September 2004 Archives
1) Boston Public Health Commission: A lady from the Boston Public Health Commission called regarding the cryptosporidium positive culture. She explained to me that by law hospitals in Massachusetts have to report positive cryptosporidium cases and it’s her job to investigate about those cases to prevent other infections. She asked all kinds of questions, I would say she asked more than 50 questions. Se wanted to know where Andy ate in the last 7 days prior to hospitalization, where he went, our family history and others... I told her a brief explanation about Andy's health. I explained to her that Infectious Disease doctors at Children's don't think he has a positive infection of cryptosporidium, just a positive culture...
2) Viacord: A telemarketer from Viacord called today telling me that Viacord is pleased to announce new scientific findings regarding umbilical cord stem cells. That between other things Viacord found that umbilical cord stem cells "can grow into heart cells". She moved on to ask me if I knew anyone who was pregnant, offering a referral prize of $100. When she stopped talking I told her that we're just about to use the cells that Viacord stored for us. She had no script to go on. She just said "Oh, OK goodbye". You can find my blogs about Viacord here.
3) The office of the Mexican President. A man called today and Paulina answered, he was looking for me from the Office of the Mexican President. The number that rang was my Vonage number (maybe they dialed the Mexico City local number), on Andy's hospital room. At the time of the call I was taking care of Sofia in the apartment. The man asked Paulina for a postal address where Vicente Fox, President of Mexico could send a response to my email.
Families using sanitizing gels suffered 60% fewer stomach illnesses from germs that spread from ill family members compared with homes where hand sanitizers were not used.
The findings will be presented at this week's Infectious Diseases Society of America annual meeting.
"This is the first randomized trial to show that hand sanitizers reduce the spread of germs in the home," says lead researcher Thomas J. Sandora, MD, MPH, an infectious disease specialist at Children's Hospital Boston and an instructor of pediatrics at Harvard Medical School, in a news release.
More about the study via WebMD Health here.
Buy Purell and help Andy:
Buy some at Amazon and a portion of your purchase will benefit Andy here..
Click here to buy PURELL and Help Andy!
See hoy Purell works here.
El día de ayer miercoles el Tio Victor (mi hermano) habló acerca de Andy en el radio en México!
Victor habla todos los miércoles en el programa Entorno al Dinero que conduce el periodista Eduardo Torreblanca Jaques. Este programa se transmite de lunes a viernes de 8:00 pm a 9:00 pm a través de la frecuencia 1290 de AM en la Ciudad de México.
La participación de Victor es regularmente, los miércoles, con un comentario de temas tecnológicos.
El título de su plática de ayer fué de blogs y mencionó la historia de Andy y el blog de Andy.. Está buenisima su explicación de blogs. Si no sabes lo que es un blog te recomiendo que leas al respecto en la página de Victor aqui. Ahí también puedes encontrar todos los temas de los que ha hablado.
La página de Victor: http://www.victortrevino.com.mx
Gracias Victor!
Melissa Mancuso
Denise Braddock
Kelli Cole
When President Bush underwent a colonoscopy in 2002, he temporarily transferred power to Dick Cheney.
Andy has transferred power more than 13 times..
Article about White House doctors via CNN here.
ATF
Erin Burke
Nancy Chisholm
Kendal Temple
Plan for the night = Full feed of Pediatric E028.
Kelli Cole
Amazed Andy with her sounds, dolphin, dog and "others"..
A Picture via Picture of the Day here.
Ian Thornley J., M.B.B.S.
An Australian couple who created medical history and sparked a storm of controversy about their decision to have a "designer" baby to save their seriously ill son have spoken out about their choice in a new film.
The Tasmanian couple, known only as Stephen and Leanne, welcomed their life-saving baby boy, CJ, last month.
CJ was conceived using a contentious technique called PGD (Preimplantation Genetic Diagnosis) in which embryos are screened for genetic disorders before being implanted in the mother's uterus.
