Ethan's Story: Just the Facts

My son Ethan just celebrated his 2nd Birthday! He has been diagnosed with hemiplegic cerebral palsy resulting from a stroke before birth. This is his story...
When Ethan was around 5 months old, we noticed that his left hand stayed tight and fisted. The doctor thought this might just be from muscle weakness on that side. She scheduled some xrays and an (unsedated) MRI. The xray results were normal and the MRI was too blurry to read. We were then sent to Riley Children's Hospital for a sedated MRI and to meet with a neurologist. By 8 months old, Ethan began physical therapy. He wasn't meeting milestones. He couldn't sit up on his own, he would get his left hand stuck underneath him when he'd roll over, and he wasn't using his left hand at all.

December 10, 2009 the MRI results were in. Ethan had suffered a stroke before birth. It has effected the left side of his body. The neurologist couldn't tell us why this happened, there was very little information. The neurologist did say that there is a chance he could have another stroke, or seizures and maybe even blood clots. As for the use of his left side...we just had to wait and see. Ethan began occupational therapy around this time too. Blood tests showed that he had double copies of the MTHFR gene which put him at risk for vascular diseases, but was not the cause of the stroke.

Ethan was constantly choking on food and thin liquids. We had a swallow study done and from that decided to add speech therapy. As we continued physical therapy and Ethan began crawling, we found that he always crawled on the top of his left wrist, with the hand turned in. We thought a beniks splint would help him, but he just refused to sleep with it on. He started walking around 18 months old with the help of braces on his feet. An AFO on the left and an SMO on the right. I found that he will tolerate a McKie splint on his left hand during the day. It has helped to pull his thumb out some, since he often keeps his thumb and 1st finger bent inward.

We are currently seeing a neurologist at Riley, that is also a stroke specialist. She has Ethan on folic acid and so far he has not had another stroke, or seizures, or blood clots. He does have an upcoming EEG scheduled to check for seizures, because of some "staring spells". He's talking non stop and aside from entering the terrible 2's, he's been a happy little guy...meeting milestones in his own time.