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Chair’s Welcome
Happy 2009! Many may not feel that 2009 rings in on a happy note. So much has happened since the last newsletter came out. With things changing rapidly in the economic arenas, both patients and physicians are experiencing new realities. Advocating for our patients can be more challenging as government coffers shrink and parents lose their jobs and possibly their health insurance. However, this is a time when children need a voice more than ever. Preventive medicine and health maintenance is crucial to the well being of our patients and the AAP will continue to be a resource advocating for the healthcare needs of children. At the same time, it is important that we run our businesses wisely. The Section on Administration and Practice Management (SOAPM) is actively working on developing resources that will be of vital importance to Young Physicians. The business of medicine is often a neglected topic in residency; I encourage you to look at the resources available through the AAP, especially Practice Management Online.
The Section on Young Physicians is also always looking for ways to connect people in pediatrics. We receive numerous requests from our members for opportunities to get more involved in the AAP. At the same time, we receive numerous requests from chapters on how to get Young Physicians involved. If you have time, even in small blocks, and want to get involved in the AAP, contact your local chapter leadership. There are so many ways YPs can work with the AAP for the betterment of children. If you need to know who to contact, log in to the Members Only Channel from the front page of www.aap.org and your chapter information will be available from there. You can also find more information at http://www.aap.org/sections/ypn/yp/aap_yp/contact.html and click on your district for more information.
The Annual Leadership Forum (ALF) is right around the corner in March 2009. If you have ideas for resolutions, be sure to get in contact with your chapter leadership as soon as possible to discuss how to take your ideas forward. As always, check our Web page often to see what is new in the Section on Young Physicians.
Best in 2009,
Antoinette L. Laskey, MD, MPH, FAAP
Chair, Section on Young Physicians
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Editor's Note
By Dennis Z. Kuo, MD, MHS, FAAP
The other day I looked at the archives of the SOYP newsletter Web site and saw a line of issues fill up the screen. My reaction? Pretty cool.
Okay, it�s not quite like going through a bookcase full of dusty archived bound issues. And we�ve now gone all-electronic, so we�ll never sit on a dusty bookcase. But the really neat thing is that these newsletters have pretty much written themselves. We�ve only asked for a handful of articles, with the vast majority coming from you, the readers. We never quite know what we�re going to get, but it just reminds us as �young� physicians, there are a lot of stories to tell, experiences to relate, and pearls to learn.
It is not news to any of us that pediatrics, and medicine in general, is constantly evolving and changing to reflect a shifting health, demographic, financial, and regulatory climate. Perhaps you�ve had your own changes, evolutions, or shifts. In this issue you�ll read about one of your colleagues that entered public health, another colleague that invented and marketed her own product, and another that entered the world of clinical trials in pursuit of the best outcome for her new baby. Certainly, as pediatricians, we are all driven by that unyielding desire to pursue the very best for our patients and our families, and in our changing world, we should learn from each other as we find what paths are best for us. We are pleased to bring you another SOYP newsletter issue in that tradition, hope you enjoy the latest, and ask that you consider submitting your own experience or story.
That�s it from my corner of the world, which right now happens to be Little Rock, Arkansas, for anyone that wonders where I ended up. Gracie and I love to hear about your changes, shifts, or evolutions. Vague notions to fully fleshed out articles are always welcome!
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District IX Report Winter 2009
By Christina Vo, MD, FAAP
Congratulations, Californians, on passing proposition 3 (bond initiative for Children�s Hospitals) and defeating proposition 4 (reporting requirements for adolescent abortions) in last fall�s election! Despite the failure of proposition 8, the District continues to support rights for gay and lesbian families.
I would like to take this opportunity to review the District IX Strategic Plan Priorities. Your chapter membership supports all District activities in our state and in particular in Sacramento. AAP California�s (AAP-CA) priorities are 1. Access, 2. Immunizations, 3. Obesity Prevention and Healthy Lifestyles, 4. Pediatric Council, and 5. Membership. Here is a quick review of where we stand on each of these topics:
1. Access: Children�s access to health care is always at risk, especially in this time of serious state budget issues. AAP-CA grass roots efforts were able to eliminate the possibility of a waiting list for Healthy Families (our state�s SCHIP plan) coverage. Now AAP-CA is pushing for Senator Steinberg�s bill SB-1 to continue protection of children�s health coverage. Our lobbyists and executive director Kris Calvin are constantly working in Sacramento to make sure that big budget cuts do not mean big losses for children�s access to care.
2. Immunizations: AAP-CA and the California Medical Association (CMA) are co-sponsoring legislation to require health care plans to cover the full cost of vaccines plus the administrative costs.
3. Obesity Prevention and Healthy Lifestyles: Several bills were passed in 2008, including AB 57: Safe Routes to School construction program; AB 97: Ban on trans fats in restaurants; and SB 1420: Posting of nutritional information. Continue to watch for �Green Ribbon Week� legislation, an effort to bring community pediatricians and schools together for active and healthy living.
4. Pediatric Council: This statewide council meets throughout the year. Both pediatricians and representatives of health insurance companies sit at the same table to discuss everything from benefit plan coverage to immunization reimbursement to retail-based clinics.
5. Membership: Each chapter is working on bringing in more active members, including young pediatricians like ourselves and academic pediatricians.
For more information, check out the AAP-CA web site or contact your chapter leaders. To become involved in state activities, simply join your chapter. Updates like these usually come from the chapters.
You can also contact me with your specific interests: I am developing a reference list for recommending young California pediatricians when leadership or committee opportunities arise (e.g. if a disaster preparedness team wants a pediatrician, I would like to know ahead of time that you might be the pediatrician to recommend for that team).
Christina S. Vo, MD, FAAP
District IX Representative and SOYP Executive Committee Member
csvo@aap.net
(925) 438-1106
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Money to Recruit You!
By Christina Vo, MD, FAAP
That�s right. The AAP is offering a grant to recruit young physicians. Believe it or not, you are a very important person to the National AAP. A resolution was passed in 2005 which stated that the recruitment and retention of young physicians (that�s us!) is a priority for the AAP. The AAP recognizes that we are the future of this great advocacy and physician support organization. For the third year running, the AAP is putting money up for keeping you in the AAP and bringing new young physicians like yourself into the AAP. The SOYP and the SORe (Sections on Residents) are offering grants to the chapters of up to $3000 for the recruitment and retention of young physicians (under the age of 40 years and/or in the first five years of practice), residents, and medical students.
Your chapter leaders already know about this grant, applications for which are available now and due on March 1, 2009. The SOYP is looking for activities which are �renewable� meaning that your chapter might do the same event year after year in order to continue to bring new generations of young physicians into the AAP. We (SOYP Executive Committee) are interested in activities which seek out young physician leaders, the people who may be the leaders of the AAP at the local, state or national level in the future. We would also like to see chapters reaching out to areas where there is less representation from young physicians.
As active members of the AAP, all of us members of the SOYP are the chapter�s best resource for finding out what types of activities would be useful and attractive to young physicians in your chapter. That means that you should be creative! Qualifying activities could be a single event (e.g. a recruitment dinner), a series of events (a grand rounds lecture series), or any other activity as long as it is directed toward young members. Make sure your grant specifies whether the activity is focused on young physicians in practice, residents, or medical students. If you have an idea for an event, notify your chapter president: he or she needs to approve any project submitted for the grant.
The past two years, several chapters won grants with successful outcomes. Each chapter has different needs, so determining those needs is essential to having a successful program. For example, chapters with well-established young physicians groups may want to fill a void in their range of programs. California Chapter 1 already has several active young physicians and several events geared toward young physicians, but no organized young physician meeting. Their first annual meeting was established using this grant. Young physicians from around the chapter were invited to learn about the chapter activities and hear a great speaker on integrating alternative medicine into daily practice.
The Kansas chapter wanted to start seeing young physicians involved so they held two networking events. Only a few young physicians attended but the chapter was able to identify members who might stay involved and continue to bring in new members.
You may be the only ones who know what your chapter really needs to keep young physicians involved. So we leave it in your hands to guide your chapter on recruiting young physician involvement in the AAP.
I hope that this inspires you to apply for a SOYP Recruitment and Retention grant. The application can be found on the YoungPeds Network site and is due on March 1, 2009. If you have any questions, you can e-mail me at christinavomd@gmail.com or Bridgette Mathis at bmathis@aap.org .
Christina S.L. Vo, MD, FAAP
SOYP Executive Committee member (District IX)
Chapter Outreach Grant workgroup leader
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When Will Vaccines Be Left Off the Hook?
By Sabrina Ben-Zion, MD, FAAP
As a young pediatrician and a mother of two young children (3 years and 3 months), I feel I try to balance parental concerns with contemporary medical knowledge in my daily practice. This sometimes leads to internal conflict, such as with the vaccines versus autism debate.
