August 2007 Archives
This from Conners parents:
UPDATE: WE JUST RECEIVED WORD THAT CONNER IS 100 PERCENT ENGRAFTED!!!! ALL OF THE CELLS WORKING SO HARD ARE DORY'S AND IF HE STAYS HEALTHY AND WITH A LITTLE GOOD LUCK HIS TRANSPLANT WILL BE A SUCCESS! CONNER IS OFFICIALLY CURED OF HIS NEMO DEFICIENCY!
I received this information today.
APA stands for American Psychological Association and they just had a convention in San Francisco where a researcher, Dr. Ruthruff presented the following:
Ruthruff L, et al "The Effects of Bone Marrow Transplantation on Infant Psychosocial Development" American Psychological Association Convention Program 2007; Session 2300, p 191.
This study was published as a poster at a conference. These data and conclusions should be considered to be preliminary as they have not yet been reviewed and published in a peer-reviewed publication.
...
The long isolation inherent in the procedure is the culprit, said Linda Ruthruff, Ph.D., a post-doctoral fellow in infant development at San Francisco General Hospital.
"Infants younger than two at the time of bone marrow transplantation are at risk of declines in IQ and for slowing the rate of acquisition of developmental skills," she and colleagues reported at the American Psychological Association meeting here.
However, Dr. Ruthruff said her study of 54 infants who underwent the procedure for cancer or immunological diseases indicated that factors related to lessening of impairment is related to a younger age and a shorter period of isolation.
"Our study specifically examined how bone-marrow transplantation procedures impact the communication and socialization skills of these children," she said at her poster presentation.
"While survival of these children is improving," Dr. Ruthruff said, "we need to know if therapeutic interventions can improve functioning if outcomes are poor. There is very little information in the bone-marrow transplantation literature regarding infant outcome. We know family life is disrupted."
AT - Disrupted indeed... Medicine needs a change of focus from the use of chemicals to the use of new cells. I can say that during and after transplant we felt like hermits with a webpage.
Dr. Ruthruff and researchers at the Pacific Graduate School of Psychology and the University of California at San Francisco said that their exploration of the psychosocial development of these children revealed significant deficits in IQ development, declines in behavior scores, and impaired communication skills.
AT - I can say that Andy is shy and he feels overwhelmed when he's in the spotlight.
"The process of bone marrow transplantation usually involves a long period of compromised immunity and potential neurotoxic procedures," Dr. Ruthruff noted. "The infant is kept in medical isolation at the hospital for periods ranging from a few days to six or more months. When the infant returns home, isolation and social restrictions continue for a period lasting from a few months to a year. Sanitation and prevention of the introduction of germs into the home environment severely curtail the infant's and family's activities."
AT - I took betadine showers...
"Many infants are exposed to high-dose ablative chemotherapies and/or total body radiation to prepare their body for the new bone marrow. Some were previously exposed to multiple courses of chemotherapy. Some are given agents to prevent and/or treat graft-versus-host disease."
AT - Patients should receive their own new functioning cells.
The results of this study are not surprising," said Jacqueline Lefkowitz, LCSW, a master social work clinician at New York Presbyterian Hospital-Weill Cornell Medical College. "Events occurring in the earliest stage of life play a crucial role in the cognitive and emotional development of children."
AT - I wonder what effect will 700 + days in the hospital have in my 8 year old son.
Lefkowitz said that cancer and cancer treatments are often traumatic. "Traumatic experiences strongly influence psychosocial development," she added. "However, all experiences are mediated by the parents or the primary attachment figures."
She recommended further studies into "whether parents' coping styles influence the interactions with their child and whether, in turn, these interactions also play a significant role in the child's growth and development."
ATF - Someone should study blogging parents..
Link to APA Conference.
Link to conference report by Ed Susman here.
This from Rhys Dad,
"Unfortunately Rhys was admitted into hospital yesterday, it looks as if the TB Avium is rearing its ugly head, his body has done so well in keeping it at bay for so long."
Boys with some types of NEMO have a big risk for mycobacterium infections.
Rhys was supposed to go to Disney and istead ended un in the hospital....
More @ cure4rhys here.
MPs call for embryo change to allow 'saviour siblings'
By Colin Brown
Published: 01 August 2007
Restrictions on the use of embryo technology to produce "saviour siblings" with parts that can be used to treat brothers or sisters should be eased, a group of peers and MPs will say today.
