March 2008 Archives
This from Giovanni's Dad blog:
Giovanni is still on the ventilator, and the RSV has spread into his right lung taking its course. Giovanni's heart is spiking to 174, and the team feels his blood cells are dry, so they are transfusing him. They are giving Giovanni a holiday and leaving him on the ventilator another day to treat the RSV. His left lung has yet completely expand from the collapse, but he's moving air well and his lungs are getting suctioned daily.His paralytic drugs will be stopped today to test how Giovanni breaths on his own. Please donate blood and become a bone marrow donor. Finally, I continue to rest on Nietzsche for Giovanni: That which does not kill us only makes us stronger.
Found this note inside his school backpack.
Andy 3.20.2008
I went to the hospital. The doctor took a xray of my leg. I had floed in my leg. The Doctor put a brace on my leg. When he put on the bace I was limping and it got better and beter.
Note from Mr. Dinmore, his teacher:
Andy's writing has grown in detail!
~Sir Winston Churchill
Pre order via Amazon:
It's currently happening in the US regarding stem cell research.
And may soon also happen in the UK.
From the BBC:
things that you didn't do than by the ones you did do.
So throw off the bowlines. Sail away from the safe harbor.
Catch the trade winds in your sails."
~Mark Twain
Ruarri Serpa
Issue date: 3/25/08
Boston-area medical experts called for more uniform federal stem cell research policies, and said having inconsistent policies leads to less collaboration among scientists and misconceptions that give the public a negative view of the field.
Harvard Medical Center pediatric instructor William Lensch, who is affiliated with the Stem Cell Institute, said public policy has had "chilling effects" on stem cell research, making it impractical for universities and research institutions to study it, during a panel discussion at the Boston Bar Association.
Media Credit: Sabina RoslyakovaStem cell researcher William Lensch and lawyer Patrick Taylor debate the ethical and legal issues limiting stem cell research.
"Policy has been tough on research," Lensch said. "We can't even determine how much damage has been done, because nothing has even happened yet."
"There tends to be duplicated effort between institutions," Lensch said. He said institutions tend to collaborate on research, and said if other states followed the example of California, a leader in stem cell funding and standards, they could better work together.
He addressed stem cell research opponents who say the work destroys life, but said most cell populations are created in vitro -- in a Petri dish -- and not taken from a fetus. "Inaccurate" ideas, like calling the process cloning, generates hysteria, Lensch said.
Children's Hospital Boston deputy general counsel Patrick Taylor said self-regulation like International Society for Stem Cell Research's international ethics standards, should be used as a guideline for policy-making.
"A human research regulation structure just doesn't exist yet," he said. "It is being hand-built."
In 2001, President George W. Bush signed an executive order restricting federal funds to research on existing embryonic stem cells and making it illegal to use federal funds to destroy an embryo for stem cell research.
Taylor said strict limits on federal funding force states to create their own policies based on individual ethical decisions and available funds. Institutions cannot accept research done out-of-state if states' policies do not have similar research standards, he said.
Scientists' limited access to resources has led some institutions to consider commercial research, Taylor said. The problem with commercial research is that the data is not as widely shared because of commercial licenses, he said.
Taylor said the University of Massachusetts should get more analysis data from other research institutes. Last week the State Senate approved Gov. Deval Patrick's $1 billion Life Sciences Bill, approved by the House earlier this year.
Coner is 220 days post transplant. The following from Conner's Mom Blog:
We've learned that Conner's restrictions or precautions have essentially been lifted and as far as his immune system is concerned he has recovered from his transplant!
What an incredible coincidence that Conner's recovery has come to light during Holy week! His journey took him through the valley and he has experienced a rebirth of sorts. We know that we still have issues to manage and there could always be setbacks, but we are so grateful for how well he is doing.
YES!!!
COOL! Just like a lizard's tail...
It's true, this is the holy grail of medicine. And we got to see a glimpse of it with Andy & Sofia.
Medicine's Cutting Edge: Re-Growing Organs
(CBS) Imagine re-growing a severed fingertip, or creating an organ in the lab that can be transplanted into a patient without risk of rejection. It sounds like science fiction, but it's not. It's the burgeoning field of regenerative medicine, in which scientists are learning to harness the body's own power to regenerate itself, with astonishing results. Correspondent Wyatt Andrews brings you to the scientific frontier.
