Stroke Smart Magazine
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You Are Not Alone
Parents of Childhood Stroke Survivors Share Helpful Tips
When my daughter Kate was only seven days old, we learned that she was a stroke survivor. When first diagnosed, we had feelings of shock. Next came the fear of the unknown: What challenges would our Kate face in the future? We watched her every move, looking for some sign that she might be able to use her right hand. We had many sleepless nights watching for seizures. Anxiety filled our world. Would she walk? Would she speak?
Each delay brought sadness and worry. But there was a silver lining. Every milestone filled us with joy and was a cause for an outlandish celebration. “Look! She moved her finger!” How many parents call every single friend and family member when their child moves a finger?
That was 16 years ago and since then, as founder of the Children’s Hemiplegia and Stroke Association, I’ve spoken with thousands of parents of young stroke survivors. Along the way, I’ve discovered some helpful tips that parents might find useful.
Choose Life Over Therapy
Quite often you’ll be faced with making choices such as: Do I skip a therapy appointment so that my child can play with a friend? Should I reschedule therapy so I can have lunch with my spouse? While therapy and early intervention are extremely important, there needs to be a balance between the child’s mental and physical health. Most medical professionals will agree that it’s OK for both you and your child to take a mental health break from therapy.
Help Your Child Become Independent
Some activities will be challenging for your child and, like it or not, it does not help if we do those things for him. Your child can learn to shampoo his hair with one hand. It can be difficult for you, and he might struggle at first, but he will find his way and it will boost his confidence.
Get Multiple Opinions
Medical professionals will not always agree on the best treatment for your child. Visit several doctors and talk to other parents dealing with the same diagnosis. Sort through the information and make the best choice that you can. Finally, try not to second guess your decisions. You love your child and you know her needs better than anyone.
Don’t Take 'No’ for an Answer
Insurance companies often deny coverage for physical, occupational or speech therapy. Have your doctor write letters. Find someone at the insurance company who sees your child as a person, not a number, and work with that person each time you call - they can often provide helpful hints on how to get coverage.
About Childhood Stroke
- Childhood stroke is as common as childhood brain tumors.
- Stroke is the sixth largest cause of death in children.
- One-third of strokes of all types affect a newborn.
- Stroke in infants occurs once in 4,000.
- Stroke in children between ages 3 and 12 occurs once in 100,000.
- Stroke occurs at a higher rate in boys and in African American children.
- A newborn might not show stroke symptoms until about age 6 months when he or she might show weakness on one side, which is called hemiplegia, or develop seizures.
- Between 50 percent and 80 percent of infants and children who have had a stroke will experience long-term neurological issues.
- Additional research is needed in perinatal and childhood stroke to identify risk factors and to determine options for treatment.
This is Part 1 of a two-part series on tips for parents whose children have had stroke. Look for Part 2 in the summer edition of StrokeSmart.
Nancy R. Atwood is the founder of Children’s Hemiplegia (paralysis on one side of the body) & Stroke Association and can be reached at firstname.lastname@example.org.
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