A rare disease and tough decisions
I can’t imagine what it’s like not being able to hold your newborn child.
That’s the case for Haleigh and David Jacobs in Blanchard.
In a story I wrote with Sarah Phipps as photographer and videographer, we learned about Brantley Jacobs, an adorable 3-month-old baby who (likely) has the rare disease Klippel-Trenaunay syndrome.
Because of how far the disease spreads on Brantley’s lower body, it causes him too much pain when you try to hold him. Sometimes, on a good day, his parents and family can sit a pillow and thick blanket on their laps and place Brantley on that. But generally, they can’t.
The Jacobses love their son and are trying to determine what’s best for him. They’re headed to Boston in a week to get another opinion. The family has a Facebook page with information on how you can help out.
Redefining autism
A story today from the Associated Press discusses the proposed changes in how autism is defined.
The American Psychiatric Association is looking to make the revisions in its Diagnostic and Statistical Manual.
According to the AP story, the proposed changes include:
— A new “autism spectrum disorder” category would be created, describing symptoms that generally appear before age 3. It would encompass children with “autistic disorder,” now used for severe cases, plus those with two high-functioning variations.
— Autistic disorder and high-functioning variations — Asperger’s disorder and PDD-NOS, or “pervasive developmental disorder not otherwise specified” — would be eliminated, but their symptoms would be covered under the new category.
— Another new category, “social communication disorder,” would include children who relate poorly to others and have trouble reading facial expressions and body language. A small percentage of children now labeled with PDD-NOS would fit more accurately into this diagnosis, autism panel members say.
Some parents are concerned the changes would mean their kids won’t qualify for services that help them in their day-to-day lives. Meanwhile, some doctors say the changes would only help better define which children need certain services.
Do you have a child with autism? What are your thoughts on the proposed changes?
New health reporter, saying hello
I recently started as the health reporter at The Oklahoman.
I write about anything I can persuade my editors to believe is related to health.
That being said, I would like to hear from you. Let me know what you would like to read about, and I will do my best to write about it. You can reach me either in the comments of this blog, via e-mail or on Twitter at @jaclyncosgrove.
Stacie and Dottie Crimm: Mom with brain cancer avoids chemo to give her unborn child a better chance at lifeD
Dottie Mae Crimm and her aunt Jennifer Phillips and her uncle Ray Phillips at OU Children's Hospital. As this photo was taken Oct. 10, the day Dottie would go home with the Phillips, Ray said it looked like Dottie had folded her hands in prayer. He said he was praying, too. Photo by John Clanton, The Oklahoman
The TV anchor in Malta asked me some good questions about Oklahoma mom Stacie Crimm.
The brain cancer patient traded lifesaving chemotherapy so her unborn child would have a better chance at life. Stacie’s story of the ultimate sacrifice went viral and captured the hearts of millions worldwide.
So, several days after we ran my story on Stacie and baby Dottie, a producer urged me to share the story live during a Malta prime time segment on the true meaning of love.
Leslie Libreri, the anchor, asked if I was amazed by this story and why it got so much media attention.
Stacie’s brother, Ray Phillips, told me a few days earlier, “I’m a nervous wreck. I didn’t get a bit of sleep last night.” He said people had been calling and emailing from all over.
The story ran in The Oklahoman on Sunday. Almost immediately, we heard from producers, writers and interested folks from the Today Show, MSNBC, Fox and Friends, The Daily Mail, the BBC, along with stations, newspapers and magazines in Australia, Norway, London and other places.
Ray chose to talk just to The Oklahoman and later, the Today Show. He also graciously turned down numerous offers of donations.
Stacie Crimm, 41, is shown in this recent family picture. She refused chemotherapy for a brain tumor in order to deliver a healthy child.
I think people were captured by a mother’s unconditional love for her child, along with the nurses’ efforts to make sure Stacie got to hold her baby for the first and last time, just before Stacie died.
