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Bacterial Infection and Autism

Whisked Away

Ambulance

By Cathy Jameson

One of the parishioners in my Church fell at the end of Mass last weekend.  Within seconds she was surrounded by at least five people.  Two more were pushing their way from their pews rushing to where the woman lay on the ground.  The congregation is rather large, so I thought odds were that at least two of the people at her side had some sort of medical knowledge.  Two more were probably just Good Samaritans and one was just in the right place at the right time to be of assistance.  I stayed put obviously not needed as the woman was getting more attention than she probably expected when she left her house that morning. 

I thought to myself that if the ambulance arrives then I know these normally-everyday people have gone above and beyond the call of duty.  What a blessing it was for that woman to have quick and kind people to help her, to assess her situation, to figure out that medical care was necessary and to consider making a 911 call for her right there in the middle of the sanctuary!

Sure enough, as I left Mass not only was there an ambulance arriving at the side door of the Church but a fire truck was pulling into the parking lot.  Add at least six more people coming to help a stranger – and these people armed with professional medical training.  Six humans who never knew this woman existed were now at the ready, front and center doing only their best to save a life.  Truly another blessing for the woman who had no idea what her day was going to turn out to be.

I walked away from my Church proud of the people who put this woman’s needs first.  I wanted to say kudos to them and to give a huge thanks to the many rescuers.  The woman was going to be in good hands.  As I walked to my car, my five-year old and I said a quick prayer for the woman.  Izzy and I held hands, said the Guardian Angel prayer for the woman and asked God to keep her from serious harm. 

The farther from the building and the flashing lights of the rescue wagon I got I couldn’t help but think it a shame that a generation of kids hasn’t been given a smidgen of attention that this poor woman did in ten short minutes.  She went from standing on her own two feet to being surrounded by attentive, well-meaning, giving and determined individuals.  These former strangers were now working as a team eager to solve the mystery of what just happened and were getting help for her ASAP. 

One woman in a parish of at least 3,000 was tended to faster than I could count to ten.  She became the center of attention, the focus, the one and only.  A mini-medical summit about her needs converged within seconds.  Her new caretakers protected her with a human shield as they swooped to her side.  They made sure she didn’t further injure herself while lying on the tile floor.  They probably hatched a diagnosis that was ready to be shared with the medical folks en route.  Those medical folks arrived ready to transport the woman to the next set of experienced and highly-trained medical hands.  From there, in a state-of-the-art facility her injuries would be inspected.  Lab work would be ordered and testing quickly requested.  Serious discussions would be had.  More observations and examinations would occur as a new set of eyes looked for further trauma.  Within hours the woman would receive top-notch immediate attention, a diagnosis and individualized take-home instructions that would also be sent to her primary physician. 

For those who had stayed close by this woman in her time of need, backs would certainly be patted with a ‘Job well done, folks.’  Adrenalin would eventually return to its normal levels.  Passersby would surely smile and nod.  Maybe someone who knew the woman would wipe a tear and rush to hug one of the firemen who stayed behind to clean up any messes.  A day in the life of what started out as normal turned into a valiant affair.  Something to remember.  Something to be proud of being a part of.

It’s really quite simple – see a victim; rush to help the victim; enlist more professional help; watch the victim turn into the victor.  It’s too bad some parents in the autism community haven’t witnessed that kind of care from high-dollar professionals many have relied on for help.  These highly-trained people have still yet to even offer the kind of attention those simple, every-day church goers easily showered upon a stricken stranger.  What we are greeted with is a professional who hides behind their lab coats and fancy name plates.  We barely get a raised eyebrow when our children show up at their doorway.  Even after years of being sick, stagnating in their development or worse, falling completely off the typical charts, we do not hear a cause for alarm for our children.  We do not see mainstream medicine get all fired up.  We do not hear them acknowledge that they might have made a mistake.  We are not given a valid explanation of any kind.  Nor are we offered an apology.  Or respect.  Or further care.  

