Seth Mnookin, Bob's Your Uncle!
What Bruesewitz v. Wyeth Means for American Families

The Bruising Reality of Autism and Lack of Preparedness and Medical Knowledge

Lindas son

Managing Editor's Note: We learned that Billy is back in the hospital, hobbled by his agonizing GI pain. Share your own story in the comments please. Or send us your submission to KimStagliano@gmail.com for review.

By Julie Obradovic

Over the last six years I have been privileged to meet some of the most outstanding human beings on the planet. One of them is a woman I'll call Jane Doe.  Jane is a warrior mother in the truest form, a leader in the advocacy community and a parent of a severely affected child. No matter what comes her way, she faces it with grace, dignity, and love. I am lucky to call her a friend.

I have wanted to write about Jane and her son, Billy (not his real name), for a long time. Autism truly is a spectrum, and the severity with which it affects some children is often too casually dismissed. Billy is one of those children who is profoundly affected, now a teenager. Over the years since I have gotten to know Jane, her plight to help him has always hit me hard. I asked her to share a recent traumatic episode with Age of Autism to put a name and face on the children and parents who are fighting this fight everyday. To those of you going through the same thing, this story is also for you. To those of you in a position of power to do something about it, I beg you to do so. This is the reality of Autism for far too many families. Here is the story in Jane's own words....

The Medical Story

Billy is fifteen-years old and nonverbal with a long history of GI disease, immune deficiency, and more recently headaches. When not in pain, he is sweet, engaging and affectionate. He has not been doing very well since the end of September, mostly battling headaches on top of the usual GI issues. For the two weeks prior to this recent hospitalization, the topic of this story, Billy was very edgy, noncompliant, self injurious, and at times aggressive. In the last week before, he became more self injurious and aggressive; I was talking to his DAN physician or the staff almost every day. 

Billy had a little congested cough (very unusual for him) in the two weeks prior, and when the cough ended, the aggression/self-injurious behavior increased. He kept biting/gnawing on his upper arms. He wanted me near him, but he wanted to dig his nails into me and scratch me almost constantly. At this point he would not wear clothes, and he would not get off the couch. 

Billy has epic constipation (he is suppository dependent), reflux and chronic headaches. I know the behaviors associated with all of those things, and I know how to handle them and relieve his pain. This time I knew he was in pain; I just could not figure out what it was. Then he stopped drinking his elemental formula and water. So by Friday I knew there was no avoiding ER, because he was dehydrating. 

We could not even get Billy to the car. He refused to dress and refused to leave the couch, let alone the house. I thought I'd never see anything more frightening than Billly's grand mal seizure in 2006, but this night was worse. The more I talked to him and explained to him that we had to get in the car and get help, the more upset and self injurious he became. He bit up his arms badly, and he gave himself two black eyes in the process. 

I had to call 911. It took five paramedics to get him on a gurney, in restraints, and in an ambulance to get to our local hospital. At this point I thought the poor kid had appendicitis or something. I'd never seen him so out of control. The hospital got IV fluids going and ruled out a  lot of things. CT scan finally showed that his small and large bowel were full of air, even though he did not look any more distended than usual. Soon after the CT scan, however, his belly grew very large and became very hard. 

The local hospital transported us to Children's Memorial in Chicago, which is where we were for five days. Billy was in loose restraints Friday through mid-day Monday. He was just too aggressive and self injurious because of the pain in his belly. Diagnosis was ileus (bowel shut down) due to virus (the cold in the last two weeks).

Since Billy was not vomiting and began passing the air in his belly on his own, the hospital doctors decided not to intervene other than to give IV fluids and a little Tylenol for the pain. So you sit and wait for that air to pass; even with medication on board, it's pretty damn painful. Thankfully, the distention went down, and he seemed more comfortable on Sunday, but then suddenly his belly blew up again and we had to start over. That was pretty disheartening. The doctors at the hospital said that while passing all that air, another pocket of virus can open up in the intestine and cause you to distend again. By mid-day Monday Billy had a soft belly, was much calmer and back to drinking water and elemental formula again. So they took him out of restraints, and on Tuesday they removed his IV. 

I've heard of other kids around the country experiencing this bowel shut down, and I've always hoped it would not happen to Billy. So I just lived through one of the nightmare scenarios I've been imagining in my head for years but hoping would not happen. We survived it, but it got pretty ugly. It’s so hard to watch your kid so out of his mind with pain. The really scary news is that they said this can happen again if Billy comes into contact with a virus. It strikes terror in my heart to think about it happening again. Just terror.

The RNs and staff on our floor at Children's Memorial in Chicago were excellent. They were great and let me call the shots much of the time. They really listened and responded to me quickly whenever I needed something or wanted to deviate from their protocol. Of course, the hospital sent the psych team, two psychiatrists who I'm sure meant well, but could only offer Risperdal. I explained that self-injurious/aggressive behavior is always an indication of that my son is in pain. I told them that I choose to treat the source of the pain rather than assume he's having a "psychotic" episode and give Risperdal. They wanted to come back the next day to give Billy  a dose of Risperdal, so we could "just try it." I said no thank you.

Billy is at home resting now but is still in a low level of pain and very fatigued. We are working to get some diagnostic testing done, so we make some medication changes and hopefully get Billy some much needed and deserved relief.

The Second Story:  The Neurologist at Children's Memorial

We ran into trouble when we asked Children's Memorial in Chicago to look at the bigger picture of Billy's health and to partner with our team of doctors to help him. He is scheduled for lumbar puncture and MRI next month in another state. I have thought since the end of September that traveling with Billy is going to be very difficult, possibly unsafe. So our out-of-state neurologist asked the neurologist at Children's Memorial in Chicago to consider doing the lumbar puncture and MRI in Chicago, because he felt Billy was not stable enough overall to travel.

We got stonewalled. A neurology fellow came and took Billy’s history. They did request records from our neurologist. The Children’s Memorial neurologist came and spoke to me. She had objections, and I was able to deal with most of those. I asked her not to deny the request until she had spoken with our neurologist. Doctors need to talk to doctors. On Tuesday she said she would call our doctor and come back to see me on Wednesday. By mid-day Wednesday, I had not heard anything, so the nurse began paging the neurologist. She never responded to that page all afternoon. At 4:00 in the afternoon, the resident came to our room to say that the hospital neurologist sent her apologies but could not make it to see us. 

The resident began to say that there are lots of different theories about Autism, and that we probably don't all agree. Then she wanted to know if these tests were for research. I am a patient person, but now I was pissed. I explained that these tests were not for research; they were being done to determine treatment for my son. Then I said it does not matter which theory about Autism that any of us subscribes to; the fact is that there is a boy in the room with a long history of GI disease, immune deficiency, and chronic headaches who just suffered a health crisis requiring hospitalization. I don't care what any of us believes about the cause of Autism right now, I'm asking you to help us do some diagnostic testing so I can get the information I need to get my son out of pain. 

At that point the resident kind of cracked, and said "I don't really understand the issues here. I'm just here to communicate the fact that your neurologist and our neurologist have been playing phone tag and have been unable to speak today. You are being discharged since your son is clearly doing better, and you are to call your neurologist and our neurologist in the morning and continue to try to get them to talk." Well, that plan sounded stupid to me. I called our neurologist’s assistant, and she confirmed for me that the only phone call they had received from Children's Memorial was to request Billy's records. So it seemed the phone tag never occurred, and I had been lied to. 

