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Junior Member
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Join Date: Mar 2011
Location: Shenandoah Valley, Virginia
Posts: 33
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Junior Member
Join Date: Mar 2011
Location: Shenandoah Valley, Virginia
Posts: 33
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myoclonus, opsoclonus with seizure dx
First of all, I want you all to know that this isn't about a current sufferer, but is about my son, who had myoclonus, opsoclonus with an uncontrolled seizure dx, "dancing eyes, dancing feet". He died at 14 1/2 months in 1980. This is a very rare dx, according to his neuropathologist at Johns Hopkins, and his doc at Kennedy Institute the first they had seen in a newborn. I was told he had been seen by docs from all over the world, because of this syndrome, so I know, at least every stone was turned over. We were blessed to have him placed with us at seven and one half months, after being released from Hopkins after three months with them and three months with U of Md. That's where he was transported due to seizures immediately after delivery. (The birth mother reported excessive prenatal movement-- she would know-- this was her ninth or tenth child. We allowed a pm, requested by his Hopkins doc (we were at home in Virgina at the time) and he said they found what they expected-- microscopic brainstem lesions.
I have many experiences to share, but too much right now-- even though it has been 30 years. Springtime does this to me-- he died 3/28.
I have searched all over to see if anything else had been else has been done or found about this syndrome. Or, God forbid, anone who has been affected by it. I still miss our little prince-- a gift of God to us. Linda
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05-11-2011, 02:36 PM
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