A generation of children are part of the biggest unaided victims in existence.  Some began day one of life full of trauma with their first vaccination.  Others’ ill health caught up to them during their toddler years when the over-inflated vaccine schedule ruled the agenda of the “well-baby” visit.  Some children survived those visits unscathed but only later fell completely off the typical childhood scales and crashed hard onto the autism spectrum.  Those that did fall fell as suddenly and dramatically as that woman did in my Church when seizures that weren’t there the day prior to that “well-baby” visit became daily occurrences.  Motor skills that were developed suddenly waned and disappeared.  Expressive speech that used to include sweet toddler voices completely vanished.  As their trauma intensified our children regressed into a detached, non-verbal, listless state.   Where are their rescuers?  When is their rescue team going to arrive?  Who is ready to take charge of this potentially fatal disaster we parents have witnessed firsthand?  When will these precious human beings get the attention they deserve?! 

Some days I feel like I’m still waiting for help to arrive.  Other days I know it won’t, so I dive right in and teach myself how to make things better for my son.  Since Ronan’s golden chariot full of shiny, happy, knowledgeable and helpful medical care never showed up I went hunting for someone who should have known and stopped it, who should have seen and reported it, who should have acted and stopped the next kid from being harmed.  Those people are out there.  But, it takes time, patience and a whole bunch of money to find them.

Until I found a handful of people I could trust with Ronan’s medical issues, like countless other parents I started life-saving techniques for Ronan on my own.  On the really good days when I feel like I have my act together, Ronan thrives and ends up teaching me a thing or two.  He shows me he’s capable and reminds me to never give up.  On the bad days, Ronan and I revert back to a detached, listless, non-verbal state--he because he is years behind his peers constantly working to catch up, and I because I have no more energy.  I can’t speak or do or give him anything.  We both are exhausted and feel repercussions from the amount of work it takes to keep a child like mine safe, healthy and properly educated.  

Ronan and I are fighters though.  He is a really determined little kid who doesn’t let his lack of speech, his underdeveloped motor skills and his other delays slow him down.  Determination.  I think he gets some of that from me.  He uses it all day long.  It’s something I need to remember to use every day as well.  It’s gotten us through several years of some of the hardest work we’ve ever had to do.   

I might never see a full work up for Ronan that includes every single one of his medical needs completely diagnosed, treated and managed.  The small team of trusted providers I do consult with can only do so much without relying on some pieces of mainstream medicine.  We might never uncover all of Ronan’s full potential because of the serious nature of those needs.  Who knows though?  With determination, as I promise to remember to inch my way forward, maybe I don’t need a rescue wagon after all. 

I have a team of believers and fellow parents as determined as I am.  Together we’ve done more for our children than others ever will.  It may take awhile, but we can do this.  Plus, if we wait any longer for a rescue wagon to suddenly appear around the corner , and then wait for the majority of society to see just how fragile Ronan and his lost generation are, we could be waiting a very long time. 

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

Carly

As a mother I saw my son's test results from his DAN dr and took them to an allergist the CDC confirmed the results.

I told the doctor that I suspected immune deficiency and he found it in my two babies and me(we are ALL on the spectrum)this from a mainstream immunologist.

We are going for genetic testing to look for mitochondrial disorders.

Last Friday I took my autistic son who was laying over anything he could find to the pediatric ER. I told them he was doubled over in pain and he is Autistic and that he had been screaming in agony. They figured out his bowels were badly impacted and treated him!!!!!! They even gave him something for his pain and helped me make him comfortable. We are now on 3 months of Miralax. We've done 5 days of enemas and he feels way better.

We go to mainstream doctors and nutritionists and they are helping us. I don't mention the vaccine theories just the fact that I believe his medical problems cause him to react differently.

Barry

When I see whisked away, I think of the trouble free life that my child was enjoying before vaccines stole it all away from him.

I don't need "a study" to tell me that my sons autism is really just vaccine damage. And I live for the day when the criminals responsible are held accountable for their crimes.

I now you're reading this Mr Offit, and my advice to you is to enjoy your freedom while you still have it. Because its only a matter of time before people like you, Brian Deer, Seth Mnookin, Fiona Godlee .... will be lucky to see the outside of a jail cell.

Christine Thompson

What resonates the most with me is "whisked away." I've done a great deal of whisking away since the onset of my children's autism. Disapproving stares from strangers, I whisk them away. Tough day at school for their educators, I whisk them away. Too much disruption for family holidays, I whisk them away.

I've stopped feeding into the out-of-sight, out-of-mind demand on the part of our "caring" society. It's not always fun but I refuse to accept the indifference of my fellow man.