I cringe at the word �debate� since there has not been a single study linking vaccines and autism. Yet there have been hundreds showing no link between the two. (To Ms. Jenny McCarthy: not all of the studies have been funded by the pharmaceutical industry.) I wish the media could give vaccines the same treatment as the criminal justice system � innocent until proven guilty. It infuriates me that myths about vaccines still abound such as that there is still thimerosal in vaccines (enough already!) and that celebrities waging a personal crusade can get more attention and perhaps more credibility than a huge organization of medical professionals.
What bothers me more though, and in my opinion is more dangerous, is when notable pediatricians claim a �possible� link between vaccines and autism. Dr. Robert Sears, in the November issue of Parenting magazine, is quoted as saying �I am concerned that health officials haven�t done any human-infant research to make sure the amount of aluminum in vaccines is safe� and offers an altered vaccine schedule in his book. And Dr. Jim Sears, on a recent episode of the national TV show �The Doctors� was encouraging a family with four autistic children to not vaccinate their next child. What is scary is that these pediatricians reach a larger parental audience in one moment than I can in a lifetime of office practice.
As much as I am firmly on the pro-immunization side and cannot wait for vaccines to be off the hook when it comes to autism, I have to temper that with the mounting parental anxiety regarding vaccines. With all the recent media coverage of vaccines, there has been a growing number of parents in our office who either express fears about vaccines, don�t want to vaccinate, want to delay vaccinating, or want to vaccinate on an altered schedule. Some pediatricians refuse to accommodate these patients. I read with interest in the AAP News the letter that one practice gives to all families basically condemning those who do not vaccinate and thought, �Bravo! Now there�s a message!� and contemplated briefly how I could get the large organization I work for on board with a similar letter.
But then I ask myself, is it better to give in to parental fears and hopefully eventually get a child fully immunized, or is it better to insist upon the recommended immunization schedule that has been scientifically studied and provides the best protection against illness? It is hard to make a convincing argument for why a baby needs the hepatitis B vaccine if born to a hepatitis B negative mother. I know that answering parents� vaccine questions and/or discussing an alternate schedule of vaccines with prioritization of the different ones takes time and energy. But it also builds rapport and more importantly, trust. Trust that you will listen to the parents� point of view and allow them to actively participate in the care of their child.
Since the competing pediatric practice in our area stopped complying with altered immunization schedules, we have seen an increase in these requests in our practice and I now face this dilemma more often. For now I will keep working with parents to encourage them to vaccinate their children but I know I look forward to the day when vaccines are let off the hook and I can say �told you so� to Jenny McCarthy and to both Dr. Sears.
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Fetal Surgery: My Experience with the Management of Myelomeningocele Study (MOMS)
By Kelsey H. O�Brien, MD, FAAP
No one would dispute the importance of clinical experience in improving one�s medical practice. In pediatrics, however, I would assert that there are two personal experiences that can render a physician both more knowledgeable and empathic. The first is assuming the patient role; the second is becoming a parent. This past summer, I was given the opportunity to do both.
Nine months after our wedding and one day after my husband left on his fifth deployment to the Middle East as an Air Force C-130 pilot, I discovered that I was pregnant. When he finally called two days later, I casually told him that we wouldn't�t be able to attend the Florida/Arkansas football game that fall as we were due to have a baby that same weekend. After he confirmed that I wasn�t joking, we both laughed and did as much celebrating as two can do 4,000 miles apart.
Aside from a little nausea and a good bit of fatigue, the pregnancy was going great. I marveled at my growing belly daily, and though I wished my husband could have been there, I looked forward to my monthly OB visits. At eighteen weeks gestation, however, the tone of the pregnancy changed. My quad screen was positive for a neural tube defect, and a detailed ultrasound on May 1 confirmed that our baby had a L5, S1 level myelomeningocele. A joyful and excited expectancy had morphed into an anxious and fearful period of waiting. As a physician, I was determined to seek out any and every way we could best serve this baby, whether it was before or after delivery. I learned that fetal surgery was being performed to repair neural tube defects as part of the Management of Myelomeningocele Study (MOMS). After a week of pouring through research articles and contacting anyone I could reach who had been even remotely involved with this fetal surgery, our belief was that MOMS offered our baby the best chance.
MOMS is a national clinical trial in which women carrying spina bifida-affected fetuses are randomized to one of two treatment arms: prenatal surgical repair or postnatal surgical repair, the current standard of care. Three centers are involved in the study: The Children's Hospital of Philadelphia, University of California at San Francisco, and Vanderbilt University. Currently, in the United States, fetal surgery for myelomeningocele is not performed outside of MOMS.
Coincidentally, I completed my pediatric residency at Vanderbilt and practiced in Nashville until marriage took me to Little Rock just one year prior. I was familiar with Dr. Noel Tulipan, the pediatric neurosurgeon who performed the fetal repair at Vanderbilt. He was a highly respected surgeon and the husband of an allergy attending under whom I�d worked during my training.
My husband returned home a week early and we headed to Nashville for our MOMS evaluation. Over three days we met with members of the MOMS team. We learned the ins and outs of spina bifida and most importantly, the risks and potential benefits of prenatal surgery. If we were selected for and decided to participate in the study, we would then randomize to either the prenatal or postnatal group. If placed in the prenatal group, I would be required to remain in Nashville with a full time support person until the baby was delivered by c-section at 37 weeks or earlier if I went into labor. If selected for the postnatal group, we would go back to Little Rock and then return to Vanderbilt for a c-section at 37 weeks followed by immediate repair of the baby�s back. Essentially, data from fetal surgeries prior to MOMS exhibited an approximate 50% decrease in VP shunts compared to those who had their defect repaired postnatally. The primary downside to fetal surgery is preterm labor; babies in the prenatal group were born at an average gestational age of 33 wks.
On June 4, we learned that we were eligible for the study and we were eager to participate. Our names were entered into the computer and after thirty long seconds, the words on the screen flashed �prenatal group.� We cried with overwhelming joy (and on my part, a touch of fear).
The next day, now at 22 weeks gestation, I reported to the Vanderbilt labor and delivery floor. Excitement had replaced any anxiety I�d had as I couldn�t wait for our baby�s back to be whole. An IV was placed and I was whisked away to the OR. A typical c-section incision was made, the uterus was removed, and a classical (vertical) incision was made. The baby was given an intramuscular fentanyl injection and his defect was centered in the uterine incision and then repaired by Dr. Tulipan. Due to the width of our baby�s lesion, a skin graft was used to help cover the opening. Saline was then infused to replace amniotic fluid lost and a specialized stapling device was used to close the uterus and membranes. A pediatric cardiologist monitored the baby throughout the surgery via sterile fetal echo.
I awoke to a hive of activity as I was wheeled into my room. I felt my lower abdomen curl into a ball as one of the nurses barked to another, �Start the mag!� I spent the next 24 hours flat on my back under the influence of magnesium sulfate, which felt like a cross between drunkenness and being run over by a train. Intravenous indocin was also given to relax my uterus and then I took nifedipine every four hours for the remainder of the pregnancy. Partial bed rest was mandated for two weeks and then very limited activity thereafter. My first challenge was to recover from a c-section while the baby grew and kicked inside. The greater feat was to avoid preterm labor for the next 15 weeks. I had contractions daily with several episodes requiring hospital visits; however, my cervix never dilated.
My mom was my support person and she cooked, cleaned, and essentially cared for my every need. I spent my three months catching up with friends, reading, and shopping for all things baby. I lived for my weekly ultrasound visits�they brought me back to why I had pushed the pause button on my life for the summer. Beyond the normal fetal well-being, the ultrasound searched for the two recurrent themes present in spina bifida babies: decreased leg movement and hydrocephalus. We were elated that every ultrasound showed good leg movement. The ventricle size was more concerning. Because the hydrocephalus continued to increase, the decision was made to deliver at 34 weeks so a VP shunt could be placed.
James Charles O�Brien IV was delivered August 27, 2008. He had an intact back, vigorous lower extremities, and a strong cry. His bladder was deemed normal, so there was no need for catheterizations. He will likely walk, though possibly with braces or shoe inserts. He did not, after all, need immediate shunting; however, serial head ultrasounds led to VP shunt placement at four months of age. He had been through life-altering surgery before he even saw the world.
Coping with the diagnosis of a debilitating birth defect gave me new empathy for parents of children with special needs. I know well the extra time, effort, and attention each day brings in caring for such a child. The burden of extra worry that chronic illness elicits is now very familiar to me. As a patient, the MOMS trial enabled me to appreciate the anxiety, inconvenience, and pain that surround surgery. I understand the psychological toll that physical limitations and forced dependence on others can take. As a result, I can better tailor words of comfort to my patients and their parents who may be in similar situations. Ultimately, my experience with MOMS afforded me the opportunity to be a patient as well as a mom, and as a result, a better pediatrician.
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Considering An Exit Strategy�.
