back to square one... I hate this.

[emma]

So, long story short, the EEG came back clean.

They tried to steer us in the "behavioral" problem direction instead (which, I guess since he climbs the walls in those tiny rooms during the apt, I can see why they'd think that, even if that's not how he acts anywhere else - and he really DOESNT act like that anywhere else.... they just make him sit for long periods of time so by the time the doctor gets to him, he's bored and ready to go do stuff and has to keep sitting there and it's hard when your a little kid to do that.)

Anyways - basically the gist was... go back to your PCP - rule out blood sugar and migraine issues, his thyroid was slightly low so talk to the PCP about that (it was with in normal range, but on the very low end of it. - a genetic trait for our family too, so we'll talk to his PCP about seeing if a little synthroid helps reduce some of the symptoms.)

Anyways, we know his blood sugar was low after eating, so he may also have hypoglycemic issues and need to rule some of that out too.

basically, he's having "seizure like" symptoms, but they are "non epileptic" seizures... so they won't officially diagnose any kind of "seizure" syndrome until everything else is ruled out.... which they won't do, and won't follow up with us on.


she basically said to track everything for 6 months, make all the changes to his diet and lifestyle that we can to see if we can improve symptoms and anything that our PCP might catch or think of to try.

But, she basically said that if the EEG isn't spiking, they won't diagnose with a epileptic seizure disorder, or any type of seizure disorder at all - that if we still think he has "seizure like" symptoms, to follow up with a neurologist for further ideas... but I have to go back to my PCP for a different neurologist referral because their seizure clinic *only* deals with seizures that show up on EEG's.

She also said that it's possible our family has it's own "inherited trait" disorder that there's no name for it.


Other than that - she said to rule out behavioral and psychological issues. (which we have for the most part, which is why this is so frustrating to get tossed back and forth from one doctor/specialist to another with no answers.)


She said and I quote "if it doesn't show up on an EEG, it's not a seizure" - but, she then did say things can manifest "seizure like" and be syndromes or look just like seizures and react "just like" seizures, with out the EEG seeing those - but they don't consider those epilepsy, and considers them seizure "behaviors".

I'm a little confused, but back to the PCP we go to rule out migraines, blood sugar and thyroid issues, and maybe see if we need to see an endocrinologist...

so - now I schedule an APT next week... this is starting to get annoying, especially with how much school he's having to miss for all these doctors apts and evaluations that aren't actually "going" anywhere.

So, we have the same answers as before "seizure like symptoms and manifestations" and no real answer.

[Nakamova]

"if it doesn't show up on an EEG, it's not a seizure" -- WRONG!!!

It's too bad she's ignorant about the relatively high incidence of negative EEGs in folks with definitive epilepsy diagnoses. It's a shame she doesn't know that some seizures originate too deep in the brain to appear on an EEG. Sounds like you'd be better off with a more informed epileptologist anyway.

I do hope the dietary changes help, and your son's health improves, but if his symptoms persist or worsen, don't be afraid to be aggressive in discussing this with your PCP and getting another referral.

[emma]

"if it doesn't show up on an EEG, it's not a seizure" -- WRONG!!!

It's too bad she's ignorant about the relatively high incidence of negative EEGs in folks with definitive epilepsy diagnoses. It's a shame she doesn't know that some seizures originate too deep in the brain to appear on an EEG. Sounds like you'd be better off with a more informed epileptologist anyway.

I do hope the dietary changes help, and your son's health improves, but if his symptoms persist or worsen, don't be afraid to be aggressive in discussing this with your PCP and getting another referral.

We have an apt next week and we'll rule out blood sugar issues and consider seeing if we can get him into a different neurology clinic that doesn't just specialize in "seizures".

He's got nervous "ticks" and flinches - those don't cause spikes on the EEG - but he still has no control over them.

So, it's a neurological disorder no matter how they are manifesting exactly.

as long as he does okay in school and we see improvement actively by now identifying his "issues" regardless of what the doctors say - i'll be happy.

my main concern was making sure he didn't repeatedly get in trouble for "ignoring" teachers when he zones out for a few seconds and misses pieces here and there and the school can accommodate those "blank outs" regardless if he's got an official "diagnoses" or not.

I asked her about that repeatedly and she avoided the subject but finally suggested we see a neurologist-psych and have him tested for learning disabilities.

She also hinted at that maybe he was ADD or he was just bored...
(she obviously didn't see what we did, or what the other doctor did...)

Anyways - we'll see what happens I guess. I'll admit, I really disliked this particular doctor we saw. ^.^

[davidmc]

We have an apt next week and we'll rule out blood sugar issues and consider seeing if we can get him into a different neurology clinic that doesn't just specialize in "seizures".

He's got nervous "ticks" and flinches - those don't cause spikes on the EEG - but he still has no control over them.

So, it's a neurological disorder no matter how they are manifesting exactly.

as long as he does okay in school and we see improvement actively by now identifying his "issues" regardless of what the doctors say - i'll be happy.

my main concern was making sure he didn't repeatedly get in trouble for "ignoring" teachers when he zones out for a few seconds and misses pieces here and there and the school can accommodate those "blank outs" regardless if he's got an official "diagnoses" or not.

I asked her about that repeatedly and she avoided the subject but finally suggested we see a neurologist-psych and have him tested for learning disabilities.

She also hinted at that maybe he was ADD or he was just bored...
(she obviously didn't see what we did, or what the other doctor did...)

Anyways - we'll see what happens I guess. I'll admit, I really disliked this particular doctor we saw. ^.^

Could the zoning out be absence seizures? Maybe someone else on here would be able to help but I only have simple partial seizures (though my EEGs came back normal and just "generalised slow wave activity" so no diagnosis of epilepsy and only had 2 EEGs so far plus mine usually happen whilst moving, something I wasn't allowed to do during the tests).

[emma]

Could the zoning out be absence seizures? Maybe someone else on here would be able to help but I only have simple partial seizures (though my EEGs came back normal and just "generalised slow wave activity" so no diagnosis of epilepsy and only had 2 EEGs so far plus mine usually happen whilst moving, something I wasn't allowed to do during the tests).

i don't know - we both had EEG for the same symptoms and both our EEG's came back clean. :/

so, I dunno. We will follow up, I'll have an MRI - but they won't do one on him when he's 7 1/2... there's no "point" since it's "genetic" as far as they are concerned... but it's apparently impossible for doctors to totally figure out... yet.

I don't know what to think, I knew his EEG was gonna come back clear - since my family (4 generations now) has these symptoms and no EEG will show activity of spikes, despite symptoms.

So whatever it is, it manifests just like seizures. mostly absence style ones and we HAD them in front of one of the doctors - but the EEG still came back clean.

it left them scratching their heads.

[elizzza811]

She said and I quote "if it doesn't show up on an EEG, it's not a seizure".

It took 3 EEGs (ultimately a 72-hour one) and crashing my car to pick up any seizure potential, and to be believed. They were going the psychiatric route with me too. Find another neurologist. A clean EEG does not rule out seizures.