By Maggie Fox, Health and Science Editor
WASHINGTON, March 23 (Reuters) - Researchers who used cloned embryonic stem cells to treat Parkinson's disease in mice said on Sunday they worked better than other cells.
The researchers were trying to prove that it is possible to make embryonic stem cells using cloning technology and use them to provide a tailor-made treatment.
But they found that a mouse's own cloned stem cells were far less disruptive to its body than cloned cells taken from other mice.
"It demonstrated what we suspected all along -- that genetically matched tissue works better," said Viviane Tabar of Memorial Sloan-Kettering Institute in New York, who worked on the study.
"When you give the other type of tissue, non-autologous tissue, you get more inflammation than we anticipated. This is in a lab animal where we expect it to be tolerant. Normally when you do this in mice, you don't give matched cells," Tabar added in a telephone interview.
The mice given non-matched brain cells did more poorly than the mice given cells from their own clones, the researchers reported in the journal Nature Medicine.
Stem cells are the master cells of the body and embryonic stem cells are the ultimate master cells, giving rise to all the other cells and tissue. Cloning researchers hope one day to be able to take a little piece of skin and grow embryonic stem cells from it for personal, tailor-made medical treatments.
One disease always named that may benefit from this technology is Parkinson's. The incurable, fatal illness is caused by the destruction of specific brain cells.
THERAPEUTIC CLONING
It is sometimes treated with transplants of brain cells from cadavers or aborted fetuses. Stem cell researchers have argued that cloning technology might provide a better source of cells for treatment.
Tabar and his team first created a Parkinson's-like disease in mice using chemicals to destroy their brain cells.
They took ordinary cells from the tails of the mice, transferred the nuclei from them into hollowed-out mouse eggs cells, and made clones of the mice. This process is called somatic cell nuclear transfer, or "therapeutic cloning".
The cloned embryos were harvested for their stem cells after a few days. The researchers grew these in the lab and coaxed them into becoming the so-called dopaminergic brains cells that are lost in Parkinson's.
They put these into the brains of the injured mice. These mice got better, Tabar said.
No one has done this before. "It's incredibly hard and it involves a series of inefficient steps," Tabar said.
Several researchers have made cells that look and act like embryonic stem cells by reprogramming their genes. Tabar said her team would try using these so-called induced pluripotent stem cells in the same way.
Some people oppose using cloning technology to make human embryonic stem cells, or to creating human embryos for this purpose. It is also difficult to obtain human egg cells.
Scientists hope the induced pluripotent stem cells might provide a short cut that no one would object to.
"This is an exciting step down the pathway of creating a self-specific stem cell and getting away from the ethical demands of traditional embryonic stem cells," said Richard Boyd, Deputy Director of the Monash Immunology and Stem Cell Laboratories in Victoria, Australia.
(Edited by Alan Elsner)
Link
Strange.. Tough luck...
I wonder if they are also suing their parents for having them?
And their grandparents for giving birth to their parents who gave birth to them?
SYDNEY (AFP) -- An Australian couple who used IVF to conceive a daughter to avoid passing on an incurable disease which only affects males are suing their doctors after giving birth to a boy, a report said Sunday.
The couple opted to use in-vitro fertilisation (IVF) to get pregnant so the woman could be implanted with only female embryos to avoid having a boy afflicted by the genetic and life-threatening illness haemophilia.
But in June 2005 they were delivered a son, Jess, who was soon afterwards found to have a severe form of haemophilia, a disease in which the blood does not clot properly and puts sufferers at risk of bleeding to death.
The Sunday Telegraph newspaper said the couple, which it did not name, have launched a Supreme Court action against their doctors and IVF clinics.
The couple, who say they were never informed they were due to have a boy, say they would have considered a termination if they had known, the paper said.
"We love our little boy, but we are very sorry he has to go through so much in his life," they told the paper.
"We tried everything to avoid this situation, and now our boy has to go through all the pain and treatment in order to survive.
"We now face the fact that Jess will require treatment for the rest of his life."
The couple are claiming damages for shock and nervous anxiety caused by the unexpected arrival of a boy and also want compensation for medical expenses as well as loss of income related to caring for their son.
From the UK Daily Mail,
Sheepdogs are trained to obey their master's every word. So when farmer David Kennard decided one of those words would be "Spring", his dogs did not hesitate.
Andy wrote this song to Sofia today,
"Right Sister nit, I love y but some tims we fiht but when you cry I feel bad. And when you are happy I like it too.
