothy simply educated her.  When Dorothy speaks, though, most staffers gaze at the floor and roll their eyes. 

Alex finally became irritated with all the chatter and bodies in the room. With the deft reflexes only the parents of small toddlers and autism parents possess, Dorothy sprang into action, shuffling his naked teenage body off to the bathroom for a shower. 

"So, what is the medical plan in place for Alex?"  Jeanna asked.  Prior to this question, there had been much conversation about Alex's constipation and uninvestigated bowel issues.  The hospitalist smiled through his response, "While I cannot do the procedure today, I can at least introduce Miralax."  Jeanna questioned the point of this, since magnesium citrate was already attempted, to no avail. "What are you treating, though?  Have you considered an X-ray, CT scan, scope?"  Jeanna asked.  

The doctors shrugged their shoulders.  

Since Alex remains in a state of agitation, experiencing only fitful and short-lived sleep as well as extreme pain, Jeanna remarked that the psyche/behavior model Alex's medical team has enforced thus far did not appear to be working.  On this point, the hospitalist and colleague nodded in agreement.  I handed him a paper by Dr. Arthur Krigsman.  However, the medical team at Loyola had already been given extensive research by the members of AIM. "We went over it a little bit," was the hospitalist's response when asked if they'd read the data. 

"We are thinking we may give him something  for his allergies and see if that helps with the discomfort,"  the colleague commented.  It was then that Agatha, Alex's godmother and Dorothy's only support, could take no more. "But how do you know?  How do you know what is bothering Alex when you do not test? Why do we give him medication after medication without knowing?"  

The hospitalist rested what was meant to be a reassuring hand on her shoulder. 

Jeanna continued to run off the litany of medical issues that may be at play. "I know it sounds crazy, I do. But many of these children present with bowel disease and mitochondrial dysfunction.  He could have GERD, duodenitis, esophagitis, ulcers in the small intestines, colitis. How can we know if we don't test?"

"I am just looking for things I know we could treat him with today,"  the hospitalist responded.  

" Well, clearly the rash is subsiding, so adding another med would not work when weighing the risk/benefit ratio," Jeanna commented. The hospitalist nodded.  "He could have an underlying mitochondrial or metabolic disorder. You are feeding him all protein and he may have an underlying metabolic disorder. How do we know if his system can handle that?" Jeanna asked.

"My immediate concern is Alex's safety," he replied. To me, a non-medical person who has been forced into the awful and tedious practice of having to read medical journals and scientific studies, this response is a non-answer disguised in the form of concern. 

The colleague piped up. "Autism is very much a mystery, you have to understand."  

And, that ... my friends ... is when I lost it.  "No!  No! It's not. It's a medical illness that causes bad behavior.  All you have to do IS READ*!"

Dorothy and Alex remain in Loyola with Agatha as their only support.  No gastrointestinal or mitochondrial work ups were scheduled during our visit. 

*Dr. Arthur Krigsman Theories of Gut-Brain Axis Involvement in Childhood Developmental Disorders

* Pediatrics Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report

The Pediatrics Study, which included some of the top GI and mitochondrial specialists in the nation concluded:   The care of individuals who are nonverbal or have difficulties in communication or who display self-injurious or other problem behaviors presents special challenges. Nevertheless, the approach to evaluation and diagnosis of possible underlying medical conditions, in particular gastrointestinal disorders, should be no different from the standard of care for persons without ASDs. Management of cooccurring gastrointestinal problems in individuals with ASDs usually begins with the primary care provider and may eventually warrant multidisciplinary consultation.

Lisa Joyce Goes is a Contributing Editor for Age of Autism, Co-Founder of The Thinking Moms' Revolution, and Co-Author of the book, The Thinking Moms' Revolution.


Comments

Feed You can follow this conversation by subscribing to the comment feed for this post.

