Abnormal EEG

[Lori Ann]

After reading Emerson's post about her abnormal EEG, I had to ask the question. How many of you have had abnormal EEG results come back? We had an ambulatory EEG two months ago and when the results came back our doctor said that he has a seizure disorder and that he probably did not have PANDAS (titers were decreasing on antibiotics). He was very vague about the type of seizures and when they are happening. He was sure that the behavioral problems we have been experiencing (separation anxiety, defiance, rages) are due to seizure activity and low iron and that the PANDAS (if he had it at all) is so mild it is only responsible for the tics????? This does not make sense to me. Why does every other PANDAS child out there exhibit the SAME EXACT symptoms, but only our child's symptoms are not PANDAS related??? Oh yeah, did I mention that our child was perfectly happy and healthy before he caught swine flu and an URI last fall and he had a positive cam K test? There has never been any signs of low iron or seizure disorder before then. so, I have an appointment with a neurologist at the hospital where the EEG was performed to ask more questions about this diagnosis. I don't expect her to believe in PANDAS (have appointment with Dr. L next month), but maybe I can convince her that the seizures have an infectious etiology and maybe we can treat for that? I have read that steroids can be administered to treat seizure disorders that are caused by infection. Although we are on antibiotics, our doc has refused to do more because he believes this to be such a mild case of PANDAS. (If it were his son, maybe he would feel differently?) I believe that the low iron and the seizures are all part of the PANDAS and we should get rid of the inflammation in his brain first to see if we can solve the other two problems. Wish me luck tomorrow, I hope I actually get somewhere with this doc. Something positive has to happen sometime, doesn't it?

[justinekno]

We have had abnormal EEG's in the past. We went to a neurologist years ago bc my son had an eye tic. The neurologist said that he thought the eye blink was a tic but sometimes it was a seizure. The only way to decipher between the two was when he was attached to an EEG monitor. He was put on a low dose of Topamax which did not change the eye tic. The dr then decided to wean him off of the Topamax after he had several overnight and short term EEG's that read normal. That was three years ago. He said my son would grow out of the tic (he still has it though). We are now treating for congenital Lyme and PANDAS.

 

What did the dr think your son's seizure symptoms were? Did he say what part of the brain was involved? Did he recommend medication?

 

After reading Emerson's post about her abnormal EEG, I had to ask the question. How many of you have had abnormal EEG results come back? We had an ambulatory EEG two months ago and when the results came back our doctor said that he has a seizure disorder and that he probably did not have PANDAS (titers were decreasing on antibiotics). He was very vague about the type of seizures and when they are happening. He was sure that the behavioral problems we have been experiencing (separation anxiety, defiance, rages) are due to seizure activity and low iron and that the PANDAS (if he had it at all) is so mild it is only responsible for the tics????? This does not make sense to me. Why does every other PANDAS child out there exhibit the SAME EXACT symptoms, but only our child's symptoms are not PANDAS related??? Oh yeah, did I mention that our child was perfectly happy and healthy before he caught swine flu and an URI last fall and he had a positive cam K test? There has never been any signs of low iron or seizure disorder before then. so, I have an appointment with a neurologist at the hospital where the EEG was performed to ask more questions about this diagnosis. I don't expect her to believe in PANDAS (have appointment with Dr. L next month), but maybe I can convince her that the seizures have an infectious etiology and maybe we can treat for that? I have read that steroids can be administered to treat seizure disorders that are caused by infection. Although we are on antibiotics, our doc has refused to do more because he believes this to be such a mild case of PANDAS. (If it were his son, maybe he would feel differently?) I believe that the low iron and the seizures are all part of the PANDAS and we should get rid of the inflammation in his brain first to see if we can solve the other two problems. Wish me luck tomorrow, I hope I actually get somewhere with this doc. Something positive has to happen sometime, doesn't it?

[forjpj]

Just went back with dd for follow-up with Dr. L on Friday. She had an abnormal EEG that Dr. L ordered. It says generalized seizure disorder but she isn't convinced. She wants the actual waves to look at herself...so make sure you get that for her. I'm annoyed I almost asked them to give me that, but then I let it slip!! Her thought being an adult neurologist read it. That might not be so in your case, but just wanted to make sure you took her the actual waves. The thought of a seizure disorder on top of pandas was more than I wanted to handle!!

[EmersonAilidh]

ForJPJ ~ The actual wave results were in my records. You don't have to ask for them at the time of the EEG to obtain them.

 

Lori Ann ~ I'm so sorry to hear this about your son! In all honesty I haven't heard a whole lot about seizures in P.A.N.D.A.S. In all honesty up until last night my friends & I used to joke everytime I did something weird by screaming "EPILEPSY!!!!" just because it seemed so completely implausible, but it kept getting brought up over & over. By the time Dr. G brought it up in July, I was so over it. His proposition was that when I randomly felt the sensation of "waking up" without having any recollection of falling asleep, I was having Petit Mal seizures. I will admit that my lack of faith in doctors is probably detrimental, but I looked him in the eye & told him no. I pointed out that Petit Mal seizures wouldn't last for hours at a time, & that with the overwhelming stack of Narcolepsy symptoms (& genetic predisposition), it was just plain silly to pursue something like Epilepsy that could be explained, along with SO many other symptoms, by Narcolepsy.

Now, I still don't think that blaming my passing out on Petit Mal seizures is right, but seeing those results last night scared the absolute living H### out of me. "Epileptogenesis is a series of events that occur between the event that causes Epilepsy & the first spontaneous seizure". That was last November & now I just feel like a ticking timebomb because it hasn't come yet. I'm supposed to be driving in February. UGH.