While debate rages about the ethics of the technique, for Stephen and Leanne it provided the only lifeline for their four-year-old son BJ, who has a rare immune deficiency known as hyper IgM syndrome.
More via The Age here.
Andy likes his Pediatric EO28 formula.
Pediatric EO28 is an elemental medical food formulated to provide complete or supplemental nutritional support for children with severe impairment of the gastrointestinal tract. Pediatric EO28 contains synthetic amino acids making it suitable for patients who require a predigested diet. Pediatric EO28 contains no whole protein or peptides making it ideal for the dietary management of protein hypersensitivity and allergy.
I guess how many of this juice boxes Andy has taken since he started around 3 years ago. He was drinking 4 juice boxes a day and he started taking this type of formula around 1642 days ago. That's 6568 juice boxes. Each juice box contains 237 ml, thats 1,556,616 liters of Pediatric EO28.
Product information in PDF format here.
Total parenteral nutrition (TPN), also called hyperalimentation, is the practice of feeding a person without using the gut. It is normally used during surgical recoveries. It has been used for patients in coma, although enteric (tube) feeding is usually adequate, and less prone to complications. Chronic TPN is occasionally used treat people suffering the extended consequences of an accident or surgery.
More via Wikipedia here.
Safer route to gene therapy found
Scientists say they have found a safer way of controlling genes to treat disease.
Current methods of switching genes on and off usually involve complicated systems and have serious side effects like cancer.
Scientists at the Children's Hospital in Boston say their new system should help overcome some of these problems.
They told Nature it could be used to treat a broad range of diseases and conditions in the future.
More via BBC here.
Muchas gracias por las muestras de apoyo y las oraciones que estan sirviendo bastante.
Gracias a Antonio, Mariana, Antonio y Sofia por el magnifico disco de Johann Sebastian Bach que llegó hoy en la mañana a la puerta del cuarto de Andy. En estos momentos lo estamos escuchando.
ATF
"The anti nausea medication may cause him to be loopy."
Loopy = Balmy, barmy, bats, batty, bonkers, buggy, cracked, crackers, daft, dotty, fruity, haywire, kooky, kookie, loco, loony, nuts, nutty, round the bend, around the bend, wacky, whacky -- (informal or slang terms for mentally irregular)
Polymerase Chain Reaction, or PCR, is a process which permits scientists to make unlimited copies of genes. This is done with a single molecule of DNA. One hundred billion copies of the DNA can be generated in a few hours.
This technique is currently being used to investigate Andy's CMV because of a positive CMV antigen on his blood.
More definitions of PCR on the web via Google here.
More via Wikipedia here.
As Jordan puts it "Old enemies die hard".
CMV is a member of the herpesvirus group, which includes herpes simplex virus types 1 and 2, varicella-zoster virus (which causes chickenpox and shingles), and Epstein-Barr virus (which causes infectious mononucleosis). These viruses share a characteristic ability to remain dormant within the body over a long period. Initial CMV infection, which may have few symptoms, is always followed by a prolonged, inapparent infection during which the virus resides in cells without causing detectable damage or clinical illness. Severe impairment of the body's immune system by medication or disease consistently reactivates the virus from the latent or dormant state.
Infectious CMV may be shed in the bodily fluids of any previously infected person, and thus may be found in urine, saliva, blood, tears, semen, and breast milk. The shedding of virus may take place intermittently, without any detectable signs, and without causing symptoms.
More Cytomegalovirus via Wikipedia here.
Leslie E. Lehmann, MD
Instructor in Pediatrics, Harvard Medical School
More here.
Estimado Don Vicente Fox
Presidente de México
Le escribo para agradecerle el autógrafo que usted y su esposa le mandaron a mi hijo de 5 años Andy. El día de hoy los recibimos, fue un autógrafo que nos hicieron favor de solicitarle la Abuela y Tía Abuela de Andy, ambas chiapanecas que asistieron hace algunos días a una comida en su casa.
