Rare disease needs highlighting
ERIN and CHRIS RIDDLE Big Bear City
Mar 6, 2016
Chris and I would like to thank Kathy Portie and The Grizzly for investigating and giving voice to Cyclic Vomiting Syndrome: CVS.
We would like to thank some people that were instrumental in helping us in getting the proper diagnosis and treatment: Dr. Fagan (aka: Dr. House) who at the time was Spencer’s E.R. doctor. Spencer had three E.R. visits in 15 days, lost over 50 pounds, and was in critical condition. He ordered every test and overturned every rock, and was still unable to figure out this monster.
In medicine, “When you hear hoof beats, think of horse, not zebras.” (Fagan) said he heard the hoof beats, but didn’t see horses and knew that this was a “zebra” (a zebra is the medical slang for arriving at an exotic medical diagnosis) and suggested we get to a university hospital; Dr. Joe Tate, P.A.; Dr. Cary Stewart, Dr. Jeffrey Orr, and Dr. Olesnicky at BVCHD are (Spencer’s) lifeline for his CVS. Physical therapist Dr. Vic Oberneder and chiroractor Calvin Pramann in treating (Spencer’s) T9 compression fracture/post op Kyphoplast surgery and recent diagnosis of osteoporosis. Pastor Michael Barnes for his visits; Cynde and Eric Gardner for Reiki treatments; Mary Bosco, registered dietician; Rita McMillan massage therapist; the late Dr. Ken Turney DDS for coating (Spencer’s) teeth with plastic to protect them from acid damage, and many “ists” at UCI, UCLA and Cedars-Sinai.
Having a rare disease means many trips to many doctors, the E.R. hospital(s) more times than we would care to count. Try to imagine being told your child has a very rare disease and there are no treatments to heal them, few doctors, and fewer answers. You research your child’s disease, manage the symptoms while searching desperately for research studies and clinical trials.
At times we become frustrated, hopeless, angry, sad, lonely, tired, confused and abandoned, but our support system sustains us. With research and funding we are hopeful a cure is possible.
Bosco Nutrition Counseling
'Healthy' Food Labels May Be Misleading"
Contributor: Mary Bosco, RD, LD | 07/29/2014
You're in the grocery store trying to pick out an applesauce. One says "all natural" on the label, one doesn't. If you pick the one with the healthier-sounding label, you're not alone, says Mary Bosco, a registered and licensed dietitian. But, she adds, that doesn't necessarily mean it's better for you."A recent study shows that certain buzzwords that connote health, such as 'whole grain,' 'antioxidant' or 'all natural,' can create a misconception that a food is actually healthy when it's not," Bosco says. "People focus on those buzzwords and don't realize that the ingredients on the label tell a different story. If a prepackaged box of cookies says they're made with whole grains, but they also have a lot of sugar or high fructose corn syrup, that is misleading."The report, published in the journal Food Studies, asked participants in an online survey to look at labels on packaged food items such as cereal, chips and soda. Each food had two labels—one with its "healthy" buzzword and one in which the buzzword was digitally removed. Invariably, the labels with the buzzwords were picked as the healthier option."The subtitle on this report is 'How Food Marketing Creates a False Sense of Health,' and that's why this study is important. So many health problems, from obesity to high cholesterol to cardiovascular disease, can be attributed to a poor diet," Bosco says. "Putting these misleading words on labels lulls people into thinking they are making good choices, yet they are putting their health at risk."Bosco says that people need to be savvier when reading food labels, and go beyond the buzzwords."The study also had participants compare the nutritional facts on different products to see which were healthier and many people had problems figuring that out," Bosco says."Check the serving size and the number of calories per serving, listed at the top of the nutrition facts label. Next come the fat, cholesterol and sodium counts—you want those numbers to be small because those are the things that aren't good for you in large amounts. After that is fiber, protein, and vitamins and minerals, and you want high numbers for those. Be sure to look at the ingredient list—sugar, high fructose corn syrup, partially hydrogenated oils and other unhealthy ingredients should not be among the first three listed. When in doubt, try to buy whole foods whenever possible.