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Mika

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  1. Hi, My 13 year old daugter has regular ”seizures”. They appear currently every six hours when she is awake. EEG is normal like every other blood tests etc. POTS symptoms exist but they are quite mild nowadays. Everything started two years ago due to serious virus infections. At the beginning she lost her ability to walk and even sit. Then arrived movement disorders and short convulsions. After eight months the convulsions got worse and also terrible pains in legs came into picture. At the longest the seizures lasted even one hour! She has been feeling some weird feeling in her legs since very beginning so I think that this rhythm for seizures was generated already then eveng though visible convulsion were not seen at the beginning. After one year nightmare we decided to try IVIG to help the situation. The first high dose trial took all the pains away and broke the rhythm so that convulsion became very short again but they appeared quite often. IVIGs were continued every 5-6 weeks total 6 times. Every treatment made gap between seizures longer and now we are in the situation of three seizures per day with that six hours rhythm. Her physical condition is perfect and she can otherwise normal life but needs some help of aduld every six hours. Have anyone experienced similar? Or any ideas to try?
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