Dedacaded to Sofia _Song"
I remember watching this a long time ago.
Maura & Anne Marie are nurses at Six West, the stem cell transplant unit at Children's Hospital Boston. They visited Andy's school last Tuesday March 11 to talk to his classmates about his transplant.
It was a great presentation.
Thank you Maura & Anne Marie!
Andy feels more confident.
Andy's teacher reminded me that I'm not allowed to post pictures or videos...
Here is the script:
Andy Trevino
BTS powerpoint presentation script
Introduction
Hi I'm Maura, and this is Anne Marie. We are nurses at Children's Hospital in
So we have a little slide show. If you have a question at any time during our talk please raise your hand and we will try to answer your questions. We hope that you will listen, and participate, and even learn a little bit.
So let's get started...
~ Albert Einstein
Juan Pa = Cousin
A person's a person, no matter how small!
And you very small persons will not have to die
If you make yourselves heard! So come on, now, and TRY!
~ Dr. Seuss ~
This from Bloomberg:
Pope Benedict XVI has spoken out on social issues throughout his three-year papacy. He backs a current political initiative to outlaw abortions after 90 days and encouraged Catholics to abstain from a 2005 referendum on easing restrictive laws on fertility treatments, which failed to achieve the 50 percent participation level to make the vote to change the law binding.
The seven social sins are:
1. ``Bioethical' violations such as birth control
2. ``Morally dubious'' experiments such as stem cell research
3. Drug abuse
4. Polluting the environment
5. Contributing to widening divide between rich and poor
6. Excessive wealth
7. Creating poverty
Today I received this info. about CMV + pregnancy:
Most people who have it don't know it. But, if you are pregnant, what you don't know about cytomegalovirus can hurt your baby.
CMV is the most common virus transmitted to a pregnant woman's unborn child. Approximately 1 in 150 children is born with congenital CMV infection; approximately 1 in 750 children is born with, or develops, permanent disabilities due to CMV.
Disabilities that CMV can cause
The Centers for Disease Control estimates that about 8,000 children each year suffer permanent disabilities caused by CMV. Those disabilities include:
- Seizures
- Hearing loss
- Vision loss
- Mental disability
- Growth problems
- Bleeding disorders
- Lung problems
CMV not a problem for adults but dangerous to unborn babies and those with weakened immune systems
Between 50 percent and 80 percent of adults in the United States are infected with CMV by the age of 40. In most cases, the virus causes no symptoms, or very mild symptoms, and poses no threat. However, in children and adults with weakened immune systems, and in unborn babies, CMV can be dangerous -- and deadly.
How CMV is spread
CMV is found in body fluids, including urine, saliva, breast milk, blood, tears, semen, and vaginal fluids, and it can be spread by close personal contact. It can also be spread by small children infected with the virus.
Young children most likely to have CMV
According to the CDC, very young children are more likely to be infected with CMV than older children or adults; contact with the saliva or urine of a young child is a major cause of CMV infection among pregnant women. For example, coming into contact with the saliva (from kissing a child) or urine (after changing a diaper and then touching your eyes, or the inside of your nose or mouth) can cause a woman to contract CMV.
How pregnant women can protect themselves against CMV
For that reason, the CDC urges pregnant women who have young children, or who work with young children, to be especially careful.
Women who are pregnant or planning a pregnancy should follow these precautionary measures:
- Wash hands often with soap and water, especially after changing diapers. Wash well for 15 to 20 seconds.
- Do not kiss young children (under the age of 5 or 6) on the mouth or cheek.
- Do not share food, drinks or eating/drinking utensils with young children.
- If you work in a daycare setting, try to arrange to work with children older than 2½ .
There is an African proverb that says, "If you want to go quickly, go alone. If you want to go far, go together." We need to go far, quickly.
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Tips for savvy medical Web surfing
Empowered Patient, a regular feature from CNN Medical News correspondent Elizabeth Cohen, helps put you in the driver's seat when it comes to health care.
ATLANTA, Georgia (CNN) -- When Mary Ryan's 4-year-old nephew, Nick, landed in the hospital with a serious infection, her brother called her in a panic. Ryan isn't a doctor. She's not a nurse. She's a librarian.
Nick had cat scratch fever, and for weeks it was impervious to antibiotics. Desperate, the doctor in Nick's small town wanted to use a more powerful antibiotic that might save him -- but also might make Nick deaf.
