Advice for a Family New to a Pediatric Stroke Diagnosis

Originally published on October 16th on the American Heart Association Support Network blog.

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No one expects to hear that their child has suffered a stroke. When a stroke diagnosis is given to an infant, child, or teenager, often the first thought is: “…but, wait, strokes only happen to the elderly. How can my child have had a stroke?” The first hours, days, and even months following that diagnosis can be overwhelming, confusing, and downright scary.

I should know. My son had three massive strokes at birth.

I’m now four years into my journey of parenting a perinatal stroke survivor. After a year of living in a pretty dark state of mind, I dusted myself off, dove into researching how to best care for my son, and have transformed myself into a confident caregiver of a child with special needs.

As part of my transformation, I’ve found myself helping other parents through this uncertain journey. When I’m approached by a family new to a pediatric stroke diagnosis, here’s what I tell them. 1. Find a neurologist who is a pediatric stroke specialist.

Yes, anyone can have a stroke, but the approach to treating a pediatric stroke survivor is vastly different than what’s prescribed for an adult. Often what’s taught in medical school is focused on adult stroke, so not every pediatric neurologist can confidently advise a family whose child is diagnosed with stroke. Fortunately, there are several hospitals across the nation that have a pediatric stroke clinic staffed with a neurologist well-versed in pediatric stroke. Ask for a referral to one of these clinics and, even if you need to travel hundreds of miles to the closest one, go there. It is worth it.

2. Find a team of therapists who believe in your child.

A child’s brain can rewire itself to some extent after a stroke and a therapist familiar with treating a child after stroke can make a huge difference in the rehabilitation process.

3. Find a support group.

Support groups come in two forms: in person or online. Ask your neurologist if there’s a local support group you can join. If not, join the forum on the Support Network. Parents going through a similar journey are the best source of information – plus, they’ll understand your best and worst days like no one else can.

4. Find a caregiver with experience in special needs.

It’s so important for a parent to have the time to take care of herself or himself, but often times, when a child has special needs, his Mom or Dad never takes time away for self-care. The reason? No one to care for their child. Check out Care.com’s special needs section or a local college’s Physical Therapy doctorate program for someone who can help you. There are people out there with the credentials and passion to care for your child.

5. Trust in your child.

No matter what prognosis was given or what resources you have for your child, trust and believe in your child: they will exceed expectations and do things you never thought they could do!

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