By Kenneth Gow, MD, FAAP
When you start your first job out of training, no one tells you that this may not be the job you�ll retire from. Everyone starts off optimistically and believes that all professional dreams will be realized in that first job. However, while this would be the ideal scenario, life predictably presents challenges and swerves that complicate the professional path. It is these challenges that I would like to reflect upon for young trainees starting that first position.
I started out hoping, of course, that my first job was my dream job; I was productive, with lots of papers to show for it, and had a busy practice. Most importantly, my family was happy. So what on earth would make someone rethink a seemingly ideal job like this? I certainly was cognizant that there is no �perfect� job, so you would think that I should have and could have been content. However, as I reflected on my job satisfaction, I discerned there were some aspects of my practice that sometimes just didn�t quite �feel right.� Recognizing this small and unquantifiable yet persistent disconnect eventually prompted me to continue my professional path at a different venue, where I happily discovered a niche that was more complete and satisfying. For many people, indeed, there might well be something compelling enough to generate a re-evaluation of a current and otherwise satisfying job.
My suggestion is to take the time and energy to delineate all the qualities that are important to you in your career path, regardless of how large or small. This list could include everything from research opportunities and support to proximity of your workplace to home. This professional �framework� should be easily accessible so that you can review it regularly during your career. The best time, perhaps, to see if your goals are being met would be prior to annual reviews with your department chair or senior partners. These key goals will serve to guide your professional journey and be your touchstone for analyzing where you are, whom you are with, and the ongoing events and climate of your position. If your goals appear unattainable because you have whispering doubts or major concerns, you should truly take a moment to consider whether this would be the right juncture to make a change. Obviously, such decisions should not be done hastily.
Look, for example, at whether your current position can be altered or enhanced in some way to allow you to reach your goals. In most instances, staying at your current position will certainly make the most sense. Remember that changing positions entails a whole host of hurdles: closing a practice; obtaining new licenses if you change states; new hospital credentialing; learning the ropes and culture at a new hospital; and reestablishing your practice. If you are at all able to achieve your goals by merely adjusting components of your current practice, by all means, that is an easier fix than moving.
However, there might well be a time when despite adjustments to your current position, you realize that your goals are not being met in some salient way. Before taking any action, I would suggest you discuss this with a close confidant, such as a mentor or a colleague at another institution. If your confidant feels that you have run into a �wall� in your job, it would be reasonable to start entertaining other jobs. But again, before you pursue other positions, you should define all aspects of your career that are not currently being fulfilled and ensure that the potential �other� job can successfully address these. Despite attractive new options, there may, of course, also be �deal breakers� that force a further search.
A note to the wise: tread carefully since pursuing a job while still employed may pose unique challenges. You may want your first contacts to be away from your work place by using personal e-mail addresses, home phones or personal cell phones, or at a national meeting. While this seems secretive, it can be wise and considerate to consider the ramifications of openly pursuing a job search while employed.
As you embark on interviews, keep keenly in mind that each position is comprised of its own unique set of characteristics. Unless you happen to have trained at a facility, you will likely not know the true �lay of the land� until you are actually experiencing that environment. Interviews are part and parcel to the recruitment process, so if you have colleagues at the venue you are considering, be sure to seek insight from them.
After the first or second interview, you will know whether or not the new job is a viable option. If so, you need to discuss with your family the ramifications of a move. If you have children, sometimes you can mesh with the end of a school year or with a graduation and change of schools. If your spouse works, you will need to determine if he/she is willing and able to move, and whether your new job will be able to assist your spouse in finding a job as well. A move that enhances your satisfaction and career path may or may not be in sync with your family�s commitments and attachments. Communication and consideration are key, and seldom is a move a simple process.
If you have made the decision to move, do hold your announcement until the contract is signed since you need a guaranteed landing spot before you leap. You also want to avoid burning bridges, of course, and continue a collegial relationship with your old place of work. Inform your direct superior first to keep them from finding out from the rumor mill. Be clear about your decision process, stay matter-of-fact and avoid venting or blame. Express your gratitude for the opportunities that you have been offered, and stay positive.
After your announcement, expect to receive a range of reactions: some people will be truly sorry to see you leave, but there may be some who might even breathe a sigh of relief. Regardless of the reactions, it is important to be gracious as you exit. The way you leave will be remembered. A few ill-chosen words may dismantle the professional relationships you have worked hard to nurture. Medical communities are small, and reputations can change on a dime.
Now, this letter is not intended for everyone. If life has unfolded as you had hoped, and your first job is providing everything you have dreamed of, certainly disregard all the above. You have achieved what everyone seeks; enjoy your good fortune! However, if you are considering moving on, I would suggest taking a measured approach. Choose confidants carefully. Make decisions with input from everyone. And last but not least, look inward before you look onward�
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Have You Thought of Public Health as a Career?
By Jacqueline Doug�, MD, MPH, FAAP
Deputy Health Officer
Frederick County Health Department
It has taken me a while and a few jobs to figure out what I want to do with my career. I have decided that public health is the field for me and I am looking to recruit a few young pediatricians to consider the same. I think most of you will find that you know more about public health than you thought.
In 1999, the Centers for Disease Control (CDC) listed what it considered to be the ten greatest achievements in the field of public health.1 Included in this list were vaccinations, motor-vehicle safety, and healthier mothers and babies. Advances in these areas have led to the elimination of diseases such as smallpox. Children are safer now that most states have passed child car seat restraint laws. In addition, infant and maternal mortality have improved over the past few decades. However there is, of course, still work to be done. Despite the challenges, achievements in public health have saved millions of lives, and many have been championed by pediatricians.
When I was starting out as a physician, my involvement with the American Academy of Pediatrics showed me many ways that pediatricians are involved with public health. When I was a member of the AAP/New Jersey Chapter, I was involved with the Governmental Affairs Committee. I testified at the State Capitol about immunization issues and spoke at a rally about the ill effects of handguns on children. I also volunteered to speak to teen mothers about parenting. In practice, I spoke with adolescents about safe sex practices and the prevention of sexually transmitted infections. In addition, I applied for a few AAP Community Access to Child Health grants (CATCH). I was not successful in my first attempts but with practice came success. I have been awarded two CATCH grants since 2007.
So how did I enter my public health career? I opted to go back to school to obtain my Masters of Public Health Degree. I know you�re thinking, �Was she crazy?� My family thought so also, but despite their questions, my husband and children were very supportive. I worked part-time, took a pay cut, took online classes and finished my degree in two years. While attending school, I worked with the career services department at my graduate school to draft an effective curriculum vitae. I began sending it out before I had even completed my coursework. The persistence paid off when I was asked to interview for and received the job I currently have. In order to take the job, my family and I needed to relocate, but we think it was worth it. I am happier and more satisfied than I could have ever imagined. The salary is very comparable to private practice and the job hours are conducive to having a family. It is also challenging and offers diversity of experience. I use my pediatric training almost everyday when I am dealing with communicable diseases, school health, oral health, chronic diseases or clinics. I have tried very hard to maintain my skills as a pediatrician despite not practicing in the typical setting.
I currently work at the Frederick County Health Department in Frederick, Maryland as the Deputy Health Officer. I have both clinical and administrative job duties. As an administrator, I am a Director and have a staff of approximately 16 people. My division consists of the Women Infants and Children�s Program (WIC), Injury Prevention, and Nutrition and Health Education. The division will be growing soon; our health department will be establishing its first school based health center, of which I will be the program director. As a clinician, I work in the Tuberculosis and Refugee Health Program, STD clinics and Chronic Disease Clinic. I am also the medical consultant for the Communicable Disease Division and School Health. In addition, I also fill in for my boss, the Health Officer, when she is out.
When I say have a challenging and diverse job, I mean it. But I enjoy my work it and am passionate about it. In this role, I have had many successes such as starting a community coalition to address childhood obesity, helping to create a school based health center, and helping to start a dental fluoride varnish program for children enrolled in WIC and Head Start. There have been challenges, of course, but I have found ways to overcome them through collaborations with local agencies and pediatricians.
Calling all eligible pediatricians
�The U.S. faces a future public health workforce crisis, and the current public health workforce is inadequate to meet the health needs of the U.S. and global population.�2 The upcoming workforce shortage brings opportunities for pediatricians interested in entering the field of public health. We can contribute in areas in which our pediatric knowledge and expertise will be essential. Emerging issues of importance are disaster preparedness, terrorist threats, new and emerging infectious diseases, new vaccines, and chronic diseases such as heart disease, cancer, and diabetes.3 Pediatricians are also needed to champion the issues of injury prevention, child development, mental health, health care access, health equity, environmental health, health policy and social justice.
In an article by Jeffrey Goldhagen, MD, MPH, he highlights achievements made for children�s health through an integration of pediatrics and public health.4 The author discusses the need for and importance of pediatricians in this field. We are and have been advocates for children�s health and well-being. Thus our joining the public health ranks ensures that there will be more experts and advocates for children�s health in the future.
