A message to families after diagnosis
Take a deep breath. You are not alone.
We know how overwhelming those first moments are after diagnosis can feel - but there is hope, there are treatments, and there is a community here ready to hold your hand through it all.
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Together we'll help you find answers, strength and connection.
If your child has been diagnosed with Infantile Myofibromatosis, here are some questions you can ask your medical team to better understand their conditioning care;
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Remember: You are your child's best advocate. Don't hesitate to ask questions or request copies of test results for your records!
Navigating The Diagnosis
1
Understanding Infantile Myofibromatosis
What type of IM does my child have? (Solitary, multi-centric, or visceral?)
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Where are the tumors located?
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Are any internal organs affected?
2
Monitoring & Imaging
How often should we do imaging? And which type of imaging will be best for my child? (Ultrasound, MRI, etc.)
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What signs should I look for that might indicate new growths?
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3
Treatment Plan
Is watch & wait appropriate for my child, or should we consider treatment?
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What are the potential benefits or side effects of the treatment options?
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Who will be coordinating my child's care- pediatrician, oncologists, geniticist, or another specialist?
4
Genetics & Family Impacts
Should we do genetic testing? (For PDGFRB or NOTCH3 mutations)
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What does it mean for our family if we test positive for a gene mutation?
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