Lesa W

As usual, Cathy, I found your article to be thought provoking. You wrote: Motor skills that were developed suddenly waned and disappeared. I wonder how many parents of kids diagnosed w/Autism, who believe the condition is directly related to vaccinations, have noted that their child lost motor skills. When Kyle was younger, we signed up for any research study that was do-able. We wanted to try to find a way to help Kyle or, if that wasn't possible, to try to prevent another parent from traveling on the road we were already on. Kyle was in multiple studies at Yale Child Dev. Center, Albert Einstein Med. Center, Westchester Center for Human Dev., Univ of Miami. Whenever we spoke about the development of Kyle's symptoms during the inescapable intake interview, we always emphasized his loss of motor skills. Inevitably, we'd be told, "That's very unusual w/Autism" or "We don't usually find that w/Autism; perhaps there is an additional condition". Now I wonder, "Is it really that unusual"? or "Is it really a common symptom for kids whose parents suspect vaccine injury and no one in the medical/scientific community is looking at that"? We had 1 dev. pediatrician actually say out loud, "If you've had a loss of motor skills, it just can't be Autism; I don't care what they've labeled it, but it can't be Autism. You don't loose motor skills in the development of Autism". When we shared our theory that giving Kyle the MMR and the (next time) multiple vaccines right after completing his first and then second ever course of antibiotics, did some kind of damage to his brain and crushed his immune system, we asked if he thought that scenario was possible. He said he couldn't write that in his report as he had no proof, but he thought we weren't crazy!If you loose motor skills, can the condition that results truly be Autism?

Rn mommy

I agree with Adam. We can use what we have learned to help one another. The medical community will not come to our rescue (this from an RN) I am thankful I tried GFCF with my children. I did not wait for a doctor to give me the okay (that would take too long!) I got immediate results and it only confirmed that we are on our own to recover our kids. Best Wishes to all of you in this fight! We need each other and God as our guide as we seek to recover our children.

Cynthia Cournoyer

I think part of the problem with vaccines is that people don't fall over in the doctor's office immediately after a vaccine. It's as if you can walk out of the office on your own, then the vaccine has absolutely nothing to do with any subsequent medical problem.

People like simple. Lady falls, lady needs help. With autism, nothing is simple. Our potential "rescuers" will help us as long we never mention vaccines. It's like trying to find an answer to diabetes and you aren't allowed to look at insulin.

barbaraj

We need to stop using the label they gave us, jmo, but I have six children five of which are vaccine damaged. Forget the bs about fiddling with the schedule ,it doesn't work, the same for delaying until we "think" they are no longer susceptible to damage, a lie as well. Stop gathering in the name of autism, let others join in, expose the real damage, I have one with crohn's following mmr, one with an acquired heart disease,discovered at age 12, one similar with KS ( no not kd, it's not a disease not in my book) one on the spectrum,one with asthma, and ONE completely unvaccinated that shares genetics with the others who has had two colds in his four years. If parents of once normally developing, healthy babies would share the truth surrounding the destruction of this health including the SIDS cases,perhaps as a vaccine damaged GROUP we could get somewhere. Instead, we know, yet we allow the medical profession to bully us, to separate the kids into all of these little subgroups when in all reality they are in the same group...vaccine damaged children.

Heidi N

I recently watched a tv show about alligators dying in mass amounts in a certain Southern lake. It took several specialists 6 years to figure out why. They first found out that they were dying by drowning because they were developing nerve damage which caused their brain and muscles not to work correctly. They tested the water and said that the water did not have too many toxins. So then they examined their immune systems, and said all was working well. They then looked into their stomachs and noticed that they all had chad fish in their stomachs. They learned that chad fish thrive in highly green lakes where lots of algae grow, but most fish do not. They discovered that chad fish have grown in population in this lake recently when the algae grew. They found out that nearby farms were of course, dumping indirectly, into the lake extra fertilizers which made the extra algae. They finally discovered the cause of death was that chad fish have an enzyme in their body that blocks a necessary B vitamin from being absorbed. They confirmed this by supplementing the B vitamin, and the alligators revived. This is very similar to autism in that they appear to have an inability to absorb nutrients across the blood brain barrier, namely B vitamins. Of course, they also have many more issues, but I guess what struck me the most about this story is that we can find the problem of what was killing the alligators, yet can't help humans who are failing ill to not just autism, but numerous medical issues, such as cancer, diabetes, and numerous auto-immune conditions. For my family, I am not waiting for the government to get it right, or the FDA or EPA, I just seek out those with successful results and follow them.