I asked the hospital RN (who was wonderful) what my recourse was. She directed me to the Patient Relations Dept. We took Billy home, slept in our own beds, felt better and in the morning I started making phone calls. Once Patient Relations was involved people did start moving more quickly and being exceedingly polite. The woman from Patient Relations called late Wednesday afternoon to assure me that the Children's Memorial neurologist had been trying to contact our neurologist. Our doctor's assistant called me on Thursday night to let me know that the Children's Memorial neurologist did finally call late on Thursday, but I still did not know the result of that conversation. On Friday morning I got a call from the out-of-state hospital where the lumbar puncture and MRI were scheduled; they said that our neurologist was trying to move up Billy's procedures from March to February. 

There was my answer. Children's Memorial was not going to help us so that Billy could avoid the travel. The neurologist from Children's Memorial called me late Friday afternoon to say that she would be unable to help. Her reason to me was that they did not have the lab needed for the immune work up of the spinal fluid. (My understanding was that the spinal could be shipped.) And she recommended that I work with local doctors instead of long distance doctors. Yeah, right. I later learned she told our neurologist that she was uncomfortable putting Billy under anesthesia so close to an ileus. Anesthesia drugs can impede motility, and that would be a bad idea after having just suffered an ileus. 

Sevoflurane, the anesthesia we would use, does not impact motility. That is why sevoflurane is used for endoscopic procedures that include a pill cam study. The child's own motility is needed to push that pill cam through to get pictures of the entire small bowel. So if sevoflurane is used, anesthesia is a non-issue. I also learned she told our doctor that I was a problematic parent and very difficult to work with. Apparently an informed parent who advocates for his/her child is a "problem." Just for the record, I knew what I wanted and why I wanted it, and I was not shy about asking for it. I never used profanity or raised my voice. I was terribly polite.

From the time we made the request, it felt as though they were constantly looking for excuses not to help us. They just wanted us to be quiet and go away. Now I have to travel with Billy, and I'm very nervous. I hope he does not hurt himself or someone else. I will hold Children's Memorial responsible if any of that happens. Unfortunately this is the response I expected from mainstream medicine. I was not shocked by the outcome, just very disappointed.

I knew that asking them to help us do the testing so Billy could avoid travel was opening a can of worms. This is Children's Memorial in Chicago, not some tiny hospital in the backwoods somewhere. It could have been a learning opportunity for doctors to exchange information. But Children's Memorial was not interested in learning more about how to help these kids. Boy, does that not align with their mission statement. (HERE)

The Follow up

Eventually we made the long trip to see our neurologist across the country. The traveling was pretty difficult. My husband and I were worried about Billy having pain on a plane and hurting someone else, so we elected to drive. While traveling Billy experienced lots of GI pain, headaches, and then a yeast infection at the end of the trip. He bit himself frequently, leaving scabs and bruises up and down his arms and hands. He was aggressive with me several times, pulling my hair and scratching the back of my neck, arms and hands.  

If we get information that leads to treatment that helps him, then it will all have been worth it. But it sure would have been nice to do the testing here in Chicago.

Julie Obradovic is a Contributing Editor to Age of Autism.

 

Comments

allergymama

I noticed the mom mentioned elemental formula . . I'm assuming this is the main source of Billy's nourishment? My son began life with multiple GI issues. Unless it's changed in the last 8 years, even the elemental formulas contain corn syrup solids as the sweetener. We didn't realize till later was that he was reactive to corn syrup. Whenever we tried it, his belly puffed up like a balloon . . . The doctors said it didn't make sense because it was all amino acids with nothing the gut had to break down further -- well, it might not make sense but it was happening! I even contacted the manufacturer and asked if I could have some of the nutrients before the corn syrup was added and they refused.

Praying for all these families . . . so sorry for the compounded pain their children are in and the craziness in not being listened to in the medical community . . .

How's Billy

Katie Wright's post today regarding Autism Speaks funding GI research about acute pain made me think of Billy.

Yes, we should all be happy that Autism Speaks- who has sucked untold millions of dollars out from under and away from the very needy autism community is finally funding such research. It's about fucking time.

Maybe this is a sign that they're going to start listening to the very vocal group of people who want vaccine research funded. Why they are taking their lead in this area from the same organizations that are smack in the middle of all the controversy ( CDC, AAP)? Listen to the people living with this disorder!

Can someone update on how Billy is doing right now?

global hospital liver transplant

It is very sad situation. We have to once think about their situation and to take care of them.

Erin M.

The fact that they would treat a child with an obviously distended stomach by sending in a "psych consult" is horrifying. They didn't even send in a GI doctor!

My prayers are with this child and his family, who are some of the strongest people I know. This story also needs to be shared with the press--everyone should post it far and wide!

Sara

Please pray for Billy. Ask your friends and family to pray too. Just as the family thought they would be discharged, Billy's situation turned progressively worse. Doctors call his case "mysterious and impressive". He is in severe pain! Autism is medical. These kids are sick. It's time for mainstream medicine to step-up and stop neglecting our children.

Henderson

I cannot wait until they get rid of the "autism" psychiatric diagnosis all together. Sadly, I think this will never happen as there are too many psychiatric research careers tied up with keeping the status quo (holding on to "autism" with everything they have). While other MDs steer clear from our ASD family members (e.g., your garden variety: GIs, metabolic specialists, immune specialists, allergists, endocrinologists, etc.).

Imagine if our children had a medical subtype diagnosis (e.g., type 1 diabetes) rather than this ridiculous umbrella "psychiatric" condition diagnosis. Why do I mention type 1 diabetes? Their real medical diagnosis is the important diagnosis and their possible mental/psychiatric side effects are clearly downstream. How wonderful to be viewed and treated through those optics.

A while ago, my son saw an allergist re: a specific, while still uncommon reaction. He has always had and still has this transient physical reaction - and the unsettling thing is - when we (including teachers) see this, he is clearly more "autistic" (transient: meaning days or even weeks). Every doctor along the way has simply attributed it to "autism." We finally got to the allergy specialist (and not the immunologist - which is were I wanted him to be) and she actually said she would prescribe drug-x (anti-inflammatory - all of you would have guessed) for this physical reaction if he was NT, but as he has "autism" she's unsure of how he'd react; so she simply won't prescribe the drug as he's lived with this all of his life? What?

Years ago, we saw the local GI. He clearly recognized the ASD bowel; that in fact, his bowel condition is very real. But, he felt that there was nothing that he could do about it and wouldn't prescribe anything. What?

Recently, we were visiting a city where we used to live and saw two very dear friends on separate occasions (one my friend the other my husband's). Both of whom have children who have been diagnosed with "autism" - children with much, much more severe issues than our child. One finally has an identified chromosomal issue (luckily "verbal", but you can certainly see that this child looks different - somewhat like a downs child). The other has a very, very, very severe seizure disorder (non-verbal) - something about how this child processes (or doesn't process sodium). Neither family barely registers the "autism" diagnosis - the real medical issue is much more pressing (that at least they both have after YEARS AND YEARS of pressing, investigating - but in both cases the "autism" diagnosis slowed down the doctors). At a dinner party, the father of the severe-sodium issue child - while discussing healthcare/funding/policy said something like "your garden variety autism kids" - meaning kids like mine (regression subtype - whose further subtype from there - responded to a variety of interventions who is now high functioning). And, I felt shamed and embarrassed that our children have the same diagnosis, as my child's medical issues pale in comparison (though they certainly are significant comparatively to NTs). Everyone at the table could clearly see that our children have radically different diseases.

I cannot express succinctly what I'm trying to say here - But it is RIDICULOUS that these three children have the same "autism" diagnosis. It is abundantly clear to me (and to everyone), that our three children have radically different diseases.

