Unknown cause seizures

[Mahi84]

My Son having seizures When he was 7 months old in August 1st 2014 eye rolling moving to left. We went to A&E we stayed 2 weeks However all tests came back showing nothing brain Scan MRI and EEG All normal, Sometimes head turns to left too when it's strong. His seizures Always to left.Eye rolling moving to left continued but we were able to control them without medication, We were doing a mixture of Chinese medicine & acupuncture and homeopathy. His seizures was every week or two week, In October We were told to start keppra medication but he was really improving and we didn't want to start Keppra because of the side effects, However after having a 3 week free spell (we thought we were out of it) on New Years 2015 he had seizures on and off all day. This had never happened before, this continued for two days resulting in his left arm and leg not moving. We call doctor he told us go A&E about his left arm and leg sided weakness, we went to A&E they told us to stay in case he has stroke or bleeding in back of his brain we did brain Scan that Night it came back normal nothing (Thank God for that)
We were in hospital for 1 week his
Consultant Want him to do MRI,MRA, EEG, Lumbar puncture while they did all tests again. They started his keppra. Thank god after a few days he started moving his left arm and leg again. The tests all came back normal  Lumbar puncture showing nothing again, so they said they don't think it's epilepsy. For three weeks he improved on the keppra not one seizure, he started crawling for the first time and again we thought this thing was over. Then suddenly his arm stopped, he had a mild seizure with it. Since then his arm and leg keep paralysing and he is having siezures with it to. It's become so regular now, almost everyday and for long periods. He is spacey and stiff through his whole body when it happens. It's so hard to see. When he plays happily and he is ok he really improves and is such a happy boy, but this is starting to get more regular and it's really distressing for him, he seems very uncomfortable and upset when it happens. We don't know what to do, his Consultant say put keppra dose up we did still not improving,and the neurologists still can't tell us what this, were waiting for genetics blood test, He's quite delayed on a lot of things but he is crawling and holding and standing when he's ok. his 14 months, We don't know what to do anymore. Has anyone had Similar experiences Pls Help Me

[itsh]

I can understand wat u r sayin since even my son z goin thru dis....hw z ur daughter doin now...it is such a catastrophic disease....can h suggest me few good paediatric neuros who r specialist in epilepsy....Also wud lyk to know if ur daughter ws able to live a normal life wid dese seizures n hw long it took to control IS...

[Deb179]

Hi to you.
First of all, i hope you check back...I know how painful it is to watch what you see. I agree with teddybear...get a second opinion.
I too am not a doctor, but have had 18 years experience with my daughters seizures.  My daughter was diagnosed with infantile spasms with intractable myoclonic seizures ( uncontrolled) I am not in Any way saying this is what's going on with your little one,  what you describe is what I see in my daughter. Her seizures are all in her eyes now but when younger involved arms, or shoulders, or legs. Her eyes roll up, flutter ( many quick rapid blinks ) also going to the left. I see brief seizures each day with episodes of clustering less often.   It seems to take a life time for doctors to find a reason, when we need answers now.
My daughter developed normally until the seizures began, I then began to see across the board delays. Not sure if drug, seizure or other related. I was left in the dark many years ago basically having to figure out what was best for her on my own.
Keppra is a good drug...for what you describe... all anti seizure meds come with some pretty big risks. My daughter was very sensitive to the drugs....in the early days with her each new drug we tried only brought out a different type of seizure.  Eventually I found the ketogenic diet ( was not offered to me as a choice ) i insisted they let me have that chance.  That was our answer at the time...it broke the mess with the many different types of seizures she was having. She was put on Depakote only for maintenance with the diet ( after being weaned from 5 different drugs)  depakote held her steady for many years.
I don't tell you any of this to scare you...I know how lost and hopeless you feel right now. I want to offer my support as I know what it meant  to me. Ive connected with many parents that live my life. ..they still keep me facing forward