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Dr. Andrew Rynne
MD
Dr. Andrew Rynne

Family Physician

Exp 50 years

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    Suggest treatment for Ehlers-Danlos syndrome

I have 18 yr old daughter, she has EDS newly diagnosed. Her right thigh began with the muscle jumping a week ago. Was intermittent, now it is continually jumping. Also shoulder and foot. Right side becomingbweak, loss of balance, leg gives out, fell 3 times this week. She is on muscle relaxers not sure if I should take her to er or wait til Monday.
Mon, 8 Apr 2019
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General & Family Physician 's  Response
Hello,

There is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications.

Medications:

Your doctor may prescribe drugs to help you control:

Pain. Over-the-counter pain relievers — such as acetaminophen (Tylenol, others) Ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve) — are the mainstay of treatment.

Stronger medications are only prescribed for acute injuries. Blood pressure.

Because blood vessels are more fragile in some types of Ehlers-Danlos syndrome, your doctor may want to reduce the stress on the vessels by keeping your blood pressure low.

Physical therapy, Joints with weak connective tissue are more likely to dislocate. Exercises to strengthen the muscles and stabilize joints are the primary treatment for Ehlers-Danlos syndrome.

Your physical therapist might also recommend specific braces to help prevent joint dislocations.

Surgical and other procedures; Surgery may be recommended to repair joints damaged by repeated dislocations.

However, your skin and the connective tissue of the affected joint may not heal properly after the surgery.

Surgery may be necessary to repair ruptured blood vessels or organs in people with Ehlers-Danlos syndrome, vascular type.

Lifestyle and home remedies.

If you have Ehlers-Danlos syndrome, it's important to prevent injuries. Here are a few things you can do to safeguard yourself. Choose sports wisely.

Walking, swimming, tai chi, recreational biking, using an elliptical machine or a stationary bike are all good choices.

Avoid contact sports, weightlifting and other activities that increase your risk of injury. Minimize stress on your hips, knees, and ankles.

Rest your jaw. To protect your jaw joint, avoid chewing gum, hard rolls and ice. Take breaks during dental work to close your mouth.

Avoid certain musical instruments. To prevent a collapsed lung, avoid playing a reeded wind or brass instruments.

A violin, viola or piano would be safer options and would take advantage of the increased flexibility of your hands.

She will also need counseling, coping and support at home because Coping with a lifelong illness is challenging.

Hope I have answered your query. Let me know if I can assist you further.

Take care

Regards,
Dr AJEET SINGH, General & Family Physician
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