One bright light out there is UC Davis's Autism Phenome Project (APP)
http://www.ucdmc.ucdavis.edu/mindinstitute/research/app/

I welcome and pray for the day when they get rid of "autism" as a diagnosis for our very, very, very different children. But, sadly, the psychiatry (and psychology) industry have too much at stake to ever let go. So, I can hope and pray as much as I'd like, as it will never, ever happen.

Val B

This story is heartbreaking, and sadly I can relate. My son is the same age, same severity, same gut issues, frequent grand mal seizures and other medical issues. I have been in the same situation in a University hospital by me where my child, my husband and I were black and blue from severe injurious behavior from gut pain, and we were repeatedly questioned about whether he could have possibly fallen and broken a bone or other injury as there was no way the level of violence could be GI pain. It was one of many horrendous hospitalizations we've gone thru with our son.I had to follow and corner the head of the GI dept on the elevator and embarrass her in front of everyone on the elevator to get her to order stronger pain medication. This time we stayed for 5 days for IV fluids, gut rest, and IV Morphine. Once discharged, he was placed on steriods and oral morphine so we could alleivate pain and handle him at home. If it was not for a certain doctor who's last name begins with K, we would have never survived these horrendous years when things were as you are describing now for this child.
I know this mom is going to get all kinds of advice, and I also know that this mom has already probably done everything possible, but I feel I want to write as I have been exactly where she is.
My son is a total biomed nonresponder, we've spent a fortune, he doesn't tolerate any of the GI meds,and most biomed treatments did not produce any gains. The only thing that got us out of the hell described is steroids and the Specific Carb diet. I know that sounds like not the greatest intervention, but I can tell you, we were talking tube feeding, total gut rest, his scopes were a mess, he had such severe inflammation,abdominal bloating looking 9 months pregnant, a concussion from bashing his head on the floor,all of us beat up, I looked like a batered wife, holes in the walls, teeth marks everywhere,things were dire as described by this mom.
After one week on SCD, very intro diet of cooked fruit, chicken and squash soup type stuff, he had his first ever normal non suppository BM and a flat belly.Violence gone. Seven years later, he now can eat some non scd grains like quinoa and buckwheat and some gfcf cookies but it took several years to get him to this point, we still have gut problems, but the gut is manageable, we've now moved on to frequent grand mal seizures and battling insurance for a vagal nerve stimulator implant,autism is hell on earth.
Tethered cord and chiari malformation can cause severe headache, ileus, constipation,gut issues,bladder issues, an mri of the brain and entire spinal cord is worth checking out, I'm sure this family has probably done all this, but I keep thinking, what if they haven't, everything is worth a try. Alot of our kids have chiari, and are so much better after surgery.
Lyme also can cause automonic nervous system dysfunction which leads to, severe gut paralysis, headaches, chronic sinus, severe reflux, gut pain, constipation,severe sound and light sensitivity,urinary frequency, alot of symptoms beyond the classic joint pain stuff that we all are aware of, worth an Igenex lab test if they have never pursued lyme. So many of our kids have lyme disease,please see www.lymeinducedautism.com
What this family is going through is criminal and inhumane. I pray that this child and family get some answers, it is beyond frustrating that there are three GI doctors in the entire country that understand our kids,and 99% of us can't afford their services because of HMO's and insurance restrictions, and one of them can't even practice medicine any longer, it IS a crying shame. I pray things get better for this child soon.

Lorene Amet

The connection between challenging behaviour, especially self-injurious behaviour and health/pain issues has not yet been made by most mainstream medical and education professionals. Sad that these children and their families continue to be ignored and discriminated against.

Jenna

I know this has probably been tried, but feel compelled to share anyway. We have major gut issues in several family members and over the years have tried everything mainstream, dietary, herbal, homeopathic, etc, etc., with a preference for staying away from Rx drugs. HOWEVER, with really horrible acute pain, we have found there is no substitute for steroids (prednisone) and NSAIDs (medium or high dose ibuprofen). We had a few well-known DANs suggest these options for years before we listened and they were right. Hope this precious, precious child gets some relief.

Cherri

Just sat down at my computer after calming my 12 year old back to sleep following his 3rd big seizure this month. Last month he had 5 tonic-clonic seizures, but a 2 week course of antibiotics (for an ear infection I would have never known he had if I hadn't taken him to the ped on a hunch) gave him a two week reprieve. Finished the antibiotics and the seizures are back...

Ben is the love of my life. He is also significantly affected by autism, non-verbal, sweet loving, possibly brilliant and completely unable to communicate about his physical sensations other than hunger and thirst. His body, brain and development are a total mystery to me and to most all of even the good docs he sees.

The bad ones think they know all about him.

After all he has Autism. What more do they need to know?


In his short life here is how he has been prejudiced/malpracticed against:

1) No physical therapy offered for extreme low tone as toddler -because he had autism, PT not indicated for autism- resulted in major external hip rotation and late walking, inability to run, back problems.

2) Ortho doc tells school nurse (a few years later) that if he were a typical kid the hip rotation would have been repaired surgically "but kids with autism won't comply with PT so we don't suggest surgery" By the time this is revealed, it really is too late.

3) ENT refuses to work up for chronic nosebleeds and sinus infections because " kids with autism always have their fingers in their noses, probably thats why it bleeds, use vasoline." Never ASKS me if he picks his nose (he does not, horrific nosebleeds occur randomly and last for hours), just assumes he does since he has autism.

4) Neurologist office doesn't bother to chart phone calls about seizures, but records sent to other praticioners reflect only her comments about behavior. When alternate neuro looks at chart, sees a record that reflects a patient with behavior issues not neuro issues and refuses case.

5) Occupational Therapy at Major Childrens Medical Center does not have ability/wherewithal to provide services to significantly developmentally disabled children who are older than about 5-6 years old.

It is as if our severly affected children with autism walk around with a *HUGE LETTER A* tattooed on their foreheads that give every mainstream medical pratitioner a pass. They are not required to look beyond that giant "A" to see the broken arm or the swollen tonsils, because you know "kids with autism do things like that...it really doesn't mean anything"

The thing is, I can deal with this because we have a wonderful DAN! doctor and I've managed to forge a relationship with a pediatrician who gets us, BUT...what will happen to Ben when he is no longer a child and when I am not able to advocate for his health care needs?

Who will provide care for all of the significantly impacted adults with autism?

Tara Marshall

Okay, first of all, NEVER give Tylenol/Acetominophen to an Autistic person. It is horrible for the liver (kills liver cells faster than alcohol) and shuts down methylation. Any heavy metal toxicity issues immediately get worse. If at all possible, either use Ibuprofen or go without pain medication.

I will tell you flat out. I am high-functioning autistic. The last time I had Tylenol in a cold medicine when I was 23 and in college, I ended up in the ER within a couple of days with LIVER FAILURE. They thought I was going to end up on the transplant list. I was in the hospital for over a week. I've completely avoided the crap ever since.

I encourage all of you to look at diet and how it affects us. Artificial colors turned out to be what gave me seizures for 14 years that were essentially uncontrolled, even though the dose of anticonvulsants I was taking were slowing me down cognitively so badly I could barely get out of bed. Casein doesn't seem to be a problem any more, but that's because I took it out for 5 years. Gluten and soy are still horrible problems for me, and I'm sensitive to eggs, rice, and potatoes as well. My diet can be not so fun - it would be nice to be able to eat with friends - but it's REALLY nice to not be in constant bowel pain anymore.

barbaraj

I wish Dr.Wakefield could offer some advice for this mother, perhaps in the form of supplying an anecdote or two from the experiences of similar patients and the help they may have received. In the old days, my grandmother would say, "why can't you buy paragoric, kids had help before getting so bad"..While I'm not sure if that is true, there should be some help available, no medical system should let a child suffer so.