Ryan's brother hoped she could find something -- anything -- that would save his son without disabling him. Ryan asked one of her colleagues, a research specialist at the Texas Medical Center Library in Houston, to search the medical literature. She came up with an article about an antibiotic that worked against cat scratch fever but wasn't toxic.
"We sent the doctor the whole article, and when he read it, he said, 'This is great. I hadn't thought of that,' " said Ryan, the president-elect of the Medical Library Association. Nick took the antibiotic and recovered without complications.
So if you're trying to find medical information for yourself or someone you love, and you're not lucky enough to have access to a professional research librarian, what do you do?
"The Empowered Patient" assumes you already know the basics of good Internet searching: .gov and .edu sites are to be trusted, as are sites for major health centers (think MayoClinic.com) and health organizations (such as the American Cancer Society's cancer.org).
"But there's so much more you can do. You can take this to a whole new level," says Jan Guthrie, director of The Health Resource, a for-pay medical research service.
So for the Internet searcher hungry for more, here are some tips for being a sophisticated surfer:
1. Use search engines that screen out the garbage for you
There's a lot of junk on the Internet. "It's the wild, wild West out there," says Alan Spielman, CEO of URAC, a company that certifies health Web sites. "You really have to be alert as you go through these sites."
To get rid of the junk, use a search engine that looks only at reputable sites that have been vetted by health professionals. Dirline, run by the National Library of Medicine, is one such engine, as are medlineplus.gov and Imedix.com. Healthfinder.gov searches for information on government health Web sites.
2. Find smart bloggers with your disease
Some bloggers do an excellent job of linking to resources specific to your disease. That goes for advocacy groups, too.
3. Invest 30 minutes in the pubmed.gov tutorial
Pubmed.gov searches the medical literature, but it isn't completely intuitive. It's worth the time to learn how to use it by doing the tutorial.
Nervous you won't understand the technical jargon in medical articles? Don't be, says Guthrie. She advises reading the very beginning of a study and the very end. "The conclusion will tell you whether the treatment they studied was effective, moderately effective, or not at all effective."
In addition, the Medical Library Association, has brochures called Deciphering Medspeak to help translate some of the more common medical jargon.
Tara Parker-Pope, a health columnist for the New York Times, found it useful to specifically search for review articles on pubmed when she was looking for treatments for her mother's esophageal cancer. Review articles give an overview of the latest research on a particular subject. "Review articles are an excellent way to get a lay of the land and to get the big picture on a topic," Parker-Pope says.
To find review articles on pubmed, go to the "limits" tab and then under "type of article", check "review."
4. Click on information about annual meetings
For example, let's say you just got a breast cancer diagnosis. You could go to asco.org, the site for the American Society of Clinical Oncology, and look at information on new breast cancer treatments discussed at last year's meeting.
This is the way to get cutting-edge information, Guthrie says. "Information on new treatments is presented at conferences six to 12 months before it's published in a medical journal."
Guthrie says she managed to find out about a new treatment for tendonitis this way. "It wasn't even in the medical journals yet. We found one doctor in New York who was doing it. If I had tendonitis, it might've been worth traveling to him," she says.
5. When in doubt about a Web site, click on "about us"
Sometimes it's clear who runs a Web site. Often it's not. Clicking on "about us" should explain it. Knowing who's behind the information you're reading (especially if they're trying to sell you something) helps you evaluate whether the information is biased. If you can't figure out who runs the site, don't use it.
And here perhaps are two of the most valuable pieces of advice: Use Internet resources in combination. "An advocacy group or a review article by itself is pretty useless," Parker-Pope says. "No one of these works by itself."
The second piece of advice: Don't expect the Internet to cure your disease. "I wanted to find the needle in the haystack to cure my mother," Parker-Pope says. "But information doesn't cure cancer. It just leads you to the best doctor and the best options."
Parker-Pope never found the needle in the haystack. Her mother, Karen Parker, died nine months after her diagnosis. But because of what they found out on the Internet, Parker-Pope and her family had confidence she received the best possible care. "And feeling confident in your care is no small thing," she says.
Article via CNN here.
~Albert Einstein
Harvard Medical Center pediatric instructor William Lensch, who is affiliated with the Stem Cell Institute, said public policy has had "chilling effects" on stem cell research, making it impractical for universities and research institutions to study it, during a panel discussion at the Boston Bar Association. 
