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completely confused :(

Thu, 06/25/2015 - 10:39

Topic: Diagnostic Dilemmas and Testing

I posted a few posts down regarding my 9 year old son. He had 2 eegs which showed epileptic activity during hyperventilation and photo stimulation then the 2nd eeg showed it was coming from his frontal lobe. He also had a sleep study that showed spikes throughout the study. He was then diagnosed with epilepsy and was going to be put on medication. He has a lot of night time myoclonus so the dr. decided to do an overnight eeg before putting him on the meds just to get a clearer picture. He also had an MRI yesterday. Well good news is that his MRI came back normal and so did his overnight eeg. Now the dr. is saying he doesnt have epilepsy and for me to just watch him and if things get worse..give her a call???? does this make any sense?

Comments

Getting a thorough diagnosis

Submitted by AMPetti on Thu, 2015-06-25 - 11:59

Getting a thorough diagnosis is a pain in the butt. I've been without answers for several months now, first it was epilepsy then it was just psychological, and now the doctors are baffled. (I'm currently in an EMU) it's difficult, but if you need to switch doctors then do so, it's not worth waiting for

OK.... IS your sons doctor a

Submitted by just_joe on Thu, 2015-06-25 - 18:02

OK.... IS your sons doctor a specialist in epilepsy?? I had 20-25 different EEG's all come back normal so the doctors could have said I don't have epilepsy because the EEG's were normal. However I still had seizures. Several different kinds of seizures. If the MRI came back normal then they didn't see any groth deformaties or things like scar tissue. Which is also great. However if there is a EEG that showed abnormalities comminf from the brain like you posted and the neurologist was going to put him on medications , My questions would be why yesterdsay you wanted meds and today you don't. With 2 EEGS along with a sleep study showing spikes and waves then he has abnormalities which can and do cause seizures. You do need to see a neurologist that specializes in epilepsy and take all the tests with you and talk to him about everything your son has gone thru. All it takes ti diagnosis epilepsy is 2 seizures. No EEG needed or other tests needed. You see I've been there done that.twitches in my hand or a wierd feeling in it. Day dreaming in class. I hope this helps and your son gets the assistance he needs. Joe

His dr is a pediatric

Submitted by Anonymous on Fri, 2015-06-26 - 19:38

His dr is a pediatric neurologist but seems to specialize more in childhood stroke than epilepsy. We see my son's metabolic dr in Aug so I am going to ask him if we should get a second opinion. Its very frustrating to be told your child has epilepsy and worry for 2 months then find out its not when he clearly had epileptic spikes and waves on his eeg...twice for that matter! Not to mention the severe jerking and spasming he has throughout the night. ..seeing sparkles and colored dots. It boggles my mind! She explained that the spikes he has need to get past a certain frequency point for them to be classified as epileptic. His are right at the edge of being epileptic or not. She said she doesn't want to diagnose him with epilepsy because she doesnt think he has seizures. Does this make sense?

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