As an absolutely tragic end to Alex's story, he was fatally stabbed today at this apartment. Few details about this case are available at this time.
http://da.feedsportal.com/c/34253/f/622809/s/2d194ae5/l/0L0Schicagotribune0N0Cnews0Cchi0Eriver0Egrove0Egrand0Eavenue0Ehomicide0Epossible0E20A130A610A0H0A0H61270A470Bstory0Dtrack0Frss/ia1.htm

The standard of care for a severely autistic patient in this bad of shape should be (under sedation) a full MRI body scan, abdominal ultrasound (most autistic people can tolerate this without sedation), colonoscopy (give demerol to calm) and go from there...If a person can't talk you have NO idea what's going on until you test. Hospitals should ask for federal funding for special cases like this.

This is soooo wrong, on so many counts! I would contact anyone that pays for this substandard care. In NO WAY is this legal. She may not be able to leave because she may not get care somewhere else because of leaving AMA, which means the insurance company won't pay for the care (lack of care really in this case!) and so she is in a bind!

I am just disgusted with our medical system these days. Only if I need surgery for something broken would I ever enter a hospital. Then, get out as soon as I could.

My thoughts and prayers are with this family.

I am completely shocked and outraged at the neglect of this hospital and it's doctors and nurses! I have 3 children with ASD in varying degrees and I know the issues this mom must be going through. But for the life of me I can NOT fathom WHY these doctors and nurses are treating this scared and very SICK young man like he has the plague!! Autism is NOT contagious, but I fear that stupidity and ignorance are. They need to just do the damn tests and get Alex the medicine and treatments he needs so he and his family can go home. If I were Jenna, I would definetely be calling the media, congressman, senator and anyone else I could think of to get my story heard and help for my son. My thoughts and prayers are with this family. I am going to hug my children and give thanks that their doctors and hospital are nothing like this one (as I also live in Illinois). It's past time that everyone in and out of medical school was schooled on the realities of Autism by those who actually live it.

Hi this poor, abused, neglected young man could have a food allergy. This may be why he is constipated or agitated. Has anyone tried to offer him a communication device to try? Pictures to point at to communicate? Why isn't he home with his family? Why is he in a bare room on a bed mat with a sheet? Why does he not have anything he can look at, watch or listen to, to provide some comfort while he is bored out of his skull and quite possibly frightened to death?! How would these Doctors, nurses, "Security guards" like to have someone stand and watch you and their only communication they offer you is to "Bark orders and demands" at you? Dogs get treated better then this young man. It disgusts me to read this and to see that this is happening in the USA?!! The land of the free? B.S!!! God bless him and his mother and their support. Disgusting excuses for Medical professionals. Do the D@mn tests that he requires and deserves. Help him to live as "normally" as possible for him. He has it hard enough being diagnosed under ASD!!! I wonder if it was one of these professional's children would things be differently!!!

I am curious as to why Alex's primary care doctor has not been to see him or has not been consulted as to which facility would provide better care than Loyola. I do not understand why Dorothy hasn't signed him out of the hospital, called the local media, her congressmen and senators. I have a 5 yr old without health issues like these, and there is NO WAY I could stand watching this charade for 22+ days.

My daughter with autism has a cavity. We have to wait until MAY to repair it - she needs sedation and the dentist is only at the hospital once per month. If she were in pain? That's 2 months of waiting. Because of her autism. For all the blue lights and awareness the world knows NOTHING about reality and autism.

"Autistic children tend to attack medical staff due to not knowing them so doing a work up isn't the issue staff saftey is probably the concern".. that seems pretty ignorant of a statement to me.. something that just feeds into the typical ignorance and thus, this subpar treatment of a HUMAN BEING, that parents of autism have to deal with on a daily basis.. so.. what.. disabled children are just second class citizens? the whole point of this is this - mama knows her baby.. that's all there is to it and NO ONE should have argued.. she shouldn't have to be enduring this heartbreak.. mama could have tried to call the cops.. reported that the hospital was trying to kill her child by holding him hostage and not treating him or allowing him to receive the treatment he should have.. i am so ashamed of humanity sometimes.. my heart goes out to her and i hope they get him not only the treatment that he needs, but the restitution and therapy that this will probably necessitate now..

