Osteogenesis Imperfecta Treatment
There are conventional and natural treatments for osteogenesis imperfecta and its symptoms. However, a comprehensive treatment program customized to your particular needs is a wise approach.
What Should You Do Next?
Treatment is directed toward preventing or controlling the symptoms, maximizing independent mobility, and developing optimal bone mass and muscle strength. Care of fractures, extensive surgical and dental procedures, and physical therapy are often recommended for people with OSTEOGENESIS IMPERFECTA. Use of wheelchairs, braces, and other mobility aids is common, particularly (although not exclusively) among people with more severe types of osteogenesis imperfecta.
A surgical procedure called "rodding" is frequently considered for individuals with OSTEOGENESIS IMPERFECTA. This treatment involves inserting metal rods through the length of the long bones to strengthen them and prevent and/or correct deformities.
Several medications and other treatments are being or have been explored for their potential use to treat osteogenesis imperfecta. The OI Foundation can provide current information on research studies and experimental treatments for OSTEOGENESIS IMPERFECTA, as well as information to help individuals decide whether to participate in clinical trials.
- Intravenous pamidronate therapy (a bisphosphonate) has been shown to reduce fractures and improve bone density in children with osteogenesis imperfecta.(Batch, Couper et al. 2003) Other bisphosphonates have been shown to be effective when given with Vitamin D.(Iwamoto, Matsu et al. 2003)
- Calcitonin. While results have been mixed, studies have shown that results of calcitonin treatment include: decreased annual fracture rate; improved mobility; increased feelings of well-being, and a significant improvement in radiographic bone density(Castells, Colbert et al. 1979).
- Growth hormone can cause a sustained increase in the linear growth rate of children with OSTEOGENESIS IMPERFECTA, despite the abnormal collagen in their bone matrix. In the first year of treatment, growth hormone responders achieve increased bone formation rate and density, and decreased fracture rates.(Marini, Hopkins et al. 2003) There is some controversy over the use of growth hormone.
- Type 1 osteogenesis imperfectais the most treatable form.
- Because the primary deficit is underproduction of normal collage, treatment goals should focus on providing precursors to normal collagen production.
- Treatment should also focus on strategies to increase bone density and avoidance of substances which decrease bone density.
- Because of the effect on osteoblasts of abnormal collagen formation, it is unclear whether we should promote collagen production in types 2-4.
- Get at least 15 minutes of sunshine twice weekly to help with vitamin D production. Get serum levels of 25-hydroxy Vitamin D checked. If low (ideal range is 40-50) take supplemental Vitamin D3 to increase blood levels.
- Avoid cigarette smoking.
- Seek alternatives to the use of steroid and other medications which can lead to osteoporosis.
- Exercise: Regular weight bearing exercise is essential for maintaining or building bone density. People with OI are encouraged to exercise as much as possible to promote muscle and bone strength, which can help prevent fractures.
- Swimming is a good exercise choice for people with OI, as water has little risk of fracture. However, swimming does not increase bone density as much as weight bearing exercise.
- For those who are able, walking (with or without mobility aids) is excellent exercise.
- Consult your physician and/or physical therapist to discuss appropriate and safe exercise which is suited to your individual health and fitness needs.
- Consume a healthy diet which includes lots of fruits, vegetables, legumes, nuts, seeds, beans, and fermented dairy products such as yogurt and kefir.
- A diet high in vegetables promotes an optimal ratio of phosphorus to calcium.
- Increase consumption of leafy green vegetables such as kale, collard greens, bok choy, parsley, mustard greens and escarole. These are excellent sources of calcium, magnesium, vitamin K and other nutrients which are essential for bone formation.
- Other excellent sources of calcium are tofu (if it is produced with a calcium based coagulant), chickpeas, black-eyed peas, other legumes, most nuts, sesame seeds and many grains (especially the grain amaranth).
- Acidic foods such as lemon juice and vinegar help to absorb calcium.
- Foods such as spinach, chard, beet greens, and chocolate contain oxalates, which may bind with calcium and prevent it from being absorbed.
- Phytic acid found in wheat and oats will also bind with calcium and prevent it from being absorbed.
- Decrease consumption of meat and dairy products. Meat and dairy increase urinary excretion (loss) of calcium.
- Despite popular opinion, milk and dairy foods are not the best sources of absorbable calcium and should not be increased in the diet.
- Avoid refined sugars. Diets high in sugar increase the loss of calcium in the urine.
- Avoid the excessive use of sodium (table salt). Sodium increases the loss of calcium in the urine.
