| Bone Mineral Density (BMD) in Myelomeningocele
Lee S. Segal, MD Professor of Orthopaedics and Pediatrics The Department of Orthopaedics and Rehabilitation The Pennsylvania State University College of Medicine It is well known that motor and sensory deficits in myelomeningocele impair normal loading and ambulation. This often results in decreased activity and weight bearing, and consequently developing osteoporosis. Osteoporosis is a disease characterized by reduction of total bone mass. A vicious cycle or cascade of events may be set into motion leading to pathologic fractures. Cast immobilization to allow for healing of extremity fractures leads to decreased bone mineral density and repeat fractures. The increased risk of pathologic fractures in children with myelomeningocele is well established. There has been very little research examining bone mineral density in either children or adults with myelomeningocele. The causes of decreased bone mineral density is thought to be multifactorial. Adults are felt to have the potential to develop osteoporosis at a younger age, secondary to decreased loading of lower extremities and impaired ambulatory ability. In addition, the presence of a neurogenic bladder can place adults at risk of developing renal failure, a known risk factor for developing osteoporosis. Patients having had urinary diversion surgery may develop a metabolic acidosis and subsequent osteoporosis. Medications for seizure disorders increase the risk of developing osteoporosis. Previous research studies in children have shown that the bone mineral density in children with myelomeningocele are 1 to 2 standard deviations (SD) below values in the normal population. The neurologic level and ambulatory status as well directly effects the bone mineral density in children with myelomeningocele. Two recent studies have addressed the issue of bone mineral density in myelomeningocele. Quan and co-authors1 looked at 35 patients between the ages of 6 and 19 years of age. They studied the bone mineral density of the distal radius using single photon absorptiometry and also measured biochemical markers for bone metabolism. The authors found that no difference between ambulators and nonambulators; however, the bone mineral density of the 8 patients in their study who suffered multiple fractures (19 in total) was significantly lower than for those remaining patients without fractures. When the authors looked at various biochemical markers of bone metabolism, those markers indicating bone resorption were significantly increased in non or limited ambulators compared to full time ambulators. The authors concluded that patients with myelomeningocele have decreased bone mineral density and are at risk of sustaining pathologic bone fractures. Measurement of bone mineral density (BMD) may help identify those patients at greatest risk of sustaining multiple fractures. A second study by Valtonen and co-authors2 from Sweden evaluated the prevalence of osteoporosis in adult myelomeningocele patients. The authors used the World Health Organization (WHO) criteria for osteoporosis. T scores < -2.5 SD are considered to have osteoporosis, and T scores between -1.0 and -2.5 SD have osteopenia. The authors noted that the presence of other medical risk factors such as urinary diversion surgery, renal insufficiency, seizure medications or steroid treatment had a significant effect on the bone mineral density measured in the femoral neck and trochanteric region of the hip. Patients with more than one of these medical risk factors had lower bone mineral density measurements. The assessment of bone mineral density in patients with myelomeningocele can be problematic. The measurements can be complicated by the presence of lower extremity contractures such that patients are often unable to fully straighten their lower extremities to obtain adequate BMD measured by single photon absorptiometry. Patients may not be able to lie on their back for an extended period of time, and they often have spinal instrumentation which makes measurement of BMD in the lumbar spine difficult. Overweight patients, and the presence of hip deformities with heterotopic ossification (HO) can lead to an over-estimation of the bone mineral density. Numerous authors have discussed various treatments for improving bone mineral density. These include the use of bisphosphonates medications, which decrease osteoclastic activity and bone resorption; and the use of thiazides that inhibit calcium excretion. Calcitionin has been shown to be effective in the prevention of vertebral fractures due to osteoporosis. Diminished bone mineral density, either osteopenia or osteoporosis, is a significant medical problem that must be considered when treating patients with myelomeningocele. The measurement of bone mineral density may help identify those patients at risk for sustaining multiple pathologic fractures. Single photon absorptiometry to measure BMD is readily available, inexpensive, and has been shown to be accurate and reproducible. Future longitudinal studies should evaluate the effective of screening, and the results of treatment of decreased bone mineral density in myelomeningocele patients. References: 1. Quan A, et al.: Bone mineral density in children with myelomeningocele. Pediatrics 1998; 102: E34. 2. Valtonen KM, et al.: Osteoporosis in Adults with myelomeningocele: An unrecognized problem at rehabilitation clinics. Acta Phys Med Rehabil 2006; 87: 376-382. Editor�s note: My son, age 33, fell and broke his hip 3 years ago. Last year the family doctor sent him for a bone-scan, and he was diagnosed with osteoporosis. He is now on a weekly prescription and calcium 3 x a day. Talk to your local doctor to see how this may affect you or your child. |
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| Is It Ever Too Early to Start Planning for My Child's Lifetime Financial Security?
