Child Warrior: Dade
A Father Warrior's Autism Message: "Yes We Can."

Does Your Child Suffer from GLS?

Clown_doctorWhat if Treatment for Other Medical Conditions Was Like Treatment for Autism?
a fictional story from a parallel universe. (To which Kim adds, parallel universe...or CHOP.)

By Twyla Ramos

Once upon a time a mom was walking down the street with her son, holding his hand, enjoying a beautiful sunny day, when all of a sudden a car swerved up onto the sidewalk, hit the boy, and then sped away.

Fortunately, the boy’s only injury was a broken leg.  Unfortunately, there were no witnesses.  The mom immediately called for help on her cell phone, and an ambulance picked them up and took them to the nearest hospital.

As the doctor examined her son, the mom told him what had happened.  “We were just walking along, and this car appeared out of nowhere and hit him and drove away!” she exclaimed.

“My dear”, said the doctor with kindly condescension, “Studies have shown that the vast majority of pedestrians walk safely down that highway, therefore it is highly unlikely that your son was hit by a car.  In fact, statistically speaking, it is well nigh impossible.”

“Oh, but it did happen, Doctor!  I saw it myself!” insisted the mom.

“Clearly you are very emotional,” said the doctor.  “Studies have shown that emotional witnesses often see what they expect to see.  I know that you feel very sure, but please understand that science and medicine are not based on anecdote, but on higher forms of knowledge.  Everything that you think you perceive of reality is in your own head, and has not been scientifically validated nor subjected to peer review.  A famous philosopher once questioned an individual’s ability to perceive anything with certainty, and concluded that the only thing he was sure of was, ‘cogito ergo sum’ meaning ‘I think therefore I am’. 

“As long as we’re speaking Latin, I must also mention the fallacy of ‘post hoc ergo propter hoc’.  This must be very difficult for you as a parent to grasp, since you do not have any advanced scientific degrees, but even if your son was hit by a car this would not prove that the car accident caused this problem with his leg.  Don’t confuse coincidence with causation!  Are you saying that car accidents cause broken legs?  What about all the people who break their legs in their own homes?  Do you think that they have cars inside their homes?  That’s absurd!”

“Doctor, as you can see, my son is in a lot of pain!  Can we please stop arguing about causation, and could you provide the treatment that my son desperately needs.”

“Madam, after a thorough examination, I have concluded that your son has Genetic Leg Syndrome, also known as GLS.”

“Genetic Leg Syndrome?  Why, I’ve never heard of that!  But, if it is genetic, how could it have appeared so suddenly?”

“Oh, I am quite sure that there were signs before this that he suffered from GLS, but you did not notice them.  Studies have shown that parents tend to be in denial.”

“But he is on the soccer team – he has always run and walked without any problem!  And look at how his shin is crooked – it was never that way before!”

“My dear, I have years of experience and education in this field, and I am telling you that he has Genetic Leg Syndrome.  Sometimes GLS is progressive and worsens over time.”

“O.K., doctor, I’m not going to keep arguing with you, but what can you do for him?  As you can see and hear, he is crying out in pain.”

“Yes, GLS has a psychological component, and often children with GLS will cry out to get their parents’ attention.  It’s a type of narcissism.”

“Again I am asking you doctor, what kind of treatment can you provide to help my son?”

“A good behavioral program will help your son to manage the emotions and behaviors which often go hand-in-hand with GLS.  Of course, science is not yet at the point of being able to change the genes which cause GLS.  In fact we have not yet identified exactly which genetic aberration is the cause.  We have spent millions on research, and we are probably on the verge of a real breakthrough.  In the meantime, I advise you to contact your local agency and ask for educational and therapeutic services to make this syndrome more manageable.  Good luck!”

With that the distressed mother and sobbing son were ushered out of the office.  The mother called her best friend and poured out the whole story to her friend’s sympathetic ears.  “You know what?” said her friend.  “The same thing happened to my nephew.  My sister brought him to see an alternative practitioner named Dr. Smith who is part of the TBLN! group, which stands for ‘Treat Broken Legs Now!’  Dr. Smith took some x-rays and put his leg in a cast, and my nephew eventually got all better.”

The mom was at a loss – what should she do?  Could she rely on her friend’s advice?  She decided to call her pediatrician.  Remarkably, she was able to reach him, and she told him what had happened to her son and what the doctor and her friend had told her.

“X-rays and casts are highly experimental,” said the pediatrician.  “Studies have shown that x-rays do not help any medical conditions.  A large-scale study was done where 1,000 children with mobility issues were given x-rays, and after three months of x-rays there was no improvement in their conditions.  Casts have been shown to have a negative impact on children’s self-esteem, and to cause deterioration of the leg muscles due to the complete immobilization of the leg, with no movement or weight bearing for weeks on end.  A recent book by a leading expert Dr. Polly Moppet showed that these treatments are cruel, unsafe, and ineffective.”