He sounds so much like my son. An MRI found a tethered spinal cord that was causing his horrific GI issues, which resolved after surgery. Maybe this is something that needs to be ruled out for Alex?

So a patient in hospital without a clear diagnosis besides autism is being treated in a facilty without a psych floor used to these disorders...sounds to me that this was the only place that would take him. If your asking why don't they leave that is probably your answer. Autistic children tend to attack medical staff due to not knowing them so doing a work up isn't the issue staff saftey is probably the concern.

Every time I take my kids to an allopathic doc, I hold myself back from asking them, "How are you conning my insurance company to pay you for the nothing you are doing? All they do is waste everyone's time and money. Every time I take my kids to a doc that knows about autism recovery, it's so refreshing. I keep hoping that the allopathic docs have learned something, so I continue to try every so many years. But, all they are learning currently is psych meds, which is such a barbaric, old-fashioned way compared to the amazing medical advances and practices in use. I continue to feel sorry for those on Medicaid since they have the least amount of choices when it comes to finding a doc that knows about autism recovery. Well, I am going to make a Telamed office for practitioners that actually get results to meet with clients so they don't have to travel to see them. I hope I can open up doors for the many suffering who have so little money to do what it takes, being that most docs know nearly nothing about chronic conditions and refuse to even do testing. The docs tell me that the insurance companies tell them which tests they can use and for what reasons. They also tell me that they don't really have any idea what testing to do for behavioral or developmental disorders. But, if I pay cash for the testing, they tell me they will do whatever test I want. The current medical system sucks, and everyone who blindly follows it is paying the price. No more. I am now educated. Thank you, Internet, for helping me learn how to recover my children and reverse the many disabling chronic conditions we have had. Frankly, I think the insurance industry is going to fail, as it already is. They pay for junk medicine the pharmaceutical companies tell them about and not what works. What a waste of everyone's time and money.

Sorry. Dumont used to be with Loyola but is now doing Integrative Pediatrics. Could they call to see if he will take the case up pro bono? This is the website : http://www.rabyintegrativemedicine.com/pages/chuck_dumont__md/127.php

He is an inyegrative doc who understands amd cares.

There's a doctor by the name of Charles Dumont who is at the Raby Institute. His specialty is GI

What alternative Hospital or practioner can Alex' mother take him to in that area? Does anyone know? Doesn't she have her own family doctor who can at least prescribe an outpatient X-ray of his GI tract at some other hospital or facility?

She's got to get him out of that hellhole and away from the mental midgets on the staff who are utterly derelict...and cowardly. If they weren't cowardly, they'd already have taken x-rays and done the requisite testing they would have given any other person suffering such gastric distress. Shame on them all. Inexcusable.

Autism isn't a medical mystery. Medical professionals need to stop playing stupid. If parents with no medical degrees can figure out what helps our children...why can't they? Its mercury poisoning and inside there are still human living children who deserve to be treated with dignity and respect. They still feel pain, fear and all the range of emotions. Doctors are simply NOT listening to what parents are telling them or they would understand autism a lot better. But despite that ignorance is still no excuse to have a child in shackles for 19 days and literally nothing to be done to help him or find out what's wrong with him. Most decent hospitals have an autism liaison on staff to help these children with the hospital process. And even if he has autism or whatever he has, you still treat him like a human being. Can't they find one doctor that has any knowledge about autism? A DAN maybe? Seriously. It looks to me like they are just bilking his insurance by keeping him there for days and doing nothing for him.

This makes me so angry!

Quote From Article: "Autism is very much a mystery, you have to understand."
MY comment: addressed to the Bimbas and Bimbos at Loyola University Medical Center

Hey, how's about a fully funded study to be performed by an independent qualified group to search for and determine what is the cause for our children to fade into the world of autism! And stop blindly treating. Sounds like STUPIDY rules at your institution!!!!