As the parent of a young child with special needs, you're busy making decisions about everything from healthcare and physical therapy to daily care and education. During this challenging time, preserving your child's lifelong financial security may seem like a distant priority. Yet, early planning in this area could be critical to your child's well being. Finding the "right" financial strategies today may help you avoid costly mistakes down the road. An early start gives you time to save for your child's financial needs and the peace of mind that comes from knowing you�ve done what you can to secure your child's future. Where Do You Begin? Whether your child has autism, cerebral palsy, Down syndrome or one of many other life-altering conditions, you can help ensure a financially secure future by taking a few key steps. Step 1: Build your "special needs team." You've probably chosen some of the players already � physicians, social service representatives and counselors with expertise in your child's area of disability. Now it's time to add two more team members: an attorney who specializes in disability law and a financial advisor with the experience and resources necessary to address special needs financial concerns. Step 2: Put your financial "house" in order. With the help of a knowledgeable advisor, review your family's overall financial situation, including assets, liabilities and insurance coverage. To protect the financial strategies you will choose for your special needs child, you'll want to make sure that goals like education and retirement are on track � and that there is adequate insurance to protect the family in the event that something happens to either parent. Step 3: Draft a "Letter of Intent" or Life Plan. Detail your child's health, abilities and challenges, hobbies and interests and future care needs. Your social service representative can help you develop this important document, which will serve as a roadmap for you � and for future caregivers. Step 4: Learn about public benefits. It may be too early to gauge whether your child will be self-sufficient as an adult. But generally, it's best to plan for the possibility of needing public benefits such as Supplemental Security Income (SSI), which offers a monthly stipend as well as access to Medicaid and other critical benefits. To ensure your child's eligibility, you�ll need to limit the assets he or she owns to $2,000. Step 5: Calculate the need for "supplemental" funds. Families usually want to help preserve their children's quality of life by supplementing SSI income. Using a specialized calculator, your financial advisor can help you obtain a realistic estimate of what your child will need. You'll want to recalculate this "goal" periodically to adjust for changes in your financial situation or your child's anticipated needs. Step 6: Fund your "goal." At the moment, funding your "special needs goal" may seem all but impossible. But with guidance from a knowledgeable financial advisor, you may find practical, cost-effective solutions, such as purchasing a "second-to-die" life insurance policy payable to a Special Needs Trust (SNT). Step 7: Consider an SNT. Since gifting funds directly to your child � or naming the child as beneficiary of a life insurance policy � would jeopardize public benefits eligibility, it may be necessary to establish a specialized trust. SNTs are designed to hold supplemental funds for the benefit of an individual who receives SSI. Attorneys with expertise in disability law know the ins and outs of drafting SNTs. (Locate an attorney in your area at www.naela.org.) Your attorney and financial advisor can help you consider who will serve as trustee, how trust assets will be invested and how they will be disbursed to meet your child's needs. Step 8: Coordinate estate plans. As noted above, preserving public benefits eligibility will require changing beneficiary designations from your child to the SNT. That holds true for anyone who wishes to bequeath assets to your child. Your financial advisor also can help you choose estate-planning strategies that meet your objectives for both the child with disabilities and other intended heirs. Getting started today can make a meaningful difference in your child's life. F or more information about special needs financial strategies or to speak with a Financial Advisor trained to help you address your unique special needs situation, call Merrill Lynch at 1-877-456-7526. With permission from the Merrill Lynch. www.totalmerrill.ml.com/specialneeds |
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