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my 9 year old son just getting diagnosed

Fri, 06/05/2015 - 21:22
I really hope any of you can help me understand whats going on with my son. He has been diagnosed with epilepsy and his neurologist said that the activity is coming from the frontal lobe yet the type of seizure activity I have actually witnessed is when he is sleeping and his body jerks..especially in his shoulders. I have read about myoclonic epilepsy but thought that normally happens upon waking and is a general form of epilepsy? He is still getting more testing done so they aren't quite sure what type of epilepsy he has. He states he sees sparkles or colored spots but his neurologist said that he would have epileptiform activity in the occipital lobe which he doesn't. Im so confused :(

Comments

Thank you so much for

Submitted by mommarunner on Sat, 2015-06-06 - 22:41
Thank you so much for responding!  Strange episodes have been happening for a while now but they could have been happening for years but i just haven't noticed. My son started sleeping in my bed and this is when i finally witnessed these events. One night he woke me up with head shaking and teeth chattering episodes that lasted about 5-10 seconds x 3. Another night he screamed out and kicked his legs like he was running. Every night he jerks and sweats and early in the morning another time his body was vibrating! I knew somthing was wrong and brought him to our children's hospital ER. They did a full workup and I was the one to request an eeg. They did 2 and both came back abnormal with epilepiform activity. We are waiting for a video eeg and MRI. He was diagnosed at 6 with a metabolic disorder called homocystinuria and seizures are a complication so they are trying to figure out if this is the cause. I'm so worried :(

If tests are still being done

Submitted by Anonymous on Wed, 2015-06-10 - 17:26
If tests are still being done then wait. When the neurologist said activity is coming from the frontal lobe he is stating in the EEG he has looked at there are abnornalities coming from that area of the brain. If all his seizures have happened while he is sleeping. He could have nocternal frontal lobe epilepsy. A person can be diagnosed with 1 type of epilepsy but have several kinds of seizures. I have absence seizures, focal seizures grand mal seizures. But almost every seizure I have had in tha last 20 years have been what today are called simple partial seizures.SO please relax and waite for the neurologists diagnosis. He will prescribe a medication he knows will help control your sons seizures

Thank you Joe for responding!

Submitted by Anonymous on Fri, 2015-06-12 - 15:09
Thank you Joe for responding! I am feeling much better now :) the hospital called and is getting my son in for  an overnight eeg and MRI on the 24th so we will have answers soon 

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