Then we could stop damaging more children by avoiding the cause(s) and logically develop the means to reverse the condition in those already damaged..

This comment sent by Mr Pissed Off at Ya'

This story makes me sick to my stomach. It is APPALING what Loyola is doing to this poor child and his family. When my son with ASD had severe constipation several years ago the first thing the hospital did was an xray to see if there was a blockage. I cannot BELIEVE that Loyola has not done any diagnostic tests. If this boy was neuro-typical, he would have had an xray, blood panel and probably a few other diagnostics by now. The staff would also not be dismissive of the parents concerns and would likely at least have a Pediatric GI consult. It's discrimination. I wonder if they (the family) have any leagal recourse under the American's with Disabilities Act? This is not healthcare and needs some (at least) local media attention. If Loyola actually does "treat the human spirit" then they have FAILED in this case. If anything, what they are doing risks BREAKING this boys spirit. SHame on Loyola.

I filed a complaint with the joint commission. I don't know Alex or his mother, but as a mom with a child on the spectrum, I felt it my civic and moral duty to file that complaint on Alex's behalf. I filed it today, 3/11/11 & my complaint incident number is: 11789ZAC-31913HSH.

Alex's mother needs to get injunction court order to get him out of that ga Uluru ASAP!
She needs to get him better medical care and have the problem solved! Once that is done, go after the hospital and file a malpractice suit!! I would ask for their Insurance carrier and report them!
Where oh where is CPS? They are also FAILING ALEX!!
I pray mom sues the crap out of that hospital!

Can Autism Spectrum movement help mom find a Civil Rights attorney?

Why is this story not making national news?

After crucifixion of Dr. Wakefield there is no doctor in the US, who will openly admit (what he/she actually observes) that autism is vaccine induced medical diseases linked to damage of gastrointestinal system. Besides, they are probably paid by pharma mafias, to poison autistic children with toxic psychotropic drugs, which they clearly do in this case. They don't care at all about helping this poor child. They are Mengele-like enablers of evil.

I can not understand why this mother doesn't take her child out of this god forsaken place. I would get him out and then sue their asses off.

It seems that there is a very sickening standoff going on here. If the hospital tests and treats a GI issue it may be publicly "misconstrued" that a well known hospital caved and somehow "admitted" Autism is medical. They just can't have that.....can they? The draconian thought process (of main stream medicine) is that it's Alex's mental health is the issue, oh hell didn't someone mention his autism? Non verbal, too? If Alex leaves without getting proper care, know that the hospital will try to wash their guilty hands with soap scented by lack of admission. The admission that something physical is very medically amiss with this respectable young man. Of course ditching name badges to protect the identity of staff from all us "whack jobs" who are making ALOT of noise about this heinous situation....oh ya, they hear us. Please tell Alex (yes with words whispered in his ears) that this situation will end and his pain will not be in vain.

You know, dogs are non verbal too. If I took one of my dogs to the vet with the same distress signs, she would have had x - rays within 10 minutes and surgery the same day. Think about that....our beautiful children, less worthy of humane medical care then our pets. Kills me a little more every day Alex waits.

When the system stops even pretending to be for the common good, is it any wonder when the common people stop believing in their god delusion.


As we clearly see here, mainstream medicine continues to fail our children. The staff at Loyola Medical Center has bought the official line, 'Autism is very much a mystery, you have to understand,' as we see here. Despite more than two decades of exploding numbers, doctors are still standing around scratching their heads over autism. It's a curiosity, not a crisis.

The medical community isn't alone in their neglect. There are stories out on a daily basis that show this to be true. Our legislatures, our schools and the police don't understand what autism is.

