I just found them via Google and there are in the Netherlands. Frequently together with organisations about epilepsy. I just googled for the syndrome.
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I just found them via Google and there are in the Netherlands. Frequently together with organisations about epilepsy. I just googled for the syndrome.
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Yes recurring seizures like an Epilepsy is very normal for patients with Ohtahara syndrome. It breaks my heart every time my daughter has one :( Another common occurence is pneumonia :( Pictures below were taken the last time she had pneumonia
As a mom it crushes my soul seeing my baby like that but I have to be very strong.
I can imagine how it feels. I will.write and share and hope people respond and someone out there turns out to be a big help.
💕☘
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Thank you so much wakeupkitty! You are all good people and I hope everything you're doing to help me comes back to you a hundredfold:)
Take good care of yourself! Moms are easily forgotten. I hope it will help 💕☘ for all of yoy.
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