Elliot: Stroke At Age 2, Ohio

The morning of April 27, 2015 I found our two-year-old son, Elliot seizing in bed. All that follows, I would rather forget. Life has a way of bringing memories back, sometimes welcome, and sometimes like a sucker-punch to the gut.

We made a quick trip to the hospital, and then were given a lot of meds to stabilize Elliot. We then had to be transferred to the Children’s Hospital. By evening, the meds were wearing off and he groggily woke up. The right side of his face was droopy, and his little body didn’t seem to be coordinated. I remember saying, “He looks like an old person who had a stroke” and in the same breath, “…but surely not”. Before the seizures, he usually sucked his two middle fingers on his right hand. He worked hard during his sleep to get his right hand up to his mouth. He tried over and over, and finally his fingers found their way into his mouth. I remember feeling so relieved that he had regained this ordinary comfort.

By the next morning, his cultures showed growth which told the doctors what kind of infection they were up against. They changed the dosage of the antibiotics. Elliot woke up happy. We read books and introduced soft solid foods to him. We noticed that food kept wanting to sneak into his right cheek, and he didn’t seem to feel food on his lip. When doctors or nurses tried to get him to stand up, he couldn’t stand without assistance. This concerned the neurologists and us. They ordered an MRI for the next morning. All we knew at that point was he was having febrile seizures. No one mentioned anything more serious than that.

It had now been two days since we first brought Elliot in to the hospital. The morning of his MRI, we really didn’t know what to expect. We knew he wasn’t progressing like he should, but nothing could have prepared us for what the doctors discovered. I can’t quite remember going back to Elliot’s room, but I think it was there that the neurologists told us that Elliot had suffered an ischemic stroke, likely due to a blood clot from an infection. Elliot hadn’t shown any signs of an infection, other than a cold and runny nose. But the night before we took him to the hospital, he did stumble twice while playing in living room. I remember thinking at the time that it may have been a sign of an ear infection. A blood culture, and an Echocardiogram confirmed the he had endocarditis (an infection of the inner lining of his heart). A piece of the infection had broken off from his Aortic valve and traveled to his brain. We had no idea that this could happen to such a young child!

Slowly, as Elliot started to feel better and have more energy, he tried new things. Oh, how we celebrated those first wobbly steps! Things that followed included re-learning how to eat, hop, run, and use his right hand. Elliot was in OT and PT daily for a week and then continued OT once a week for about a month. He has since graduated from physical and occupational therapy. Looking back, it is amazing to see how far he has come.

Elliot had a very limited vocabulary before his stroke. Unfortunately, his stroke damaged part of the speech center of his brain. Because of this he lost everything except for “Ummhmm (yes), and Hmmumm (no).” We began teaching ourselves sign language, and doing all sorts of things to help with communication. Elliot still sees a speech therapist once a week because speech seems to be his biggest hurdle. Much frustration has come from being unable to communicate. With therapy, he continues to extend his vocabulary and speaks in full sentences now. As a mom, one of my biggest hurdles is to let Elliot progress at his own pace.

We feel that the doctors followed a logical pathway to Elliot’s diagnosis of stroke. However, it would have been nice to have had an assessment for stroke initially or have been told about the possibility that children could even have strokes. The doctors have been optimistic about Elliot’s future, but also realistic. The hardest part of all is accepting that things will happen in their own time. We have had a great team of doctors and therapists and we continue to get strength from God, family and friends.

 

Help us #MakeMayMatter for kids impacted by stroke! Share this story and #BeAVoice for pediatric stroke.

Leave a Reply

Your email address will not be published. Required fields are marked *