Story about Sturge Weber Syndrome .

Paulo

Jan 4, 2016


Hello! I'll try to write, but my english needs improviment, ok? Paulo was born on December 14, 2007. He was born with a port wine stain on the right side of the face. A port wine stain also appears in his leg and right foot. When Paulo was six months old, he had his first seizure. The left him paralyzed after seizure and it took two days for him to return to the moving arm and left leg. After conducting several tests discovered that Paul had sturge weber syndrome. Since then, we live in the midst of physiotherapy sessions, hippotherapy sessions, sessions fonoaudioligia, hydrotherapy sessions. Thanks to the professionals who care for him since six months, Paulo walks, runs, plays, up and down stairs. He speaks with difficulty but we understand everything he says. He is a sweet and active child. He already knows the letters of his name and can count up to ten. Two years ago that Paulo has no more severe seizures. The last serious crisis that he had was in 2011 and he was almost two weeks without walking. He had a stroke in this time. In 2012 Paul has had myoclonic seizures. The doctor exchanged medication five times and finally he doesnt have this type of seizure anymore. Now he is taking oxcarbazepine, lamotrigine and clobazam. The neurologist also prescribed omega 3, coenzyme Q10, folic acid, vitamin B6 and aspirin. Nowadays he has seizure sometimes, especially when it gets excited. Generally and his birthday he has seizures. Paulo is my sunshine, my sunny day.

I have another son, Pedro. Pedro is 6 years old and he is a very smart boy loves Paulo and take care for him all the time. My kids are my life.

 


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