Esther Passos Ribeiro de Oliveira

Esther was born in 2010, march 5th, and now she is 2 yrs. We have an almost nine yrs. old healthy son who loves her long before she was born. We knew nothing about sz nor Aicardi Syndrome until then. There were moments we felt like we got run over or something like that, but than we did a lot of researching and specialists meetings, and now we know we are not alone on this road.
To make a long story short the AS was diagnosed in the age 4mths, with short corpus colossus and microgeria on the right side of front temporal lobe, where the sz start (video EEG during 24 hours). She´s been on phenobarbital, topiramato, carbazepin, vigabatrin/Sabril (for over a yrs, slooly weaning off it for the last 4 months). Still on Valpakine, Nitrazepan and Ospolot. Ospolot isn´t available in Brazil, but we can order it from Germany. Until now she is having a pretty good sz control and he may have 0-2 sz a week. We´ve been through a lot of worries and this is our best moment ever since de diagnose.
She has had breathing complications and have had pneumonia 2 times, one of them with sepsis and intubated. We feel like these “events” cause regression on her development. By that time, we took her to the Hospital and she was almost walking (2011/oct.), and had a regression on the march, which took more than 5 more months of hard work to reach again”.
For the second time now our neuro pediatrician talked about brain surgery, because she still has one or 2 sz a week. She is on physiotherapy 5x/week; T.O. and Speech Therapy 2x/week. She still having instability on her walking, and the progress is slow. Esther is making progress on social skills, her playing and exploiting the toys, and her movements. She doesn’t chew very well, but she feds herself with a spoon and holds the chicken leg to chew on it, drinks from a little glass, loves to bath and swim. She plays and dances. Her favorite TV show is “Backyardigans”.
About language, she is on baby talk sounding “te te (Esther), pa pa (daddy), Não (no no), ma ma (mom), pão (bread)”. She plays with her toys for a while and does a lot of smiling and hugging, dancing and looking in our yes. The whole family and all her doctors and therapists loves her kindly and tenderly and worries about her not being able to express herself, her desires or not having autonomy to tell us things like: I´m thirsty, hungry, happy, hurt, felling pain, felling dizzy, potty , etc…
We are considering keto diet with a specialist, and also checking is she is a candidate to surgery, so we will star a bunch of exams to prep. and to make sure it is the best choice for Esther.
Esther is a beautiful, kind adorable, and brave little girl. So this is our “trip to Holland” and “Holland” is what we love, let me say it, not Italy!!! Nothing against Italy… We feel we have the privilege to visit Holland and see all the unique beauties there.
Feel free to contact us. We´d love to know you and share our experience, some medical articles, technics for teaching potty training, or any other useful information.
Raquel, Paulo, Vítor & Esther (AS 2 yrs.)