Ray thought his sister, who always shunned the limelight, would have been shocked at all the media attention.
He and his wife Jennifer are fulfilling their promise to Stacie to raise baby Dottie.
Ray said our story will be “all Dottie will ever need to know what a beautiful and kind person her mother was.”
Diabetes
Oklahoma has more than 225,000 individuals who have diabetes, a disease that can lead to blindness, loss of limbs and even death — yet many residents, especially baby boomers, know very little about the medical problem. A New York doctor, Dr. Gerald Bernstein, is an expert who dispels many of the prevalent myths and misperceptions associated with diabetes, and he offers answers to questions about the disease.
Although doctors and researchers still are unsure what causes the disease, Bernstein insists, “bad eating habits such as too much refined sugars, empty carbohydrates, and fructose does not cause diabetes.”
So, he outlines some of the most prevalent myths surrounding diabetes.
Question: Diabetes Will Make You Go Blind?
Answer: According to Dr. Bernstein, while it is true that all people with diabetes are at risk of blindness, heart problems, and kidney disease, it is equally true that in this day and age, a smaller percentage actually experience the full brunt of such vision complications than 30 years ago. “The better the patient controls his or her blood sugar, the less likely the more serious complications associated with diabetes will progress. Anyone already experiencing the side effects of diabetes needs to achieve and maintain the most stringent possible control in order to minimize their further progression, he said.”
Question: Since I Don’t Have To Inject Insulin, My Diabetes Isn’t A Serious?
Answer: A surprising number of people still believe this falsehood. Non insulin-dependent diabetes mellitus (type 2 diabetes) can produce destructively high blood glucose levels if not kept under control. Type 2 diabetes often grows more severe with time, so a patient who starts with low numbers will probably need to progress to diet-and-exercise-based blood sugar control, then to oral diabetes medications. It is often better to start with insulin early rather than waiting to use it as a last resort. Many older patients are finding their soo-called oral meds have become ineffective with time, and may need to switch to insulin injections to maintain effective diabetes control. Type 2 diabetes, even pre- diabetes is serious even if your blood sugar isn’t that high,” Bernstein warns.
Question: I Can’t Eat What I Like Anymore?:
Answer: That’s a misconception considering that what is now coined the “diabetic diet” is actually a well- balanced, sensible food plan that would be healthy for anyone to adopt, with or without the disease. “Keep in mind, you can ‘have your cake and eat it too’ but if you want to eat something rich in carbs, you will need to balance it out by cutting an equivalent amount of carbs or sugar from somewhere else in your diet,” he advised.
Question: I Can Tell If My Blood Sugar Levels Are Too High Or Too Low?
Answer: “This myth is dangerous because you can wind up in the hospital if you ignore symptoms of hyperglycemia, which is hard to detect by the way you feel,” said Bernstein. “Making do without a regular blood glucose tests is like flying without a parachute or crossing the street with your eyes closed. You’re guessing. Learn your body’s signals when you get into trouble, but be certain to use your glucose monitor to be sure.”
Question? Diabetes Is The Beginning Of The End?:
Answer: “I still get patients who believe their lives are over once complications set it,” said Bernstein. “The reality is that with the development of proper skills and mindset and the possession of monitoring equipment, patients with diabetes can continue to live full lives, even with severe complications. Many diabetics, even insulin-dependent, live well into old age.
“Pay attention to your body. Keep ahead of what your diabetes is doing — for baby boomers, this is no time for surprises! Consult with your doctor, or your diabetes educator. Discuss exercise plans, and any adjustment in medications with your doctor.”
Is your dad the best?
There’s no better way to honor dear old dad then by winning a competition for him.
Integris Men’s Health is having it’s first “What-A-Dad” contest. The rules are simple: In 200 words or less, tell why your dad deserves to win.
Prizes will keep dad healthy, happy and busy. The package includes a heart scan from Integris Heart Hospital, a one-hour massage from Pacer Fitness Center, a grill, dinner gift certificates, movie tickets, Zoo Amphitheater concert tickets and sports tickets.