Sara

Jane is a dear friend and one of the brightest biomed mommies out there. Her family has worked with the most knowledgeable doctors, nutritionists, and therapists in our community for the last 12+ years. This mother has done more diagnostics and tried more interventions than one could imagine. Those that know this family will tell you that Billy has some of the most complicated medical issues we see in our children. Jane and her husband's only wish is for Billy to find relief from the chronic torturing pain he physically endures more often than not. CMH could not see past autism. They failed this child.
Jane was telling me how a group of medical students came into Billy's room today to see "the self-injurious autistic". Jane in her always so articulate and polite way did not let them leave the room until she could explain how autism is medical. I have hope that patients like Billy and parents like Jane will reshape how our future doctors think.

Carolyn Fitzenreiter

Hospital complaints can go to The Joint Commission (http://www.jointcommission.org/), the state hospital association, or the state medical board.

My son has been accused of being a "behavior problem" when he lost the ability to walk (tight hamstrings and achilles) and when he had a fever.

Missa

This broke my heart into a million pieces. I've had two pediatricians write me down as a "problem parent" so far. Luckily for me I found our now current DAN doctor who is amazing and does what most doctors don't, he listens. Our son has chronic constipation and bloating issues too, it's been like this since he was 12 months old. I did as much research as I could and then I ordered some Threelac and the enzyme Trienza which is specifically for bloating and constipation. These two supplements seem to do the trick. They've been a lifesaver as we were also very familiar with giving our son suppositories every day. We give him 2 enzyme caplets with every meal and the probiotic right before bed and it's the only thing that makes him go on a regular basis and kills his bloating and gas. I don't know if this lady already uses something like this but I felt I had to try.

Andrea Lalama

One of the most important things is parent's education about how the gut works. In order to provide to the children the most appropriate dietary intervention, you must customize the diet to that child. This in my personal opinion is the first step any family should take after diagnose, specially if the child is non-verbal, to avoid future problems like the ones mentioned in this heartbreaking story.
Personally, I like to help other parents by sharing my own research, experience and education from very prestigious professionals in different sciences, who helped me in my journey, the things I learned, it helped me to stabilize my children's gut issues in a way that made sense and eliminated their pains and discomforts.

1-Understanding how the gut works.
2-Understanding how important the quality of food is!
3-Understanding how to introduce the food and preparation.
4-Understanding Quantity and pro-genes food
5-Understanding The importance of vegetable fiber and natural clay to heal the gut walls.
6-Understanding introduction of natural bacteria and stabilization with bowel nosodes to procure proper re-population.

my best.
Andrea Lalama,Hom.
http://www.holisticapproach4autism.com

Teresa Conrick

Hi. Just wanted to post this as I think it's helpful for so many of the issues that have been discussed here.

Here's the intro but there's more to read and helpful illustrations-

http://sackler.tufts.edu/Academics/Degree-Programs/PhD-Programs/Faculty-Research-Pages/Theoharis-Theoharides.aspx

Mast Cells and Disease Processes

Mast cells are known for their involvement in allergic reactions, but we were the first to show that they are also necessary to inititate inflammation, thus participating in inflammatory diseases that worsen by stress, such as autism, cancer, chronic fatigue syndrome, interstitial cystitis, migraine headaches, psoriasis and multiple sclerosis. We have developed in vivo and in vitro models for these diseases and we are studying neurohormonal activation of mast cells. The only plausible way to explain how mast cells can participate in so many diverse processes is their ability to secrete distinct chemicals relative for different pathophysiological settings.

Erika

I am praying for Billy and his family. The moment i saw the photo i was not sure if i wanted to read the article, i knew it was going to be sad. But being in denial does not help anyone, as we can clearly see with the attitude of that neurologist.

Keep fighting Billy's mom! You are an inspiration!

I also wanted to recommend Donna Pessin. A nutritionist in Colorado with a very successful nutrition practice that treats people, including kids in the spectrum, with very, very severe GI issues.

God bless you!

L Land

I have just printed the article and all the comments to study to help me try to figure out what is going on with my son. He has lost weight, has no appetite, loose stools, and lying down with his head covered up. He is also making these odd postures and closing his eyes. I talked to his DAN's office and they said to go to his regular dr which is almost always unhelpful
(He's depressed - yeah sister so am I - - you would be too if you had an ulcer and noone would treat it! or He has autism what do you want me to do?, ah maybe treat his strep throat, just thinking out loud here. I could go on and on)
Thank you for sharing this story and all your comments!

sondra

I to wonder if this mom has had of her son fully tested for mitochondrial issues as he sounds much to so have a form of that attacking of the gut and reaching gut brain barriers. it is of scary. I to be of have dx of autism and struggled to health issues all of life much so sick and had of much so chronic colitis issues as a younger person but did not get of dx of this because could not communicate of the pain issues were of my tummy and yet like of Billy to this story did have much much self injurous behavior of self hitting, pinching , biting of my right hand near of my thumb area and skin clawing ( literally scratching skin off leaving abrasions to my arms and thigh pinching leaving huge bruises to my legs) when in much pains often cant communicate well but back then simply didnot have of the support and or vocabulary to speak of the pains or the processing to know it was of coming from my tummy as it hurt everywhere for me.
I to still ahve of much issues to my tummy and now have of imflammation often through out my gut and tummy even now as adult. it causes much discomfort and severe sharp pains that make you want to be of dead instead of the living. when in this much pains it causes of me to lose of my ability to get of my words out.... but strange when in hospitals and have of IVs it seems to increase my focus and can use of words but not always depends on the pains intensity. I to hate of ones that intermit. like in a rythmic fashions as it causes a spike of pain then calm and spike again this sort of pains causes me rapid spiral to SIB because cant cope it.
anyways wanted of to say I to be of sad that some doctors are of not as willing to help and or offer solutions to such a complex issues as you son.
I to be of being suspect of mitochondrial issues as the current doctor i to see feels it might be of teh answer to my immune issues and all of the pains and gut related things I to be of been of battleing all of my life too. I to be of though have of a good team of doctors all local to my state who help of me. I to be of dx as autism, PTSD, aneity, depressions, asthma, fibromyalgia, sjogrens, IBS, hiatal hernia, and suspect of gallbladder disease. I to struggle with much neropathy of the limbs. frequent infections and immune issues. I to have a dream like dr. martin luther king shared and apply it to medical treatment for autism that some day we as so called less than humans can be of treated as if we existed as worthy of medical care.
sondra

Maureen H. McDonnell, RN

Part of the problem stems from the fact that most doctors do not understand autism.....what causes it, and the fact that there is a multitude of medical conditions associated with it that can be identified and treated. They don't "get" that when done "correctly" these interventions can bring about positive changes in behavior, attention, speech and general health.

Based on the work of Drs Rimland, Baker and Pangborn (the DAN! founders), a new attempt to bridge the gap to mainstream physicians has been created. Your Healing Retreat (see banner ad on AOA or go to www.yourhealingretreat.com)will provide evidence based practical strategies for pediatricians and family physicians to learn and apply in their practices. We can't let stories like Billy's continue to be the norm. Please help us get MDs to this CME accredited program so that we can bridge this ever widening gap and build a community of physicians who are aware, equipped and willing to help. Go to www.YourHealingRetreat.com
Maureen McDonnell, RN

Teresa Conrick

Dear Birgit,

I am so sad and sorry for your son and your entire family. The pain and suffering needs to stop and I think that is our purpose here. You sound like you know what has happened and I hope you get your answer.

