EEG ?s

[JAG10]

I took Philly PA up on her offer to look up Joseph Dalmau. I must admit sifting through medical research is not my forte, I tend to get impatient and skip around too much, my bad.

 

This is recent, 2011. Something that jumped out as interesting to me was the claim that EEGs were typically abnormal. My dd11 has had the staring spells described that have prompted numerous normal EEGs. Even Dr. T wanted to order another EEG on her as recently as a year ago because of the staring spells and I talked him out of it because they are always normal.

 

Anyone else with this staring spells? Anyone with EEGs normal or abnormal...what do you think?

 

https://www.cme.ucsf.edu/2011/slides/MNR11004/06%20Dalmau.pdf

 

Thanks Philly PA! This guy is very interesting.

[PhillyPA]

My son's EEG's were always normal. He too had those staring spells. However, it took a full year before someone looked at the EEG report and said to me, "Well, the first EEG showed some abnormal slowing." No one told me that. All that said was that it was normal. So the EEG wasn't perfect. There was slowing. Perhaps there is a range of normal. Perhaps we as parents have to be more specific and ask the doctors if there was ANYTHING out of place on the EEG. Anything that might be considered a little abnormal. Different doctors have different interpretations.

[JAG10]

That's a great point! They are looking for seizures, right?

 

I wonder if I can go back and get that information...

[PhillyPA]

Yup, seizures. Did you get it at Penn? You can get a copy. I have one on disk. You just have to make a call to the records department. They will make you a copy.

[Tamistwins]

Before we had an official pandas diagnosis my son had an eeg and it was normal, even with him banging his head at that time( tic) it still was normal. Believe me he did not appear normal at that time.

[dcmom]

Both of my kids had 48hr video eeg's during pandas flare, both normal.

[Kayanne]

I'm wondering if regular EEG's won't show anything, but that EEG with the new software from that Harvard Dr. would?

 

http://www.latitudes.org/forums/index.php?showtopic=12796&st=0&p=106371&fromsearch=1entry106371

[MIAS_MOM]

My dd has also had 2 normal EEG's, for the same thing. I was really expecting them to be abnormal, because

she was!

[momcap]

My DS7 had a normal EEG too, even though he was in exacerbation at the time. Previous to the EEG both of his brothers had scarlet fever. DS kept saying his brain felt "cold". Then he went out for recess and spaced out. The bell rang and he just stood there doing nothing, staring into space, while all the other kids went inside. He couldn't/didn't hear the teacher calling him. He snapped out of it when another student was sent to get him, and grabbed his shoulders. The school principal called me to ask if he ever had seizures before. Very scary! And a normal EEG??! I was told the EEG is like a snap shot, and if nothing abnormal is going on during the time of the EEG that doesn't necessarily rule anything out. Doesn't that sound familiar? Ugh!

[JAG10]

My dd had staring spells during the EEGs and they still said they were normal.

 

I don't know about the slowing though, I'd have to investigate.

 

In kindergarten, my dd would get "hyperfocused" on her work choices (it was montesorri) and would not hear the stop signal. The teacher would ring a little bell and they were all supposed tol stop, but she wouldn't until the teacher physically put her hand on her shoulder as a prompt, auditory prompts rarely worked. They could say her name over and over and she would not break concentration on what she was doing. So much so, I was frequently questioned about her hearing. OCD is so much broader than washing hands and checking. They continuoisly get stuck, stuck in feelings, in interests, in worries, ect.

[EmersonAilidh]

I've gotta say, EEG's are one of the few things I do trust in the neurological community. If they were "typically abnormal" then it wouldn't make sense for people with seizures that aren't petit mal to get diagnosed. I mean, good luck finding someone who has tonic-clonic seizures with a normal EEG. Every doctor I've asked, & there have been QUITE a few, has said that about 2-4% of people without Epilepsy will get an abnormal reading. My EEG in November 2009 was insanely abnormal & I've had a whole #### of a lot of trouble getting someone to duplicate the test specifically because they all say "Well, you're probably in that 2-4%", which is definitely a wide enough margin to refuse to redo a simple-enough test. -_____- (Can you hear my sarcasm?)