There are already many pediatricians in public heath at the local, state and federal levels. I hope that I have convinced a few of you to also check out what this field has to offer. If you are looking forward to a challenging experience and the opportunity to make a difference on a population level then this may be the line of work for you.
I am available if you have questions or want to learn more about public health as a career. You can contact me via e-mail at jdouge@fredco-md.net or phone 301-600-3103. If there are enough of us, perhaps one day we can join together as become a sub-committee of the AAP and become an even more powerful voice for children.
Resources
1. Centers for Disease Control. Ten Great Public Health Achievements-United States, 1900-1999. MMWR 1999; 48(12); 241-243
http://www.cdc.gov/mmwr/preview/mmwrhtml/00056796.htm Retrieved December 22, 2008
2. ASPH. Confronting the Public Health Workforce Crisis: ASPH Statement On The Public Health Workforce. http://www.asph.org/UserFiles/PHWFShortage0208.pdf. Retrieved December 22, 2008
3. APHA. Krisberg, Kim. U.S. Public Health Workforce Shortage In Need of Attention: APHA releases New Brief on Workforce. The Nation�s Health November 2008.
4. Goldhagen J. Intergrating Pediatrics and Public Health. Pediatrics 2005;115;1202-1208
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So You Have an Idea�the Path from Insight to Invention
By Amy Baxter, MD, FAAP
My residency director was Michael Farrell, MD, inventor of the Farrell Bag. A gastroenterologist, he came up with the little baggie that hooks up to tube feed apparatus so that lack of peristalsis wouldn�t make a mess all over the hospital floor. All of us marveled that a baggie could become a patented invention, and privately speculated about how lucrative such a ubiquitous product must be. Of course, we also thought, �If you�re so rich, how come you�re still being our director and not on a beach drinking pink things with little umbrellas?�
I still don�t know the answer to that, but shortly after fellowship I came up with an idea that is only just now (6 years later) about to go on the market. Knowing about my double life as an inventor, many colleagues have come up shyly admitting to their own brilliant ideas. How do you get it made? How do you keep people from stealing your idea? This is some of what I�ve learned about how to take an idea to market, and what an insane amount of work it is.
My son Max never had problems with shots as an infant. Then, at his 4-year-old visit, he handled the barrage of inoculations well enough but upon leaving the office promptly vomited from the stress. I was doing research with topical anesthetics at the time and cursed myself for not treating him before the visit. When I did place anesthetic cream for a subsequent visit, the nurse administering the injections perversely aimed away from the numb area commenting, �That stuff doesn�t work anyway.� Furious, I started trying to figure out how to outwit the nursing staff for next time.
I wanted something I could bring and use without having to disrupt office flow or risk the nurses� wrath. My three young children gave me a lot of experimentation opportunities. I started researching sharp pain, trying to figure how to replicate natural pain relief sensations. Putting a burned hand under running water makes it feel better�how can I use that? After many fruitless, wet disasters, it occurred to me that vibration was sort of like the feeling of running water. Besides, the gate control theory of pain dictates that rubbing a bumped elbow or shaking a smashed finger dulls the pain�thus vibration should work!
Well, initially it didn�t work so well. I tried a pocket massager on the kids, but poking them with a Wardenburg wheel still hurt. Inspired, my husband brought me frozen peas to put under the vibrator. Bingo! I could press hard enough to leave marks and they felt nothing. �Buzzy� was born.
Now the real work started�
- Quick How To: Johnson and Johnson�s Ethicon division has an inventor portal, a place where you register and put in your idea. There is a LOT of useful information on the site, including links to the patent office. Much of the site synopsizes The Inventor�s Bible: How to Market and License Your Brilliant Ideas. Docie, Ron Louis Sr. Berkeley: Ten Speed Press. 2001. If they like it, they pay you something or some percentage; you are pretty much protected that they won't/can't steal your idea. If you get no interest, perhaps it wasn�t all that brilliant, or you�re a misunderstood underestimated genius.
- Intellectual Property (IP): If you make a discovery during paid research time, your university has rights. You are entitled to a cut if your university patents, develops, and markets the product, or they may release the rights to you. After reading your institution�s policy to see if your idea qualifies, disclose your invention to the university IP office. They may put you in touch with an engineering branch of the school for further development. Google the Bayh-Dole Act for more on university IP.
- Documentation: Document everything in an old-fashioned composition �science notebook�. These have the pages sewn in, so if someone were to remove one it would show. Have everyone present at inventing or discussing sessions sign and date any ideas.
- Patents: Medical Device patents cost between $6,000 and $40,000 or more. Before wasting your money you can search patents online to see if someone else was ever as creative as you. I suggest that you agree on a firm filing price up front, knowing that after the office issues an �action� your legal firm will need to charge more when they respond. I filed in 2006, the patent �published� in April 2008 but it�s likely pending for another two years.
- Non-Disclosure Agreements: Do not publish, advertise, or in any way make public anything before you have submitted a patent. This includes submitting research. In the United States, any public mention one year or more before submission renders a product public domain and not patentable. For international patents, you must file before ANY public mention is made. To protect yourself, anyone you talk to about your invention should sign a �Non-disclosure agreement�, or NDA. Seriously.
- Trademarks: can�t be filed until the product is �in commerce�, i.e. shipping to a customer. They�re easy and cheap to do online yourself, or run $1,000 with a patent attorney.
Some time after filing a patent for the concept and before actually having something I could use, I started trying to make an actual product. My neighbors donated used cell phones which my children smashed and we harvested the vibrators. I put two little �coin vibrators� into the case of a cell phone, wired them to a switch I bought surplus online, and put yellow and black electrical tape around it. My husband drew a cute bee face on foam, and I attached cold cubes with elastic cord hot glued in place. When my daughter tried �Buzzy� versus a topical cream, Buzzy won handily with a �one hurty-face� on a scale of 0-6.
Now, how exactly do you massproduce and test a pain device made of smashed cell phones, electrical tape and hot glue? Design work can be done for hire. These firms (the biggest compete for Business Week Annual Design Awards) can be found in any major city. We got lucky enough to find Formation Design in Atlanta, brilliant fun engineers who were well connected to packaging, manufacturing, marketing, and lawyers. They took the concept of a different face for adolescents to heart, and �Buzz Dudes� were born, savvy decals to decrease needle pain in kids too cool for a little bee buddy.
We made prototypes using the computer design in a �stereolithography� (SLA) rapid prototyping machine. Lasers zap a vat of resin that coagulates into a hard prototype layer by layer. So cool! I submitted a trial through our IRB and tested the prototypes versus cold spray on adult volunteers, the results of which are being published this year in Clinical Journal of Pain.
Funding for researching your product can be through foundations, investors, or through the NIH. We applied for a grant from the Mayday Fund, a nonprofit which supports pain research. With this we were able to test a nicer, smaller prototype for IV sticks in children in the emergency department.
A program called the Small Business Innovation Research (if you make your own for-profit firm) or the STTR (if you stay within an academic structure) provides funding for proof of concept (Phase I) and for full product development research (Phase II/III). There is a lot of paperwork to qualify, but for me, after three applications which each took roughly two months of work (before and after my day doctor job) we were awarded about $960,000 to test Buzzy for pediatric immunizations in 2009.
FDA registration happens one month before you start selling. Way before that, you find whether your device is Class I exempt, or resembles a �predicate device� that existed before in which case one files a �510K� describing exactly how your device is just like something else which has been tested and is approved. Classification information is also online.
Once you make it to the marketing phases, web design can be as sophisticated or simple as you want, but you�ll have to fund this completely on your own. We are lucky to have a brilliant friend who is philosophically committed to Buzzy. We knew we wanted to create a web site that would provide information to help anyone deal with procedural pain rather than just try to sell Buzzy, so I wrote a lot of content and she helped get it online. Web sites cost about $10, but hosting them well runs about $300. We liked �Site Build It�, and picked http://www.needle-pain-management.com/index.html as our site name. (All the good �Buzzy� variants were taken, and web crawlers like hyphens.)
Finally, in December 2008, I got the first plastic lead-free cutie pie Buzzy staring back at me from a package. To use it you apply an ice pack over the site for the needlestick, put Buzzy on the skin above the site for a few seconds, and leave it vibrating in place during the poke. Voila! My friend�s son used it and felt no pain for a flu shot. Another friend�s child with new onset diabetes used Buzzy all the time at first, though it seems now just knowing she can dull the pain makes her not need it as often. Yesterday I sold the first one to my hospital so they can use it for the phlebotomy team that stalks the corridors at 0500, far before pain advocates are awake and insisting on anesthetics. I still can�t completely get rid of infants� pain, which nags at me, and it�s more cumbersome than I�d like. Still, the fact that an idea grew into something that actually works is hugely satisfying.
