Brain Inflammation – Its Similarity In Autism and ME

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I have given this link to my daughter, as she was just stating today that she thinks she may have ME also. It may just be the Autism. We have noted several times that both she and I share certain “traits” in our illnesses. This may explain why.

Sunshinebright

I follow “Onward Through the Fog,” a blog on blogspot, authored by Erica Verrillo, a talented person who suffers from ME (Myalgic Encephalomyelitis).  Her reports and research are top notch.

In this particular posting, Erica reports on the similarity of some findings affecting Autism and ME/CFS.  These findings have to do with brain inflammation.

A John Hopkins study acts as confirmation that excitotoxicity caused by chronic inflammation is central to autism.
activated microglia
Excitotoxicity has been put forth as a mechanism of ME/CFS by a number of clinicians and researchers, including Drs. Paul Cheney, Jay Goldstein, Morris and Maes, Martin Pall, and, most recently, Jarred Younger.

 

 

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If You Need A Smile, Watch This….

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This ad from John Lewis Insurance Co. really hits home. A young girl plays ballerina to the Elton John song “Tiny Dancer”. Sit back, hit play and enjoy.

14 Wonderful, Unique and Funny Ways Kids Have Explained Disability

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-Fern

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http://themighty.com

At The Mighty, we know that sometimes kids can offer us a brand new perspective on the world. So, we decided to ask our readers who are parents to share some of the wonderful, unique and funny things their kids have said about their disability.

These were your answers:

1. “‘I’m not Autistic, I’m Cara.’ My now 9-year-old daughter said that when someone called her autistic instead of saying she had autism. Well played, baby girl. Well, played.” – Kim Vivanco

2. “My cousin says she has ‘Up syndrome’ because she’s happy, not sad.” – Cassie Collins

3. “My oldest son is in fourth grade and decided he couldn’t do his math homework because of autism. Nice try, kiddo.” – Stephanie France Fry

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4. “My husband’s student once said, ‘I know I’m special, but why do they call me Ed?’ – Liz Gorgue Rosas

5. “My 3-year-old daughter tells others she has ‘terrible palsy.’ One of these days she’ll be able to pronounce ‘cerebral,’ but today is not that day.” – Ashley Mobley

6. “Another child asked my daughter what her hearing aids were for. She responded, ‘They are like glasses for my ears!’” – Kerri Goff

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7. “My 4-year-old daughter overheard her father and me talking about her autism diagnosis. She turned and looked at us and enthusiastically yelled, ‘I awesome!’ Best mispronunciation she has ever made.” — Kendra Hopkins

8. “Our daughter sometimes wears a gastric drain bag to empty food that is too much for her to handle. She gets a lot of questions and stares. Once, when she was about 6 years old, a woman after a long hard stare said ‘OK, I have to ask, what the heck is that?’ Our daughter, without skipping a beat replied, ‘It’s my own personal slushy, you want to try some?’ I could have exploded trying to hold in my laughter. ” — Kate Sytsma

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9. “Our oldest son, Xavier said to a friend, ‘My brother, Cooper, has autism. Do you know what that means?’

Friend: ‘No.’

Xavier: ‘It means he likes his hotdogs not touching his French fries and that we give him extra time getting out of the car.’

Friend: ‘That’s cool.’

Xavier: ‘You know what else is cool about autism?’

Friend: ‘What?’

Xavier: ‘Everything. Especially Cooper.’”  Makenna Dubay

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10. “My son has worn ankle-foot orthotics for years. He used to be embarrassed and hide them under pants. If someone would say something he would cry. Then, one day, he chose to wear shorts. He was asked by a child what happened to his legs and he said, without hesitation, ‘I fell off a cliff and lived to tell about it.’ The child’s eyes got big and then he walked away, and I turned my head and just about choked through my laughing. Through the sarcasm, my son turned a corner on his disability!” — Julie Bayles

11. “One year at camp another camper asked my daughter, ‘Why do you use a wheelchair?’ to which she replied, ‘Because I’m awesome.’ When that response wasn’t enough, the kid looked at a counselor and said, ‘No, really, why does she use that?’ The counselor then said, ‘Because she gets tired quicker than you… and because she’s awesome.’” — Alexis Snyder

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12. “I have tics, and I don’t mean the bugs.” —  Kristy Madden Kassebaum

13. “My brothers and I all have autism, but this was my youngest brother’s way of explaining his Asperger’s syndrome:  ‘If my dad’s head was a golf ball, my head would be a beach ball.’ Nobody understood what he meant except him and me, and that’s all that matters.” — Hannah Walker

14. “God had to level the playing field a bit for everyone else, so he gave me spina bifida.” — Jake Siem

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These 5 Hero Moms Will Give You Extra Reason to Celebrate Mother’s Day

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  I consider my Mom a hero. The advocating for ME and Autism she does is amazing. She is the one person I can count on to show understanding and unconditional love to a daughter who’s road is rocked by chronic illness. All my love, Mom, today and always.