 

The paper says that EEGs are typically abnormal within that specific condition. I wouldn't take that as a blanket statement. Epilepsy isn't something like P.A.N.D.A.S. or Lyme. There are certainly still mysteries but I don't think that taking a normal test result as abnormal is a good idea.

[PhillyPA]

Everybody's body is unique. That is why when someone gets blood work done, there is a range of normal...and what could be very normal blood work for one person could be very abnormal blood work for another. There is a wide range. Just as I have a very low blood pressure and pulse -someone else's normal would be high for me.

 

So, when you think about what percentage of the population actually has an EEG - how many do you think that is? I would guess that is a low number. Most people will go through their entire lives without an EEG. (Unlike blood work, most people will have blood work) So really, if I were playing devil's advocate, how do they really know what normal is? I read someone on this board say an EEG is just a picture of a particular moment in time. I though that was great.

 

No one wants an abnormal EEG. Even if we are all confused that we are seeing abnormal behavior. We don't want an abnormal EEG. Usually, scary things come from abnormal EEGs, unless they don't, in which case it may be someone's "normal".

 

Emerson, you are right, seizures are hard to miss on an EEG. Although it does happen. A neurologist told me that sometimes there are seizures deep in the brain that an EEG will not pick up. In these cases, they will either offer a patient a scope up the nose to detect a deep brain seizure (it has its risks) or they will put the patient on a drug like Depakote (is that the right spelling?) and see if it works to stop the patients symptoms.

 

I am not so sure that I do trust that an EEG shows that something is amiss in the brain. Or even an MRI for that matter. If they are both normal and there are obvious symptoms of a personality change, what does that tell us? On the hopeful side, it tells us that there is no brain damage. On the pessimistic side, it tells us that human science has not caught up with human pathology.

Edited March 28, 2011 by PhillyPA

[mkur]

My son has had 2 MRI's, 1 CT scan, 2 reg EEG's, 1 EEG with a sleep study, 1 3-day ambulatory EEG at home, 1 1-week video EEG in hospital. All normal. He is a classic pandas - high titers 900's - CamK 167 - sudden onset 2 weeks after strep infection - scarlet fever at 4 yr of age. Because of this the neuro refer us to the psy who refer us to neuro again and again and again. He has seizures/panic attacks/movement disorder/(or whatever you want to call it-really don't care at this point-just fixit). You can see it. I know he has partial-temporal lobe-complex seizures and they affect his amygdala but I can't prove it - too deep to measure. We have to see a neuro because Keppra works for him now and only neuros prescribe Keppra.

 

I have a love/hate relationship with Keppra. It makes him mean, takes 3 days to see effect and it is all or nothing. But we have no choice because when he is having these seizures every 1/2 hour 24/7 all you want is for them to stop and then I am sooooo thankful for Keppra ... but then I will forget when I have to deal with the side effects until the seizures break again.

 

I know a TS kid who had absences seizures and grand mals which never showed up on a EEG. His father is a Dr and his mom is a RN and they could not get it on tape. He outgrew them by adulthood.

 

I do not understand how we can shoot moving missiles out of the sky, map gas/oil pockets miles under the crust, land on Mars etc and still cannot record a seizure in a stationary brain of a known substance, at a fixed depth and up close. Ugh...........

Edited March 28, 2011 by mkur

[Wilma Jenks]

It seems that all of these PANDAS kids have normal EEG's.

My child's EEG's were abnormal. She probably has more going on then just PANDAS, I guess. Isn't there any PANDAS kids that have abnormal EEG's?

[peglem]

It seems that all of these PANDAS kids have normal EEG's.

My child's EEG's were abnormal. She probably has more going on then just PANDAS, I guess. Isn't there any PANDAS kids that have abnormal EEG's?

Well, my kid has abnormal EEGs, but no seizure activity. But, she's pretty messed up and at this point, I really don't have any idea what's going on. The only thing I know for sure is abx makes things better so there must be some bacterial agent causing those things that improve w/ abx.