Eli's Story: Parent's Letter Project Stroke-Eli’s parents

Our son had a stroke when he was seven years old. He was perfectly healthy until then. When he was first brought to Children's National, we were overwhelmed and very afraid. We had never heard of a child having a stroke before. He couldn't move the left side of his body, hold himself up, walk, and initially even had trouble speaking.

Although it is overwhelming, try to take one day at a time, and remember that every stroke and every child is different. Don't immediately assume anything about your child's future. It's too early to tell exactly what effects the stroke will have on your child, and how long those effects will last.

We spent a week at Children's National where many tests were run to determine the cause of his stroke. Ultimately, no cause was ever found. In some ways this was good, because many of the causes of stroke are complicated conditions that have other risks associated with them. But not knowing what caused his stroke was hard to accept as well. The doctors at Children's were great, as were the physical and occupational therapists.

After one week, our son was sent to a pediatric rehabilitation hospital in Baltimore. He was an inpatient there for four weeks where he had intensive therapy. One of us slept there every night and spent all day with him going to his various therapies. In some ways, it was like a little cocoon there, and was essential to all of us adjusting to this new world.

Our son then spent six weeks as an outpatient. We drove him daily from Rockville to Baltimore, but it was worth it to have him continue his therapy as well as school work. After that, he returned to second grade, and went to physical and occupational therapy several times a week for many years.

Our son is now a senior in high school. He is a happy, smart, well-adjusted kid with many friends. He participates in many school activities, and hasn't let his stroke define him or limit him.

The part of the brain that was affected was his right basal ganglia. It affected his left side, motor control. It did not affect his speech, cognition, or memory. He went from being totally paralyzed on his left side, to gradually regaining the ability to walk. He still wears a small brace on his left foot to provide additional support, and has a slight limp. He lost a lot of use of his left hand, although can use it for many things.

There is an excellent organization to provide information and support--CHASA.org (Children's Hemiplegia and Stroke Association). There is a web site with information and a listserv which provides daily support and answers many questions. There are local groups, including one in the DC area which gets together occasionally. We have found the support of CHASA to be very helpful throughout the years, and initially it was very important to connect with other parents, and realize we were not the only ones whose child had a stroke.

Hang in there. Find support. When friends or relatives ask you if they can help, let them know specific things they can do, because it is very hard for them to know what you want. Don't be shy about taking their help. The initial craziness of being in a hospital and having a child with a stroke will gradually fall into a new reality, and you will all adjust to it.

Sincerely,

Eli's parents, Sue and Rob

Treatment Team

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