Mi hijo Andy nació con una deficiencia inmunológica primaria en México. Ha demostrado que tiene una fuerza y paciencia increíbles que lo han mantenido vivo a pesar de un gran número de infecciones. Después de explorar todos los recursos médicos y de investigación a nuestro alcance en México, acabamos en Boston, MA., EUA. desde hace tres años y medio.
Y Gracias a Doctores Inmunólogos e Investigadores de Harvard Medical School que cooperaron con Doctores Investigadores en México, incluyendo el Dr. Roberto Kretschmer del Centro Médico Nacional Siglo XXI, encontramos que algunas células del sistema inmunológico de Andy no cumplen con las funciones necesarias de defensa en su cuerpo.
Logramos detectar la raíz genética del problema, descubrimos que Andy tiene una mutación en el gen NEMO (nuclear factor kappa B essential modulator), que hace que algunas proteínas de la célula que sirven como mensajeros al núcleo, no produzcan la señal adecuada para combatir virus y bacterias que ataquen su cuerpo. Al encontrar la raíz genética del problema se nos abrieron opciones de tratamiento.
Resulta ser que Andy requiere de un transplante de médula ósea para sustituir su sistema inmunológico y lograr llegar a ser adulto. Y después de una búsqueda en registros de donadores de médula ósea en todo el mundo, fue hasta hace exactamente 189 días que logramos encontrar a la donadora compatible para el transplante de Andy.
Sofía Treviño, mi hija que nació el pasado 14 de Marzo no trajo la torta bajo el brazo, trajo la salud para su hermano. Después de que nació Sofía guardamos las células madre del cordón umbilical y son las que vamos a utilizar para el transplante de Andy.
El próximo lunes 20 de Septiembre Andy entra al hospital de nuevo para recibir las células de cordón umbilical de Sofía
Lo invito a conocer la historia de mis hijos Andy y Sofía en la página en Internet que he fabricado para mantener a amigos y familiares informados en la siguiente dirección, http://www.andy.org.mx.
Hemos aprendido que las inmunodeficiencias primarias o deficiencias inmunológicas primarias pueden pasar desapercibidas porque no tienen síntomas específicos. Aparecen como infecciones "comunes y corrientes", generalmente en los oídos o en los pulmones, pueden causar problemas gastroenterológicos. Las familias y doctores a veces no saben que viene por un defecto en el sistema inmunológico.
Deficiencias inmunológicas primarias es distinto que SIDA y no se deben de confundir unas de otras. Aunque ambas involucran al sistema inmunológico. Deficiencias inmunológicas primarias es genético, o algo que traen las personas en su cuerpo por sus genes. Es como el color de los ojos: no te lo contagian y no lo puedes cambiar. El SIDA por el otro lado, es adquirido y es una enfermedad infecciosa, en lugar de un defecto genético.
Se han identificado más de cien variedades de deficiencias inmunológicas primarias. Uno de cada quinientos niños nace con algún tipo de deficiencia inmunológica. Se estima por ejemplo que en Estados Unidos hay un millón de afectados. Fuente: Jeffrey Modell Foundation
En toda la historia de México hay diagnosticados y reportados trescientos noventa y siete casos de inmunodeficiencia primaria. Fuente: Dr. Francisco Espinosa Rosales - Jefe de Inmunología del Instituto Nacional de Pediatría, México.
Si en México nacen al año dos millones de niños y estadísticamente uno de cada quinientos nace con algún tipo de deficiencia inmunológica, hay entonces por lo menos cuatro mil niños con inmunodeficiencia primaria en México al año.
La enfermedad de mi hijo ANDY nos ha mantenido en hospitales por más de 504 noches (Hospital Ángeles México DF., Hospital ABC México DF., Hospital Central Militar México DF., Children's Hospital Denver CO., Children's Hospital Boston MA).
Yo me imagino que una gran parte de los otros niños en México mueren con el pretexto de "tuvo mala suerte, le atacó una bacteria o un virus".
Se tiene que hacer algo al respecto, por lo menos empezar creando conciencia de este tipo de padecimiento.
Lo voy a mantener informado del tratamiento de Andy y muchas gracias de nuevo por su autógrafo y el de su esposa.
Atentamente,
Andrés L. Treviño
Contribución de Maguis Zardaín de Brunet y Guadalupe Zardaín de d'Argence, Tia Abuela y Abuela de Andy.
En la ANDYTARJETA!
Contribución de Maguis Z. de Brunet y Guadalupe Z. de d'Argence, Tia Abuela y Abuela de Andy.
PHYSICIANS
Attending Physician - a senior medical doctor who directs the patient's care.
Fellow - a medical doctor training in a specialty, e.g. cardiology.
Resident - a medical doctor training in pediatrics.
Psychiatrist of Psychologist - a doctor who works with parents and children to help them learn ways to manage feelings about being in the hospital.
NURSES
Nurse Practitioner - a nurse with special training in diagnosing, treating and caring for patients.
Staff Nurse - the nurse on duty who is responsible for your child's nursing care at all times.
Patient Care Coordinator - informs your insurance company of your child's progress during hospitalization and arranges for any home care services your child may need.
Courage is realizing that you're afraid and still act to solve the problem.
Viacord called Dr. Pai regarding the authorization of release of medical information.
Paulina and I decided to authorize the release of medical information ONLY for Viacor/Viacell internal use, not for presentations and publication concerning the history, treatment, examinations and diagnostic studies from Andy.
ATF
Politics & PGD.
Italian minister in troubleCalls for his resignation abound after stem cell transplant announcement.
Politicians and scientists in Italy are calling for the resignation of health minister Girolamo Sirchia this week, over a contentious law on assisted reproduction.
...
While reporting on the "historic outcome" at a press conference, Sirchia did not mention that the twin brothers were designer babies, born healthy thanks to preimplantation screening and assisted reproduction carried out at a fertility center in Istanbul, Turkey.
More via The Scientist here.
ATF
This will be a BIG bank...if they win the trial..
A local blood bank filed its second lawsuit against the Shanghai Public Health Bureau, after the latter banned its business of storing umbilical blood stem cells in January
"The company conducted blood collecting without any authorization and has broken the Blood Donation Law of the People's Republic of China and the Practices of Blood Centres," said the bureau's Liu Xuefeng.
Shanghai Zaishengyuan Life Co-operation Ltd, the city's first private umbilical blood bank lost the first trial in Shanghai Huangpu District People's Court in July.
But the company disagreed.
"Zaishangyuan isn't under the category of blood centres which are non-profit organizations. We run for a profit business," said Zhang Yu, lawyer for Zaishengyuan.
More via Chinadaily.com.cn here.
REPRODUCTIVE GENETICS INSTITUTE
I received a call today from Olga Dragunsky, who works at Reproductive Genetics Institute Chicago to remind us of the party dedicated to the babies born through IVF & PGD on Sunday September 19, 2004 in Chicago, Ill.
She also talked about helping other couples who might benefit from PGD by making our story public through TV in programs like Good Morning America and Today from NBC. My response was that we will be happy to do that and more once Andy's cured.
She will be in contact.
Wished us good luck.
Thanks!
ATF
Addition of Public Cord Units Grows Cord Blood Registry by 20 Percent
Now listed on the NMDP Registry are units from the Carolinas Cord Blood Bank at Duke University Medical Center, Durham, N.C.; the StemCyte Taiwan National Cord Blood Center; and the ZKRD German National Registry.
As a result, the NMDP has expanded access and increased the diversity of its public cord blood Registry to more than 36,000 units from 13 member U.S. cord blood banks and two cooperative affiliations to provide the single largest listing in the United States. These new units represent a diverse racial and ethnic mix that will increase the number of minority units, including a 37 percent increase in the number of Black and African American units.
More on this story via PR Newswire here.
Neuropsychological changes from pretransplant to one year in patients receiving myeloablative allogeneic hematopoietic cell transplant.
Karen L Syrjala et al.
Research indicates that myeloablative hematopoietic cell transplant (HCT) impairs neurocognitive function. However, prospective studies on long-term effects are lacking. This longitudinal study examined neurocognitive changes over the first year in 142 adult allogeneic HCT recipients who received neuropsychological testing pretransplant and again after 80 days and one year. Age, gender and education-adjusted population-based standardized scores were used for normative comparisons. Performance on all tests declined from pretransplant to 80 days (P < .05) and improved by one year (P < .05), returning to pretransplant levels on all tests except for grip strength and motor dexterity. Although verbal fluency and memory recovered by one year, both were below norms at all three testing times (P < .01). Logistic regressions indicated that patients without chemotherapy, other than hydroxyurea, previous to HCT and patients not receiving chronic GVHD medication at one year had lower risk of impaired function (P < .05). In conclusion, HCT was associated with significant generalized decline in neurocognitive performance at 80 days, with subsequent recovery to pretransplant levels by one year for most survivors, except on motor tasks. Results indicate that long-term cognitive decrements, as distinct from motor disabilities, infrequently derive directly from HCT.
More via Blood Journal here.
Cada año más de 30,000 niños y adultos en Estados Unidos obtienen un diagnóstico con enfermedades terminales, como el de Andy, a los que un transplante de células madre ofrece una cura.
Más de 70 enfermedades son tratables con un transplante de células madre.
En EUA hay alrededor de 170 transplantes al mes, 2,000 transplantes al año.
En EUA hay más de 5 millones de donadores registrados y más de 28 mil unidades de cordón umbilical (Julio 2003).
Solamente un 30% de pacientes encuentran un donador en su familia.
Alrededor de 25 mil voluntarios se registran en EUA como donadores al mes, alrededor de 300 mil al año.
En promedio 500 cordones umbilicales se añaden cada tres meses.
Hay más de 430 mil donadores registrados de origen latino.
Fuente: National Marrow Donor Program. Mas informacion aqui.
Every year, more than 30,000 children and adults in the United States are diagnosed with a terminal illness, like Andy’s, which may be cured by stem cell transplant.
More than 70 diseases can be treated by a stem cell transplant.
In USA, around 170 transplants are carried out each month; 2,000 a year.
There are more than 5 million registered donors in the USA and over one thousand umbilical cords (June 2003).
Only 30% of patients find a donor within their family.
Approximately 25 thousand volunteers are registered in USA as donors each month, around 300 thousand a year.
Every three month, an average 500 umbilical cords are added.
There are over 430 thousand registered donors that are Hispanic.
Source: National Marrow Donor Program.
For more information, click here.
Translation by Eugenia Gutierrez Ortiz Mena - Genesis Translations
Blood smear. In this test, a drop of blood is spread (smeared) on a slide and stained with a special dye. The slide is then examined under a microscope. The numbers, size, and shape of red blood cells, white blood cells, and platelets are recorded. Blood cells with unusual shapes or sizes can help diagnose many blood diseases, such as leukemia, malaria, or sickle cell anemia.
This is part of the CBC - Complete Blood Count Test.
Platelet (thrombocyte) count. Platelets (thrombocytes) are the smallest type of blood cell. They play a major role in blood clotting. When bleeding occurs, the platelets swell, clump together, and form a sticky plug that helps stop the bleeding. If there are too few platelets, uncontrolled bleeding may be a problem. If there are too many platelets, there is a risk of a blood clot forming in a blood vessel. Also, platelets may be involved in hardening of the arteries, or atherosclerosis.
This is part of the CBC - Complete Blood Count Test.
More definitions of Platelet on the web found here.
Red blood cell indices. There are three red blood cell indices: mean corpuscular volume (MCV), mean corpuscular hemoglobin (MCH), and mean corpuscular hemoglobin concentration (MCHC). They are measured by a machine and their values are determined from other measurements noted during a CBC. The MCV shows the size of the red blood cells. The MCH value is the amount of hemoglobin in an average red blood cell. The MCHC measures the concentration of hemoglobin in an average red blood cell. These numbers help in the diagnosis of different types of anemia.
Red cell distribution width (RDW). The RDW reports whether all the red cells are about the same width, size, and shape. This helps further classify the types of anemia.
This is part of the CBC - Complete Blood Count Test.
Hemoglobin (Hgb). Hemoglobin is the major substance in a red blood cells. It carries oxygen and gives the blood cell it's red color. The hemoglobin test measures the amount of hemoglobin in blood and is a good indication of the blood's ability to carry oxygen throughout the body.
This is part of the CBC - Complete Blood Count Test.
More definitions of Hemoglobin on the web found here.
Red blood cell (RBC) count. Red blood cells carry oxygen from the lungs to the rest of the body. They also help carry carbon dioxide back to the lungs so it can be exhaled. The red blood cell count shows the number of red blood cells in a sample of blood. If the RBC count is low, the body may not be getting the oxygen it needs. If the count is too high (a condition called polycythemia), there is a risk that the red blood cells will clump together and block tiny blood vessels (capillaries).
This is part of the CBC - Complete Blood Count Test.
Other definitions of RBC found here.
White blood cell types (WBC differential). There are five major kinds of white blood cells: neutrophils, lymphocytes, monocytes, eosinophils, and basophils. Immature neutrophils, called band neutrophils, are also included and counted as part of this test. Each type of cell plays a different role in protecting the body. The numbers of each one of these types of white blood cells give important information about the immune system. An increase or decrease in the numbers of the different types of white blood cells can help identify infection, an allergic or toxic reaction to certain medications or chemicals, and many conditions (such as leukemia).
This is part of the CBC - Complete Blood Count Test.
Other definitions of WBC on the web found here.
White blood cell (WBC) count. White blood cells protect the body against infection. If an infection develops, white blood cells attack and destroy the bacteria, virus, or other organism causing it. White blood cells are bigger than red blood cells and normally fewer in number. When a person has a bacterial infection, the number of white cells can increase dramatically. The white blood cell count shows the number of white blood cells in a sample of blood. The number of white blood cells is sometimes used to identify an infection or to monitor the body's response to cancer treatment.
This is part of the CBC - Complete Blood Count Test.
Other definitions of WBC on the web found here.
A complete blood count (CBC) provides important information about the kinds and numbers of cells in the blood: red blood cells, white blood cells, and platelets. A CBC can help a health professional evaluate symptoms (such as weakness, fatigue, or bruising) and diagnose conditions (such as anemia, infection, and many other disorders).
A CBC test usually includes:
White blood cell (WBC) count. More here.
White blood cell types (WBC differential). More here.
Red blood cell (RBC) count. More here.
Hematocrit (HCT, packed cell volume, PCV). More here.
Hemoglobin (Hgb). More here.
Red blood cell indices. More here.
Platelet (thrombocyte) count. More here.
Blood smear. More here.
How it works:
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Click here to buy PURELL and Help Andy!
Finding the source of virus in bacteria while taking care of someone with a primary immune deficiency becomes a common task.
This is a great product from Discovery Channel Store. I've been trying to join their affiliate program with no luck..
If they approve me I will put a direct link to the product..
Reduce your exposure to illness and tooth decay by sterilizing one of the most common breeding grounds for viruses and bacteria – your toothbrush. This compact case sterilizes your toothbrush with a built-in UV and ozone lamp.
Features:
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Fits a wide variety of basic and electric toothbrush heads
The compact size makes it perfect for travel. Toothbrush not included.
Hematocrit is the percentage of the volume of a blood sample occupied by cells, as determined by a centrifuge or device which separates the cells and other particulate elements of the blood from the plasma. The remaining fraction of the blood sample is called plasmocrit (blood plasma volume).
This is part of the CBC - Complete Blood Count Test.
Other "hematocrit" definitions here.