Groping forward in the dark with no illumination, I felt ready to fall or be taken advantage of at every step. Looking back, the path options were more numerous and the pitfalls less deep than I felt they were at the time. There have been many people happy to help along the way, and I�m hopeful that sometime soon I may even have time to go get a pink drink with an umbrella!
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| Clinical Experience and Pearls |
Medications for Migraine
By Andrew McIntosh, MD
As a pediatric neurologist with a busy outpatient practice, children suffering from headaches make up about a third of my office visits. Recurrent headaches can be disabling for children. Headaches are the third most common cause of school absenteeism and often result in limitation of sports and other extracurricular activities. Migraine is the most common primary headache syndrome. A comprehensive program to treat migraines may include lifestyle changes with trigger identification and avoidance, medications, complementary and alternative medicine treatments, and strong family/mental health support.
Generally by the time families end up in my office, some effort at lifestyle changes with headache trigger identification and avoidance strategies have been attempted. When families come to see me, I always spend some time educating them and reinforcing adequate lifestyle changes before launching into a discussion of pharmacotherapy. I put together some valuable resources for families including common headache triggers/food triggers and a headache diary available on our web site at http://www.mcintoshneurology.com.
Medications for the management of migraines can be divided into four classes: symptomatic, abortive, preventative/prophylactic and rescue medications. There are several medications within each class. Tailoring an individualized treatment plan is an essential component of an overall management strategy which should be formulated by a professional comfortable with each class of medications.
Symptomatic, abortive and rescue medications are used during an acute migraine attack. Symptomatic treatments are basic over-the-counter analgesics such as ibuprofen, naproxen, and acetaminophen (�headache medicines�) which �dull� headache pain. If aggressive symptomatic treatment is used early on in the course of the acute migraine, there may be very good control of the headache. Unfortunately, even with good headache relief, many migraineurs report having continued challenges with the �washed out� period that follows the pain relief (difficulty concentrating, fatigue and poor academic performance). Also, overuse of analgesics may result in rebound and/or chronic daily headache.
After their introduction in the early 1990s, new migraine-abortive triptan medications revolutionized migraine treatment and were considered a �miracle drug� for many migraineurs. Triptan medications such as: sumatriptan (Imitrex, Imigran), rizatriptan (Maxalt), naratriptan (Amerge, Naramig), zolmitriptan (Zomig), and others have demonstrated about 60 to 80% effectiveness in providing complete relief within two hours. Additionally, triptan medications help prevent the �washed out� period that follows pain relief. Triptan medications are usually reserved for situations when lifestyle changes and symptomatic treatments have failed to provide adequate relief. Like symptomatic treatments, triptan medications work best when taken very early on in the course of the migraine. Recently, a combination sumatriptan/naproxen medication was released which emphasizes the point that using a triptan medication should not be delayed until symptomatic treatment has been attempted and failed during an acute migraine. Overall, triptan medications are well-tolerated. Special precautions need to be observed when taken with other classes of medication, especially selective serotonin reuptake inhibitors (SSRI�s).
Some general indications for considering the use of a preventative/prophylactic medication include: two or more prolonged and debilitating headaches per month, use of abortive medications more than twice a week and uncommon migraine conditions/migraine variants. Serendipitously discovered medications from a variety of diverse pharmacological classes are used for migraine prevention. Some examples are: anticonvulsants such as topirimate (Topamax), valproic acid (Depakote) and gabapentin (Neurontin); beta-blockers such as propranolol (Inderal) and timolol; tricyclic antidepressants such as amitriptyline and nortriptyline; and other medications including SSRI medications, lisinopril, and Botox injections. Deciding which preventative medication to use and fine tuning the dosage is where an experienced clinician, often in consultation with a specialist, can have the most impact on improving the quality of life of individuals suffering from recurrent migraines. Generally, the clinical decision-making process involves detailed conversation about medication effectiveness and possible side effects. The presence of comorbid conditions is also an important factor. For example, if I am treating an adolescent with migraines who also has a little bit of a depressed mood, I may consider a trial of amitriptyline (tricyclic antidepressant) rather than propranolol (beta-blocker). Many other factors come into play here including the child�s age, nature of the headaches, and other medications/medical conditions.
Rescue medications are stronger opioid analgesic medications (such as hydrocodone or oxycodone-containing medications and morphine) which should be used very infrequently but can be helpful for severe acute migraines which have failed to respond to symptomatic or abortive treatment. These are the sort of medications which may be prescribed for situations in which the symptoms are so severe that, without immediate relief, a trip to the emergency room would be necessary.
Once a diagnosis of common migraine (migraine without aura) or classic migraine (migraine with aura) has been established, most primary care physicians should be comfortable recommending lifestyle changes with trigger identification/avoidance and starting symptomatic treatment such as ibuprofen, naproxen, and acetaminophen. If this initial course of action fails to adequately control the migraines, a trial of an abortive triptan medication should be initiated. As a general rule, children with recurrent headaches that are not clearly part of a common benign primary headache syndrome (such as migraine, tension or cluster headaches) or that have failed abortive treatment should be referred to a specialist such as a pediatric neurologist. Some of this decision-making depends on the experience and training of the primary care physician and the accessibility to pediatric neurologists in the area.
Fortunately, we live in an era having valuable medication treatment options for migraine. In addition to lifestyle changes with trigger identification/avoidance, complementary and alternative medicine treatments and psychosocial support, medications are an important component of a comprehensive management plan.
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Overcoming E-mail Phobia
By Michael Martin, MD, FAAP
After only a year of starting out in practice, I discovered the disheartening reality that with more patients demanding greater and quicker accessibility to me, I would either not meet their expectations as the savvy health consumers they are, or I would have to simply spend after-hours making multiple phone calls into the evening. Neither solution appealed to me. In March of 2006, I made a simple technological leap of faith and did what many warned against doing � I gave out my e-mail address to patients. In fairness it was a new e-mail account I established for this purpose alone. I had experienced enough of phone tag and apologizing for not returning calls when families wanted. Along the way, I have learned some pearls that will help anyone to a smooth transition to electronic communications.
The earliest gains from e-mail exchange result from its asynchronous nature. No longer do doctor and parent have to be available at the same time to communicate, and no more frustrating phone tag. For parents, there is the direct, personal link to the doctor and the ease of replying to that e-mail when convenient for the doctor, be it between patients or at home. The perception of continuous access to the provider enhances the trust and connection of families to the health caregiver. No longer are you as the doctor inaccessible. Surveyed patients complain about telephone communication because it is difficult reaching any doctor by telephone1. If you doubt this, take note that 80% of parents of pediatric patients asked felt that all pediatricians should use e-mail, and 65% stated they would be more likely to choose a pediatrician based on access by e-mail2.
E-mail communications also make interactions more efficient by allowing a doctor to screen through information parents provide without sacrificing empathy along the way. There is no need to wait for parents to put their thoughts together; they are forced to do so in putting their thoughts onto the computer. You cannot press fast forward as a parent fumbles through verbalizing their concerns in the examination room or on the telephone, but you can read through it more quickly on the computer screen. Even better, you save nurse triage time by removing them from having to answer this phone call.
The hidden jewel of e-mail is the re-establishment of continuity of care. For chronic medical conditions such as ADHD and asthma, I discovered that families are more compliant in following up with an e-mail than returning to the office. While this is not surprising, it has the added advantage of allowing parents and patients to be more detailed as time restraints do not limit an e-mail, but do an appointment. Many times parents and adolescents are more apt to reveal sensitive information than they would have in face-to-face encounters. Parents now ask questions they think of later and I experience fewer clinical data points lost that may impact quality of care. By putting it down in writing, it also provides parents an opportunity to re-think the importance of the question and filter superfluous questions.
The e-mail interaction is a perfect transcript that can be readily added to the chart, unlike the phone call which must be written down and invariably suffers from lost information. Encouragingly, insurers are now beginning to reimburse these interactions with the addition of CPT codes for these specific interactions. Other models of delivering this service have included charging a monthly fee for unlimited e-mails and/or co-pay for e-mail communications.
The road to using e-mail is not without peril. Whenever instituting new technologies or procedures, it is critical to plan and build appropriate expectations for staff and families. Simply �handing out� your e-mail address is destined to fail and disappoint your patient families. First and foremost, you must answer the question of who you will exchange e-mails with. For those in rural areas it may not be feasible to e-mail frequently because of poor access. The families in my practice uniformly have e-mail access and often multiple e-mail accounts. Are you willing to communicate with adolescents should they have questions about their health? Will you communicate with ancillary people involved in the child�s care such as teachers and therapists if the families give permission? Care should never be provided to patients who you have never met or cared for before, whether it is by phone or e-mail. I personally confronted the fact that other providers in my practice did not share my passion for e-mail accessibility to families. I made it clear to all families and staff that only I would be offering this service. The message � do not let colleagues� hesitation bar you from taking advantage of the technology.
