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New and confused still....

Thu, 06/11/2015 - 18:38

Hello,

I'm new to the epilepsy community (Though i been reading about it for over a year) My 2  year old son (will be 3 in mind July) Was finally officially diagnosed with epilepsy (They started around the beginning of 2 but i did;t realize it until it progressed) 

The neurologist I'm seeing (The only one i know that will take our insurance) has made it clear he's more concerned about his lazy eye (which we had checked) and his speech not being where it should then he is his seizures (I wish he would just focus on his job) After a 2hour EEG A MRI with and without contrast and some blood work he came and said he had a rare form of seizure and that it was genetic. Then said it was absence seizures. 

What has me so confused is that i read the absences seizures ( and other types on the list) and to me they look like complex partial ones (or a mix of some maybe?) and since sometimes he gets scared and runs to me before he has on I'm pretty sure he's having some kind of aura. 

I have videos of some i recorded and the doctor didn't bother to look at them (I brought it cause although it's more common for him to have many a day sometimes he has only few without so many symptoms)

Typically He will

freeze what's hes doing on the spot (or sometimes get scared and run to me before one)

His eyes will roll up,

his eyebrows will twitch up and down,

he sometimes makes hissing noses or says words over and over or makes other sounds,

he usually fiddles with his toys or clothes (sometimes bites his hands or stabs himself with a fork or take off his clothes)

He will keep walking while having on (even on steps) and sometimes hell back up a lil and fall on his butt, sometimes just freeze where he is (it changes)

He gets dazed sometimes or looks alil lost (but not always) after them and even falls right out into a sleep (especially after back to back ones)

He will then have them in his sleep eyes open suddenly rolling up and either becoming real stiff or fiddling with or without noises (I noticed when he sleeps best not to move him or he will keep having them if hes disturbed)

I'm so confused as to the differences like.... It doesn't sound like just plain absence ones to me? Am I wrong? it sounds like a mix al lil to me. But talking to the Doc seems almost impossible and he dismisses my seizure concerns and always changes the subject to you need him in speech therapy and to fix his lazy eye (on i was waiting to do speech therapy till his episodes were under control 2 we saw a eye doctor who suggested he may need surgery but I thought it be better to get his seizures under control before surgery) and the Doc keeps saying no do the other stuff first?

I'm so confused by all this and figured maybe someone on here can give me some insight on what it sounds like to them or why they my agree with the Doc?

Like I said I have quiet a few videos but he wouldn't look at them :( He starts Keppra today aswell.

Thanks for any input! I would upload some videos but i don't know how.

Comments

Thank you for all the

Submitted by moshibear01@gmail.com on Fri, 2015-06-12 - 12:40
Thank you for all the information! I will try to find another neurologist that my insurances is willing to allow but I believe they told me last time with the insurance I'm on that that was "the best" place. As far as his MRI goes he did one with and one without contrast and said it was clean.... All he would say id that he showed seizure activity on the EEG then wrote absence epilepsy down. But wouldn't explain to me why he thought it was absence and dismissed my partial simple/complex theory especially when they make him tired to the point of passing out after a few back to back and that he's not always alert afterwards but sometimes foggy looking (doesn't always pick up where he left off) Sometimes when he's staring off he'll wine or just look upset and I'll ask him if hes ok and he will shake his head no then within seconds he'll start having one.... other times there to quick he doesn't notice it coming.What confuses me is trying to see where his seizures seem to fit in (like what they sound like) I mean watching him during the day IMO they look like the complex partial mixed with either simple (cause sometimes he gets aura) or maybe absence BUT I am not understanding his nighttime ones.... there not just as he's sleepy or falling asleep they can be triggered when he's asleep if disturbed like moving him from the couch to the bed his eyes will spring open roll up twitch and he'll do little movements like fiddle with his fingers or pull down his shorts some. From what I read I didn't see partial complex or absence have nigh time disturbances like that?

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