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My daughter has PS

Sun, 10/15/2017 - 16:27
Hello! I'm writing from Romania so please excuse my writing mistakes. My daughter was diagnosed with PS when she was 2 years and 10 months. Now she is 4 years and 4 months. Her first seizure was prolonged, 25 minutes, started from sleep with vomiting, than she moved her eyes on one side and slowly losing her conscious. Her EEG was very bad, many spikes during sleep but awake too. For one year we didn't start treatment, because even though her EEG was bad she had no significant seizure. Once a month, when falling asleep she would have a little tremor, lasting a couple of seconds and that's it. After one year she had 4 seizures in one week, but were very different from the onset one: they would last 2 minutes top and she would jerk one hand or one foot at a time, once she started screaming that she is on pain and on the way to the hospital she started vomiting. Since then we started treatment with Keppra (even though we can't find it in Romania so we have to order it from another country) and her EEg improved significantly and she is seizure free for 4 month now. I am a little concerned because her currant neurologist says that it isn't PS and it might be a genetic epilepsy form, but from what i've read about this syndrome she fits the description. Her last EEG shows that she has spikes on her central and temporal lobe, and before starting the medication she had spikes on the occipital parietal frontal lobes. So, is there anyone who has this diagnosis and fits my story so i can breath a little? Thank you

Comments

My daughter has seizures in

Submitted by relle3217 on Wed, 2017-10-18 - 21:40
My daughter has seizures in her sleep as well and is on Keppra. Please, I invite you to read about our journey on the GOFUNDME website. Here is the link.  https://www.gofundme.com/lolos-fight

Do you have any access to an

Submitted by Amy Jo on Sat, 2017-10-21 - 12:07
Do you have any access to an epileptologist, a neurologist who has additional training and specializes in seizures? Is the original doc who diagnosed her the same one you see now? Maybe a consult with the first doc would help. PS is better known nowadays but reading EEGs well depends on experience and a lot of training- EEGs of the same condition can be different as a child grows, the brain changes a lot during this time.

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