The next step is the what. What do you wish to communicate in e-mails? Do you intend to limit e-mail to direct patient care issues, or would you like to incorporate it into channeling billing, scheduling, and nurse triage questions? The e-mails I share with families are limited to patient care issues alone. Lab results, chronic problems, acute problems, preventative or general pediatric questions, and prescriptions are all possible points of discussion that patients may wish to communicate with you. You should set up a policy on which of these you are willing to address with patients and families. All urgent medical questions requiring immediacy should never be communicated via e-mail and a written policy which the patient signs should reflect this. With electronic prescriptions, I have the luxury of checking e-mail on the road and filling prescriptions wherever I may be � of course there are times I decline such requests. For example, if an asthmatic patient has gone through an albuterol prescription faster than expected indicating failure of her controller medication, I may decline the request and ask for the patient to follow-up in the office. While there are few studies on which to generalize, Anand et al. examined pediatric patients only and found that 63% of e-mail exchanges were results of medical issues with the next highest proportion of 16% being refill requests2. This is not all that inconsistent with a Kaiser Permanente study which covered a mix of internists and pediatricians and found 48% of electronic communications related to medication refills and medical questions3.
Now comes the when. When are you willing to communicate? Are weekends fair game? What should be the expectation for patients to receive a return e-mail? I let families know to expect a maximum of 2 business days for me to respond. Truthfully it is rare that I do not return e-mail within one day, even on the weekends, which ultimately is a pleasant surprise to the patients. Most now prefer using this way to communicate with me for this exact reason. Should I be on vacation or unavailable, an automated message is generated to let families immediately know this fact.
One of the larger issues plaguing physicians in moving toward electronic communications, outside of reimbursement, is the concern over security of the information transferred between doctor and patient as well as compliance with the Health and Information Protection Act. Ironically, the federal law does not outlaw the use of conventional e-mail nor does it mandate the use of encryption when sending these communications. I believe a strong argument can be made that regular e-mail is far more secure than the US mail, phone, or fax - all of which most practices use daily. Who is to stop a nosy co-worker from seeing the health information you have faxed to a parent of a patient or protect the mailbox when no one is home to receive your office�s letter? In addition, there are real concerns that using a secure messaging service will inhibit some from using e-mail by making it more difficult to use. As we move toward EMR, security products will already be built into the system which will keep us in line with the recommendations of the American Medical Association and the US Department of Health and Human Services. To date, no legal action has been threatened or taken against a physician related to e-mail security, and it should not keep you and your families from reaping the benefits in the short-term4. Long-term planning however should include secure e-mailing. An EMR system will address this need for my practice.
With less time allotted to visits with patients and the increasing barriers to continuity of medical care, electronic communications provide improved access and more personalized health care. Patients and parents are ready for it, and more importantly want it. Setting the ground rules for its use as well as expectations is critical to success, but it is not as cumbersome a project as you might expect. In the end, my patients are more satisfied, and I am personally happier for providing better care in less time.
WORKS CITED
1. Sittig DF, King S, Hazlehurst BL. A survey of patient-provider e-mail communication: what do patients think? International Journal of Medical Informatics 2001; 61: 71-80.
2. Anand SG, Feldman MJ, Geller DS, Bisbee A, Bauchner H. A content analysis of e-mail communication between primary care providers and parents. Pediatrics 2005; 115: 1283-1288.
3. Sittig DF. Results of a content analysis of electronic messages (e-mail) sent between patients and their physicians. BMC Medical Information Decision Making 2003; 3: 11.
4. Gerstle RS. E-mail communication between pediatricians and their patients. Pediatrics 2004; 114: 317-321.
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Floppy Baby: What�s Your Diagnosis?
By Michele N. Lossius, MD, FAAP; Lisa Kenigsberg, MS4; Adrian Holloway, MD; Alejandro Flores, MD
A 2 month-old African-American male infant is admitted with hypotonia and progressive weakness. He was born at full-term with a weight of 3514 grams to a healthy 38 year-old woman after an unremarkable pregnancy. At 3 weeks of age he began to have decreased right arm movement, with decreased involvement of his other extremities over the next few weeks. At 6 weeks he presented to his pediatrician. On exam he would kick out his legs but did not flex his hips. He was no longer able to raise his head or elevate his arms above his head. Radiographs of his cervical spine and right clavicle and a head ultrasound were normal. Over the next 2 weeks, his weakness continued to progress. At the time of admission, he is no longer able to actively move his arms, and has very minimal movement in his legs. His right arm lay limp at his side. The patient cannot grasp objects placed in his hand and has a weak social smile. The family reports constipation for the past two weeks but denies any cyanosis, feeding difficulties, respiratory changes, seizure activity, fever, trauma, or known ingestions including honey or home canned goods. The family history is negative for genetic, metabolic, and neuromuscular diseases. The patient has a normal newborn screen and mom reports normally active fetal movement in utero.
On physical exam: Temperature is 36.3 C, respiratory rate 28 breaths/min, heart rate 117 beats/min, and oxygen saturation 99% on room air. Weight is 5 kg (25%-50%), height 60cm (75%) and HC is 39cm (25%-50%). The infant has no dysmorphic features. Fontanelles are normal. He lies in a frog-leg position. The exam is remarkable only for the musculoskeletal and neurologic exams. Spontaneous movement is decreased in all extremities. Lower extremities are weaker than upper extremities, with proximal muscles weaker than distal muscle groups. He has head lag, axial slippage, and when held horizontally on his abdomen, his limbs hang loosely at his side. There is no resistance to passive leg extension. There are no contractures. His pupils are equal and reactive to light with grossly normal extra ocular movements. Mild tongue fasciculations are noted. He has a strong suck reflex. His grasp reflex is diminished and weaker on the right side. Deep tendon reflexes are absent in all four extremities. Moro reflex is absent. There is no clonus.
The differential diagnosis of an infant with hypotonia is extensive. Obtaining a detailed history and physical exam is paramount in determining the diagnosis. The first step is to try to classify the lesion as congenital or acquired. Identifying the disease as static or progressive further helps to narrow the differential. Finally, determining whether the physical exam findings are consistent with an upper motor neuron or a lower motor neuron disorder will aid in discerning the diagnosis. Lower motor neuron disorders can then be further classified as pathology within the anterior horn cells, peripheral nerve, neuromuscular junction or the muscle.1,2
Given the above history and physical exam, a congenital, progressive lower motor neuron disease was suspected. However, upper motor neuron and lower motor neuron lesions can both present with hypotonia in a child this young. Thus, the initial differential was most concerning for spinal muscular atrophy (SMA), Pompe disease, hypothyroidism, and congenital muscular dystrophies. We also considered infection, electrolyte abnormalities, myasthenia gravis, botulism, metabolic disease and upper motor neuron lesions such as abnormal brain development and a spinal cord tumor.
Upon admission, a complete blood count, basic metabolic panel, urinalysis, and thyroid studies were drawn and were normal. MRI of the brain and spine were normal. No organisms were isolated from the blood culture or urine culture. Creatinine kinase (CK), which can be elevated in Pompe disease and slightly elevated in SMA or congenital myopathies, was slightly elevated at 185. An electrocardiogram and chest radiograph were performed to evaluate for cardiomegaly, which could indicate Pompe disease. These were both normal. Serum amino acids and urine organic acids were sent to rule out metabolic etiologies. Genotyping for spinal muscular atrophy was sent out to a center for genetic testing. An electromyogram and a nerve conduction study showed electrophysiological evidence of a motor neuron disease or myopathy. A muscle biopsy revealed no morphologic evidence of congenital myopathy or muscular dystrophy. Histopathology demonstrated widespread but ungrouped hypotrophic/atrophic myofibers of both major histochemical types that suggested denervation.
While the medical team awaited the results of the genetic testing for SMA, the patient was closely observed for any signs of respiratory or feeding difficulty. Exams were performed daily to monitor for any progression of his weakness. No significant changes were observed. Throughout his week-long hospital stay, the patient remained stable. He received supportive care and lactulose prn to treat his constipation. The patient�s family was counseled on the possible diagnoses and the importance of follow-up. Several weeks later the genotyping for SMA revealed a homozygous deletion of exon 7 and 8 in the survivor motor neuron (SMN) gene, which is located on chromosome 5. The diagnosis of SMA type I was given due to the patient�s age at onset of symptoms.