Also, if you are comfortable, please email me as I, too am looking into LH research.

tconrick@gmail.com

Bless you and your family.

Med Hypotheses. 2009 Nov 12.
Luteinizing hormone provides a causal mechanism for mercury associated disease.
Laks DR.
Mental Retardation Research Center, David Geffen School of Medicine at UCLA, 635 Charles E. Young Dr. South, Neuroscience Research Building, Room 379 (lab), Los Angeles, CA 90095-7332, USA.

Previous studies have demonstrated that the pituitary is a main target for inorganic mercury (I-Hg) deposition and accumulation within the brain. My recent study of the US population (1999-2006) has uncovered a significant, inverse relationship between chronic mercury exposure and levels of luteinizing hormone (LH). This association with LH signifies more than its presumed role as bioindicator for pituitary neurosecretion and function. LH is the only hormone with a rare and well characterized, high affinity binding site for mercury. On its catalytic beta subunit, LH has the structure to preferentially bind inorganic mercury almost irreversibly, and, by that manner, accumulate the neurotoxic element. Thus, it is likely that LH is an early and significant target of chronic mercury exposure. Moreover, due to the role of LH in immune-modulation and neurogenesis, I present LH as a central candidate to elucidate a causal mechanism for chronic mercury exposure and associated disease.

Sarah

I think they hate us because we're onto to the truth, that this crisis is due to medical malpractice. They don't want to get further involved, so they stonewall.

I got the same treatment when I tried to make an appointment for my son with a neuroimmunologist at Boston Children's Hospital. I was declined. Either these doctors are taking their orders not to see us from the top or deciding as a group to shut us out. Terrible behavior. They know that we know the truth about autism.

Carolyn M

My daughter has GI issues, although not to the extent that Billy has had. She has had chronic yeast, dysmotility, malabsorption and recurrent clostridium dificile. What has helped lately has been the biofilm protocol. Her last test results showed no xenobiotics (the only yeast present were S. boulardii). If Jane has not already tried this, it might be something to investigate.

I also had a doctor try to prescribe Risperdal for my daughter some years ago. She was having meltdowns (lots of head banging) and I had taken her in to determine whether she had injured herself. She melted down in the doctor's office in front of him. He left the room and came back with a prescription for Risperdal, and an article touting its benefits. He insisted that I would "regret it" if I did not fill the prescription. When I and my daughter's DAN doctor investigated, it turned out that she had THREE physical issues - 2 back teeth were coming in at once, GI tract infection, and seasonal allergies. I have NEVER regretted not filling that Risperdal prescription.

I hope that Billy's health improves very soon.

Sylvia

Most parents assume all vaccines are relatively safe. Most parents assume their child will be treated compentently and compassionately if hospitalized. Wrong on both counts. But you cannot fully absorb the enormity of the shock untill you experience it first hand.

Birgit Calhoun

Doctors feel very safe when they know they are dealing with a non-verbal patient. If my son (40 years old), who died just three months ago, could have talked, doctors would not have treated him as they did. Erik was seen by doctors at Dominican Hospital in Santa Cruz, California, and at LPCH (Lucile Packard Children’s Hospital) near Stanford and other places around the San Francisco Bay Area. At Stanford they call the complaint department Guest Services, and they are very friendly, but they did not have any influence on the doctors.

Erik eventually died of kidney failure. But the last 11 years of his life he spent in a wheelchair. He had ~ 100 broken bones because his kidney was not making a vitamin D metabolite (calcitriol). We spend 7 years trying to find a kidney specialist who would acknowledge that Erik was in stage 5 kidney failure and that he might not live more than another 2 or 3 years. We saw about 24 different urologists and kidney types. By the time a doctor came along who admitted that Erik was in kidney failure, the glomerular filtration rate was at 15. Normal is 100. We requested a written report about the kidney failure. We never got that. The doctor was too afraid we would sue. I am not going to get into the whole story because it is so long it would fill a book. Maybe I'll write one. In any case, Children's Memorial in Chicago is probably not the worst.

The autopsy report said that Erik died of kidney failure, and that he had long-standing vitamin D deficiency. I asked the pathologist to test Erik's pituitary for mercury. That's because in the past Erik had had an endocrinology work-up that showed that his luteinizing hormone level was practically non-existent and I heard that that might be useable as a marker for mercury toxicity. We haven't gotten the report yet.

Donna K

Teresa,
The research you posted by Vasiadi et al regarding histamine induced inflammatory pain and remediation by progesterone is a great insight. Interesting that psychiatrists prescribe risperadal for aggression in autism, especially when you consider that it is a potent anti-histamine. I'm sure the docs who suggested it for little Billy were'nt considering that it might help relieve his physical pain. Though we're all deeply troubled by Billy's tormenting pain, I'm relieved to know that Jane did not consent to using this nasty drug. My daughter's neurologist was adamant that we not let anyone prescribe this for her.

Zofie

I believe the mainstream doctors hate autistic children and don’t want to help them in their suffering, because they feel guilty of administering the iatrogenic toxic medicine, which destroyed life of these children. They prefer to pretend these children do not exist. Present day US medicine is evil’s medicine.

kathy blanco

Try having a son like mine...and I am not alone, here is a recent update I gave the PANDAS network. I looked up this morning actually, that some antipsychotics are cardiac death sentences....story below...

Antipyschotics are causing heart problems! RIGHT BEFORE Ryan had severe asystole, requiring a pacemaker, he was put on Antipsychotics~! ARRRGH. We had in our heart this "feeling" that they were no good, and stopped them. Then OHSU repo...rted me for not giving them to my son. I was being abusive....well well well...who's being abusive now! What he really had was PANDAS/Inflammation, which needed immune treatment, not bandaid psychotic drugs. When I approached the brainiacs at OHSU (a highly regarded west coast teaching hospital in Portland Oregon), with a scientific paper on PANDAS, they shoved it back and me and said something along the lines of, oh, that's interesting, and I am glad your getting medical information from trusted journals. Ryan fit every criteria for PANDAS. I know my child. He had sudden progressive OCD (awakening him at night going through routines excessively), night terrors, anxiety and aggression, increased seizures, urination during the day (sometimes in his pants, not like him), and following us around like a puppy dog. This was not my son. Something was up.

Ryan is positive for PANDAS, even though he is not "pediatric" age, he is thirty, as tested by Madeline Cunningham PhD U of Ok. He was abnormally high on pandas autoimmune neurological markers. His nitrotyrosine levels are elevated showing severe oxidative stress and inflammation in his brain. He no longer requires those bandaid drugs, and is getting better on PANDAS, reducing inflammation treatment. He wasn't psychotic, he was sick with an inflammed brain. We continue this treatment to help him have less suffering, as he did at the hands of those who dismissed my pleads for help. I remember going into a metabolic clinic pleading his cause (he had seen them for years for issues of mitochondrial type of problems) and saying something along the lines of, something is different, he is neurodegenerating, help me! They offered me genetic tests, which found nothing. They dismissed he had a true mitochondrial dysfunction, which is known to be in PANDAS and Autism. See me in six months is what they said. That's not going to help my son now, I said...I guess they didn't like that response. If I waited another six months, he would have been dead.

