Mika Posted January 7, 2018 Report Share Posted January 7, 2018 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? Quote Link to comment Share on other sites More sharing options...
TCP Posted January 7, 2018 Report Share Posted January 7, 2018 I'm sorry to hear about your daughter.I have heard about seizures with Chiari that is linked to EDS and POTS. I found this: https://www.epilepsydiagnosis.org/epilepsy-imitators.html Quote Link to comment Share on other sites More sharing options...
Missy M Posted January 7, 2018 Report Share Posted January 7, 2018 (edited) You might ask her physician to do a blood test to check her electrolyte levels. There’s a simple blood test for that. My niece and I both have dysautonomia. In our situations, we get extremely severe, debilitating muscle spasms if our potassium levels drop too low. My niece’s family thought they were actual seizures and still refer to them that way (they can be that bad). Fortunately, once we each became aware of our body not keeping our electrolytes in balance we’ve been pretty mmuch able to stop the problem bby eating high potassium foods daily. This may not be what’s going on in your family but could be worth exploring. Edited January 7, 2018 by Missy M Typo plus wanted to add a sentence for clarification. Quote Link to comment Share on other sites More sharing options...
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