- Avoid consumption of colas/sodas which contain excessive amounts of phosphorus and sugar. Excess phosphorus leads to increased loss of calcium and magnesium in the urine.
- Avoid coffee consumption. Caffeine from coffee increases loss of calcium in the urine.
- Caffeine from tea has not been shown to decrease bone density, but caffeine from coffee has.
- Avoid excessive alcohol consumption.
- Avoid the use of Tums, which have been actively promoted as a calcium supplement. Tums decrease the acidity of the stomach. However, stomach acid is necessary for the absorption of calcium.
- Calcium & Vitamin D. Levels of calcium are often high in OI patients. Test calcium and vitamin D levels. Ensure optimal intake, but avoid overdosing.
- Vitamin C. Incidence of fracturing drops with ongoing vitamin C ingestion.(Kurz and Eyring 1974)
- Zinc. Zinc metabolism may be abnormal in OI.
- Factors and cofactors necessary for collagen production: tyrosine, proline, lysine, Vitamin C, Zn, Cu, Mn, Fe
- Other nutrients important for bone health: Magnesium, Vitamin K, boron, manganese
- Chondroitin sulfate. Chondroitin sulfate is the major glycosaminoglycan (70-80% of total) both in normal and pathological bones, and its level was slightly less in the pathological bones. Glycosaminoglycans have been shown to participate in the formation of a functional supramolecular complex in extracellular matrices. Therefore, they may, in theory, be involved in bone fragility.
- While not a common or accepted viewpoint, many of the signs and symptoms of OI have overlap with nutritional deficiencies.
Botanical (Herbal) Medicine
Catechin (from Uncaria Gambir). Catechin has been shown to reduce fractures. There is also histological, electron microscopic, and biochemical evidence of improvement after treatment.(Cetta, Lenzi et al. 1977; Jones, Cummings et al. 1984) Catechin’s role in improving collagen defects in OI probably centers around its ability to:
- reduce, by its reduction of lysyl hydroxylase activity, the increased level of hydroxylysine reported in the collagen of many patients with type I OI
- increase the number of cross-links in the collagen matrix (which may be deficient or exhibit delayed maturation in OI)
- improve the supramolecular organization and stability of the collagen fibers
- possibly increase the reduced collagen production occurring in OI.
A detailed homeopathic history may be taken to determine the most appropriate homeopathic remedy for a child.
Supplement Quality Is Important
Our intention when we use nutritional and botanical supplements is for these treatments to have a physiological effect and clinical benefit, meaning that they are effective and your health improves.
The quality of nutritional supplements in the general marketplace is suspect. In order to get the maximum benefit to your health, be sure you purchase the highest quality nutritional supplements.
The doctors at The Connecticut Center for Health are quite experienced in how to treat osteogenesis imperfecta.
If you would like to learn more about natural medicine approaches to osteogenesis imperfecta, contact one of our clinics for a free consultation about osteogenesis imperfecta or an appointment.
- Batch, J. A., J. J. Couper, et al. (2003). "Use of bisphosphonate therapy for osteoporosis in childhood and adolescence." J Paediatr Child Health 39(2): 88-92.
- Braunwald, E. (2001). Harrison's principles of internal medicine. New York, McGraw-Hill Medical Publishing Division.
- Castells, S., C. Colbert, et al. (1979). "Therapy of osteogenesis imperfecta with synthetic salmon calcitonin." J Pediatr 95(5 Pt 1): 807-11.
- Cetta, G., L. Lenzi, et al. (1977). "Osteogenesis imperfecta: morphological, histochemical and biochemical aspects. Modifications induced by (+)-catechin." Connect Tissue Res 5(1): 51-8.
- Iwamoto, J., K. Matsu, et al. (2003). "Effects of treatment with etidronate and alfacalcidol for osteogenesis imperfecta type I: a case report." J Orthop Sci 8(2): 243-7.
- Jones, C. J., C. Cummings, et al. (1984). "A clinical and ultrastructural study of osteogenesis imperfecta after flavonoid (Catergen) therapy." S Afr Med J 66(24): 907-10.
- Kurz, D. and E. J. Eyring (1974). "Effects of vitamin C on osteogenesis imperfecta." Pediatrics 54(1): 56-61.
- Marini, J. C., E. Hopkins, et al. (2003). "Positive linear growth and bone responses to growth hormone treatment in children with types III and IV osteogenesis imperfecta: high predictive value of the carboxyterminal propeptide of type I procollagen." J Bone Miner Res 18(2): 237-43.