Pediatric Stroke Survivors: April 2009

So this is my Sean who suffered a STROKE before he was born. As shocking as it may sound 1 in 4000 babies suffer a stroke each year. And just like us we have no clue why it happened or if it can or will happen again.

Because of lack of research and awareness it took us 2 years to get a diagnosis. This is why I started this blog, so I can get the word out and share my families experiences with others and hopefully help others while raising awareness and educating the world.

Before this happened to us we had no idea that children let alone unborn children could suffer strokes.

Sean was a preemie who was born about 7 weeks early and at the age of 6 months old he was not lifting his head or pushing up on his arms. At that time our pedi (at the time) said he needed extra time since he was a preemie.

As a first time mom I know I was nervous and maybe overprotective but my mommy instinct has been right all along. At that point I referred myself to the Early Intervention system and got Sean evaluated.

They evaluated him and told us he was preforming at a 1 month level and he qualified for PT and OT weekly. As therapy progressed so did Sean. He eventually lifted his head, pushed up, rolled over, sat on his own. We were super excited that he was progressing with his milestones however we noticed he was showing left hand preference. Everyone including our pedi (at the time) said he was just going to be a lefty.

As a first time mom I didn't know that they should not show hand preference before the age of 3.

Sean had overall low muscle tone and weakness. He started to army crawl, eventually crawled on all fours after his first birthday. It took a long time to get there but he did so we were all super excited. Around 18 months he was not talking or walking and he had several several ear infections. We decided to start SPT weekly on top of the OT, and PT. He also ended up getting tubes placed in his ears. After the tubes were placed and speech started he started to say a lot more words compared to before he was only saying 8 words.

As for the walking that came a few months later and it was more noticeable with the right side weakness. He fell down a lot so we started to stretch him more at therapy, and at his 2 year EI review all of his therapists expressed concern about the significant weakness on his one side and thought we should go to the pedi for a MRI.

We went to our pedi and he referred us for a MRI which showed he suffered a stroke in utero meaning before he was born. The stroke effected his parietal lobe. We also found out he has right hemiparesis cerebral palsy, is suffering from complex partial seizures in his temporal and frontal lobe, has closed lip schizencephaly (a whole in his brain), sensory issues, social behavioral skills, and much more.

He than started to go to 5 therapies a week. He went to PT, OT, Aquatic OT, SPT, and DT.

Which helped out a lot. I just wish we found out about the stroke sooner so we could have increased his therapy earlier on. It was more noticeable because he fisted a lot when he was trying to walk, run, eat, walk up and down stairs. Anything that was hard for him he fisted and I remember people telling me he was going to be a fighter. If I only knew than what I know now.

Now that he is 3 he goes to Early Childhood Special Education program through our school district and gets OT, SPT, Social Worker social behavior, coping skills and gets privately PT, and OT weekly. He currently is also wearing theratogs which I highly recommend but that can be a post in its self. He currently also wears pollywogs inserts in his shoes. We are waiting on his SMO for his left foot and his AFO for his right foot (effected). We also just started taping and x on his tummy. Taping from his hip up to his ribs. His rib cages are still way to high because of his weak muscles in his tummy. He is starting to fall a ton again thanks to a growth spurt.

He is doing very well and has come a long way. He has gone through way more than I would ever want him to go through but he is a fighter and a true survivor who will have a life long diagnosis of being a PEDIATRIC STROKE SURVIVOR.