Children with autism aren't getting the help they need
KUTV-Salt Lake City: Utah Families Dealing with Autism to Face Another Year of Costs
http://www.kutv.com/news/top-stories/stories/vid_4113.shtml

FL: Parents Struggle to Get Autism Treatment
http://health.wusf.usf.edu/post/parents-struggle-get-autism-treatment
ABA's high costs and dearth of specialists have forced parents to go to great lengths to find and pay for the treatment, writes reporter Donna Koehn, even though state law requires insurers to cover it. Often, Medicaid denies coverage for the treatment, leading to lawsuits.

Forbes: Autism Shock Therapy Practiced In US Is Torture, Says UN Official
http://www.forbes.com/sites/emilywillingham/2013/03/08/autism-shock-therapy-is-torture-says-un-official/

IN: Police charge 7-year-old with battery http://pharostribune.com/local/x36435372/Police-charge-7-year-old-with-battery

What is undeniable is the fact that autism overwhelmingly affects children and they're not going away. Failing to meet their needs and honestly address the cause of this disaster will eventually bankrupt us.

Anne Dachel, Media

Well at least the restraints are off now. Thank heavens. However,the lack of identification is something that the family needs to stop.( The doctors and nurses are probably drawing straws at this point to see who has to go in the room.)
lack of ID is easily solved though with a polite question; "What is your name please? I'm sorry I did not quite catch that.." then write it down.
If they won't give a name then ask ( politely) is that hospital policy to refuse to identify yourself?
And perhaps mention that you plan to have an outside doctor review the charts.( Any one who orders medication or documents things is going to have to sign their name in the medical records).
The hospital probably really does not know what to do.
And if they order the tests and something is wrong, then theya re in the supremely embarassing position of explaining why they did not investigate for 21 days..
Are there other physicians available ( the family doctor perhaps) who might be more proactive?

There are disability advocates in Illinois; maybe it is time to call one?

The treatment of this young man is not just incompetence run amok, it is criminal. And the truly amazing part of this story is that the doctors and staff at Loyala will sleep like babies tonight. They feel no guilt, have no regrets. They don't care, and it doesn't occur to them that they SHOULD. This is how things are done. Period. Next! As a society we have GOT to reject this model of medical care. It is dangerous, inhumane and deadly. It is dinasour of the PAST.

Miralax has aluminum in it! Aluminum is known to cause constipation! My twin with autism began constipation at 11 days of age. (Exactly 4 days after each injection of aluminum my son backed up! at around 2 months of age put on Soy formula, blood in bowels, after thoroughncheck, no tears, fissures etc. doc said allergy to soy made stomach bleed, found out years later that Soy formula is loaded with aluminum! Later allergy testing revealed no allergy to soy, go figure this one. Doc prescribed Miralax around age 6, gave to and made worse, only seepage of liquid began for first time! The hospital setting is worse place to be for those with allergies, every time I took my chemically sensitive child into a doctor office or hospital setting he would soon present with rash , hives, runny nose etc. Accidentally exposed to latex sheeting during therapy, ( this place of business providing therapy for children had MANY plug in air fresheners caused major sensitization in my child, WTHeck are they thinking?), tried to lick powder off hands, so ingested also. Gave antihistamine called doc to see if they would draw blood to check serum tryptase ( allergist wanted verification that the flushing, hives, all anaphylaxis symptoms were allergy related so wanted serum tryptase) , doc said bring in. So 2.5 hours after contact and antihistamine dose later blood was drawn. Doc called me with results, said was only a little high ( scale 1-10 and child's was 12), did not even consider the time and antihistamine. Went back to allergist with tryptase results, appointment to possibly check for latex allergy. Put us in a small room where we waited for at least 30 minutes, my son began to have ALL symptoms of anaphylaxis ( hives on chest, red face and ears, cough, runny nose etc), doc came in saw my child and said " I see child is having anaphylactic type symptoms, I can assure you there is no latex in this office, can't be latex." Allergist said he didn't check for latex allergies there. Thanked him paid him hundreds of dollars for this visit. I just wanted to get my child the heck out of there and into fresh outdoor air, quickly. I had to bite my tongue to keep from going off on this arrogant azz! Reason being, the bus type bench seat, with uncapped metal pipe legs that we sat on had four tennis balls cut open and placed on bottom of seat legs to keep pipes from scratching the floor. Really, no latex in this business? What about the tubing on stethoscope, and other medical equipment used to examine patients? The hospital environment may be provoking this! Be careful of syringes, the little rubber stopper in the syringe is latex.

