Reflex Neurovascular Dystrophy (RND)

Joe's daughter Grace was diagnosed with Reflex Neurovascular Dystrophy (RND) in 2008 when she was only 8 years old. RND is a very painful nerve condition which Grace lives with everyday. It is one of many forms of Amplified Musculoskeletal Pain Syndrome (AMPS). Some other types of AMPS that you may have heard of are Reflex Sympathetic Dystrophy (RSD), Chronic Regional Pain Syndrome (CRPS), and Fibromyalgia. Grace has been under the care of Dr. Sherry at CHOP. He has founded Childhood RND Educational Foundation, Inc. The following Information was taken from the Parents Guide to RND;

  • What can be done to help a child with AMPs?: It is most important that someone with AMP begin to use his or her body in a normal way. The abnormal reflex is broken by intense physical and occupational therapy (PT/OT). Some children are able to do this on their own by exercising at home. Although it hurts to do the therapy, it does not cause damage, and some children are able to work through the pain. Many children will need to participate in an intense PT/OT hospital treatment program. It just hurts too much for them to do it on their own. The intense PT/OT program is usually a daily out-patient (day hospital) program but some require inpatient hospitalization. Typical programs who provide this level of care (of which there are only a handful in the United States), affords each child 6 hours of daily PT and OT along with psychological evaluation and support through psychotherapy and creative art therapy. However those programs do vary by institution due to available resources.
  • What kind of injuries lead to AMP?: The cause of AMP in approximately 10 - 20% of children is injury. The majority of children with post-traumatic AMP have a significant specific injury such as a broken bone, crushing or piercing injury, or surgery. The symptoms develop immediately or within a few weeks after the injury. Not uncommonly, as the injury begins to heal, the pain starts and then continues for weeks to months after the injury has fully healed. AMP can mimic previous pain experiences (e.g., feel like a broken bone, even if the bone has fully healed).
  • What kind of illnesses lead to AMP?: Illness is an infrequent cause of AMP. Most commonly it is seen in conjunction with 3 inflammatory illnesses of the musculoskeletal system such as arthritis, tendinitis, myositis or enthesitis. Other illnesses may be the initial cause of pain; most are infections such as mononucleosis, influenza, or gastroenteritis. Constipation can lead to amplified abdominal pain.
  • What kind of psychological stresses lead to AMP?: In at least 80% of children with AMP, psychological factors seem to play a role. There is a whole host of possible stresses that may play a role in causing (or perpetuating) AMP. Notably, we use the term “stress” very broadly. Stressors can be positive or negative, big or small, and can include not just events, but feelings and personality styles. Many of the stressors that impact AMP are normal, everyday stressors that all children face; unfortunately children with AMP tend to experience these stressors in their bodies as pain, while other children may show their stress in other ways. One major stressor we see in many children is the psychological consequence of having such severe pain. This frequently is due to others not understanding the nature of the pain (many friends, teachers and family members do not believe the pain is as intense as it is) and also having a delay in diagnosis and multiple failed therapies.
  • What causes the abnormal reflex?: here are 3 major reasons for the abnormal reflex: injury, illness, and psychological stress. There may be other reasons such as age, genetics, or hormones (80% of children with AMP are girls).
  • What is Amplified Musculoskeletal Pain?: Amplified Musculoskeletal Pain (AMP) is a very painful medical condition. It frequently affects a limb (a foot or leg more commonly than a hand or arm), but can cause pain anywhere on the body. In fact, children can have pain throughout most or all of their bodies. Most children with AMP have constant pain, although there are children who experience intermittent attacks of pain followed by periods without pain. Also encompassed in this are children with disabling amplified abdominal or chest pain that is not musculoskeletal pain in the strict sense. The pain all these children experience, however, is much more intense than one would normally expect because the pain signal is amplified.
  • What forms and other names does amplified musculoskeletal pain go by?: There are various patterns or kinds of amplified musculoskeletal pain that are called a variety of names. We prefer the term amplified musculoskeletal pain since it refers to the fact that the body takes a mild pain signal and makes it very painful, similar to when a guitar amplifier takes a soft sound and makes it very loud. Some of the many names used include reflex sympathetic dystrophy (RSD), reflex neurovascular dystrophy (RND), complex regional pain syndrome types I and II (CRPS I & II), causalgia, Sudeck atrophy, shoulder-hand syndrome, localized or diffuse idiopathic musculoskeletal pain, neuropathic pain, central sensitization pain syndrome, fibromyalgia, psychogenic pain or psychosomatic pain. Information in the literature and on the Internet is quite confusing; most of it applies to adults with specific syndromes, especially the terms fibromyalgia and reflex sympathetic dystrophy. Children are different than adults in their presentation, the response to treatment and the long-term prognosis; children fare much better. Therefore, we avoid using the terms RSD or fibromyalgia except for research purposes. Various forms of AMP can coexist in the same child or, if there is a reoccurrence, the second form may be different from the first form.

For more information and to offer additional support, go to www.childhoodrnd.org

Sincerely,
Joe, Shannon and Grace Pekala

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