They will call on the Government to widen its Human Tissue and Embryos Bill to allow "saviour siblings"to be created where there is a "serious" risk to the life of a brother or sister, rather than only in cases where a condition is "life-threatening". If adopted by the Government, it could lead to more embryos being produced to use for treatment of existing siblings, and it is certain to lead to a battle in Parliament. The joint committee of Lords and MPs said umbilical cord blood stem cells could be used under the draft bill to treat an existing child suffering from a life-threatening condition. The committee acknowledged that some people were fundamentally opposed to all embryo testing because of the ethical problems it raised, saying a child was a "gift" not a "source of biological material".
But the committee concluded: "We recognise this is a delicate area. However, given the Government's apparent acceptance of the principle of selecting for 'saviour siblings' we do not understand why the practice is limited to 'life-threatening' conditions capable of treatment using umbilical cord blood stem cells."
They recommended the draft bill should be amended to substitute "serious" for "life threatening" in the conditions required to allow it.
Article via The Independent here.
Great invention for Molysomophobics (like me after 700+ days in the hospital)..
Molysmophobia / Molysomophobia refers to an abnormal and persistent fear of dirt or contamination.
And not only for Molysomophobics, every plane should have a lot of this gadgets.
During plane travel you're breathing the exact same air as everyone else for several hours... Here's what you need:
Brush your teeth and then rinse with the same tool.
What a great invention!
Here's the inventor website.
This is the new look of my blog!
Includes some new cool options that I'm learning about..
And I've decided to bring back some entries that were "embargoed" during negotiations with one book publishing agent.
Andres
Dear Conner,
We're thinking about you constantly.
It seems that your cells lack the ability to produce a protein called "nuclear factor kappa B" and are not able to send defense signals to the cell nucleus. The cells from your donor will restore the function of your blood cells, they will come in a plastic bag in less than six days and with time they will allow you to live a normal life.
I'm sure that your family and all the people around you have learned a lot of things from you. You've helped many people identify the things that are important, to live well and laugh stronger you encourage them to make their best effort. Thanks to your donor we have learned the God's great effect over things and how important it is to help one another. We believe that everything is possible if desired with such an intensity that probability becomes a possitive factual relationship among variables. In your case, medical science can also make success possible.
We're praying so that the chemo does solely and exclusively what it is intended to do. We hope that the new cells find their way to your bone marrow rapidly and we're sure that they will like their new home.
Stay strong!
Fortune favors the brave.
Andy, Sofia, Paulina & Andres Treviño
Children's Hospital Boston researcher George Daley, MD, PhD, sheds new light on the now discredited Korean embryonic stem cell lines. In this clip, Daley discusses the three ways to make embryonic stem cells and how the Korean stem cells were actually created through parthenogenesis, a process that creates an embryo from an unfertilized egg.
Watch the video here.
The Time is Now! - Contact Your Senators Take Action!
Encourage Your Senators to Include a Medicare IVIG Provision in Medicare Legislation This Year
It is critical that you immediately contact your Senators and ask them to fix the IVIG problem this year and to include a fix in any Medicare legislation that they act on during the remainder of 2007.
Last week, both the U.S. House of Representatives and the Senate passed major healthcare bills. The major focus of the bills is renewal of the authority and expansion of funding for a program providing health insurance coverage to children, the Children's Health Insurance Program (CHIP). The House bill goes beyond CHIP program revisions and includes many Medicare provisions, but not one on IVIG. The Senate bill does not include any Medicare provisions, rather, the provisions are limited to the CHIP program. While neither the House nor Senate bill currently include provisions on IVIG, they can lead to a path for dealing with IVIG problems and for addressing the access problems patients with primary immunodeficiency diseases have known since 2005.
Senate consideration of the Children's Health Insurance Program (CHIP) remained limited to that program only; it did not broaden the scope to include Medicare provisions. However, it is believed that the Senate will be working on Medicare provisions during August and early September. These provisions might be included in discussions the Senate has with the House to work out differences between their two bills as they reach agreement on a bill that both bodies can pass.
Below on our Action Alert is a letter for you to send to your Senators to ask them to find a solution to IVIG problems this year. Request that they go to leaders of the Senate Finance Committee (which has jurisdiction over Medicare and its provisions dealing with payment for IVIG) and ask that the IVIG problem be included in the Senate's Medicare package of amendments and in any agreement that emerges from discussions with the House.
Even if you are not on Medicare, an increasing number of private pay insurers are starting to follow Medicare's lead in how reimbursement is determined. Medicare's actions affect you! It is crucial that they hear from you, their constituents, that this legislation helps patients with PIDD.
Story via Daily Telegraph here.
$500K for stem cell breakthrough
SYDNEY could become the first city in the world to produce stem cells from cloned human embryos with a $500,000 grant being offered by Premier Morris Iemma to the first scientist to do it.