Dad will get to hear his name on the radio, too. The winner will be announced Friday morning on WWLS-AM and KISS-FM and that evening on Cox Channel 7 Sports Night. The winner will also be recognized during the Yard Dawgz halftime show June 21.
The deadline to enter is Wednesday at 5 p.m. Please include your name, address and phone number. To enter, visit http://www.integrismenshealth.com and find the contest link under “Men’s Health University.”
Surely dad is worth 200 words of your time.
Jeff Raymond, Medical Writer
Unintended consequences of insuring the uninsured
In the things-to-consider-for-the-sake-of-considering-them category, take a gander at this story from the May 27 edition of The Boston Globe:
After healthcare reform was made law in Massachusetts in 2006, the number of newly insured patients in the state started to grow, and so did the demand for care. The demand, coupled with a longstanding shortage of primary-care physicians, is creating a real crunch for community clinics, say advocates of healthcare reform as well as area medical professionals.
About 80 percent of the new patients at a community health clinic who are covered under the state’s new health insurance program were formerly uninsured, a clinic supervisor told the newspaper. The result is a lengthy waiting list.
Clinics the newspaper contacted have had difficulty recruiting doctors.
‘What Chapter 58 has done is highlighted the crisis and the problem that we have with the primary-care workforce,’ said Dr. Bruce Auerbach, president of the Massachusetts Medical Society. According to a study conducted in 2006 by the society, 53 percent of patients who had an appointment with a primary-care physician were able to see a doctor within a week of initiating contact. Last year, only 42 percent were able to see a doctor within a week. …
Critics have said healthcare reform should not have been attempted without first addressing the workforce shortages, said John E. McDonough, executive director of Health Care for All, an advocacy group that helped craft the healthcare law. …
Healthcare advocates and providers say that the real problem is that the state underestimated the number of residents without health insurance. …
According to Jon Kingsdale, executive director of the Commonwealth Health Insurance Connector Authority, which administers the new health law, 340,000 people who had been mostly uninsured were covered through the state’s program as of Jan. 1. Of that number, about 110,000 have bought private insurance through Commonwealth Choice. But, he said, the remaining 230,000 people have MassHealth or Commonwealth Care, the state’s subsidized health insurance programs.
One thing that’s unclear is why the formerly uninsured choose the types of clinics mentioned in the story when it looks although they could go to any doctor. Maybe they can’t, or maybe the story didn’t address it.
Either way, the unintended consequences of insuring hundreds of thousands of people are worth considering.
Thoughts? Leave a comment on this blog.
Jeff Raymond, Medical Writer
Oklahoma ranks last again
After taking a hiatus from The Medicine Bag, I have returned … with a question.
Do you think it’s fair and/or accurate to see Oklahoma ranked at or near the bottom of, well, just about every study of health that comes our way? We can’t be worst in everything health-related, can we?
I say this after reading about Wednesday’s report from The Commonwealth Fund. The nonprofit ranked children’s health in states on 13 indicators that included access to and quality of care, outcomes, equity and cost.
Oklahoma pulled up the rear. Fifty-first. Behind the District of Columbia and Mississippi. Leading the rankings were Iowa, Vermont, Maine, Massachusetts and New Hampshire.
Now, I know the devil’s in the details, and I admit I haven’t looked at the methodology of this report. I usually do, however, which is why I ask about the fairness of all this. I imagine this report would pass muster if you agree what it measures accurately sums up the state of children’s health.
Ah, here’s where it gets tricky: Are the measures used fair? Are small differences in rates or percentages blown out of proportion? Is the information current, or as current as possible?
See the state’s “scorecard” for yourself here.
The interesting thing about these reports is they are all largely slicing and dicing the same data. Sometimes it gets hard to tell them apart.