Why don't they leave the hospital? I am sure they would be delighted to see them go? Call me paranoid but it seems more likely that Dorothy will be arrested on some trumped up charges (which frequently boils down to refusing to pay sufficient obeisance and deference to people who don't know aht they are doing) by child protective services ( or whatever they are called in Chicago) rather than any help beingoffered to Alex.

I'm glad we're able to shine sunlight on this common situation. I remember bringing Mia to Akron Children's Medical Center in Akron Ohio when she was having grand mal seizures. "She is gluten and casein free," I told the nurse. We got a box of Cheerios and chemicals in a cup that they called "coffee whitener" for her meal. Hospitals know so little about food, wellness, health - and certainly when you go with a child with autism - you are almost on your own. At University Hopsitals the head of ped neurology wrote Mia off despite her having 6 or 7 grand mals a DAY - "She has autism, she's wired differently." As if she wasn't a basic human being. I have been disappointed by medical professionals to the point where I trust NONE OF THEM except to repair a bone.

Dear Loyola,

What about these symptoms for Alex?

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

I don't think in the history of AoA any story has struck such a chord as this one. Here we see the catastrophic future of our children - created by modern medicine, and well beyond its capacity to deal with. If it hasn't happened to us or them yet it, it assuredly will. This is the future a greedy industry and sychophantic crony government officials have created for us and our children - the complete failure of human institutions. Hell on earth.

Or we can think of those children in Chad, blamed for their reaction to the WHO meningitis vaccine, and shipped off to die in the desert for the greater good...

http://vactruth.com/2013/02/26/rebels-shooting-vaccine-workers/

Dear Loyola- Do you not see these symptoms in Alex?

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"

It is about time that the doctors are put on notice we are no longer just individuals out here listening to a bunch of crap -- we are now consolidated-- coming together

and now

the treatment of those with autism is being watched and reported.

Lay a reasuring hand on someone that knows more than they and unwilling -- I do not understand nor will I ever the "unwilling" part of all this.

Some one tell me why an 88 year old man with Parkinson and shingles cannot get an appointment with his doctor?

Even if that doc is part of the VA?

This was on the Donor list at this hospital. A family Fund, to help create the best experience.

The McCormick Foundation, established by Col. Robert R. McCormick, long-time Chicago Tribune editor and publisher, made the $3 million gift through its Special Initiatives program. The program supports partnerships with civic, cultural, educational, health and social-service institutions that share its commitment to engaging with others in service to community. Together with a $500,000 gift from Jim and Sally Dowdle that helped establish the HAART initiative and a $2.5 million gift from the John L. Keeley Jr. family to fund Emergency Medical Services Department renovations, this gift will help create the best experience possible for patients and their families at a stressful time.

http://mccormickfoundation.org/

McCormick Foundation
205 N. Michigan Ave., Suite 4300
Chicago, IL 60601

Phone: 312 445 5000
Fax: 312 445 5001
Email: info@mccormickfoundation.org

Time to start getting things done. Parents you can do this. Pick one name on the list and call or send a letter. Do it!!

Here is a list of Donors for the hosp. if you want to let them know how their donations are being used.
http://loyolamedicine.org/giving-to-loyola/recognition/donors

Also anyone can file a complaint to the office of civil rights for this kind of treatment happening to this young man.

http://www.hhs.gov/ocr/civilrights/complaints/index.html

I doubt very much that other patients at this hospital are getting better care. I suspect that misdiagnosis and inappropriate treatments are the status quo not only with autism. I'm sorry for the nightmare that Alex and his family are going through.