“Then, what should we do??” asked the mother.

“You should follow that doctor’s advice,” said the pediatrician firmly.  “He is an excellent doctor.”

The mom hung up, more confused than ever.  Her son was now screaming in pain.  Desperate for help, she called Dr. Smith’s office and was encouraged to come in.  When she got there, they took some x-rays.  After the x-rays, she asked her son if he felt any better, and he said no.  She wondered whether the traditional doctors were right and this alternative medicine was bogus.  The doctor came in and showed her the x-ray.  “You see, his leg is broken here and here.  It’s no wonder he is in so much pain.  We will put the leg in a cast so that it can heal in the correct position, and for now we will give him some pain meds as well.”

The mother feared that the cast was an unproven experimental treatment, but the doctor seemed sensible and she agreed to try it.

Once the leg was set and they were home, her son seemed more comfortable.  The next day, she had to explain to his teacher and the school nurse why he was wearing this strange thing on his leg and using crutches.  The school nurse insisted that she obtain a note from Dr. Smith stating that the cast and crutches were necessary.

Weeks later when the mom and her son returned to Dr. Smith to get the cast removed, it turned out that the leg had healed very well.  The bones were straight and strong.  But he had lost some muscle in the leg due to the prolonged inactivity, so that leg looked thinner than the other, and he walked with some awkwardness, even a slight limp.  Dr. Smith assured them that with time his leg would develop strong muscles again.

The following week, the boy saw his pediatrician for his regular annual checkup.  The mom showed the pediatrician how well her son was doing, and told him about the treatment he had received.  The pediatrician said, “There is no effective medical treatment for Genetic Leg Syndrome.  If he seems better, it is just a coincidence.  Anyway, to me he seems worse.  That leg is now a lot thinner than the other, and at last year’s check-up he was walking without any limp.”

As more time passed, the boy went back to running and playing soccer, and his leg developed strong muscles again, and soon you could not even tell that he had ever had a broken leg.  At his next annual check-up, the mom proudly showed the pediatrician that her son was now fully recovered.  “Well then,” said the pediatrician, “clearly he never had GLS.  It was a misdiagnosis.”

The mom breathed a sigh of relief.  Her pediatrician finally seemed to get it!  “Yeah,” she said, “That genetic diagnosis was sooo crazy!  By the way, I was thinking about how that doctor said there had never been any other accidents on that street.  If someone is keeping track of accidents, I should have reported my son’s accident.  Is it too late now?  Who should I report it to?”

“Oh, if there had been an accident,” said the pediatrician, “the hospital would have reported it.  But I think you know in your heart that there was no accident.  Your son never had any serious problem with his leg.  He was just suffering from the normal growing pains so common at his age.  Or he had sore muscles from playing soccer like so many of my little athlete-patients.”

“But, doctor!” said the boy, “I did get hit by a car!  I know I did!”

The pediatrician chuckled fondly.  “Kids these days have such lively imaginations!”

Twyla Ramos and her husband have three children.  Their middle child, age 16, has both autism and Williams Syndrome.  Fortunately, their children’s pediatrician is not at all like the pediatrician described above.

Caveat:  Of course treating autism is much more complicated than treating a broken leg, and not everyone with autism responds so well to biomedical treatments. 
Moral of the story:  Mainstream “experts” should remove their blinders and pay more attention to the treatments which are helping so many people, and the causes which so many parents have witnessed.

Comments

Twyla

This article was translated into Italian here http://www.emergenzautismo.org/content/view/524/56/

Holly

Spectacular. I laughed so much and nearly cried.

Thank you!
Holly,
mom of Quinn, recovering from GLS

julia berle

Twyla,
This was incredible! So well done! I must say its a bit sad we have to get our chuckled about pointing out our reality.

Brilliant job.

Much respect,
Julia
baxter's mom

Ben's Dad

Thanks for the chuckle. I loved it. I will save this for future use. It would be great to see it illustrated, published as a childrens’s book, and left in waiting rooms.

It’s amazing how GFCF is not respected. Maybe if we formed as the Church of the Age of Autism, we could at least get our customs and holidays (doctors visits) elevated to having religious protection.

Twyla

Rileys mom, I hope your son feels better soon! It is so frustrating that special ed staff usually are not aware of the GFCF diet. So many kids have autism, and many (probably most) benefit from dietary intervention. Yes, teachers and aids are not dieticians, but I look forward to a day when there will be at least a basic knowledge of GFCF so that every parent will not have to be a pioneer.