 

My advice to you is simply... Don't listen. Some might disagree with this but I would push on until you at least learned more about the possible seizure activity. At least figure out what kind they are. I've learned not to bother trying to change doctors; there's really just not much point. As impossible as it sounds it might be in your best interest to just deal with his lack of acceptance of P.A.N.D.A.S. just to delve into the "General Seizure Disorder" more. I'm not saying to tell him you don't believe that's what's causing it, but I would just be more concerned first with figuring out what exactly is going on with the possible seizures than connecting them to P.A.N.D.A.S. right now. Lori Ann, we both KNOW that we're right & there's no doubt in my mind that P.A.N.D.A.S. & seizures wouldn't exist in the same child without some correlation, but for now I would just push on to find out more. Good luck! <3

[Lori Ann]

Doc did not explain much, but thought that the behavior was tied to the seizure disorder. Started ds on depakote, but we have seen no changes at all on this med, which is another reason why I am going to another neurologist tomorrow.

[Lori Ann]

I agree, I will ask for the full report tomorrow so that I can give it to dr. L. So glad I am going to see her next month!

[Lori Ann]

Thanks for your input Emerson, for a teenager (I'm a high school teacher, I should know), you are very bright and articulate. I think you are right about the doctors and I think I have the right combo now. I am seeing Dr. L next month and already have the pediatrician on board to work with her here at home. Looking forward to moving in the right direction. You are doing a good job taking care of yourself! Remember, your gut feeling is almost always right.

[tpotter]

My son definitely has abnormal brain waves in the fronto-temporal lobes. Because of that, we initially thought that it was seizures we were dealing with, because fronto-temporal lobe seizures will certainly explain the rage attacks, impulsive behavior, and some other things going on. That was when he was 8 years old, and until he was 12. He is still on anti-seizure meds, and Dr. L. initially agreed that it was that we were dealing with instead of PANDAS (for which we already had a dx.) She put him on a 2nd seizure med, both of which do seem to help, because they are mood stabilizers, too (so which is working?) She ordered another eeg while he was hospitalized at Gtown (brought in through the ER, even though we live in PA), and it was negative (although she saw a rage attack on the video monitor.) She then gave him IVIG, and later PEX which helped immensely.

 

Personally, what I think is going on is that there is definitely abnormal brain activity (it's been documented 6 times, and some for extended periods,) but the behaviors have NEVER shown up during the abnormal brain waves, which happen extensively, and all on the fronto-temporal lobes. In other words, the abnormal brain waves are a separate entity than the behaviors!

 

Yes, he's still on antiseizure meds, because I am afraid to take him off right now (they're not hurting him, we actually saw his moods get worse when we took him off them in the hospital,) but I think they are helping control the moods, rather than seizures.

 

Are they caused by the infection that caused the PANDAS? Are they immunological (he is diagnosed with immune deficiency?) Are they caused by the inflammation in his brain? I really don't know, but we did have a 2nd neurologist, who understands PANDAS, also question whether they are truly seizures. One thing for sure...no one is calling it Epilepsy (in which the behaviors would clearly be related to the abnormal brain waves.)

 

Dr. L. has definitely seen this before (at least in my son), and I suspect she's seen it other times. I would definitely listen to what she has to say about it.

[EmersonAilidh]

TPotter - You bring up a really good point when you asked if the abnormal brain waves could be caused by the same infection as P.A.N.D.A.S.

I've been reading about Epileptogenesis & I keep seeing that it is caused by traumatic brain injury, stroke, infection, brain tumors, & neurodegenerative diseases. Although I'm sure some doctors would be quick to tell me otherwise, I'd like to think that I would be aware of any physical brain trauma or strokes. The two things that I keep thinking of are...

 

The idea that P.A.N.D.A.S. causes brain damage. I know that it's suggesting external physical trauma, but if chronic P.A.N.D.A.S. does exist after all & those antibodies have damaged my brain over the years, could that be a contributing factor or cause? I think that "neurodegenerative diseases" kind of falls in this train of thought. Could untreated P.A.N.D.A.S. wreak more havoc in some than we initially thought??

 

& also, the idea that an underlying infection is responsible for P.A.N.D.A.S. I know for a FACT that I don't have a brain tumor (incompetent as he may have been I refuse to believe that all those MRIs, biofeedback sessions, & God only knows what else wouldn't make my old neurologist aware of that), but what exactly is an infection in the brain?? Is this the kind of thing that we talk about when debating inflammation vs. underlying infection?

[peglem]

Another abnormal EEG here. We did an 8 day VEEG, lots of abnormal activity, but no seizure events, even during rage attacks. But, Allie did have these things that looked like seizures where she would pause w/ her mouth open and blink her eyes rapidly for about 15-30 seconds. We put her on lamictal and those went away, and it also helps stabilize moods. Although...when PANDAS attacks, her mood is still not very stable.

 

What I keep hearing from the epilepsy crowd is that neurologist are not the ones to see for epilepsy (although I would make an exception for Dr.L). You should go see an epileptologist for seizures. I actually saw a prominent neurologist at the local children's hospital who reported a very abnormal EEG (just the 45 minute one) as "normal for these kids". Glad I got a copy of those records...it really ticked me off! Of course its normal for abnormal kids to have an abnormal EEG! Why he would investigate this for "normal kids" but not mine? Ugh, hate that attitude!

[Suzan]

My dd7 had seizures starting around age 3 (probably longer but that is when we noticed after she became more verbal). She would stop and stare for 5-10 seconds. She was having 100's a day but we could only see them after they became long enough. Her seizures went away after she went on a gluten free diet. Her last EEG was normal. Her seizures were catagorized as generalized seizures.

 

Susan