Tuesday, November 24, 2009
Beckman Oral Motor Therapy-Sometimes It All Comes Together
A few months ago I discovered a new oral therapy while reading through posts on http://www.smaspace.com The therapy is called Beckman Oral Therapy http://www.beckmanoralmotor.com/. Because SMA Type 1 patients get jaw contractures and have very limited range of motion in their jaws I have always been concerned about what the future holds for Shira's ability to keep speaking. I knew I had to take some kind of action before it was too late and this video appeared http://smaspace.ning.com/video/romansspeech-therapy-oral Today the head speech pathologist came over to improve the techniques I had learned by watching the video. I will post a video soon as well as the instructions I received from Phil Harmuth on Beckman Oral Therapy. I can't say enough about Shira's progress from our daily Beckman routine. Shira's jaw has more movement than ever before and she can actually seperate her upper and lower jaws. If you aren't already performing oral therapy on your child I strongly suggest doing some form of oral therapy to help prevent contractures and keep some range of motion in the jaw. This therapy also has relieved a lot of pressure in Shira's face. Sometimes everything just comes together and this is one of those days. Thanks Phil Harmuth and the Queen Alexandra Centre!
Wednesday, November 18, 2009
2 Great Books By Christopher Reeve--Advocacy
"So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable. If we can conquer outer space, we should be able to conquer inner space too--the frontier of the brain, the central nervous system, and all the afflictions of the body that destroy so many lives and rob our country of so much potential."
While Christopher Reeve did not suffer from a degenerative disease his catastrophic accident which left him a quadriplegic and vent dependent changed his life forever. Christopher Reeve's insight into living with paralyzes and how it effects your life is profound. Christopher wrote 2 books and I strongly suggest everyone read them as they give great information on family dynamics, hope, and the books are heavily weighted on advocacy. Without Chistopher Reeve stem cell research wouldn't be where it is today as he really increased funding for stem cell research as well as political will to a whole new level while he was alive creating the environment or stepping stone for scientists today.
Christopher Reeve "Still Me": This book deals with Christopher before and after his accident. This is his first book and obviously an inspirational story of his entire life. You get an eyeful of his child hood through adult hood, his injury, emotional and physical trauma and how he rebounded into one of the most effective advocates for the disabled in the United States ever!!
Christopher Reeve "Nothing Is Impossible": This is a must read for us advocates!!! The book is not deep but it goes into Christopher's thought process's one goes through after a catastrophic diagnosis or injury:
1) The First Decision
2) Humor
3) Mind/Body
4) Parenting
5) Religion
6) Advocacy
7) Faith
8) Hope
Christopher Reeve was an avid sailor and the lighthouse does not have religious meaning here. Here is an excerpt from his book:
"When the unthinkable happens the lighthouse is hope. ONce we find it, we must cling to it with absolute determination, much as our crew did when we saw the light of Gibb's Hill that October afternoon. Hope must be as real, and built on the same solid foundation, as a lighthouse; in that way it is different from optimism or wishful thinking. When we have hope, we discover powers within ourselves we may have never known---- the power to make sacrifices, to endure, to heal, everything is possible. We are all on this sea together. But the lighthouse is always there, ready to show us the way home."
Monday, November 16, 2009
4 year-old Shira Fisher is terminally ill in the news
CLICK ON ME TO WATCH VIDEO OF NEWS CAST
VICTORIA - 4 year-old Shira Fisher is terminally ill with Spinal Muscular Atrophy or SMA. Her parents were told she had months to live, when Shira was first diagnosed four years ago. But the young girl continues to defy the odds.
Her parents, Brad and Maxine, have become advocates for Shira and other SMA kids. Last week, they were told their application to get Shira a vaccine to fight out RSV (a virus that attacks the respiratory sytem) was denied. Shira has twice beeen hospitalized with RSV and both times nearly died.
Her parents believe the vaccine can keep Shira out of the intensive care unit this winter. The Fishers contacted A News and within 48 hours, BC Children's Hospital announced its vaccine protocol for the province would include children with SMA who are under 15 kilograms. Shira now qualifies and was given her first set of anti-RSV shots today.
The Fishers believe Shira's original rejection was over money - the vaccine costs about $8,000 and they worry about other families with special needs children won't fight the system to ensure quality care.
VICTORIA - 4 year-old Shira Fisher is terminally ill with Spinal Muscular Atrophy or SMA. Her parents were told she had months to live, when Shira was first diagnosed four years ago. But the young girl continues to defy the odds.
Her parents, Brad and Maxine, have become advocates for Shira and other SMA kids. Last week, they were told their application to get Shira a vaccine to fight out RSV (a virus that attacks the respiratory sytem) was denied. Shira has twice beeen hospitalized with RSV and both times nearly died.