You may have already seen this, but in case it's helpful - the TACA web site has some info on implementing GFCF at schoolat:

www.talkaboutcuringautism.org/gfcf-diet/essential-handout-for-aides-teachers.htm

I do sometimes lend Karen Seroussi's book "Unraveling the Mystery of Autism & PDD" to my son's teachers. Depending on the teacher, they may not have a long enough attention span to look through a book. A few years ago Karen Seroussi wrote an article about the GFCF diet for Parent's magazine, which is available at:

www.autismndi.com/news/display.asp?content=RESOURCES&shownews=20040729003254

This might be helpful in getting the teacher to understand what the GFCF diet is about. (Of course, IEP goals and your threat of legal action could be helpful too!)

RileysMom

Thank you Thank you Thank you...I'm making a copy of this to take to the school on Monday. Of course they are making me bring everything I have to "prove" Riley has an allergy to eggs. Or that he is by doctors orders GF CF SF Corn Free and Egg Free. This after they exposed him to Cinnamon Toast Crunch (the whole damn bag) 13 days of burning diarrhea with that. Then the exposure to egg in the form of French Toast sticks that they failed to tell one of the other mothers she was NOT to bring in. The was 4 more days of black diarrhea- what does black tell you? Bleeding in the gut. Which opened him up to a huge infection of his gut and left him throwing up for 4 days and a trip to the ER for fluids because he hadn't eaten or drank anything in 8 days total. Needless to say our DAN! is pissed. She wanted to start him on chelation this Nov and now they've pushed him back to Feb at the earliest. Oh and the kicker...we get to put him under because the DAN! wants to rule out ulcerations of the gut from mouth to butt. This is all because the school will not protect my child.
There is a boy in my son's class that has an allergy to peanuts. As you walk down the hall you can see this very large orange sign that states "PEANUT ALLERGY-NUT FREE ROOM" Where's my son's sign?
Weds I call to give them an update on Riley and I get attitude from one of the aides that works in the class. She is the first on my shit list come Monday. This will no longer be tolerated or they WILL be getting a call from my lawyer.
Love the post, you couldn't have made it more plain and simple for the door knobs I have to deal with.

Chris

Thank you. My daughter is 34 and I went through a stage that I thought I was the one with the problem. It is great to read humour in this way.

ElizaCassandra

From "across the pond":- I've posted a brief extract from Twyla's praiseworthy article (and a link to this site) in the "News and Comment" section of the JABS* forum in the U.K. at http://www.jabs.org.uk.

* JABS stands for Justice, Awareness and Basic Support, all of which are sadly lacking in the U.K. as far as "allegedly" vaccine-damaged children are concerned.

Grace

This was excellent! I'll be forwarding it to our local support group!!!

Twyla

Thank you for all your comments! To those who asked if you could pass this article on to others (such as pediatricians) that is fine with me.

Shauna- Together In Autism- www.togetherinautism.org

This is the perfect fictional article. It says it all... We are told that nothing happened and nothing can be done. This article gives outsiders a small peek into our isolated world. When we simply state, "Something happened to my child", we are pushed aside and ignored. We have to be our children only voice, their advocate as well as obtaining our own degree in the medical field of "Experience, Proof, and Investigation and Advocacy." If we don't do it, it won't get done. God Bless all of us on this journey. Our best to your and your loved ones.

Shauna-Founder
Together In Autism
www.togetherinautism.org

*Yahoo group: http://health.groups.yahoo.com/group/AUTISM-togetherinautismorg/?v=1&t=search&ch=web&pub=groups&sec=group&slk=1

Barbara Majeski

This is brilliant! I'm sending it to our former vaccine happy pediatrician, who thinks it was just "time" that recovered Max.

Maria

Loved your story Twyla!
I have thought about that sort of analogy a lot.

I often get tired of explaining the need for my son to avoid gluten and casein at all costs to the people who don't get it. Sometimes I just say, "If he had severe peanut allergy or diabetes and we were avoiding certain foods for that reason would you still be questioning me?"

Kub Marshman

Twyla,
Well done and right on the money.
Dear Some Physicians,
What are you afraid of?

nhokkanen

Great article, and apt analogies. How people have come to accept vaccine roadkill is beyond me.

AutismDad

Twyla,
Wow Great Story! I'm handing out copies if that is okay with you.

****Not suprised that the docs have their head in the sand because the driver of the hit and run was a colleague of Dr. Polly Moppet.**** Did you get an ID on that license plate of the care that hit your son ---- YES OFFICER IT READ "AAP CDC" and the make of the car was a "Merck-ury!!!"

-AutismDad

ObjectiveAutismDad

Very nicely done Twyla. Reminds of the battle I had about 12 years ago trying to get speech therapy covered for my 5 year old son who basically wasn't speaking. "He didn't lose the speech as the result of disease or injury, so it won't be covered". I guess if you don't really know what it is then it must not be a disease or injury!?

