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Any One Else Have Jeavons Syndrome And No Relief With Meds
A MyEpilepsyTeam Member asked a question 💭

My Daughter has Jeavons and not only no meds have worked but she's in a mental fog .

posted January 8, 2018
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A MyEpilepsyTeam Member

Oh I'm sorry to hear that, we always knew when she was young(1st grade) that something was off. We called it twinkle eyes and had thought she was cute and had to concentrate, well it turns out she wasn't she was checked out and it was before her 14th birthday when the grand mals started. Yes by that time we had mentioned this to her pediatrician gone to neurologists, ophthmatrist and neuro ophthalmologists we had video of what was slowly getting worst and still no diagnosis. We tried all types of medication and still have no luck with the eye flickering. One of the worst feelings besides my child going through this is that many of the professionals were not willing to listen to me and I left the appointments discouraged and it would take months for me to toughen up and pursue another specialist. Her doctor at Miami children's hospital has seen less than a dozen in his whole career and in Orlando I still remember the drive there I told my husband "she cant be the only child on the face of the earth with this" and we were told she was their 2nd case, and the other child had done fine on meds.

posted January 30, 2018
A MyEpilepsyTeam Member

My son has tried Keppra, sodium valproate, depacote, ethosuximide, but none of thrm worked, and sone if the side effects were awful. He has been on lamotrigine for a year, and this us the only med that he tolerates and has been shown to reduce the seizures on his last eeg. When outside in sunlight he still gets the eyelid flutter, and his head deviates up. I am not going to try any other meds for awhile, as the year spent trying all of the different meds was very difficult.

posted August 15, 2018
A MyEpilepsyTeam Member

My daughter is 9 and just got diagnosed a couple months ago. Does your daughter also have absence seizures? Our new neurologist told me that he has only seen a few cases as well - we are in Hamilton ontario canada and there are no meds to help with the flickers (that's what we call them), but the 2 different meds he suggested have so many bad side effects and he said will only work if She is also having absence seizures ( one of the meds he suggested is not even approved in Canada for kids under 16...so no thanks).She had an eeg when she was 5 and the neurologist told us it would go away by the time she was 7 or 8...we just had a 5 hr eeg a couple of weeks ago and are awaiting results. ** edited to add*** results of the 5 hr eeg- neurologist said he may have seen a couple of absence seizure, but report stated no absense seizure. He only recommended the med lamotrigine (not approved in Canada for kids under 16) to possibly treat the absense but he said nothing will treat the flickers. We questioned diet or other possible natural solutions- they said nothing will help and i shouldn't Google info or take info from epilepsy ontario website. They gave us a week to think about starting her on the meds and when we declined, they advised us that they will not need to monitor her and we need another refferel if we want another eeg....we have now gone to a naturopath and have tried to eliminate processed sugar, adding probiotic and fish oil....flickers are still occuring though

posted March 31, 2018 (edited)
A MyEpilepsyTeam Member

My daughter was diagnosed last month with Jeavons, she’s 4 and started having (blinkies) in March. We’ve only tried ethosuximide at this point and haven’t seen much relief. Shes had bad stomach aches and headaches from the medicine. We will updose 2 more times and move on to the next. I hope we all find some answers for our babies soon.

posted June 5, 2018
A MyEpilepsyTeam Member

My daughter was diagnosed with myoclonic jerks at around 2 years old. She was placed on clobazam and epilim to control them. We saw an improvement with her only having them when really tired. About 12 months ago I noticed her eyes flickering so I went back to the doctor and we arranged for another eeg. Initially when diagnosed light didn't bother my daughter but during the new testing with lights she reacted really bad and they have now said she is photo sensitive. They are going down the path of Jeavons syndrome. My little girl is 5 and most afternoons she cant even open her eyes as she just continually has seizures. They last for around 4-5 seconds. They have increased her meds twice and still no effect. My heart breaks for her.

posted May 23, 2018

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