I feel for Alex and his mother. As the mother of a child wdith Down syndrome and Autism I hate taking my son to the hospital. The Dr.'s do not listen and we know our children the best and what works for them. I have had teams of hospital Dr's gathered around me as I talk about my son who I thought were listening to me and it became very clear to me they were not listening at all. When you tell a Dr. that a med called Ativan will not calm your child down but make him worst they look at you like you have 3 heads. We know our kids the best so Doc's please listen to us.In March of 2008 I went on the TV show Dr. Phil to get help from my son because none of the local Dr.'s were listening to me.

If there are no badges,how do we know if it is a NURSE or a
CLEANING STAFF came into the room??? This LOYOLA UNIVERSITY HEALTH SYSTEM / HOSPITAL needs to be investigated.

He needs to have a full physical.What if he has an appendicitis???!!! Are they going to heal the mind first before he gets a proper follow up??? How can they provide "the best healthcare possible" when they do not even have an Autism expert??? Yes,I call it DISCRIMINATION,I call it an Institutional discrimination against a voiceless autistic disabled young man.I have great fears for our children; What care will they receive in the future when even the so called
"best hospitals" (??????)treat AUTISTIC,VOICELESS PATIENTS like that???!!!
Dear Alex and his Mother - you are in my prayers.
Loyola University Health System "has been committed to the quality of care and safety of its patients" - so LOYOLA HOSPITAL,PLEASE DO WHAT YOU HAVE PROMISED ON YOUR WEBSITE.

Ok, this might be a dumb idea, but the patients bill of rights should be used to sue Loyola for something that can be found in that document. It's there any hope of a transfer to Rush or Northwestern?

P.S. PAIN MEDICINE! BOWEL PREP! AND A SCOPE! STAT!
Jackie Murphy RN SF, CA

The more I think about it.... their saying "autism is a mystery" and the absent name badges...... I'm just sickened. This is far far far beyond educating them, asking for tests. This is a living nightmare of evil. I don't know what else to call it. What are we doing to get him to another facility?

It must be different in Illinois...or at least in the room Alex is in than the rooms I worked in as a nurse in California. Our badge was considered a part of our uniform. If we wanted to work...we followed hospital policy and wore our uniforms...and that included our BADGE!
Jackie Murphy RN SF, CA

why don't they at Loyola just get out the prayer beads and drums?

I'm sure it would be about as effective(and maybe more so as there have been those reports that prayer sometimes heals)

No GI workup? What a crock. At least he's not drugged out of his mind and shackled to the bed in his own excrement and vomit. Why don't they try treating a neurotypical adult like that and see where it gets them. GI problems are a mystery...if it's so damned unfathomable to the doctors there find someone who knows how to practice medicine.

Miralax is the absolute worst that could be done for him. It is synthetic polyethylene glycol polymer that will prevent the absorption of the already very lacking nutrition that Alex is getting. Any idea why they are forced to stay in the hospital?

We do our best to keep our child healthy as one of our biggest fears is to have to rely on the medical profession. We went that route when he was a baby with his first seizure from vaccines. There I was a new young mom having to find reasons for why my healthy, normal baby just had a seizure. Not one would even CONSIDER the vaccines from the week before. Here we are nearly 10 years later and the hospitals are the same. All they have to offer are psych meds to cause more harm to the child rather than treat the condition. Between the schools and the hospitals the children and young adults are being tormented and harmed due to the lack of competence and willingness to listen. Stay Strong Alex and don't give up Jeana!

Are we creating a new underclass of people? Those who are not worthy of the best medical care. Those who are assumed to be less than human? After 21 days it cannot be anything other than discrimination. Aren't there laws against this? Aren't we an enlightened citizenry? This is reaching far beyond "autism is medical." This argument has entered the unthinkable need to argue "who is human?"

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.