Anyone who honestly assesses the state’s health will find huge problems. But last or near-last every time? Perhaps I’m becoming desensitized, but my reaction is getting to be “C’mon!?!”
What’s yours? Tell me what you think by posting a comment on this blog.
Jeff Raymond, Medical Writer
The next generation
When I was asked whether I’d be interested in speaking to a Youth Leadership Exchange class last week, I was ambivalent.
I knew I’d agree to speak, because I consider it to be an important form of outreach that may get kids interested in current events and perhaps even pick up a newspaper now and then, but I’ve had some negative experiences.
Speaking to this group definitely was NOT one of them: Not one of them asked what kind of car I drive, how much money I make or which famous people I have met. I’ll typically answer these questions, but I always hope for better ones.
They didn’t disappoint.
Each member of the class, a part of Leadership Oklahoma City, applied to be there. When I asked what careers they were interested in, many said medicine. It was perhaps appropriate that I spoke on health care day. Speakers included a hospital executive and a scientist. Some of the class toured The Children’s Hospital at OU Medical Center.
(I was able to hold a human heart once while in high school. I never got to tour Children’s.)
For the first time in a while, I was nervous last week. Put me on camera, ask me questions, have me go up and get in a complete stranger’s business — these things have become second nature. Kinda have to be in my line of work. Speaking for a half-hour to smarty-pants sophomores and juniors from throughout Oklahoma County was enough to make my palms sweat.
Although I had a bullet-point presentation prepared, I realized it was too heavy on numbers and policy when my father suggested the kids likely would want to hear about some interesting things I’ve done.
By this point it was too late to change anything, and I’m not organized enough to be able to keep a group of high school students’ attention for 30 minutes without notes. Besides, going up for a flight with the Air Force, while exhilarating, has absolutely nothing to do with being a medical writer. Being cloned, well, I forgot to mention that one.
I told the group things would be a lot less painful for them and for me if we talked back and forth. I threw out some numbers — the uninsured, growth in certain classes of prescription drugs, elective procedures, etc. — and we then discussed what they mean and what to do about them.
Not only were the kids open to discussing these (admittedly) wonkish ideas, they had varying, reasoned opinions. I was impressed.
Should health insurance be mandatory, like car insurance? Is this possible? Is this enough? Is this too much? Should a liver go to a 30-year-old or a 70-year-old teetotaler?
By the time we finished this back and forth, I had gone over my allotted time; it seemed like no time at all.
The only question that caught me completely off guard was whether a girl in the class should attend the University of Tulsa, my alma mater.
It’s nice to be an expert in something. I told her yes.
Jeff Raymond, Medical Writer
Did you miss Doctor’s Day?
You can be forgiven for thinking yesterday was anything more than a nice day to watch college hoops.
It was, but it also was National Doctor’s Day.
The American Medical Association uses the day to honor the more than 900,000 physicians in the United States.
“On this day of tribute, Americans can express appreciation for physicians’ continued commitment to providing exceptional medical care,” according to an AMA release.
The nation’s doctors, throughout almost 1 billion patient visits annually, are called to be healers, confidants and advocates, the AMA says.
The organization also says two-thirds of U.S. doctors provide some form of charity care and in 2006 were ranked the nation’s most trusted occupation.
Furthermore, the AMA says:
- Ninety percent of patients say they are very satisfied with their doctor.
- Americans’ life expectancy has increased by seven years since 1960.
- There has been a 77 percent decrease in the infant mortality rate since 1950.
- There has been a 63 percent decrease in the overall death rate for heart disease since 1950.
- There has been a 72 percent decrease in the overall death rate for stroke since 1950.
- There has been a 14 percent decrease in the overall death rates for cancer since 1990.
Do you consider the medical profession admirable and respectable? Do you respect your physician? Are you satisfied with him/her? Drop me a line at The Medicine Bag blog at http://blog.newsok.com/health.
Now back to basketball!
Jeff Raymond, Medical Writer