Spinal muscular atrophies are a degenerative and progressive disorder of anterior horn cells whose pathogenesis begin in fetal life and continues into childhood.1 They represent the second most common, lethal autosomal recessive disorder other than cystic fibrosis and are the second most common neuromuscular disorder following Duchenne muscular dystrophy.1, 3-6 The incidence of SMA is 1/6000 to 1/25,000 and affects all ethnic groups.2,3,6-8 SMA is the result of continued apoptosis. Apoptosis, in unaffected persons, is responsible for the elimination of surplus motor neuroblasts. The survivor motor neuron gene (SMN) is responsible for the timely arrest of this process. If the gene is affected then physiologic cell death becomes pathologic thus causing neuronal death to continue into fetal life and infancy.1
The International SMA Consortium has classified SMA into three forms: Type I (Werdnig-Hoffman), Type II (intermediate), and Type III (Kugelberg-Welander). The classifications are based on the age of onset, the attainment of developmental milestones, and the age of survival. SMA type I is the most severe form while SMA type III usually has a later onset of symptoms with survival into adulthood. In 1990, linkage analysis mapped SMA to a region of chromosome 5q and further studies showed that all of the three forms of SMA can be mapped to a deletion at the 5q11-13 locus.4. In 98.6% of patients, the SMN gene was interrupted or otherwise missing.3
Type I, or Werdnig-Hoffman, is the most severe form of SMA with weakness, hypotonia and paralysis noted prior to the first 6 months of life. These children fail to meet the milestone of sitting unassisted. Without intervention, death from respiratory failure can be expected by the age of 2 years.7,8 Patients with Werdnig-Hoffman present with hypotonia and a progressive decrease in spontaneous movements. Decreased muscle mass, absent deep tendon reflexes and frequent fasciculation of the tongue, face and jaw muscles are often observed. There is typically no involvement of the extraocular muscles early in the disease process and there is no involvement of the heart.1,9 SMA type I is progressive and there is continued deterioration in function, strength, and respiratory capacity overtime. Thus, eventually these children lose all limb movement as well as the function of facial and eye muscles. Prognosis is worse in children who do not attain head control and are symptomatic prior to three months of age; 50% of these children die by 7-8 months of age.7,9 Long term survival has been documented in children with SMA type I; however, there are frequent co-morbidities and a �locked in syndrome� is described where the patients have no useful movements of their extremities and no ability to communicate.9,10 Zerres et al, in 1995, showed survival probability as: 32% at age 2, 18% at age 4, 8% at age 10, and 0% at age 20. Osokui et al observed that ventilation for more than 16h/day, use of mechanical insufflation-exsufflation, and gastrostomy tube feeding had independent effects on survival and that these factors accounted for the increased survival time noted for children born after 1995 with SMA. However, the ethical debate of such interventions for a disease process without a cure has produced numerous articles.
In conclusion, SMA type I is a predominantly autosomal recessive disorder that affects the anterior horn cells. It is a progressive disease process that results in loss of all limb movement, decreased function in facial and eye muscles, and chronic respiratory insufficiency with ultimate respiratory failure. SMA type I presents before the age of six months and these children never develop the ability to sit unassisted. Survival time has increased with medical advances but this has also created questions regarding quality of life and distribution of health care resources. Further, a number of SMA studies are ongoing and the future holds possibility for not only effective drug therapy but also gene replacement. A particular class of drugs, the histone deacetylase (HDAC) inhibitors, have been shown to increase the level of full-length SMN. The drugs include valproic acid, hydroxyurea, and phenylbutyrate and are currently part of ongoing clinical trials. The development of gene therapy has been more difficult. A recent study packaged the SMN I gene in a vector system that was injected into the muscle of mice. The SMN I gene was then transported into and expressed in spinal motor neurons. However, while promising, this only led to a very short increase in the neuron�s lifespan of 3-5 days. 12
Update: At the time of this article, we are happy to report that the patient is doing well at home. The patient has been readmitted for respiratory distress on two occasions � once for pneumonia and once for RSV bronchiolitis. Thus, bipap is used for 12 hours at night and as well as insufflator/exsufflator therapy twice a day. In addition, the patient is g-tube dependent for nutrition. The family is actively involved and doing well.
References:
- Sarnat HB. Disorders of Neuromuscular Transmission and of Motor Neurons. In: Behrman RE, Kliegman RM, Jenson HB, eds. Nelson Textbook of Pediatrics 17th ed. Philadelphia, PA: Saunders; 2004:2075-2076.
- Wolf H. Hypotonia and Weakness. In: Zaoutis LB, Chiang VW, eds. Comprehensive Pediatric Hospital Medicine 1st ed. Philadelphia, PA: Mosby; 2007:807-814.
- Burlet P, B�rglen L, Clermont O, Lefebvre S, Viollet L, Munnich A, Melki J. Large scale deletions of the 5q13 region are specific to Werdnig-Hoffmann disease. J Med Genet. 1996 Apr; 33(4):281-3.
- Brzustowicz LM, Lehner T, Castilla LH, Penchaszadeh GK, Wilhelmsen KC, Daniels R, Davies KE, Leppert M, Ziter F, Wood D, et al. Genetic mapping of chronic childhood-onset spinal muscular atrophy to chromosome 5q11.2-13.3. Nature. 1990 Apr 5;344(6266):540-1
- Gilliam TC, Brzustowicz LM, Castilla LH, Lehner T, Penchaszadeh GK, Daniels RJ, Byth BC, Knowles J, Hislop JE, Shapira Y, et al. Genetic homogeneity between acute and chronic forms of spinal muscular atrophy. Nature. 1990 Jun 28; 345(6278):823-5.
- Prior TW. Spinal Muscular Atrophy Diagnostics. J Child Neurol. 2007 Aug;22(8):952-6
- Oskoui M, Levy G, Garland CJ, Gray JM, O'Hagen J, De Vivo DC, Kaufmann P. The changing natural history of spinal muscular atrophy type 1. Neurology. 2007 Nov 13; 69(20):1931-6.
- Ryan MM. The use of invasive ventilation is appropriate in children with genetically proven spinal muscular atrophy type 1: the motion against. Paediatr Respir Rev. 2008 Mar;9(1):51-4
- Bach JR. The use of mechanical ventilation is appropriate in children with genetically proven spinal muscular atrophy type 1: the motion for. Paediatr Respir Rev. 2008 Mar;9(1):45-50
- Zerres K, Rudnik-Sch�neborn S. Natural history in proximal spinal muscular atrophy. Clinical analysis of 445 patients and suggestions for a modification of existing classifications. Arch Neurol. 1995 May; 52(5):518-23.
- C. Sumner. Therapeutics Development for Spinal Muscular Atrophy. NeuroRX . 2006 April; 3(2): 235 � 245.
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Saving on Medical Supplies with eBay
By Seth Toback, MD, FAAP
No matter where you practice or how efficiently your office is run, pediatricians all share one thing in common: the rising cost of everything!
Controlling escalating overhead costs with savings on everything from office supplies to medical equipment can be found somewhere you may never have thought to look�eBay. Yes, that�s right; I said eBay. For those of you who are only casually aware of eBay, thoughts of last years iPod model or vintage Cabbage Patch dolls might come to mind, but those practitioners who have been bold enough to look know of the treasure trove of bargains waiting to be found. If you are unacquainted with eBay, hopefully this article will inspire you to expand your online buying and bidding skills.
In a nutshell, eBay is a web site that puts buyers and sellers in a virtual store and lets them safely conduct business transactions within a structured environment. eBay has been described as America�s garage sale, and to some extent this is true. You may find a medical student selling his very expensive otoscope after matching in surgery, or a retiring physician liquidating all the tangible objects from his practice. Yet, eBay is also a market place for new as well as used merchandise with incredibly diverse selections, from tongue depressors to defibrillators.
eBay 101
Anyone with an e-mail address can register to shop at eBay. It is fast and it is free. Once registered, shopping is as easy as typing a description of what you want into the search area. Entering �reflex hammer� may deliver a nice selection of 20 relevant items to choose from. A more vague or common search item such as �mask� may give you 16,000 items to choose from, most of which are non-medical. Narrowing your search is accomplished by either typing in something more specific, such as �Laerdal pocket CPR mask�, or clicking on subcategories on the left of the screen. In this example, �Health and Beauty� pares your search down to 2200 items. Clicking on the sub-category �Healthcare� further narrows the results to 120 items, and the sub-category �First Aid� results in a nice selection of CPR and manual resuscitator masks.
Eww�used CPR Mask
Now, I know what you�re thinking, �Who in their right mind would buy such an item?� Of course, no self-respecting pediatrician who believes in the advice about cleanliness handed down to us by Dr. Ignatz Semmelweis would do such a thing. This is where the keen eye of the bargain shopper comes in. To ensure that the item is new, look carefully at the item�s description for phrases like �new in box�, �sealed in original packaging�, �never opened� or �in factory sealed container�. Often an attached photograph of the item can go a long way to convince you that the item is new. Along these lines, look very carefully at posted expiration dates if what you are shopping for has a shelf life. If the date is suspiciously lacking or the seller does not provide a photograph of the item, either e-mail the seller and ask him to provide additional information or stay away.
