January 27, 2007
Update: Food and Feeding
This is an update to:
Let's Face It: Lifestyle: Food and Feeding:
Eating can be one of the most subtley pervasive concerns for persons with facial difference. Restaurants favored by friends may not have a single thing on the menu that you can consume. Running late in the morning? You can't count on being able to find something edible in the vending machine. If you are dependent on medical nutrition, boredom can set in quickly.
The resources below can help provide some variety and personal control in this sensitive area, and focus on finding recipes to enrich your choices. You'll quickly notice that many of these are not specifically related to facial difference, but rather may come from areas with a variety of concerns related to eating problems. Some may be from simple mouth tenderness after dental procedures, while others may come from patients with swallowing or chewing problems for a variety of reasons.
* RECIPE RESOURCES
Cathy's EC Cafe (Esophageal Cancer): http://www.eccafe.org/cnt/index.html
Dr. William Trepp, Orthodontic Specialist: Soothing Recipes: http://www.orthodontics.org/recipe.htm
Easy to Swallow:
Eating to Win: A Collection of Recipes and Ideas from Esophageal Patients and Carers in the USA and the UK:
Food Downunder: No Chew Food Recommendations: http://fooddownunder.com/cgi-bin/recipe.cgi?r=174798
Huntington's Disease Advocacy Center: Food Recipes for Those of Us with HD: Recipes:
Muscular Dystrophy Association: ALS Division: MEALS for Easy Swallowing:
Novartis Medical Nutrition: Dysphagia: Recipes: http://www.novartisnutrition.com/us/articleDetail?id=3734
TMJ Friends Message Board: Life: Nutrition, Recipes, Eating Concerns: Random Soft or No Chew Recipes: http://www.tmjfriends.com/forum/archive/index.php/t-860.html
University of Minnesota Extension Service: Resources for People on Special Diets: http://www.extension.umn.edu/distribution/nutrition/DJ3299.html
University of Pittsburgh Medical Center: Swallowing Disorders Center: Recipes to Increase Your Caloric Intake: http://swallowingdisorderscenter.upmc.com/Recipes.htm
UC Davis: Children's Hospital: Cleft and Craniofacial — postsurgical nutrition, Sample recipes: http://www.ucdmc.ucdavis.edu/children/services/cleft/health/postsurg/recipes.html
January 23, 2007
Q: Soft Spot Closed Too Soon?
My 5-month-old daughter's soft spot has already closed. This was brought to the attention of her pediatrician; he had a cat-scan done and said that there is nothing to worry about. Everything that I have read states that the soft spot should be re-opened. Do we need a second opinion?
I would like to refer you to some resources that confirm what had already been heard from the pediatrician.
Family Practice Notebook: Fontanelle: http://www.fpnotebook.com/NIC25.htm
According to this excellent (although abbreviated) resource, normal closure of the fontanelle happens between 4-26 months, with a median of 13.8 months. Closure at 5 months is unusual, but not necessarily abnormal. The pediatrician did the completely correct thing in evaluating whether this was a normal or abnormal closure.
The Abnormal Fontanel / Joseph Kiesler, MD, and Rick Ricer, MD
Am Fam Physician 2003;67:2547-52. http://www.aafp.org/afp/20030615/2547.html
This article also says that early closure can be normal, and describes how to diagnose whether or not it is a problem.
"The diagnosis of an abnormal fontanel requires an understanding of the wide variation of normal."
"Fontanel closure that occurs as early as three months of age can be within normal limits, but careful monitoring of head circumference in such cases is essential to exclude a pathologic condition."
Pediatric Education / Donna M. D'Alessandro MD. When Should the Anterior Fontanelle
Close? (Monday, April 17, 2006): http://www.pediatriceducation.org/2006/04/17
This article intended solely for doctors -- clinicians and students of pediatrics. It provides a learning example of a child with early closure and no evidence of craniosynostosis, who is closely monitored rather than being treated.
I hope this is helpful. If your family continues to be concerned, or observes an odd shape to the baby's head, you might want to return to her pediatrician with notes of any changes, or ask for a second opinion.
January 21, 2007
Q: Finding Dental Treatment for Medicare Patients
I have a patient who needs to have dental treatments after head and neck cancer. The patient has medicare only, and they will not pay for this specific treatment. Do you have any funding for patients like this? Do you know who else may have a foundation dedicated to these patients?
Let's Face It is an information service only, and does not have funding for clinical care or treatment. However, we do provide information on how to find funding or care.
For the first step, please check the Let's Face It section on financial matters:
Secondly, another thought would be to contact a nearby dental school. Many dental schools have community support programs or can provide low cost treatment from students or graduate students for patients with special needs.
Last but not least, there is an organization that provides support specifically to patients who have or are recovering from head and neck cancers.
Support for People with Oral and Head and Neck Cancer, Inc (SPOHNC):
Many times, even if the organization does not provide funding, they will provide support groups or ways to talk with other patients. For many questions, other patients can be a rich and powerful resource for information on questions related to practical matters, such as this. Often, someone else may have been in the same situation and discovered a solution.
January 11, 2007
Recognition Beyond Burned
In not-so-recent news, I found this article about a photo exhibit in the New York area. The photographer was Steve Lobel, and he tells the story of why he made an exhibit of beautiful photos of burn survivors, and how he learned to see their beauty. Here are a few articles about the project, named "Recognition Beyond Burned."
New York Times: NY Region: Facing Their Scars and Finding Beauty: http://www.nytimes.com/2006/06/18/nyregion/18burn.html
RNews: Artwork Helps Burn Victim Relief, by Marcie Fraser: http://www.rnews.com/print.cfm?id=38565
More about Steve Lobel.
January 01, 2007
Betsy's To Do List
Kelvin at Ramblings sent us a copy of his New Year's blog post, highlighting an inspirational bookmark he received from Let's Face It some time ago. Many thanks, Kelvin, for sharing this with us!
* Mend a quarrel
* Seek out a forgotten friend
* Dismiss suspicion, and replace it with trust
* Write a love letter
* Share some treasure
* Give a soft answer
* Encourage youth
* Manifest your loyalty in word and deed
* Keep a promise
* Find the time
* Forego a grudge
* Forgive an enemy
* Apologize if you are wrong
* Try to understand
* Flout envy
* Examine your demands on others
* Think of your neighbor first
* Be appreciative
* Be kind and gentle
* Laugh a little
* Laugh a little more