MYASTHENIA    GRAVIS IS A   
COMPLICATED
& CHALLENGING DISEASE
Children and their families who face a Myasthenia Gravis diagnosis may be overwhelmed and frightened. It is normal to feel a variety of feelings, and it’s important to maintain open lines of communication between you, your child, family, friends, and medical professionals.

A diagnosis may come as a result of blood tests or muscle study findings, or a diagnosis may be clinically based on signs and symptoms of myasthenic complications. The days and weeks after a diagnosis can be daunting as you and your MGKid begin to learn how to live with MG. We have compiled some advice from other MG Families to help your family get through the first 100 days after Myasthenia Gravis Diagnosis. 

THE FIRST 100 DAYS

AFTER MYASTHENIA GRAVIS DIAGNOSIS

   EDUCATE   YOURSELF

  FIND RESOURCES   

Knowledge is helpful for assessing this new challenge and developing a plan to manage MG and the changes that come with diagnosis. You might find it helpful to find articles online or visit your local library to understand more about pediatric MG, research treatment options, or connect with others living with MG to learn about their experiences. The following list contains some resources that may be helpful as you begin your research.

  ASK QUESTIONS   

Make a list of questions as you learn more about MG through your research and as you begin to explore life with your MGKid. You can reference this list as you prepare for appointments with medical professionals or meet other families with MGKids. Your questions and the answers you get will vary depending on your individual situation, but the following is a list of questions that you might find helpful to consider during the first 100 days.

  QUESTIONS ABOUT CRISES   

  • What triggers an MG Crisis?
  • What factors can exacerbate MG?
  • Will there be an immediate MG crisis due to this diagnosis that will require hospitalization?
  • What are warning signs of an MG Crisis?

  QUESTIONS ABOUT OTHER MEDICAL ISSUES   

  • Are there other autoimmune, neuromuscular, or rheumatologic syndromes that should be investigated in my child?
  • When should we test for other autoimmune, neuromuscular, or rheumatologic syndromes?
  • How can we test for other autoimmune, neuromuscular, or rheumatologic syndromes?
  • Can my child be vaccinated for the flu? Are other vaccines acceptable?

  QUESTIONS ABOUT RESOURCES  

  • How can I facilitate the exchange of vital information between you and my local pediatrician or local hospital providers? (e.g. plan of action for crisis; sharing of records)
  • Is my child able to have treatments locally?
  • Are there local support groups?
  • Do I have access to social workers or medical caseworkers?
  • Are there financial, transportation, or travel resources available for families?

  QUESTIONS ABOUT DIAGNOSIS  

  • How long will it take for your lab to process bloodwork?
  • Can my child still have MG even with a negative blood test?
  • What is the difference between a clinical and a medical diagnosis?
  • What type of MG does my child have? Generalized or Ocular? Seronegative or positive?
  • What is the difference between generalized MG and ocular MG?
  • What is the difference between seronegative or positive results?
  • Should we consider referrals to other specialists? (e.g. neuro-ophthalmologist; pediatric ophthalmologist; eye, ear, nose, and throat (EENT) doctor, immunologist, nutritionist)

  QUESTIONS ABOUT TREATMENT  

  • How will treatments differ based on this diagnosis?
  • What medications are part of my child’s treatment plan?
  • What is the timeline for using each medication?
  • What is the best way to communicate to discuss updates on my child’s symptoms in response to the prescribed medications?
  • What is our next course of action if medication does not work?
  • What are your thoughts on Thymectomy as a course of treatment?
  • What are your thoughts on Plasmapheresis as a course of treatment?
  • What are your thoughts on IVIG as a course of treatment?
  • What are your thoughts on pre-puberty treatment versus post-puberty treatment?
  • How do medications used to treat MG affect puberty?
  • What defines remission? Will this happen quickly or slowly?

  CONNECT WITH OTHER PARENTS   

Other patients and parents of MGKids are a great resource. Reach out to others, and share your experiences. Each patient’s symptoms and treatments vary, but there is much to be learned from one another. Use social media as a resource to find groups or conferences focused on MG. MGKids is dedicated to cultivating a community of patients and caregivers. MGKids is commited to providing tools and resources to help connect MGKids and their families with other MGKids and families.

  EXPLORE INDIVIDUALIZED EDUCATION PLANS   

Section 504 of the Rehabilitation Act or the Individualized Education Plan under Federal Law 108-446 ensures specialized instruction and accommodations for students with disabilities. Your child may benefit from having an IEP designed to help manage their MG while achieving their educational goals. We have included a brief introduction to IEPs on our MGKids @ School page.

   EDUCATE   OTHERS

  SHARE KNOWLEDGE   

An MG diagnosis comes with changes for your family and for anyone who regularly interacts with your child such as a teacher, babysitter, or classmate. You may want to reach out to those who are integral to your child’s day-to-day life to inform them of the diagnosis and educate them on what MG entails. You and your child may share ways to identify and manage a crisis. You will find helpful resources for education in our What is MG? and MGKids @ School pages. Maintaining open lines of communication will help ensure your child’s school is a safe, accessible, and happy place. Below is a list of ways you might go about educating different groups.

  • ASSESS THE NEED FOR ACCOMMODATIONS. Your child’s situation will dictate their ability to physically navigate the school environment. It is important to consider the following questions when assessing your child’s school.
  • Can your child navigate to the building entrance from the drop off zone safely?

  • Can your child easily access all levels of the school building?

  • How frequently and how far does your child need to travel from one classroom to another throughout the day?