Her parents believe the vaccine can keep Shira out of the intensive care unit this winter. The Fishers contacted A News and within 48 hours, BC Children's Hospital announced its vaccine protocol for the province would include children with SMA who are under 15 kilograms. Shira now qualifies and was given her first set of anti-RSV shots today.
The Fishers believe Shira's original rejection was over money - the vaccine costs about $8,000 and they worry about other families with special needs children won't fight the system to ensure quality care.
Monday, October 12, 2009
Wednesday, October 7, 2009
Shira Swings On Her Converted Tumbleform Chair
"A girl, my daughter. She is a being more rare, more beautiful, purer,
more perfect and more delicate than the wildest dream of a poet. I can
never believe her to be my own flesh and blood. Her beauty is a
well-spring of purest water-of-life, and t...o look upon her is to drink
and drink and drink again.......
She is rare, a perfect creation, a work of purest art. A delicate
flower that bloomed in the liquid light of the moon. A nature not of
this world, a personality like that of some biblical maiden, gracious
and queenly. I find it difficult to believe her my own........"
-Excerpt from the book The Invisible Man by Ralph Ellison but I changed it to present tense!
Click link below to watch Shira swing!!
CLICK HERE
Friday, September 25, 2009
Letter Warns About Tricky Dosing With Liquid Tamiflu for Kids
Letter Warns About Tricky Dosing With Liquid Tamiflu for Kids
Published: Friday, September 25, 2009 | 6:45 AM ET
Canadian Press
(HealthDay News) - Doctors warn that parents across the country could give the wrong dose of Tamiflu to their children as treatment for the H1N1 swine flu because the dosing instructions don't always coincide with the measurement markings on the syringe that comes with the liquid medication.
The warning letter, penned by scientists from Northwestern University Feinberg School of Medicine in Chicago, Emory University in Atlanta and Weill Cornell School of Medicine in New York City and published online Wednesday in the New England Journal of Medicine, also urges doctors and pharmacists to be on the lookout for this potential dosing mismatch and to help parents figure out exactly how much Tamiflu to give their child.
The authors cite a case that they say is probably happening all over the United States: The parents of a 6-year-old girl diagnosed with the H1N1 virus received a prescription for Tamiflu Oral Suspension that told them to give her three-fourths of a teaspoon of the medicine two times a day. However, the dosing syringe inside the box was marked in milligrams. The confused parents, both of whom are health professionals, had to figure out how to convert the measurement, something most parents would find too daunting to do.
"It's an egregious error that there is a conflict in the prescription labeling instructions and the dosage device that comes in the exact same box. It's incredibly confusing to parents," letter co-author Michael Wolf, an associate professor of medicine and learning sciences at Northwestern University Feinberg School of Medicine, said in a news release from the university. "Tamiflu is one of the main courses of treatment right now for H1N1, and it is being widely used among children, even infants."
The letter's authors recommend that all pharmacies and physicians be instructed to ensure that the prescription label instructions for use are in the same dosing units as those on the measurement device.
"Parents being prescribed Tamiflu for their children need to make sure they understand exactly how to take it at the time they pick it up at the pharmacy," lead letter author Dr. Ruth Parker, a professor of medicine at Emory, said in the release.
Wolf warned that an overdose could be toxic, and an underdose could be ineffective.
And even more complex calculations might be necessary now that the U.S. Food and Drug Administration has approved Tamiflu for off-label use among children under the age of 1, because the syringe doesn't include small enough measuring increments for these youngest patients.
"We need to have a better system for ensuring there are standardized directions for administering drugs to children," letter co-author Dr. Alastair Wood, a professor of medicine and pharmacology at the Weill Cornell School of Medicine in New York City, said in the news release. "We need to move to a system where all doses are given in the same units, preferably milliliters."
Meanwhile, a report released Thursday supports recent U.S. Centers for Disease Control and Prevention recommendations not to use negative rapid test results for management of patients that may be infected with the pandemic swine flu virus.
Researchers in Connecticut assessed the performance of the rapid influenza diagnostic test (RIDT) used during outbreaks of pandemic influenza A (H1N1) at two schools in Greenwich in May 2009. Of the 63 people tested at Greenwich Hospital, infection was confirmed in 49 patients.
The results of the RIDT were compared with the reverse transcription-polymerase chain reaction assay. A low sensitivity of 47 per cent was found for the rapid test. This poor performance couldn't be explained by the clinical features of the patients or by the timing of the specimen collection, said Dr. James R. Sabetta, of the Greenwich Department of Health and the Connecticut Department of Public Health, and colleagues.