The following story is from “Time”

Written by  @tcberenson

From saving a drowning couple to rescuing kids from a bear

It’s true that every mother is a hero, which is why we have Mother’s Day. It’s just one small day of the year for people to appreciate everything mothers do for their families. But it’s also true that all acts of maternal heroism are not created equal. Dealing with the daily challenges of raising kids is one thing, but saving children from a bear is quite another. So here, in honor of Mother’s Day, we present five hero moms of the year.

  • The Mom Who Rescued Her Kids With a Pizza Hut Order

    Cheryl Treadway was being held hostage with her children in Florida and figured out how to escape — using an order from Pizza Hut.

With Treadway’s boyfriend holding her and her three children their home at knifepoint this week, Treadway ordered from Pizza Hut on her phone and asked, in the comments section, for someone to call 911.

Thanks to Treadway’s creative thinking, an employee at Pizza Hut called the police, who then rescued the family.

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  • That resolve ended up being life-saving when she saw a couple drowning off the coast of Cancun last December. There was no lifeguard on duty, so Loiselle, a single mother of two, dove in herself, swam out and brought the couple safely to shore.“Words cannot describe my gratitude but I’ll try,” the man said in an interview. “You saved my girlfriend’s life and most certainly mine too.”Calgary woman rescues, rescues couple, coast of Ca

    Tamara Loiselle and son, reading a letter of graditude from the couple.

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    • The Mom Who Got Her Family Out of a Burning House

      Morgan Stone, mother of five, had only seconds to spare to get her entire family out of their Indiana home before it was engulfed in flames last December.“It took me a second to really realize what was happening. When I opened the bedroom door and it was full of smoke, it took me a minute to grasp that this was a serious house fire,” Stone said.She sprang into action and got her five kids, her father-in-law and her pets out of the house before the whole structure burned.“He says I’m a hero,” Stone said of her fiancé, “But I don’t think I’m a hero, I’m just a mom who got my kids out safely—nothing means more to me than them.”

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      The Mom Who Saved Her Neighbor’s Kids From a Bear

Candace Gama saw her neighbor’s 6-year-old sons waiting for their school bus. Then she saw the bear.

Billings black bear (copy)

The black bear was about 20 yards away, so Gama drove her car between the bear and the kids and yelled at them to get in the car. Then to speed things up, she grabbed the boys by their backpacks and dragged them inside.

According to a local Montana newspaper, Gama’s 5-year-old daughter said her mom was the hero of the day.

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The Pregnant Mom Who Saved Her Family After a Terrible Car Crash

 

Erika Grow’s car hit black ice on the road in Wyoming last November and flipped three times, throwing her husband and sister from the car and leaving her two young children trapped in the back.

Even though she was eight months pregnant, Grow was able to clamber to the backseat and unbuckle her children, ages 3 and 21 months. She put them in suitcases to keep them warm in the freezing Wyoming weather.

Grow’s husband and sister went to the hospital, but her two children and unborn baby were unharmed.

Photo taken after birth of the newest Grow family member.

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In Their Child’s Eyes

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Many parents doubt that they are “doing it right.” This heart-warming video brings attention to this issue. (Even though this video is about mothers, there are fathers this would pertain to also.)

So, ignore the “Happy Mother’s Day” at the end and enjoy! (Anyway, everyday is Parent’s Day!)

“Justina’s Law” Introduced in Congress – Is This the Beginning of the End for Voodoo Medicine?

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Reblogged from “Onward Through the Fog”

Posted: 30 Jun 2014 06:45 PM PDT

Justina’s father carries her home after her 16-month incarceration

The saying that politics makes strange bedfellows has gained a new dimension today. In a rare bipartisan effort, two staunchly conservative congressmen, Michele Bachmann and Tom Marino, have joined forces with liberals Karen Bass and Jim McDermott to propose “Justina’s Law.”

Justina’s Law would bar federal funding of any institution that uses wards of the state for medical experimentation. On the surface, this appears to be a law fraught with loopholes. It is possible that mental hospitals could justify forced psychiatric treatment on the grounds that it is usual and customary.

Usual and customary treatment for all mental illnesses (other than schizophrenia and psychosis) consists of therapy (e.g. CBT), sedatives, and/or antidepressants. These are not actually treatments, because there are no objective tests for mental disorders. That is because the majority of mental disorders are not illnesses; they are simply reflections of social conventions and cultural mores of the time. Given the lack of any scientific evidence for the existence of somatoform disorder – an antiquated diagnosis left over from Freudian psychiatry –  it would be a stretch to claim that its treatment is anything but experimental.

