Archive for August, 2011
Faydra and Toby at a party July 3rd of this year.
PORT ST. LUCIE — Tackling potty training, getting through a meal without two thirds of the food splattering to the floor, keeping shoes on for more than five minutes – these are typical challenges for moms of toddlers. In our household we face the usual toddler trials, (Well, not potty training. Not going there yet!) mixed into a routine that involves speech therapy, occupational therapy and play therapy.
Our youngest son, Toby, participates in these therapies because he has Fragile X Syndrome, the leading cause of inherited mental impairment. Fragile X Syndrome is a genetic disorder with a range of symptoms including speech delays, social anxieties, sensory processing issues, and possible physical characteristics. I, Toby’s mother, am the carrier of the disorder. I do not share Toby’s symptoms because, as a carrier, I do not have the full gene mutation. Even so, many carriers report issues with anxiety and depression and face the possibility of Fragile X-associated Primary Ovarian Insufficiency (FXPOI), a problem with ovarian function which can lead to infertility and early menopause.
Because of other family members with Fragile X, I decided to have genetic testing and genetic counseling before having children. When my husband and I learned that I was indeed a carrier and that I had a 50% chance of having a child with the full-mutation of Fragile X, we chose foreign adoption and then foster-adoption for our two oldest sons, but then… Surprise! Along came Toby.
Read in Full:
http://www.tcpalm.com/news/2011/jul/20/two-is-tricky—especially-for-st-lucie-toddler-wi/
- by Kristina C.
- July 29, 2011
- 7:30 am
It was ten years ago that my now 14-year-old son Charlie was diagnosed with autism. While we received information from the child development center in Minneapolis that diagnosed him and from the St. Paul Public School District about treatments and therapies, we also — as does every parent I’ve met — struck out on our own to find ways to help our little guy. My husband Jim brought home stacks of books from what used to be The Hungry Mind bookstore on Grand Avenue in St. Paul and the libraries of two local colleges and we started reading everything we could find on the internet. We quickly found lots of information — almost too much — about alternative, experimental therapies (special diets, nutritional supplements, dolphins, prism lenses).
While we often found plenty of anecdotal reports, often from parents, about the wonders of some therapy or other, evidence-based scientific research to back up claims about multivitamins, anti-fungal therapy and the like was always — is still — in short supply. But no one , not even physicians, seemed willing to just say “those claims are over-rated†or “that just doesn’t work.†The recent medical investigation of one doctor who’s offered a highly controversial treatment involving autistic children gives parents a clearer idea of what treatments to avoid.
Many alternative treatments for autism involve giving a child various supplements and even drugs for experimental therapies. A highly controversial treatment called for giving children lupron, which is a drug prescribed to men with prostate cancer, women with fibroids and sex offenders. It can also be prescribed for children who have a rare condition, precocious puberty, but in these cases it has been called “chemical castration.†It is not a treatment for autism, though it has been used by a Maryland doctor, Mark Geier, both in that state and in clinics called ASD Centers that he operates in at least eight states.
Geier’s medical license was suspended by Maryland Board of Physicians in April; a month later, the state of Washington also suspended his medical license. The St. Louis Post-Dispatch reports that Illinois will also be conducting a hearing on August 22 on whether or not Geier should be allowed to practice medicine in that state. Geier currently operates a clinic in Springfield, Illinois; he also has one just over the river in St. Peters, Missouri. It’s not clear if he is being investigated in Missouri according to a spokesman for the Missouri healing arts board.
Read in Full:
http://www.care2.com/causes/investigation-of-controversial-autism-doctor-grows.html
Published July 27, 2011
Associated Press
SAN DIEGO –  Too many people were on board a sailboat that capsized and killed two passengers during an outing in San Diego Bay for people with special needs, police said Wednesday.
The San Diego Harbor Police found that overloading, the vessel’s condition and the absence of lifejackets contributed to the March 27 mishap.
Investigators said the sail was held together with duct tape and staples, and the vessel had wear and tear to be expected of a boat made in 1988.
When it capsized, there were 10 people aboard the 26-foot boat, which is designed to sleep six people, said Harbor Police Chief John Bolduc. Investigators also found the weight on board was unevenly distributed.
San Diego County prosecutors reviewed the findings and do not plan criminal charges.
“We just don’t’ feel like we have enough evidence to support a charge of criminal negligence,” Bolduc said. “We can’t re-create exactly what happened that evening, but we think there are some contributing factors, but certainly none that rise to the level of criminal charges.”
Police had strong words for Heart of Sailing Foundation founder George Saidah, who was piloting the boat and frequently took passengers on trips for the Bloomington, Ind.-based charity.
“We are not labeling him an experienced captain, he’s labeled himself as that,” Bolduc said at a news conference. “We don’t know what his specific experience was, but certainly every vessel operator needs to know the limitations of their vessel and they ultimately have to oversee the safety of their passengers.”
