HOW DO I    CARE FOR AN  
MGKID?

MGKIDS & CARE

   OTHER MEDICAL 
  INFORMATION

MGKids are usually stronger in the morning or after rest, but there are other things you can do to help ensure they stay strong.

  • Administer medications on schedule
  • Avoid new medications without discussing them with your doctor or pharmacist
  • Maintain regular sleep schedule and rest times
  • Educate your child's teachers, school nurses, daycare, family members and friends about myasthenia gravis and your child's care plan
  • Adjust daily school schedule in response to medical needs as allowed under Section 504 Rehabilitation Act. Plan and prioritize your child's physical activities. For example, if your child has a soccer game after school, they may need to sit out during P.E. class that morning.
  • Communicate how your child's care is being handled to people who regularly interact with your child
  MG TREATMENT    OPTIONS  

A variety of treatment options are available for Myasthenia Gravis, and choosing the correct treatment plan is an important decision you and your doctor must make together. Treatment plans can vary to include medication, procedures, or a combination of both.

  SYMPTOMATIC TREATMENT   
Treatment to improve the signals sent from nerve to muscle.

ASSOCIATED MEDICATIONS:

  • Mestinon (pyridostigmine bromide): Anti-acetylcholinesterase drug that allows acetylcholine to remain at the neuromuscular junction longer than usual so that more receptor sites can be activated

  TREATMENT OF ACUTE SYMPTOMS  
Treatment to remove the antibodies that affect the signals sent from nerve to muscle.

ASSOCIATED PROCEDURES:

  • Plasmapheresis: A plasma exchange that removes abnormal antibodies. Muscle strength improvement can be considerable, but it is often short-lived as the body continues to produce abnormal antibodies. This procedure may need to be performed multiple times, and can be useful during severe weakness or prior to surgery.
  • IVIG (Intravenous Immunoglobulin G): An infusion sometimes used to affect the function or production of abnormal antibodies.
  DANGEROUS  
  MEDICATIONS  

FOR MGKIDS

You must be aware of all drugs entering your MGKid's system. The following list contains prescription and over-the-counter drugs you should avoid or use with extreme caution.

  AVOID                                                                                       

  • Telithromycin (Brand Name: Ketek)
    Inpatient drug used for serious pneumonia
  • Azithromycin (Brand Name: Zithromax, Z-Pak)
    Commonly prescribed antibiotic
  • Botulinum Toxin (Brand Name: Botox)
    Bacteria that blocks nerve activity in muscles
  • Quinine
    Used to treat malaria or sometimes used for leg cramps
  • Procainamide
    A cardiac drug injection used for irregular heart rhythm
  • Magnesium IV
    Oral multivitamins are okay
  • D-penicillamine 
    Rarely use

  USE CAUTIOUSLY                                                             

  • Flouroquinolones Family (including Ciprofloxacin and Levofloxacin)
    Commonly prescribed antibiotics that are rarely associated with worsening MG
  • Aminoglycoside Antibiotics (gentamicin and neomycin; tobramycin may be less offensive) Use cautiously, if no alternate treatment is available.
  • Prednisone or Steroids
    Common treatment for MG, but patients who start on high doses of steroids may have temporary worsening of their MG during the first two weeks prior to seeing an improvement in their MG. Thus, MGKids need to be monitored carefully during use.
  • Beta-Blockers
    Commonly prescribed for hypertension, heart disease and migraine headaches, but potentially dangerous in MG. Use cautiously, if necessary.

  VACCINATIONS                                                                     

It is believed that injection influenza vaccines, and early childhood vaccines are safe for patients with MG.* Evidence suggests that vaccine-related worsening of MG is rare. Therefore, most MG specialists believe the benefits of immunization outweigh any small risk related to the possible worsening of MG symptoms.

*Most vaccines are "dead" or inactivated. However, some vaccines are "live" or attenuated. Live vaccines should be avoided. For example, the influenza nasal spray is a "live" vaccine.

  GENERAL ANESTHESIA                                                            

This should be considered as needed, but always discuss your child's MG with the provider giving the anesthesia. Changes may need to be made to the anesthesia medication used on your MGKid during the surgery. Also, make sure the facility you are using for the surgery is equipped to handle medical deterioration or crisis. Avoid neuromuscular blocking agents which can exacerbate the failure of neuromuscular transmission. This includes depolarizing and nondepolarizing drugs like succinylcholine and rocuronium.

  IMMUNOSUPPRESSION   
Treatment to prevent the body from making too many antibodies.

ASSOCIATED MEDICATIONS:

  • Prednisone: A steroid that can be used to suppress the abnormal action of the immune system that occurs in MG patients
  • Azathioprine
  • Cyclosporine
  • Myocophenylate Mofetil

  THYMECTOMY  
Treatment to remove the antibodies that affect the signals sent from nerve to muscle.

ASSOCIATED PROCEDURE:

  • The surgical removal of the thymus gland that lies behind the breastbone and is an important part of the immune system. This treatment can be used in some MG patients, and it is always used for the 10-15% of patients with MG who present with a tumor on the thymus gland. This procedure can lessen the severity of weakness or completely resolve weakness caused by MG. The success of this procedure varies with each patient.

  EMERGING THERAPIES   
Soliris (eculizumab): Monoclonal antibody* that binds to the proteins that can destroy red blood cells in people with genetic conditions
*Clinical trials using monoclonal antibodies are underway and may eventually be available as another tool to treat MG