The treatment Justina was given throughout her stay as a ward of the state was not approved by Justina’s parents, who have consistently maintained that the state of Massachusetts experimented on their daughter. Justina’s previous diagnosis of mitochondrial disease (an inherited condition also suffered by her sister) was disputed by a neurologist at Boston Children’s Hospital. The neurologist re-diagnosed Justina with “somatoform disorder.” Her parents were then accused of “medicalizing” her illness. Over the next year, Justina was refused medication for mitochondrial disease, and placed in a locked mental ward. Eventually, the state moved her to foster care. During the 16 months she was a ward of the state, Justina’s condition deteriorated until she could no longer walk or stand.

Justina’s Law, if passed, could have profound ramifications for the ME/CFS community. Hundreds of children with ME/CFS have been taken from their homes on the basis of psychiatric diagnoses that are just as unsubstantial as somatoform disorder. This law would give legal grounds to parents suing to get their children back. It might even help get some of these pseudo-psychiatric “diagnoses” relegated to the dustbin of history, which is where they belong.

Please ask your representatives to support H.R. 4989, “Justina’s Law.”

Find your representatives here.

You may use this letter as a template.
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Please support H. R. 4989, “Justina’s Law.” Justina Pelletier was incarcerated by the state of Massachusetts for over a year based on a psychiatric diagnosis for which there is not one shred of scientific evidence (somatoform disorder). As a result, Justina’s disease (mitochondrial disease, a rare inherited disorder) has progressed, and she is no longer able to walk. Justina is not the only child to have suffered this fate. In 2009, Ryan Baldwin, a boy with myalgic encephalomyelitis (aka chronic fatigue syndrome) was taken away from his family in North Carolina and placed in foster care, where he grew steadily worse.

Please prevent more cases like Justina’s and Ryan’s. Support “Justina’s Law.”
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Reps. Bachmann, Bass, Marino, and McDermott Introduce “Justina’s Law”

Michele Bachmann, Jun 27, 2014

Washington, D.C. — Rep. Michele Bachmann (R-MN) joined with Reps. Karen Bass (D-CA), Tom Marino (R-PA), and Jim McDermott (D-WA), the co-chairs of the Foster Youth Caucus, to introduce bipartisan legislation that prohibits federal funding for medical experimentation on a ward of the State.

The bill, H.R. 4989, nicknamed “Justina’s Law”, is a response to the recent case of 16-year-old Justina Pelletier, who was finally released from Boston Children’s Hospital (BCH) back to the care of her family after a 16-month custody battle between the Commonwealth of Massachusetts and Justina’s parents.

BCH and many other hospitals have an internal policy that allows for children who are deemed “wards of the State”, including foster children, to receive treatment or be involved in research that presents great risk even if there is no prospect of any benefit to the child.

“Whether it is one child or thousands, it is our duty to guarantee that children are kept safe from harm while in the custody of their respective states. Not all these children have families like the Pelletiers willing or able to advocate on their behalf. Sixteen months ago, Justina was a figure skater. Today, she cannot stand, sit, or walk on her own. It is unconscionable what happened to Justina, and we must do all we can to prevent it from ever happening again. Removing federal funding from such experimentation is an important first step.” – Rep. Michele Bachmann (MN-06)

“Children need to be loved and cared for, not treated as something to be experimented on. Foster children are particularly vulnerable because they may not have parents to advocate for them. This bill will make it clear that children are blessings, not guinea pigs.” – Rep. Karen Bass (CA-37)

“The bonds between children and parents is sacred. The closeness and level of intimate understanding between them transcends our societal constructs. In Justina’s case, she was kept from her loved ones and essentially detained by the hospital and the state. She was lucky to have parents that fought for her and leveraged the support of the media and public officials. Yet too many children do not have parents to speak for them and look out for their health and best interests during times of physical and emotional vulnerability. That fact saddens me. It would sadden any person who knows the power of love and affection. That is why I am proud to support Reps. Bachmann, Bass, and McDermott on this legislation because no child, with parents or not, should be subject to medical experimentation under the legal designation as ward of the state.” – Rep. Tom Marino (PA-10)

“The strength and bravery that Justina Pelletier and her family have shown in the face of incredible hardship is a guidestar for us all. We must act to protect and cherish children in the care of a state and make sure that they are not the subject of risky medical experimentation. I look forward to working with Reps Bachman, Bass, Marino and countless other colleagues from both sides of the aisle to pass Justina’s law as quickly as possible.” – Rep. Jim McDermott (WA-07)

Click here to view the full text of H.R. 4989.