Saidah did not immediately respond to an email seeking comment.
John Shean, an attorney and Heart of Sailing’s board president, said he had not seen the police report and could not comment on its findings.
“They spent four months looking into this,” Shean said. “I’m sure they’ve done a thorough job.”
In March, Shean said a gust of wind caused the boat to tip. He said Wednesday that he still believed that was a factor. However, Bolduc said investigators found no evidence that weather contributed to the mishap.
Chao Chen, 73, and his son, Jun Chen, 48, of San Diego, died from drowning. They were the grandfather and uncle of an 11-year-old autistic boy on the boat. Bolduc said neither adult was wearing a life jacket, though there were “plenty” available on board.
All eight others aboard, including an adult with special needs, were dumped into 55-degree water.
Life jackets are required for children under 16 and recommended for adults.
Read in Full:
http://www.foxnews.com/us/2011/07/27/police-sailboat-too-crowded-in-fatal-calif-mishap/
2:05pm Monday 1st August 2011
AN autistic teenager, known for suffering in silence, became severely ill during the days leading up to her death, an inquest heard last week.
The parents of Sophie Harmsworth were forced to call their doctor for a home visit after the 14-year-old suddenly started vomiting on February 8 this year.
Dr Mark Bevis, from the Highfield Surgery in St Albans, was allocated to visit Sophie at her New House Park home that afternoon.
At Hatfield Coroners Court on Friday, July 29, Dr Bevis was questioned by the family’s barrister Oliver Williamson about his home visit, and a subsequent one on February 10.
The court heard how Sophie was bringing up green vomit and was refusing to eat. In the parents’ statement, read out by assistant deputy coroner Frances Cranfield, they described her as looking poorly, with sunken eyes.
Dr Bevis told the court that he was aware of Sophie’s autism as he had seen her before, but not for some time.
When examining Sophie, knowing she did not like to be touched, he saw no signs of stomach pain or reflexes in the stomach muscles which would indicate she had appendicitis.
Speaking about the diagnosis he made after an examination he said: “I couldn’t find any evidence of appendicitis at this stage, I thought it was like she was suffering from acute gastroenteritis and said Spohie’s condition would improve in the next two to three days.”
He told the family they could call back if they had any further concerns and Dr Bevis was scheduled for a second home visit on February 11, following a call to the surgery by Sophie’s parents.
Mr Williamson questioned Dr Bevis about his diagnosis compared to the post mortem results which revealed Sophie died of acute peritonitis and acute gangrenous appendicitis.
He asked: “Did you not feel that vomiting and a temperature warranted a hospital visit?†To which Dr Bevis answered: “Both are symptoms of gastroenteritis.”
Dr Bevis added: “I made my decision on the information I was given and the examination. I felt that putting them together this was the most likely diagnosis.
“It would be unusual even for someone like Sophie who hides pain to not feel discomfort from appendicitis.”
Mr Williamson cross-examined Dr Bevis for more than four hours, asking why he did not record certain results of the examinations during the home visits, and why he felt gastroenteritis was the most likely diagnosis.
On the morning of February 12 Sophie was taken by ambulance to Watford General Hospital after her condition deteriorated.
On the journey her limbs started to become cold and her finger tips and lips were going blue. Soon after arriving Sophie was pronounced dead.
The inquest into Sophie Harmsworth’s death was adjourned and will be resumed in September for other witnesses to give evidence, following which the coroner will record a cause of death.
Source:
http://www.stalbansreview.co.uk/news/9171133.Inquest_begins_into_autistic_teen_s_death/
Humiliated: the Apollo Victoria has apologised to Gregor and Glyn Morris
4 Aug 2011
A West End theatre has been accused of “outrageous discrimination” after an autistic boy was forced to leave for making too much noise.
During a performance of hit musical Wicked, staff repeatedly moved Gregor Morris, 12, around the Apollo Victoria theatre following concerns raised by a “precious sound engineer”.
A manager initially asked Gregor’s father to move his family behind a glass screen at the back of the stalls.
The manager then told the Morrises to sit on some steps away from other people. Father Glyn, 41, was so upset at the treatment that he felt he had no option but to remove his son from the theatre.
Mr Morris told the Standard: “Gregor was not flapping or shouting. All I can think of is that he laughed too loudly but it was never at inappropriate moments. I asked to see the manager, queried the complaint and was told ‘it was our precious sound engineer’.
I asked if any of the audience had complained and was told, ‘No’. One member of the audience even stood up to fight our corner.
“I will never forget the look of shock in the faces of people nearby as we were asked to leave, and for the humiliation caused to Gregor.”
Gregor, who lives near Inverness, suffers from neuronal migration disorder and epilepsy. It was his first visit to London since he was a baby.
The family visited Hyde Park, the Eye, Legoland and Buckingham Palace during a three-day break before spending £270 to see Wicked, the story of a witch called Elphaba who struggles to overcome victimisation.
Read in Full: