Archive for the ‘Parent Perspective’ Category

Thoughts on World Autism Awareness Day

April 2, 2014 41 comments

Originally posted on Momentum - The Baylor College of Medicine Blog:

Dr. Peter Hotez and his daughter Rachel.

Dr. Peter Hotez and his daughter Rachel.

Today is the seventh annual World Autism Awareness Day, a day when organizations committed to autism research, advocacy, or policy promote awareness through events and public discussions.

As both a scientist and a father of four – one of whom is an adult child with autism (as well as other mental and physical disabilities) and a second who is actually doing her Ph.D. on the developmental psychology of autism – I am often asked to speak or provide public comment about the autism spectrum conditions, especially their causes.

Indeed, the fact that I lead a multidisciplinary team that develops neglected disease vaccines while also serving as President of the non-profit Sabin Vaccine Institute and Texas Children’s Hospital Center for Vaccine Development often places me front and center in the dialogue about purported links between autism and vaccines.

For me, the issue is…

View original 584 more words

Say #NoWayDrJay: Don’t Bring Measles Back

March 31, 2014 31 comments

The CDC has recently reported that the United States is experiencing a record number of measles cases this year with outbreaks spread from New York to California.  Despite the fact that measles was once declared eliminated in this country, 14 years later we’re on track for a record high year with 89 cases so far in 2014.

Due to various media outlets covering these outbreaks, we’ve begun receiving quite a few inquiries from concerned parents on our Vaccinate Your Baby Facebook page.  Some have infant children under one year of age who aren’t old enough for their first dose of measles vaccine.  Others have children who have yet to receive their second dose at age 4-6 years of age and they’re wondering if their children can be vaccinated earlier.  Others have children with medical conditions that prevent them from receiving the measles vaccine.  These children are completely dependent on others being vaccinated to help provide a protective community immunity and their parents are understandably concerned about these outbreaks.  Still others have fully vaccinated children, but are infuriated by the statements being made by irresponsible physicians that have tried to downplay the significance of the outbreaks and encourage vaccine refusal.

Last week we highlighted comments Dr. Bob Sears’ made on his Facebook page that suggested that measles infection was not dangerous.

Now we’ve seen a similar message from Dr. Jay Gordon, a well known pediatrician in Los Angeles, who sent this letter to his patients last week.


Our office has received a large number of phone calls and emails about measles.   There are 21 reported cases in Orange County.  I’m not aware of the number of cases in our immediate area. In July, 2014, we celebrate the 30th year at 901 Montana and we have never had a child in our office contract measles.  As many of you know, I use the MMR vaccine more sparingly than most pediatricians so I’m a bit surprised that the number is zero, but it is.

The media, as they often do, are covering this story quite heavily and the headlines make it appear that there is imminent great danger.  In fact, the last fatality from measles in the USA was eleven years ago in 2003. Headlines speak of “ten times more measles in 2014.”  The newspaper articles often don’t mention that California had very few cases of measles in the past five years so the 35 cases reported among 38,000,000 Californians is not a frighteningly large numerical jump.  There have been about 80 cases of measles in the United States this year.  All of these cases began with importation by travelers and then spread to close contacts.  Measles is unlikely to be spread by a brief encounter or sharing a BART train.

If you would like the MMR vaccine, please feel free to get it.  My personal reservations have nothing to do with Dr. Wakefield’s “Lancet” article and are not supported by published medical research.  These reservations are supported by observation and anecdotal evidence only.

The CDC defines outbreak as two cases spread from the same source.  The measles outbreak of 2014 does not pose a risk to your healthy child. Best, Jay

Jay Gordon, MD, FAAP

Read more…

Talking About Immunizations Positively and With Purpose

March 14, 2014 4 comments

We often hear the claim that the public is growing increasingly anxious about the safety of childhood vaccinations.  We’re even told that this is leading parents to refrain from getting their children immunized.  waitingroom

But how can do we know this for sure?  

Fortunately, in an effort to understand the public’s vaccine perceptions, social scientists are beginning to look at these questions in the same way that we investigate vaccine safety and efficacy.  Through research.

Last month an interesting report was released entitled Vaccine Risk Perceptions and Ad Hoc Risk Communication: An Empirical Assessment.  It detailed two principal findings:

“First, that vaccine risks are neither a matter of concern for the vast majority of the public nor an issue of contention among recognizable demographic, political, or cultural subgroups; and second, that ad hoc forms of risk communication that assert there is mounting resistance to childhood immunizations themselves pose a risk of creating misimpressions and arousing sensibilities that could culturally polarize the public and diminish motivation to cooperate with universal vaccination programs.”

In other words, the majority of people are not focused on vaccine risks, and by repeatedly stating that there is mounting resistance to vaccines we’re possibly doing more to damage the public’s risk perception than to improve it.

This is an interesting report to consider because it can directly influence the way in which we talk about immunizations.  The findings suggest that government agencies, public health professionals, and other constituents of the public health establishment should evaluate their messaging to Read more…

Courts Decide in Clash Between Spiritual Healing and Medical Neglect

February 21, 2014 10 comments

Since we are currently hosting a popular blog series that focuses on the rights of the unvaccinated child, I felt this recent case being reported out of Pennsylvania this week may be relevant to the overall discussion.

schaibleThe case pertains to a couple by the name of Herbert and Catherine Schaible, who are third generation members of the First Century Gospel Church in northeast Philadelphia.  Back in April 2013, the Huffington Post reported that the church’s website included a sermon entitled “Healing – From God or Medicine?” which quoted Bible verses that purportedly forbid Christians from visiting doctors or taking medicine.  It was reported as stating,

“It is a definite sin to trust in medical help and pills; and it is real faith to trust on the Name of Jesus for healing.”

As a result of their participation in this fundamentalist church, the Schaible’s have relied completely on faith healing throughout their own lives and in the care of their nine children.  But this has proven to be disastrous.

In 2009 their two-year old son Kent died from bacterial pneumonia which resulted in the couple being convicted of involuntary manslaughter.  In 2011 they were sentenced to 10 years’ probation and received a court order which mandated they take their children to get annual checkups and call a doctor if a child became ill.

Unfortunately, they failed to adhere to the court order and in 2013 their 8-month-old son Brandon also died of treatable pneumonia.  The couple now face a three and a half to seven-year prison sentence for the religion-based medical neglect of their son.  While six of their seven surviving children are now in foster care or are residing with relatives and are receiving medical, dental, and vision care, these medical precautions come too late to have saved Kent and Brandon. Read more…

Infant Dies at 38 Days But Her Story Tries to Save Lives

January 30, 2014 6 comments

Katie and Craig Van Tornhout with their miracle baby CallieAfter five years and four miscarriages, Katie and Craig Van Tornhout celebrated the birth of their daughter Callie.   Although she arrived a few weeks early, she was truly their miracle baby.  But their joy quickly turned to grief when a disease called pertussis, also known as whooping cough, claimed her life at just 38 days old.

Katie explains,

“To an adult, pertussis can seem like just a stubborn cough, but to Callie and other newborns who are too young to be immunized, it can be deadly because they aren’t able to fight it off.   In an infant, it’s likely that this disease can result in respiratory failure.  IV tubes or ventilators may be needed to help a baby breathe and they are in danger of having their lungs shut down.  As a mother, I can’t tell you how heartbreaking this is to watch.”

Families_callie_van_tornhoutToday marks the four-year “angelversary” of Callie’s passing, and in that time a lot has changed.

In 2012, 48,277 people were diagnosed with pertussis and the Advisory Council of Immunization Practices (ACIP) issued new vaccine recommendations advising all expectant women to receive a Tdap booster with each pregnancy, preferably in their third trimester.  Not only does the vaccine help protect the mother from contracting pertussis and infecting her own newborn, it also provides maternal antibodies that can protect the newborn in those early months before the baby can be fully vaccinated.

ECBT_Pertussis English_Bus Shelter_HIGH RES SmallAnd a lot has changed for the Van Tornhout family as well.  In addition to their 17-year-old son Cole, the Van Tornhout’s have since had two other children, Chesney and Cain, with another on the way.  With each new pregnancy they have taken every precaution to protect their babies from pertussis, and every opportunity to educate others about the importance of their adult Tdap boosters.  Not only have they insisted that friends and family be immunized, but they’ve also ensured that every hospital staff member who has had contact with their babies was also up to date on their Tdap booster.

“We still wonder where Callie contracted pertussis. She was only five weeks old and never went anywhere except to see her doctor.  I wish I had known that Callie was vulnerable to this disease and I wish I had known about the need for adult Tdap boosters.  I would have insisted that I, my husband and our friends and family who came to visit be immunized. I would have asked more questions about the nurses who handled Callie in the NICU, and whether they had been immunized.” Read more…

Mother’s Facebook Updates Detail Son’s Tragic Death from Pertussis

January 28, 2014 35 comments

BradysMemoryBrady was born on November 20, 2011 and weighed in at a healthy 8 lbs., 6 oz.  His parents, Jon and Kathy, thought they were taking every precaution to protect their baby.  They even insisted that friends and family wash their hands or use hand sanitizer before they were permitted to pick him up.  What they didn’t realize was that these actions wouldn’t be enough to protect their precious son from a dangerous disease called pertussis.

Since infants don’t begin receiving vaccinations for pertussis (also known as whooping cough) until they are two months old, they remain vulnerable to this highly contagious disease at a time when they are most fragile.  Today we share Brady’s battle in the same way that his mother did; through her Facebook status updates.  This small glimpse into one family’s heartbreak reminds us of how fragile a young life can be and highlights how important adult pertussis boosters are in sparing others from suffering and possibly even death.

In early January, Brady’s parents suspected that he was coming down with a cold.  When his fever spiked to 104 they brought him to the ER where he was subjected to a multitude of tests, but ultimately sent home where they continued to monitor his condition.  

Brady’s mother Kathy kept her friends and family updated on Brady’s condition through her personal Facebook posts.

January 9 : I hate when one of my babies are sick. Had to go to the ER on sat/sun morning because of a high temp. They ran tests and everything came back negative, thank god! Went to his pedi today. Got more blood work. It’s just a cold, no medicine. Thankfully he is fine! Hope my little guy gets better soon :(

January 11: Went to the pedi office this morning with my Brady pants. His breathing was worrying us. We have to do updraft treatments every few hours and go back for 6 to see the md. Poor little guy :(

January 15 : Home. My sis is here, bought us a humidifier for Brady for Christmas.  Hopefully it will help with his horrible cough! When will this end? Its horrible having him so sick :(

One week later, Jon and Kathy were back at the hospital with Brady.  While the staff worked diligently to help Brady, his condition was constantly changing and the uncertainty was extremely stressful. Read more…


Get every new post delivered to your Inbox.

Join 325 other followers