$2 for a purple FluMist freezer box going once�
Now that you are ready to bid, you should be aware of just a few things. For those who find no joy in the thrill of bidding at an auction, many items can be purchased right away for a set price that the seller is willing to let the item go for. Such an item will be listed with a starting bid price and the �buy it now� price. The starting bid price for an item is the minimal amount of money the seller is willing to accept for the item. In some cases the starting bid price might be exceptionally low, such as $0.99 for an antique leather physician�s bag. Such a seller may be using this low starting bid to attract more bidders and the low price may not necessarily reflect a low quality item. This seller may also have set what is called a �reserve� price. This is the price the bidding must reach in order for the item to be made available to the bidder, a kind of financial safety net that protects the seller from losing money on the deal. For the very cautious out there, you can even place an item in your �watch� list to see the final price an item sells for. eBay will also send you e-mail updates when you have been outbid and when the auction is coming to a close.
Who can you trust?
Granted, buying anything on eBay requires taking a little leap of faith, but here are a few tips to finding a trustworthy seller. Much can be learned about the seller from their name and their experience at selling. All sellers have a screen name called a member ID, which can reveal something about who they are. A name like �Allmeds4less� might be the name chosen by a wholesale dealer of medical supplies or an eBay entrepreneur who deals in medical equipment. Listed next to the member ID is the number of items they have sold on eBay. Thus, someone with the name �Medstuffcheap� with 2500 sales might be more trustworthy than say �Bubba241� with only 3 sales. More information can be gleamed by reading specific feedback that previous buyers have left about that seller. This information is easily accessible and may aid in your decision-making process. Excellent sellers should have close to 100% positive comments in their feedback section. Lastly, don�t buy anything that you know requires a medical license to obtain.
My experience with shopping on eBay for my office has been quite rewarding. Personally, I have sold items such as my medical school otoscope and our office�s unused intubation kit. On the buying side, here are just a few examples of the bargains I have found:
Welch Allyn pocket otoscope/ophthalmoscope set for $180 (retail $460)
Welch Allyn ophthalmoscope head for $110 (retail $220)
Dermabond tissue adhesive (box of 12) for $90 (retail $300)
Trauma scissors for $1.29/pr (retail $7/pr)
Littman Cardiology III stethoscope for $ 105 (retail $175)
Nellcor Handheld pulse oximeter (used) for $330 (retail $595)
My office has an eBay account where we keep our corporate credit card on file. Thus far I have been extremely satisfied with all my purchases. Our supplies have been of high quality and are typically shipped as fast or faster than most conventional medical suppliers. Do keep in mind that merchandise selection on eBay is sporadic, so if your office requires 2,000 cotton balls every month, perhaps you should look elsewhere when shopping for this item. eBay is also a fantastic way to start your office spring cleaning. Which reminds me� if anyone is looking for a well-loved used spirometer, look me up, my member ID is �Seth71�.
For more tips on buying and selling on eBay I suggest looking at eBay for Dummies by Marsha Collier.
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COME TO PHOENIX! The Workshop on Perinatal Practice Strategies needs YOU!
By Mark C Mammel MD, FAAP
Everyone looks for valuable and interesting ways to get those CME credits. There are seemingly endless meetings, talks, and online presentations you could pick. I want to take a few column inches to introduce you to a meeting you may not know about. Better yet, it�s sponsored by the AAP Section on Perinatal Pediatrics, and like all AAP educational activities, the content and presenters have to meet a high standard to be chosen by the Academy. So, what is it? I�m talking about the annual Workshop on Perinatal Practice Strategies, to be held in Phoenix, Arizona, April 3-5, 2009. Who am I? My name is Mark Mammel, and I�m a 50-something neonatologist who is also the program chair for this meeting. I�m writing to your group because, even though young pediatricians are the future, not enough of you have �found� us yet!
Why this meeting? If you�re a neonatologist or a pediatrician with a large newborn practice, you have undoubtedly seen that it�s easy to find meetings presenting the latest research, or reviews on patient management, or special meetings on the tiny baby. This meeting is none of those. What we do is unique among all the neonatal meetings out there: we discuss how to get the job done, not how to do the job. By this I mean that the meeting is designed specifically to address issues around the development, maintenance, and mechanics of practice management. We do have presentations covering specific issues in patient care, but we examine those issues in the context of how care varies among practices, or how we decide what therapy to use, or why we persist with practices that are not evidence-based, etc.
This meeting was founded by Joe Butterfield, MD, a pioneering neonatologist from Denver. Joe was one of the first to see the need for regionalization of care, for better communication among neonatologists, and Joe also firmly believed that you couldn�t have too many friends. He also thought friends should spend time talking together regularly about how they manage the stresses and complexities of an intensive care practice. He picked Phoenix/Scottsdale as a venue because it�s a good place to go, especially after a long winter. Joe died in 1999, but his spirit lives on in Phoenix. If you�ve never heard of Joe, take a look at the Journal of Perinatology, volume 19 #3, March/April 1999.
This year�s theme is �The Light Bulb Moment: Embedding Innovation in Practice.� Beginning on Friday, we start with a popular and important part of the meeting: a special seminar on neonatal coding practices, given annually by Drs. Gil Martin and Rich Molteni. During this morning session, Gil and Rich discuss how to properly use the neonatal codes through case examples. With extensive audience participation, this is always a popular and fun �master� course on coding. We introduce our theme Friday afternoon with the Butterfield Lecture, given by this year�s Apgar Award winner, John Kattwinkel, MD. The theme will be explored further during the afternoon. On Friday evening there is a reception sponsored by Abbott Nutrition, where we all greet old friends and meet new ones. Saturday morning is filled with workshops designed to get meeting participants directly interacting with meeting faculty. On Saturday, there will also be a presentation by Dr. Carl Bose, Chair of the Section on Perinatal Pediatrics Executive Committee, covering section activities and programs. The afternoon is free - all work and no play, you know. On Sunday morning we have a more clinical focus, with discussions on two aspects of continuing practice - the new approach to maintenance of certification, and the transition from active practice to retirement. While your group is looking down the long road of career and life, it still can�t hurt to look ahead. You will also meet the Committee on Fetus and Newborn (COFN), who will discuss current statements and commentaries in progress, answer questions and take suggestions from the audience. We wrap up by noon on Sunday and fly off home.
This meeting is fundamentally about developing and expanding the leadership qualities we all need for success in our practices, whether we are division heads, senior partners, nursery directors, or new practice members. For physicians early in their career, it may not be obvious why a meeting like this one should claim some of your precious time and some of those CME dollars we all watch so carefully. I can only say- come and see. I think you�ll be surprised, and you may even end up joining the many regulars that have made this a part of their yearly calendar. To learn more about the course, visit www.pedialink.org/cmefinder. Registration can be done online as well. And, if you need more persuasion, I�d be happy to tell you more! Feel free to contact me directly at mamme001@umn.edu.
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Practice Management Online!
A Centralized, Online Practice Management Resource for Pediatricians
In many ways, pediatric practices are in a state of economic crisis in a rapidly changing healthcare environment. From vaccine payment and supply issues to competition from large-scale retail-based clinics, pediatric practices both large and small are facing many business issues and constraints. In order to provide high quality care and to survive in today�s healthcare environment, pediatricians and their office staff must:
- Stay abreast of important business and practice management aspects of a pediatric medical practice in the same way they stay current on medical/clinical information.
- Ensure the stability and potential for growth of pediatric practice through rapidly changing times � mergers and acquisitions of hospitals and clinics, consumer-driven health plans, performance-based payment, increased regulations, and increasing overhead and shrinking margins.
- Have a system in place to quickly integrate new practice concepts and knowledge into the standard processes of the practice.
- Have practical, easily accessible, business and practice management information available when it is needed.
Historically there has been little or no preparation in residency programs for the business aspects of practice. And many AAP members know very little about the extensive collection of pediatric-specific practice management resources that the AAP has developed to assist pediatricians with managing a practice that provides high quality care and is financially viable. As a result, the AAP leadership responded to this problem by approving the development of Practice Management Online (PMO). PMO is an online resource for pediatricians and their office staff to support them in running a practice that is fiscally sound, efficient, and provides quality health care to children and families. PMO consists of 5 modules: Practice Basics, Payment & Finance, Office Operations, Quality Improvement, and Patient Management. These key areas are useful for all pediatricians and their office staff, but particularly helpful to those pediatricians who are just beginning in practice, taking over management activities, or to those who are opening a new practice. Members from the Section on Administration and Practice Management (SOAPM) often contribute content and resources.
PMO houses nearly 1,200 resources, including newsletters, manuals, fact sheets, peer discussions, sample office forms and documents, and more. PMO provides a simple word search function and brief, descriptive annotations for each document to make it easy for pediatricians to find the information they need.
PMO is available free to all AAP members! The site is accessible through the �button� on the AAP Member Center or directly at http://practice.aap.org. To sign up for monthly updates, visit http://practice.aap.org/emailAlert.aspx. Additional enhancements such as short video lectures, additions to the Starting in Practice Handbook and disaster preparedness tools are expected in 2009.
For additional information, contact Trisha Calabrese at tcalabrese@aap.org.
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