Terri Martino

As a parent with an adult daughter with autism, what you described still rings true in my heart and mind. Seeing her slip away into autism and frantically searching for a cause and any effective treatment has been such a traumatic experience. I have become jaundiced about the medical community and I am a RN! I felt trapped when I took her to the doctor and he told me I was reading too much! Put the medical books away - she is a late bloomer, she will catch up, blah blah blah. But...but (I said) her development is not just late, it's out of order and her behavior is odd, she cannot say words, that she started saying. And when she decides to say anything it sounds like Mickey Mouse and it is not even related to the moment. Still I was told not to worry. And frankly, not much has changed. And that's what is really scary. I can look back 24 years and still see the apathy. What is it going to take!?

Amanda Blinn

Our former nanny got her massage license and worked on our son for years. This helped him detox...it might be useful for other kids, even for IMPACTION. If the gut is not functioning the toxic pathways are in trouble, too. Just letting you know something we do...we also follow the DAN protocol.

tiredmom

I can relate so much to the emotions you express in this article. When our children stop talking and stop sleeping and start screaming why is this just seen as something they were born with? Where are all the people rushing to their side like they did for the woman in your church? Was the woman in your church charged a fee by the other churchgoers who assisted her? We have never encountered anyone who has tried to help my son over the years without charging a fee (usually a very high fee. Family and friends no longer want to be part of our lives. If a man smokes all his life and develops cancer or heart disease he can get excellent care based on the best research but my innocent child is told there's nothing we can do, go home. Autism is so very, very disillusioning!

Glass Half Empty

"It’s really quite simple – see a victim; rush to help the victim; enlist more professional help; watch the victim turn into the victor."
You give the mainstream medical system too much credit. More likely this lady will end up seeing doctor after doctor and never get to the bottom of why she fell that day. Each specialist will have an opinion, and put her through some expensive test, then put her on a drug. Her health will get worse and worse as the drugs cause their own side effects.

Adam M

RE: I have a team of believers and fellow parents as determined as I am. Together we’ve done more for our children than others ever will. It may take awhile, but we can do this. Plus, if we wait any longer for a rescue wagon to suddenly appear around the corner , and then wait for the majority of society to see just how fragile Ronan and his lost generation are, we could be waiting a very long time.

EXACTLY! This is why I don't waste time with petitioning the government or the medical establishment. They can't lend a helping hand, the public would see the how bloody it is. No, this is our cross to bear. And we are going to be much better off in the end for it. Think of the fountain of knowledge you have become in your pursuit of helping your child. Think of the many ways God edified you through this fire. He has taught you patience, grace, forbearance, our human frailty and folly. He has also taught us how to be blessing to others with our insight into so many problems. Insight that could not have come to us had we not had these trials.


Romans 5:3-5

Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

Anne Dachel

Cathy,

Brilliant point! I agree with Barry. If this woman were treated like our children are, things would have been much different. No one would do anything. They'd still be standing around scratching their heads. BUT BOY WOULD EVERYONE BE AWARE!

And I agree with Kim. Thousands of kids regress right before their eyes and they're happily taking credit for it calling it "better diagnosing."

History will record the response to the autism epidemic as the worst example of medical malfeasance in history.

Anne Dachel, Media

Rich

They know if they help they will expose themselves as the cause of the disaster.It is much easier to demonize us and say if we were better,warmer,thinner,younger then the disaster would not exist.

Teresa Conrick

Great post, Cat! I am with you on the "determination" piece.

Cherry,

Here are somethings that can help but if he does not get better, I hope they can see a GI doctor to at least make sure he is not impacted.

Magnesium Citrate: 2-3 x daily
VIT C
Aloe Vera Juice - 2 tsp daily or more for regularity, more for constipation.
Prunes, prune juice
Oxypowder-http://www.oxypowder.com/?a_aid=142306
Fiber and can also use TruFiber - http://www.trufiber.net/default.aspx

TJ

Cathy, So true. Our kids are not voters, taxpayers, ect...
so not worthy of attention. ( not to mention the way they
were injured ). Just wait until a lot or them hit 18 for soc. sec. THEN the ____ will hit the fan. ( I think in
about 2 or 3 yrs. )
Cherry Sperlin Misra, do they use enzymes or yeast figher
supplements ??? Really depends on the child. Sounds like a job for a gut doctor. Do they have them anywhere except Austin, TX ? Too bad we have to heal our own children in the
good ole USA. Doctor's too chicken to learn something new or accept the way they goofed up. I can't imagine the pain our kids go through every day, gut, brain, or whatever. It's inhumane to ignore. And just about everyone in the world can ignore it - but their loving parents.