While a positive rapid test for influenza is helpful, a negative test doesn't rule out pandemic swine flu, the researchers said.
The report appears in the Sept. 25 issue of the Morbidity and Mortality Weekly Report, published by the CDC.
More information
The CDC has more about http://www.cdc.gov/h1n1flu/ H1N1 flu.
SOURCES: U.S. Centers for Disease Control and Prevention, news release, Sept. 24, 2009; Northwestern University, news release, Sept. 23, 2009
Copyright 2009 ScoutNews, LLC. All rights reserved.
Published: Friday, September 25, 2009 | 6:45 AM ET
Canadian Press
(HealthDay News) - Doctors warn that parents across the country could give the wrong dose of Tamiflu to their children as treatment for the H1N1 swine flu because the dosing instructions don't always coincide with the measurement markings on the syringe that comes with the liquid medication.
The warning letter, penned by scientists from Northwestern University Feinberg School of Medicine in Chicago, Emory University in Atlanta and Weill Cornell School of Medicine in New York City and published online Wednesday in the New England Journal of Medicine, also urges doctors and pharmacists to be on the lookout for this potential dosing mismatch and to help parents figure out exactly how much Tamiflu to give their child.
The authors cite a case that they say is probably happening all over the United States: The parents of a 6-year-old girl diagnosed with the H1N1 virus received a prescription for Tamiflu Oral Suspension that told them to give her three-fourths of a teaspoon of the medicine two times a day. However, the dosing syringe inside the box was marked in milligrams. The confused parents, both of whom are health professionals, had to figure out how to convert the measurement, something most parents would find too daunting to do.
"It's an egregious error that there is a conflict in the prescription labeling instructions and the dosage device that comes in the exact same box. It's incredibly confusing to parents," letter co-author Michael Wolf, an associate professor of medicine and learning sciences at Northwestern University Feinberg School of Medicine, said in a news release from the university. "Tamiflu is one of the main courses of treatment right now for H1N1, and it is being widely used among children, even infants."
The letter's authors recommend that all pharmacies and physicians be instructed to ensure that the prescription label instructions for use are in the same dosing units as those on the measurement device.
"Parents being prescribed Tamiflu for their children need to make sure they understand exactly how to take it at the time they pick it up at the pharmacy," lead letter author Dr. Ruth Parker, a professor of medicine at Emory, said in the release.
Wolf warned that an overdose could be toxic, and an underdose could be ineffective.
And even more complex calculations might be necessary now that the U.S. Food and Drug Administration has approved Tamiflu for off-label use among children under the age of 1, because the syringe doesn't include small enough measuring increments for these youngest patients.
"We need to have a better system for ensuring there are standardized directions for administering drugs to children," letter co-author Dr. Alastair Wood, a professor of medicine and pharmacology at the Weill Cornell School of Medicine in New York City, said in the news release. "We need to move to a system where all doses are given in the same units, preferably milliliters."
Meanwhile, a report released Thursday supports recent U.S. Centers for Disease Control and Prevention recommendations not to use negative rapid test results for management of patients that may be infected with the pandemic swine flu virus.
Researchers in Connecticut assessed the performance of the rapid influenza diagnostic test (RIDT) used during outbreaks of pandemic influenza A (H1N1) at two schools in Greenwich in May 2009. Of the 63 people tested at Greenwich Hospital, infection was confirmed in 49 patients.
The results of the RIDT were compared with the reverse transcription-polymerase chain reaction assay. A low sensitivity of 47 per cent was found for the rapid test. This poor performance couldn't be explained by the clinical features of the patients or by the timing of the specimen collection, said Dr. James R. Sabetta, of the Greenwich Department of Health and the Connecticut Department of Public Health, and colleagues.
While a positive rapid test for influenza is helpful, a negative test doesn't rule out pandemic swine flu, the researchers said.
The report appears in the Sept. 25 issue of the Morbidity and Mortality Weekly Report, published by the CDC.
More information
The CDC has more about http://www.cdc.gov/h1n1flu/ H1N1 flu.
SOURCES: U.S. Centers for Disease Control and Prevention, news release, Sept. 24, 2009; Northwestern University, news release, Sept. 23, 2009
Copyright 2009 ScoutNews, LLC. All rights reserved.
Wednesday, September 23, 2009
Seasonal flu shot may increase H1N1 risk: early data
Seasonal flu shot may increase H1N1 risk: early data
Last Updated: Wednesday, September 23, 2009 | 4:01 PM ET Comments0Recommend1
CBC News
Preliminary research suggests the seasonal flu shot may put people at greater risk for getting swine flu, CBC News has learned.