And oh, I wonder, would you act psychotic if you felt your heart was stopping at times, seeing things, (this is a known fact with conduction problems)? If you lose blood flow to your brain, you hallucinate. Ryan is confirmed to have Lyme which can cause heart conduction/block problems. Ryan also has XMRV, the newly discovered retrovirus (which causes severe combined immune deficiency, which makes one vulnerable to ANY infection). He recently just battled another strep infection succesfully treated with Ceftin and Zithro pulses. Abx's/ARv's/Virals are used in such times, and is also used in PANDAS. He has been on ABX's/virals now for a year, and over this time, he has continued to progress, have less seizures, less PANDAS symptoms (we always have to be on top of cyclic things) and of course, his heart is being healed by our protocol and the pacemaker in assistance. It is known that PANDAS can also cause heart issues due to strep pathogens and other infections. He was also on Tegretol, which is known to also cause aystole. With lifelong seizures, my son was hanging on for dear life at the hands of "brainiacs", and not listening to me. We are not talking just a pediatric case here, we are talking throughout the lifespan. It makes one wonder that the over diagnosis of psychotic/OCD disorders, aren't just PANDAS (or what I term as a bucket load of infections) in adults? Are they being treated with immune modulation/antiinflammatory drugs, or antibiotics, I highly doubt it. They are being forced to take HALDOL, ZYPREXIA and other mind altering drugs which make them drool all day as to make them compliant and finally get tardive dyskensia as they waste away in group homes, residential highly cared for settings. We are robbing people of the ability to be treated as human beings with a severe infection. What's wrong with this picture? Things that cure people should be payed attention to and affirmed, not highly disregarded with pessimistic archiac treatments that don't work and only "buy time". My son could have died if I didn't question this paridigm. It's time parents question any diagnosis that fits their "must put them on antipsychotic" diseases. My son is not the typical pediatric presentation. However, on hindsight, I think we had a PANDAS child without knowning what was going on for years. It was just more "there" with a big body in front of us. These kids deserve recognition for what they are going through. Their brain is inflammed by an immune process that is hard to control. I blame a lot of that on the initial vaccines my child got, which started and or triggered the immune dysfunction scenario. Certainly, he was infected in utero as well, with things he could not overcome. We do a fine job at not looking at this bigger picture, and one size fits all medicines. We all come into the world with differing immune capitals, isn't it time we stop treating us like herd cattle? Anyways, I think so.

As in my sig line below, a parents observations should never be dismissed. Mine were. Mothers know their babies even if they are thirty! Listen to us.

(Pandas Organization, could you forward this to your newsreporters whom you said they were doing a story on PANDAS)?

Kathy Blanco
. “An observant parent’s evidence may be disproved but should never be ignored” —Lancet 1:688, 1951,

JenB

Autism is perhaps the poster-child for every negative aspect of our U.S. "healthcare" system. Aspects that so many in the field seem to need desperately to pretend do not even exist. Is it the nature of having made life-altering and possibly life-threatening choices for another human being to keep "control" on one's life view at the expense of the well-being of another or is it a sort-of cavalier attitude about suffering resulting from being in a position to see so much suffering that too often cannot be alleviated, or... ? It sometimes feels like the attitude is that worst thing that could happen is for someone to actually stumble upon a way to reverse, or heaven-forbid, prevent a chronic health condition, especially when the consensus has been, "It's the genes." I can't help wondering if that suggests an underlying almost subconscious awareness that what is done in Western medicine generally violates "First do no harm."

Amber

Tears shed and prayers said for this beautiful boy and strong family.

Michele Weppner

These problems sound very familiar to me, it sounds like my sons problems to some degree. However, he is 5 1/2 years old. I have been trying to get a simple SPEC SCAN and the hospital refuses because they to don't want to sedate him, UNBELEIVABLE!!!! The whole system is ridiculous. Why is it that children and young adults who have Autism have such a hard time to receive services, or insurance coverage. Its like no one wants to help this kids, WHY?????

Mfischer

I am so sorry to hear this story of pain and insensitivity on the part of doctors. What a brave family. Maybe taking a large dose of vitamin D might help Billy from getting another virus. It is so hard to hear of this and have nothing to offer as help.

Steph M

Grandma Judy...I agree. I picked up this information from another parent on another autism forum. I use it now and it has made a great difference. Maybe not a cure but it has been remarkable for my child.

I agree with everyone regarding how mainstream medicine has let us down in so many ways. My story has so many parallels.

Susie

I give you a lot of credit for not raising your voice or using profanity with those docs when your son was in the other room in pain. I can't say the same for myself when I have dealt with the head of the GI dept. at Children's. Interestingly, he gave me the same crap about the cause of autism. We were not even talking the cause of autism or about a child with autism. This was one of my NT sons who was diagnosed with failure to thrive and I was trying to get him to find out the cause! He has two brothers with confirmed ulcerative colitis and more family history of GI disease, but he was more interested in arguing with me and looking down his nose at me. When he finally realized that we were treating my other kids with GI meds, and not snake oil...he changed his tune. But, that was enough for me-we never went back.

Dadvocate

Sadly, Children's Memorial in Chicago has brought up the rear on health issues relating to autism so this story is totally unsurprising to me. My wife and I voted with our feet and chose to seek out treatment elsewhere. The neuros at CMH are generally clueless and it is patently clear that they do not place much weight on all the comorbid conditions that affect so many on the spectrum. I think they are pretty good, if not excellent, on a lot of other childhood diseases and conditions (cancer, critical care, transplants, heart conditions, etc), but autism ain't one of them. It's a shame that they've chosen to stay on the sidelines these many years and ignore the epidemic of affected kids that surrounds them.

Jerry

My son Autistic son Nathan has constipation problems and diarea, i'll try the Zantac and gas pills. Maybe he'll stop bouncing off the walls, dining table, kitchen counter and couch... etc..

Kristina

Why do mainstream doctors hate autistic kids so much? Yes, hate?

All I can think of is they are constantly trying to push out of their minds that the current medical system that they are a part of is hurting kids. Dealing with autistic kids interferes with that denial.

Taximom

Sending hugs and am crying with you....and I'm devastated that I can't think of anything more helpful than that for you.

Lisa @ TACA

My heart goes out to my friends in this story. This family has left no stones unturned in the best practices and then some.

Please pray for Billy and his family for answers and solid solutions.

Grandma Judy

Jin Shin Jyutsu, a Chinese energy flow based on the acupuncture meridians, may help Billy and this can be learned and done on him at home.

A lot of things can cause the bowel to become paralyzed--too little fluid and too little of fiber to carry the fluid. I'm a grandma with IBS who goes to an Applied Kinesiology trained chiropractor. When my sacrum is out of alignment (hip sockets), I cannot poop on my own as it affects the transverse colon's valves--sphincter of Oddi is one and lleocecal the other that can both get stuck closed for me and cause extreme contipation. (They can get stuck open too and cause diarrhea instead.) My sacrum usually gets out of whack from my right knee going out from a previous injury. Remember the old song about the "knee bone connected to the thigh bone connected to the hip bone"--well it is when you get these outcomes.

So Jin Shin has energy flows for both the small and large intestines that helps the peristalsis along. There are 26 pulse points designated. It's a matter of holding two points at the same time and then moving the hands on a particular pattern to the next points until the flow is completed. It works.