Jewels

Another well written and poignant article, Cathy! Just like so many other parents out there, we gave up on the medical professionals and rebuked their "just learn to cope with it (Autism), as there is nothing that can be done to help your child (who at the time was 100% nonverbal and would run back and forth down a wall chasing his shadow. It was when we discovered later, after 3 years of schooling he could not read, write or spell (some classify children with Autism as intellectually challenged and, therefore, UNTEACHABLE) that this Mom said enough is enough. So I spent many sleepless nights and countless hours researching and seeking out those in our community that would "listen" and "help." Six years later, while we are up to our eyeballs in debt, we have our son back, who is not only 100% verbal, but an A/B Honor Roll student. The challenge is exhausting and I promise you WILL meet with ton of resistance (non-believers in the ability to heal these children), but persistence and "stubborn as a mule" personalty go a long way. This Mom's motto was "Don't tell me I can't do something, because I WILL always prove you wrong. Where there is a WILL, there is a WAY!"

Dan E. Burns, Chair, the Autism Trust USA

Powerful, Cathy. It brings back memories. Ben fell mute, the meltdowns began, alarm bells rang, and no rescue wagon arrived. Stunned, I asked myself, “How can this be happening in America?” That was twenty years ago. It is still the relevant question.

But today there is help, just not from most pediatricians. Check out Generation Rescue.

Autism Speaks is not our 911

Ambulances and firetrucks don't come to mind when you receive letters in the mail that open with, "Last month - April - was autism Awareness Month and we kicked it off by celebrating World Autism Awareness Day on April 2. It was an inspiring time."

That was from yesterday's letter in the mail from Autism Speaks who obviously does not care that many people in the autism community object to the word "celebrating" being used in the same sentence with "autism."

We really need to focus all of our energy on moving people away from Autism Speaks walks and creating walks of our own - by and FOR people who truly walk the walk every day.

If we're waiting for help to arrive, it will never come from Autism Speaks.

John Stone

Cathy

Memorably stated.

John

Stagmom

Agree100% CAthy. I've been saying for years that while our kids are being maimed and even killed on a busy road, mainstream media, medicine and even Autism Speaks has been all about buying more ambulances to whisk away the injured instead of taking any measures to keep the kids from being injured in the first place.

Barry

This is a great analogy.

If all medical issues were treated like autism, then that poor lady would have been left on the floor, and the communion line would have simply snaked around her body.

And her sudden collapse would likely have been explained as a sleep disorder, completely normal for a woman her age. People have always been collapsing in church this way. In decades past, less enlightened spectators would have simply viewed this as an impromptu nap.

The incidence of medical collapse isn't really increasing. Spectators now are just 110 times better at recognizing it than they were back in 1980.

Cherry Sperlin Misra

WE must always remind ourselves and try to explain to those who have less experience, that there is always hope for change for autistic kids. In one case that I have seen in my school the five year old child seemed to be doing almost nothing at my school. I had to tell the parents up front that we did not seem to be doing anything for their child, but they seemed happy to just have him going to a school. Probably no other school would keep him because he sometimes gives other kids a forceful push. And then, after about 6 months he began to play with toys, in a fairly normal manner, and he built block towers, as your son did years ago, and he spends a long time on the swing. With apparently no speech earlier, recently a child tried to pull away his car and he pulled it back and said "Omar"- his own name, so he clearly meant, " This is Omar's car" So, suddenly, it seems that a child who appeared almost subhuman, is now clearly a child , with normal thought processes to at least some extent. And it must have been there all along, but we could not see it.
If it is difficult for us to understand these kids, it is more difficult for others. I think it is important to get out the stories of the autistic kids who later began to communicate. Those are really eye-opening.
By the way, this boy , mentioned here , has a bowel movement only once a week. Any suggestions ? I dont think his parents can implement the GFCF diets- so anything else?

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