  • How can we get a second set of textbooks to keep at home?

  • Would your child benefit from being placed in a different seat within the classroom?

  • What is the emergency evacuation plan for your child? Has your child practiced this plan?

  • How can field trips be made more accessible for your child?

  • Can physical education classes be adapted for your child'™s ability?
   TAKE CARE   OF YOUR CHILD

  YOU KNOW YOUR CHILD BEST.    

You are the best person to assess their physical and emotional state and understand their needs. You know what is normal for your child, and what is out of the ordinary. Track changes in their symptoms and also their emotions. This will help you communicate changes with your doctor, or help your child cope with their diagnosis. Here are a few ideas to help you advocate for and support your MGKid.

  • KEEP A JOURNAL OF SYMPTOMS. This will help you track changes over time. In addition to written observations, you can include photos of your child to establish a visual baseline and reference as symptoms appear. This information can be shared with your healthcare provider at appointments.

  • TALK TO YOUR CHILD. Discuss your child’s diagnosis with them in terms they can understand. Answer questions they have about what their illness and treatment entails. Some children need time to process upcoming procedures, while others will become anxious with anticipation. Keep lines of communication open.

  • EMPOWER YOUR MGKID WITH THE ABILITY TO MAKE CHOICES. You know what medications or procedures are non-negotiable. However, when possible allow your MGKid to make choices and be an active participant in their healthcare and education. Include your child in their annual IEP or 504 planning meetings. This is especially important as children mature into adolescents.
  • ENSURE YOUR MGKID CONTINUES TO BUILD AND MAINTAIN FRIENDSHIPS. Friendships with peers are an important part of childhood development. Sometimes MG or treatment procedures can interrupt the normal schedule of activities. Talk to your child about how they can share information about MG with friends. Also, you might consider seeking out opportunities for your MGKid to connect with other MGKids.

  • ENGAGE SCHOOL ADMINISTRATION. If your MGKid is in school, you may want to engage school administration in creating a plan for illness-related absences, special accommodations, and educating teachers and staff about MG and crisis management.

  • PLAN FOR THE FUTURE. MGKids grow up to have careers, families, and roles within their communities. Treating and managing MG is very important, but education and personal goals should also be a priority. Ask your MGKid what they want to be when they grow up. Hold them to the same standards as their siblings or peers, and ensure teachers also hold them to high academic standards. Encourage them to join extracurricular activities that interest them.
   BUILD A   TEAM

As the primary caregiver, you are your child’s advocate. Think of yourself as the team captain. You will need to educate your teammates about MG, and rely on them to help care for you, your MGKid, and your family.

  THIS JOURNEY WILL EXTEND WELL
BEYOND THE FIRST 100 DAYS.    

As a caregiver, it is important for you to take care of yourself, too. Ensure you are meeting your physical and emotional needs as well. Caring for an MGKid can be a stressful and rewarding experience.

  • TALK TO SOMEONE. Ensure that you are working through your emotions regarding this diagnosis. Talk about your feelings, fears, frustrations, and achievements with someone. This can be your spouse, faith community leader, friend, parent, or a counselor. Your child can sense if you are overwhelmed or stressed, and this could increase their anxiety about diagnosis.

  • TAKE CARE OF YOUR RELATIONSHIPS. It is important for you to maintain relationships with friends and family members that are not focused on MG. It is also important to continue to cultivate your relationships with your other children and your spouse. Being a caregiver can be time consuming, but ensure that you schedule time with the people in your life who love and support you and your MGKid.
  • JOIN A SUPPORT GROUP. A great way educate yourself, talk about your experience, and meet other parents of MGKids is to join a support group. Social media is a great place to search for support groups, but it is important to note that social media is not as closely monitored for positive, productive discussions. Your hospital, provider, or caseworker can provide you with information about local support resources as well. You might be interested in investigating a few of the following caregiver resources.

  • Pediatric Myasthenia Gravis
  • DFW Myasthenia Gravis Support Group
  • Family Caregiver Alliance
  • Muscular Dystrophy Association Caregivers
   TAKE CARE   OF YOURSELF
  1. SCOUT TEAMMATES.
    Engage family members, friends, or members of your faith community within the first 100 days.

  2. MAKE A GAME PLAN.
    Begin to compile a list of things with which your teammates can be of assistance. When someone offers to help, take them up on their offer. Service is positive for everyone involved—you benefit from the help, they receive positive affirmation, and your MGKid will feel loved and supported.

  3. COMMUNICATE WITH YOUR TEAM.
    One way to build and communicate with your caregiving team is by creating a community through a blog or community website website. There are many sites that allow you to securely share updates with people who care about you. You can journal about your experiences and create a calendar to coordinate care needs like meal preparation, transportation to medical appointments, or respite.
  • TEACHER PRESENTATIONS. Work with your child'€™s school administration to explore how you and your child can schedule an MG presentation for faculty during a meeting or teacher training. Make sure that you share any special information specific to your child's needs.

  • STUDENT PRESENTATIONS. Other children may be curious about your child's diagnosis. You can proactively address peer questions by working with your child'€™s school to coordinate a classroom presentation or school assembly. During this presentation you may want to focus on building a community of support.

  • INDIVIDUAL MEETINGS. Recruit your child'€™s teacher to be an advocate for your MGKid while at school. Schedule an appointment with your child'€™s teacher to discuss more specific information that is pertinent to your child'€™s safety while in the classroom environment. Share the information from the MGKids @ School€œ section with the teacher so they feel comfortable in their role as an advocate.