Illustrated here by "Give yourself a treatment:"
http://www.hightouchnet.com/self_help.html

Practitioner locator:
http://www.jsjinc.net/international-locator.php

Donna K

My thoughts and prayers are with Billy and Jane today after reading this. Been there too. When my adolescent daughter started vomitting incessantly after introducing seizure meds for her seizures, her neurologist ran an ultrasound on her abdomen for diagnosis purposes. He may have been looking for signs of pcos or whatever, but it did reveal a completely empty gut, as I had pointed out that she hadn't kept anything down for two weeks at that point. He made an appointment for her to see a ped in our area to follow up on the severe gastro symptoms. That ped just happened to be the director of the local children's hospital. When I brought her into his office he looked at her as though she was some big stink I brought in. He wouldn't even touch her to do a physical exam. His disdain for her was palpable as he snarled that autism was genetic and this was just part of that. I said she wasn't here regarding her autism, she was here because she can't stop vomitting. He left and sent in a nurse who handed me a slip of paper with an appointment set for two weeks out with a ped gastro doctor. She needed help now and it was only because I had my family to help me 24/7 keep my daugher from being completely dehydrated that she didn't end up in the hospital that day. We waited one week, and desperate, I called the ped gastro's office to see if they had any instructions that could help in the meantime. They had no record of my daughter's appointment, for which I would need a referral. The director of the local children's hospital lied about making the appointment. Subsequent to that, my daughter's neurologist prescribed sertraline for her aggressive behaviors and lo and behold it stopped most of the vomitting. Her neurologist, who is 'not' a pediatric specialist, has been a blessing to her.

Many of us have stories similar to Billy's and this is another reason why the pediatric profession in the U.S. has lost respect and the trust of parents. Family members, friends, teachers, aides, therapists, they all see how physically sick our children are and how the ped md's turn their backs on our suffering children. And because there are so many suffering childen today who are denied proper medical treatment, and many contacts in their lives witness this, the pediatric doctors are ruining their own reputations. Is it really worth protecting dirty vaccines?

For Julie or Jane -- if Billy were prescribed depakote subsequent to his grand mal seizure, and if Billy had measles virus infection of his ileum, the depakote (as a histone deacetylase inhibitor) could create a condition that is conducive to increasing the replication of the measles virus. Measles starts with a cough. Something to consider.

Alison MacNeil

Just tears and support for you, our story is too similar, crap treatment at MGH and Children's in Boston, sweet boy in severe pain, mom on last nerve.

Sending the mom of this story courage for the dark times and big love for the sweet boy in the picture. Damn can't stop crying about this one.

Deb in IL

October of 2009, my then-4-year-old had a sudden onset of vocal tics. Our ped referred us to Childrens for a neuro eval. First available appt was January. I used my biomed mom groups to do what I could in the meantime.
By the time January came, the grunts had dramatically decreased. The doctor was very thorough. Of course, since I was honest about his biomed history, he told me the DAN! doctor was a snake oil salesman and selling me very expensive vitamins. I looked at him and said, with much confidence, "We're both here to make my son healthy, and his problem is the vocal tics". The doctor didn't bring it up again. I wasn't going to defend my decisions to someone who doesn't even look at how DAN! works.

I hope I am able to continue to heal my son without mainstream medicine. The more experienced I get, the less confidence I have with it.

Teresa Conrick

Also-I can't help myself looking into these horrible pains our children have. Megan's horomones are again gearing up and the pattern then- seizure next week. Many of her symptoms indicate estrogen may be effecting mast cells.

In doing some reading on that, I discovered that cluster headaches can be from mast cells. A symptom Meg has had like clockwork is the area arounder her left eye swells up and she rubs her head and does bang her head. SHe has had others too and I may go into that another time but just want to bring up the issue that mast cell degranulation may be a big part of the pain our kids have. These cluster headaches can be so very painful that self-injurious pain is indicative of that.

I saw this and it may be an area of more research/treatments for our kids.
http://www.archivesofpathology.org/doi/pdf/10.1043/1543-2165(2006)130%5B362%3AMEIMMC%5D2.0.CO%3B2

"Mast cell degranulation
has been shown to mediate postoperative ileus
in a murine model,16 indicative of the role of mast cells
in hypomotility and hypermotility of the gut.
In many gastrointestinal diseases that may cause chronic
diarrhea, the role of mast cells and their mediators is
being investigated, although with increasing controversy."

Progesterone may be what Megan needs to stop the pain (headaches-cluster?), seizures and corresponding behaviors. We will see when results are complete. I know Dr. Theoharides is doing some good research on mast cells and I think it is very important.

Int J Immunopathol Pharmacol. 2006 Oct-Dec;19(4):787-94.
Progesterone inhibits mast cell secretion.
Vasiadi M, Kempuraj D, Boucher W, Kalogeromitros D, Theoharides TC.
Department of Pharmacology and Experimental Therapeutics, Tufts University School of Medicine, Tufts-New England Medical Center, Boston, MA, USA.
Abstract
Mast cells are involved in allergic reactions, where they secrete numerous vasoactive, inflammatory and nociceptive mediators in response to immunoglobulin E (IgE) and antigen. However, they have also been implicated in inflammatory conditions, such as painful bladder syndrome/interstitial cystitis (PBS/IC), irritable bowel syndrome (IBS) and migraines, all of which occur more often in women and are exacerbated during ovulation, but are suppressed during pregnancy. Mast cells express high affinity estrogen receptors and estradiol augments their secretion, while tamoxifen inhibits it. Here we report that progesterone (100 nM), but not the structurally related cholesterol, inhibits histamine secretion from purified rat peritoneal mast cells stimulated immunologically or by substance P (SP), an effect also documented by electron microscopy. These results suggest that mast cell secretion may be regulated by progesterone and may explain the reduced symptoms of certain inflammatory conditions during pregnancy

E.T.'s Mom

Sadly, Jane's experience with Children's Memorial is exactly what we have experienced with a university children's hospital here. They claim to be a cutting edge teaching hospital, but when it comes to difficult cases, particulary cases where autism is involved, they just can't be bothered. They told us again and again that our son's case was "unusual", yet there was no curiosity. They could not be bothered to LEARN from his unusual case.
My heart goes out to Jane and Billy and all the others out there who face autism discrimination from the medical community.

lj goes

Ahhh, Childrens. The apogee of mediocrity. I knew the neurologist who diagnosed Noah there from my friend's experience. When she delivered the news to her that her son was autistic she said, "but you don't have to tell people if you don't want to." She was so grateful i already knew Noah had autism (I had already found a of a, read jenny's book, and the 4 a's) she delivered her diagnosis by saying, "well, clearly you know he has autism--are you a therapist?"

No, not at all. I am a mom. A mom who pays attention. A mom who has been beaten and bruised by a medical system that has thrown my child away. And I am pregnant with another little boy. What will happen to HIM when he encounters the likes of you people?! We were referred across the hall for "follow up" and I met the shiniest doctor I have ever seen in my life. His tanned and surgically augmented face glistened, his teeth were fake straight and a glaringly unnatural shade of white. He wore Cole Haans, custom trousers, and a pink shirt that was perfectly pressed at 1:00 in the afternoon. And best of all the big dog ro-ro with the diamonds by the numerals. Yeppers, he was all about helping the children. He shook our hands like we were old friends and said they had to run all kinds of test to find out what medicine would help him. "Help him." I collected Noah and hurried him out of that office as if this man was the devil trying to steal his soul. Because that is exactly who and what he was. I left in such haste the nurse ran after me saying, "You know, it is very hard to get an appointment with Dr. Bling-bling! take advantage now while you are here, or it might be months before you can see him again." I am sure well-meaning unsuspecting moms who have no idea what the medical industry has done to their children are on a wait list to see what fantastic pharmaceutical remedies this wonderful neurologist is so willing and anxious to provide.