Patrick

YES, coincidentally my son does suffer from GLS as well, and what is really tough to decipher for his situation is that his leg got hit by eight cars at one time (4 cars hit his left leg and 4 his right). I am quite hopeful though that at some point I will convince his Dr. that he does have GLS caused by multiple cars.
When that day comes, I dread trying to figure out which car impacted his LEG worse as each car was of different make and model. To further exacerbate our situation, there were moments that at precisely the same time 2 of the cars impacted his leg at the same time. The combination may have been the issue, but still I don't know which 2 cars as there were several at time of impact.
What is terribly puzzling is that these cars are considered 100% safe for public use and those that opporate them must be lisencsed to operate (one expert, states that the impact of 10,000 cars should be safe). Some don't trust this professional who states this as he is a car salesman. They claim he is just out to sell more cars.

...and then there is a make and model that changes yearly and has quite an impact on the market. It's called the For Low Ummunity (FLU). This one is guaranteed to avoid accidents especially for those whom are accident prone. In fact if you don't buy this one you are sure to slip on ice during the winter.

Steve

I think about this exact same line of thinking often. The reason is I have a friend from high school that was in a severe car accident in his early 20's. He was impaired greatly after the accident - motor function and mental processing. Now many years later although he has made great progress he clearly was never the same physically or otherwise after that car accident. I don't suppose anyone would suggest that he had an unspecified genetic disorder that coincidentally kicked in at the time of his accident - but that is certainly how I feel those with their heads in the sand treat my child's obvious vaccine damage.


K Fuller Yuba City

What a beautiful bedtime story, and we all deserve a *Happily Ever After*
This should be written into a screen play for an episode of the Twilight Zone.

Sylvia

I love it!!! Someday historians will laugh at how foolish medicine was in the 21st century. How a supposedly advanced society could stick its head in the sand in the midst of a raging autism epidemic, and tell parents who witnessed it all that it was only a coincidence.

Doctors that deny an environmental link to autism will be grouped along with the Salem Witch hunters and those that insisted the earth is flat.

And Paul Offits great-great-grandchildren will pretend that they are not related to him.

Bruce Vanicek, Middletown, RI

Perfect timing! I am going to the RI AAP Annual Fall Event which is focusing on Autism. Strangely, they titled the event "Bright Futures for Little Folk". Also noteworthy is that one of the speakers talks is titled "Is Imus the doctor or you? Autism Treatments-the conventional and the unconventional"
Thank you for this, I will make copies and litter the meeting with them the best I can. I hope this is okay. If not, call me at 401-439-3070. Thank you. Bruce

Petra

I just love a good, sarcastic, tongue in cheek 'rub' on a crazy wacked out Friday morning.....
{and oh, the memories it brought back...)

Tanners Dad

Days of treatment like this will be in the past soon. I have hope. The choice is pretty straightforward now. I am a casualty of the financial crisis. I was told my job evaporated and the company skipped town on Monday.

I will shout from the mountain tops and scream in the valley until we all can walk hand in hand through this valley of darkness. We can never again let there be a child struck by autism (Vaccine Injury) and recovered without documentation. The words "Baby", "Mom", "BED" , "Hi Guy", and "Book" out of Tanners Mouth used appropriately for the first time in more than six years give me strength to fight on. Keep us in your prayers.

http://www.causecast.org/member/tanners-dad

Jeanne

What a way to start the day! Thanks for that Twyla!

L Land

Wonderful! I'm going to print several copies of this so that the next time I have to try to get medical attention and then of course get this kind of treatment and can hand them one of these. It will make me feel better even if I don't think they will actually read it.
My son is 17 and once a doctor hears the "A" word they stop. This summer he was sick and would not get out of bed. His behavior was similiar to several years ago when he had an H pylori infection and I told them this. The first 3 doctors would not do anything. No lab tests. No medicine. Just dismissed us. When we went to a 4th doctor I did not say the word autism (and she must not have been one of those superior new generation of doctors that are just better at diagonosing) so she, I think, just thought he was MR. This doctor actually did some lab work. Not very relevent lab work but something. But before we left and long before she got the results she told me that she thought that the problem was depression!
Depressed that he was sick and can't get medical treatment, maybe. That certainly was depressing me!

Amber DBTD

Love the story, your point was not lost on me (LOL), and that is a really creative way to make such a point while keeping the attention of people who might not agree entirely.

Great story. I never thought of it that way. I imagine a lot of doctors do treat you folks poorly, and it must be very frustrating and disheartening.

Amber DBTD

Love the story, your point was not lost on me (LOL), and that is a really creative way to make such a point while keeping the attention of people who might not agree entirely.

Great story. I never thought of it that way. I imagine a lot of doctors do treat you folks poorly, and it must be very frustrating and disheartening.

Anne Dachel

Brilliant!

What does it say about the medical community that they can pretend what they're seeing right before their eyes--it isn't really happening?

Anne Dachel
Media editor

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