With laws lifted on the previously illegal practice, the State Government is now looking to actively fund research to make NSW the world centre of stem cell and cloning technology.
It is the next step along the road to a new medical industry in NSW producing potentially life-saving stem cells.
The controversial method of extracting stem cells has been banned in a host of countries - following moral pressure from conservative lobby groups - but was recently legalised in NSW via a conscience vote in Parliament.
Yesterday Mr Iemma said that with the legislation being passed allowing therapeutic cloning, funding would be allocated from a special $11.5 million fund to develop it.
"Put simply, this funding will enable NSW scientists to undertake work we hope will result in the creation of the country's first stem-cell lines derived from somatic-cell nuclear transfer embryos. In fact, if successful it could well be a world first," he said.
Prince of Wales Hospital transplant unit head Professor Bernie Tuch said the hospital was developing stem-cell lines to produce insulin-producing cells to treat diabetes.
"We will be putting our hand up," Professor Tuch said. "People in NSW can now apply for funding to move from the concept of therapeutic cloning, to be able to attempt to move it forward. These are small steps, slow steps but in a positive direction."
The National Health and Medical Research Council paved the way six weeks ago for people to apply for licences for such technology.
At present the only stem cells in use or experimentation around the world are adult stem cells or those derived from discarded IVF embryos.
In NSW, scientists will now be able to clone embryos, using a patient's own cells, to develop patient-specific stem-cell lines which would avoid rejection complications when transplanted.
The contentious part of the technology, the cloning, involves taking genetic material from a patient and fusing it into the empty nucleus of an egg cell - effectively creating an embryo in the laboratory. Stem cells taken from the embryo are foundation human cells, which have the ability to grow into any cell in the body such as nerve, heart or blood cells or cells that can produce enzymes or hormones such as insulin.
Experts hope that will lead to cures for a host of diseases and conditions such as diabetes, Parkinson's disease, heart disease and spinal cord injuries.
However, cloning embryos to produce the cells has outraged moral and religious groups. Catholic Archbishop George Pell tried to pressure NSW MPs to vote against the original Bill.
Article via Journal & Courier here.
Conner's website here.
Road to curing Conner leads to upcoming transplant By DOROTHY SCHNEIDERIt was just a common cold that landed Conner Smith in the hospital about 3 1/2 years ago.
But his body couldn't fight off the germs. Doctors soon discovered the Lafayette boy had an immune deficiency, but it wasn't until last fall that they diagnosed Conner with a rare disorder called NEMO -- Nuclear Factor Kappa B Essential Modifier Deficiency -- for which the only cure is a bone marrow transplant.
Conner, now 13, was admitted Saturday to Cincinnati Children's Hospital and is scheduled to undergo the transplant next week.
The procedure is risky, but it's Conner's only chance to return to life as a normal kid. Kristen Smith, Conner's mother, said the gift the anonymous bone marrow donor is giving their family is priceless.
"How do you say thank you for something like that?" she said.
The road to the transplant has been a long one for Conner; his parents, Kristen and Chris; his fraternal triplet brothers, Evan and Hayden; and his 11-year-old sister, Kelsey.
Because Conner's condition makes him susceptible to developing a life-threatening infection at any time, he's spent the past few years getting intravenous doses of antibodies every three weeks.
The treatments were painful, didn't always go smoothly and left Conner "grumpy and tired," according to Evan.
When the family decided to pursue a bone marrow transplant as a potential cure, the donor search had to start outside their family. Genetic testing revealed that both Kristen and Chris were carriers of immune deficiency disorders, which now their children are carrying.
A local bone marrow registry drive and a national search turned up several donors, each matching seven of the eight criteria for Conner's marrow.
"All of us feel blessed at the way that everyone has reached out to our family," Kristen said of the community support system that's sprouted around them during the past several years.
"It has definitely made our family closer. I think, gosh, if we can get through this we can get through anything."
With the transplant finally scheduled, the Smiths had to prepare for the long haul. Conner will have to stay close to the Cincinnati hospital for the first 100 days after the procedure, and his mother and father will be the only visitors allowed to see him because of the risk of infection in the early stages.
Conner said he knows the transplant "won't be the easiest thing in the world" and admits he's sometimes nervous. Conner planned to have his siblings shave his head before going into the hospital, because the chemotherapy he'll need for the transplant will make him lose his hair anyway.
Chris said he's planning to take on the daunting transplant procedure with a day-by-day attitude.
"I view it pretty much like when we brought newborn triplets home. I'm going to get through tomorrow and then get through the next day," he said.
"Hopefully, like raising triplets, the days are long but the months are short."