Jen in TX

"Since Billy was not vomiting and began passing the air in his belly on his own, the hospital doctors decided not to intervene other than to give IV fluids and a little Tylenol for the pain."

An autistic child with self-injury and aggression issues should NEVER be given Tylenol. Tylenol doesn't do SQUAT for this type of pain--it makes matters MUCH worse. THROW OUT THE DAMN TYLENOL!!!

Donna L.

Thank you for sharing this heartbreaking story. 'Jane', your son is beyond blessed to have such a devoted mother.

A human being would have to be blind to look at this beautiful child and NOT see that he is in severe pain. And anyone who could look at this child and not feel compelled to move heaven and earth in order to alleviate his pain has no business practicing medicine. How much longer are our children going to remain invisible and unworthy of appropriate medical care? What kind of a society are we living in, in which we ignore the medical needs of silent children in chronic physical pain?

Bob Moffitt


Theresa expressed exactly what I felt after reading of Jane Doe's experiences:

"It is Jane's grace and endurance that will not only get her son the proper care but open those doors for the many, many more coming. God bless them each and light the way. We are with you."

Our family is with you even though we have never met.

Erik Nanstiel

That's horrific! My prayers go to "Billy" and his family.

My own daughter has had a long history of GI disease since her regression at 15 months of age. She is now 12. I manage her bowel disease with diet (to avoid feeding the yeast and also to avoid her intolerances such as Gluten & Casein)... and some very expensive probiotics. When the yeast does flare up and her behavioral issues start... I use gas-x pills (simethicone to break up the gas pain and provide comfort), zantac 150 (to minimize acid reflux and its damage) and stool softeners (to relieve constipation) until I can get her yeast under control again. Intestinal yeast is pernicious stuff.

So for the most part, she's free of constipation & diarrhea... she sleeps through the night and hasn't had a self-injurious episode in recent memory. She's also somewhat more tolerant of dietary slip-ups at school (her biggest confounding factor in all this).

It took me SEVEN years of frustration before I discovered the benefits of gas pills and Zantac 150. It can be the difference between screaming and bouncing off the walls... to a calm and happy child.

Steve Walters

Thanks for posting this, my heart goes out to the parents and the child.

Gastro-intestinal issues...constipation...acid reflux...headaches...viral infections... I don't see any mention in here of the opinion of the nutritionist. Has a food allergy test been done like those from www.alcat.com? Has a chiropractor adjusted the child? I would really love to see the child get more treatment than just modern medicine...

-Steve

Beth

This story is appalling. I'm so sad for this boy and his family.

This experience is so common it's why more and more people are relegating Western MDs to acute emergency treatments only. Natural health modalities, acupuncture, homeopathy, naturopathic medicine, diet, herbs are much better suited to remedying the root causes of chronic illness.

Holly M.

My heart is breaking for this sweet boy and his family. This is autism discrimination at its best.

Missy

What a horrible story. I am so tired of the medical community blaming the diagnosis rather than treating the actual illness.

My brother went through 2 unexplained stupors last July. The first stupor resulted in 2 nights in the hospital and on the third day, he was finally back to normal. A number of tests were run but there were no answers.

When the 2nd stupor started exactly two weeks to the day after the first, it allowed us to start testing at a different level and with more depth. The attending set out to discharge us since he was just "sleeping". I reminded him that my brother had just "slept" through the blood draw without even wincing and that there was no way in hell we were leaving without answers. Luckily, I prevailed.

Unfortunately, 2 more nights in the hospital didn't get us any new answers. We still don't know why it happened and it hasn't happened since. I know if he had been verbal and could tell us what he felt, we would have gotten more tests. I also know if he were developmentally normal, they would have kept testing until they found the cause.

Always putting out fires

Thank you for sharing this story with the readers of AoA. I could have written this about my son...with a few detail changes..right down to 15 year old non verbal with a history of Gi difficulties, immune deficiency and headaches.... He too is normally a sweet natured boy, But when in pain- it sets him into a flurry of self-injury and aggression. Problem is he has spent so much time in pain.

There is nothing worse than having to watch your beautiful child bite, scratch, pinch, hit, knee himself in the head...while in a fit of pain. And Risperdal is the answer? I don't think so.

I wish someone was researching "slow motility". We need some effective treatment protocols. My son has suffered from this almost every Spring.

The treatment we have received from mainstream doctors has for the most part been awful. Everything always seems to get blamed on the autism. It's downright frightening to see how clueless most doctors are when dealing with our kids.

For some kids with "autism" their lives are comprised of a series of medical crises. A series of fires that need extinguishing. It's exhausting and so stressful.

I wish all the parents in this predicament with their kids the strength and serenity to continue on. I pray for health and healing for our kids.

anonymous


To Jane Doe,

While it may be too late to know for sure or perhaps you have done the testing, given the ileus, immune system compromise and brain injury, it is possible that your son is suffering from a mitochondrial disease. One of the symptoms of mitochondrial disease is the autonomic nervous system. One would expect the gut to shut down as his is doing. This can be a progressive disease yet there are some treatments and supplements that aid in comfort and care.

Cathy

How dare you make the docs do their damn job? sheesh!! If it ain't easy - they are not interested. And if a parent is more informed than them...they automatically dislike you.
I'm so sick of being treated this way - and my son suffering. I hope you get some answers - thank you for sharing your very important story.
Peace.

Stagmom

When our Mia was having grand mal seizures - the chief of ped neuro at UH Rainbow in Cleveland blew us off with "she has autism." They break our kids and then have nothing to repair them.... And the one GI doc in the world who first showed an interest and ability to diagnose was run out of town and country alike on a rail. People with autism are lower than dirt on the medical scale - doctors fear our kids because they do not know and do not want to know the first thing about their internal injuries and manifestations. We went through this just a week ago with gut pain (not to this degree) and the only answer was "We can write you a scrip for antacids." I refused the scrip. Aloe vera juice and raw honey and diet changes did the trick. It's demoralizing. And then the Trine's and Tribs go out of their way to attack the few treatment options that we have and that can and do work for us. As I said, legalized and mandated discrimination against autism is the American norm. And disheartening. My prayers go out to Billy and all the Billy's in the world suffering because of a psychiatric diagnosis that docs refuse to see as ravaging the bodies in front of their faces. There's got to be an 8th circle of hell for them all.

Barry

The lack of accountability in today's medicine truly is a crime. I know that my son's autism ( and associated GI issues) are the result of vaccine damage. Because that's what autism is, vaccine damage.

It's not about genetics, and it definitely has nothing whatsoever to do with " improved diagnostic abilities". My sons injuries have caused me look very differently at the medical profession, and my goal right now is support the health of my children, so I never have to put them in a room with one of these hacks again.

While some doctors may have the best of intentions, the abilities of all of them are way overrated. Because the reality is that they're all guessing ~99% of the time.

Teresa Conrick

Thank you, Julie for sharing this. I know Jane and her extraordinary strength. The amount of pain her son, her whole family endures, is beyond comprehension. The lack of medical understanding by the mainstream doctors and their lack of compassion to this situation is heartless. There should be no controversy except there sure is a trail of denying care and proper testing to avoid the truth of vaccine injury by many of those folks. Seeing your child in pain that causes them to bite and injure those they love is something I am familiar with and the insanity of that level of pain is indescribable.

If people with souls and hearts can witness this and recommend Risperdal and then deny helping lessen pain by denying testing, what hope is there for any child? It is Jane's grace and endurance that will not only get her son the proper care but open those doors for the many, many more coming. God bless them each and light the way. We are with you.

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