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Forms of Dysautonomia

Treatment of childhood dysautonomia conditions requires a multi-disciplinary approach which most often encompasses medical and pharmacological treatment as well as physical therapy, exercise therapy, and family caregiving/chronic illness/psychosocial counseling.

There is no magic pill or cure for these conditions. The recovery process will involve all of the above modalities along with time and patience.

There are numerous forms of dysautonomia (please talk to your physician about your particular form).

The following diagnostic terms are common within our DYNA membership:

  • Postural Orthostatic Tachycardia Syndrome (POTS)
  • Neurocardiogenic Syncope (NCS)
  • Neurally Mediated Hypotension (NMH)
  • Vasovagal Syncope
  • Post-Viral Dysautonomia
  • Non-Familial Dysautonomia
  • Generalized Dysautonomia
Researchers have discovered a genetic predisposition toward developing dysautonomia conditions. This means that there is a susceptibility to the conditions that can be triggered under certain situations. A genetic predisposition does not mean that everyone in that family is destined to develop the conditions.

Treatment:
Treatment is based on the condition, the sub-type, and the patient specifics and must be individualized. Treatment often includes pharmacological and non-pharmacological methods. Fluid intake of 2 liters a day along with an increased sodium intake is often recommended to help increase the patientís blood volume. Various medications are commonly utilized and each is fine tuned to the particular patient. Medications will also typically require ongoing adaptations as the patient physiologically develops and changes. The hope is to be able to obtain enough symptom relief to initiate a gentle reconditioning program. Reconditioning is important and must be done slowly and can be an extremely frustrating and arduous process.

Prognosis:
There is limited data on the prognosis of children afflicted with these conditions; however, research is being carried out at the nation's leading medical institutions (Cleveland Clinic, Johns Hopkins, Mayo Clinic, Medical University of Ohio, National Institutes of Health, NY Medical College, Vanderbilt Medical Center and others). It is exciting and revolutionary, and there is tremendous hope on the horizon. The statistics demonstrate that a good number of these children will improve significantly by the time they reach their early to mid 20ís (if not sooner). Patients who do not fully recover will often see an improvement in their symptoms with the proper medical management and upon reaching full growth maturity. Some patients will experience exacerbations of symptoms at various times throughout their lives. Tragically, there are also extremely rare fatal forms of dysautonomia but this is not at all common in children.

The prognosis for each patient depends on the form of dysautonomia they have, how they respond to treatment, and on the degree of impact for that particular patient.



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