"This is some evidence that has been floated; it hasn't been validated yet, it's very preliminary," cautioned Dr. Don Low, microbiologist in chief at Mount Sinai Hospital in Toronto.
"This is obviously important data to help guide policy decision. How can we best protect people against influenza?"
It's important to validate the information to make sure it's not just a fluke, and that the observation is confirmed elsewhere such as in the Southern Hemisphere, which just completed its seasonal flu season, Low added.
The four Canadian studies involved about 2,000 Canadians in Ontario, Quebec, British Columbia and Alberta, sources told CBC News. Researchers found people who had received the seasonal flu vaccine in the past were more likely to get sick with the H1N1 virus.
Researchers know that theoretically when people are exposed to bacteria or a virus, it can stimulate the immune system to create antibodies that facilitate the entry of another strain of the virus. Dengue fever is one example, Low said.
No seasonal flu shot?
The latest finding raises questions about the order in which to get flu shots.
Across Canada, public health authorities are fiercely debating the idea of shortening, delaying or scrapping their seasonal flu vaccination campaign in favour of mass inoculation against H1N1.
The main reason is because the H1N1 may be dominant strain of influenza circulating when the fall flu season hits, meaning it could be a waste of time and resources to mount a seasonal flu vaccine campaign.
Health authorities in Quebec say they might scrap or delay seasonal flu shots and carry out mass vaccinations against just the H1N1 swine flu virus instead. In the meantime, the province has paused the launch of its seasonal flu shots.
"For the moment, it's on hold," Karine White, a media relations liaison with Quebec's Ministry of Health and Social Services, told The Canadian Press.
"You can imagine the people over the age 65 who are relatively protected against H1N1, it may make perfect sense for them to get the seasonal vaccine. People who are younger than that, if we don't see a lot of seasonal flu, probably the pandemic vaccine's the way to go. But we're going to make that crystal clear to people," said Dr. Michael Gardam, director of infectious diseases prevention and control at the Ontario Agency for Health Protection and Promotion.
Seasonal flu could appear after Christmas, said Dr. David Scheifele, director of the vaccine evaluation centre at B.C. Children's Hospital in Vancouver.
Last Updated: Wednesday, September 23, 2009 | 4:01 PM ET Comments0Recommend1
CBC News
Preliminary research suggests the seasonal flu shot may put people at greater risk for getting swine flu, CBC News has learned.
"This is some evidence that has been floated; it hasn't been validated yet, it's very preliminary," cautioned Dr. Don Low, microbiologist in chief at Mount Sinai Hospital in Toronto.
"This is obviously important data to help guide policy decision. How can we best protect people against influenza?"
It's important to validate the information to make sure it's not just a fluke, and that the observation is confirmed elsewhere such as in the Southern Hemisphere, which just completed its seasonal flu season, Low added.
The four Canadian studies involved about 2,000 Canadians in Ontario, Quebec, British Columbia and Alberta, sources told CBC News. Researchers found people who had received the seasonal flu vaccine in the past were more likely to get sick with the H1N1 virus.
Researchers know that theoretically when people are exposed to bacteria or a virus, it can stimulate the immune system to create antibodies that facilitate the entry of another strain of the virus. Dengue fever is one example, Low said.
No seasonal flu shot?
The latest finding raises questions about the order in which to get flu shots.
Across Canada, public health authorities are fiercely debating the idea of shortening, delaying or scrapping their seasonal flu vaccination campaign in favour of mass inoculation against H1N1.
The main reason is because the H1N1 may be dominant strain of influenza circulating when the fall flu season hits, meaning it could be a waste of time and resources to mount a seasonal flu vaccine campaign.
Health authorities in Quebec say they might scrap or delay seasonal flu shots and carry out mass vaccinations against just the H1N1 swine flu virus instead. In the meantime, the province has paused the launch of its seasonal flu shots.
"For the moment, it's on hold," Karine White, a media relations liaison with Quebec's Ministry of Health and Social Services, told The Canadian Press.
"You can imagine the people over the age 65 who are relatively protected against H1N1, it may make perfect sense for them to get the seasonal vaccine. People who are younger than that, if we don't see a lot of seasonal flu, probably the pandemic vaccine's the way to go. But we're going to make that crystal clear to people," said Dr. Michael Gardam, director of infectious diseases prevention and control at the Ontario Agency for Health Protection and Promotion.
Seasonal flu could appear after Christmas, said Dr. David Scheifele, director of the vaccine evaluation centre at B.C. Children's Hospital in Vancouver.
Subscribe to:
Posts (Atom)