Very confused, could Neuro be wrong?

Andrea - posted on 03/31/2012

It is possible something has changed...but it is also possible to have a non-convulsive seizure that is NOT absence (A). My son was diagnosed with Complex Partial (CP) Non-Convulsive Status Epilepticus (NCSE). His seizures look A LOT like what you read an (A) seizure looks like with only some relatively minor differences. His happen to almost all be status seizures, but I have also read of non-convulsive (CP) seizures that are much shorter and more resemble an (A) type seizure. (A) seizures take place in the frontal lobe and have a very specific spike pattern on an EEG. SO...it really could be that the Neuro is correct...that they are not (A) and maybe are a type of seizure that from the outside looks like it...OR it is possible that his seizure activity has changed (in which case I would hope your Neuro would order another EEG...and maybe even a longer video EEG to get a clear picture of what is happening).

Mrs. - posted on 03/26/2012

MIRANDA, YOU are your son's MOTHER! Mothers know best, unfortunately most Americans are brainwashed into looking at doctors as gods and you put your life, as well as the lives of your children in their hands. Obviously, you don't know the truth behind this so-called Medical Industry, but if you want the best for your son, it is completely up to you. Doctors are liars! A lot of them are actually good people who are simply unaware of the agenda they are upholding. I have a very similar story with my 6 month old son, but it was my husband and I who brought healing to him and he was the most severe, baffling case all the so-called specialists at Children's Hospital had seen. They were not even able to make a diagnosis, let alone cure him! We had to stop taking him to evil doctors and promote the healing ourselves.



If you want to be sure if those staring spells are seizures, just try to pinch the tip of his finger while he's in the middle of it & see if he has any response at all. If not, yes it will be a seizure. I know this is a hard time for you, but trust me, you will feel the proudest & best mother ever when you realize your own power! I'd love to share more with you and help you on your journey. If you have any questions, feel free to e-mail at luvspell19@yahoo.com. Blessings.

Elaine - posted on 07/19/2011

Miranda and EEG will only show a seizure if the seizure happens during the test. If they were not able to cause your son to have a seizure it will not show on EEG. My son's EEG only showed some increase in activity when he was relaxing into a more sleep state. All else was normal MRI included. He has partial complex and Tonic clonic siezures. 8 tonic clonic in 1 yr--so far. 1 Aug will be the 1yr mark for the onset of his tonic clonic seizures. As you said I have witness all forms of his seizures and educated myself on what is happening to him. Epilepsy is a very difficult condition, it can change and can be triggered by things the person does or doesn't do. My son is 17 and if he doesn't eat and sleep well he's is asking for trouble. You are doing very well, educate yourself talk to the DR. know what works and doesn't work for your son.

Katherine - posted on 07/19/2011

Maria, our son has seizures that originate in the L Temporal lobe, as well. He has complex partial and tonic clonic, as well (4 Tonic Clonic in 1 year). We just put him on meds. Is your son on meds, and if so do you mind sharing which one?

Michelle - posted on 01/08/2011

well i have petite mal,grandmal and tempralobe seizures

Maria - posted on 01/08/2011

Our son has simlar type of siezures. Complex partial and Tonic Clonic ahd has periods of what look like absence siezures. His siezures originate in the Left Temporal Lobe. Complex partials can look very much like absence siezures and hard to tell the difference.

Michelle - posted on 01/07/2011

absemce seizures as u called them are partial mal seizures

Michelle - posted on 01/07/2011

well for starters if you and unsure u can always get a second opinion from another doctor but certain types of stress cause certain seizures to show themselves i know cause i am a epileptic and have had seizures since i was 3 years old

Charity - posted on 01/07/2011

Hello Miranda, what you have said and discribed sounds like (A) seizures. my own son has been given the same diagnoses 4yrs ago now and that is what he does he will also do like what one doc would call a tick where he hits something repeatedly and stutters sometimes. argue the point and explain what you are seeing in him. theres no denying these and when i thought my son was going throught what youve heard the grand mall seizures although they dont call them that anymore. they kept telling me that i have no proof the eeg would not show it and 3 yrs later is when the eeg finally picked all this up. what you are going to have to do is keep pushing and digging for the truth if you see new seizures tell them write them down and keep record of what his daily activity was when he had them this is proof to them log everything. also keep record of the number hes having per month and if its more then 4-6 set up an app. with your neuro. and get re-evalauated if he still feels like they are not there go ahead and get a second oppion this has helped us even though we really liked the first neuro. what i found in doing this was there was fresh ideas and they wanted to recheck everything. good luck and keep it up !

Malinda - posted on 01/06/2011

i have noticed no one has spoke of blood panels , it was in my experience everal yrs of no dr finding anything but blood panels changing i stress this because any one with a low potassium level or a low sodiuom can have many problems for me it was all lab needed to re run a test for lupus sle later they find i have mct desease with ms possible wont know till i have another mri > my son did same stareing gut feelings the smell the taste the ringing in ears his nero checked his levels for sodiu were at a very dangerous low for all the salty foods he ate dr supected lupus but nothing yrs had passed with much heart acke and fustration till one dr did a anti ds dna complete check left nothing out it is very hereditary what we have but now we have awnsers god bless and hope this may help someone out

Kaycie - posted on 01/06/2011

With chiropractic it's typically a subluxation of the first cervical vertebrae. The body cannot communicate effectively due to this and then the seizures are the symptom of the nerve interference.

Niki - posted on 01/05/2011

My son Spencer has the same. I thought maybe they were absence seizures but they aren't. They can be similar to partial seizures.

Elizabeth - posted on 01/05/2011

You can always call and ask for a consultation with his doctor and just explain what it is that you have seen and explain that before you were overwhelmed with the amount of information that he was giving at that time. And on the other hand I have the staring seizures and as far as mine are concerned as long as my stress levels stay under control I do just fine. It is all about finding the trigger that sets them off. once you have found that then the battle is half over. Good luck.

Julie - posted on 01/05/2011

Of course Neuro could be wrong - they are human and just because they are dr.'s doesn't mean they know everything. The EEG just shows what is happening at the time of the test. If your child doesn't have an absence seizure during the test it won't show up, but that doesn't mean they aren't having them. Keep good records on dates, times, length, what happens during, before and after, etc. so the next time you mention it to the dr. you have the evidence to back it up. Partial/absence seizures are also referred to as auras in the textbooks, which the drs. never talk about. Obviously they may or may not progress into other types of seizures and as you already know people can experience more than one type of seizure, which can change over the life of the person depending on growth cycles, AED use and the effects on the body (long term AED use on the body especially - I just posted on that yesterday on the ecommunities on the epilepsyfoundation.org website).

Elaine - posted on 01/05/2011

Chiropractic treatment, that is amazing but I am not really surprised. I would like to know more about the diagnosis of those that responded to chiropractic treatment. My son is not done with his tests for seizures, but he pops his neck all the time. His EEG shows his seizures are related to sleep, he has "TC" after staying up too late so I believe that part to be correct.

Kaycie - posted on 01/05/2011

I have a chiropractic practice and have had infants/children/adults respond extremely well to care with most of the cases having a complete remission of the seizures. Maybe something different to try.

Virginia - posted on 01/05/2011

I have absence seizures.I will just stare at something a few seconds the go on with whatever I was doing like nothing happened.I was taken to ER one nite and the eeg said I had no seizures but the doctor saw me and he knew better.If you dont have a seizure while the eeg is being done the seizures do not show up.

Elaine - posted on 01/05/2011

If you know what to look for in seizure type like "A" seizures they stop talking and then start as if nothing has happened. You should discuss this with the Dr. If it didn't show up on the EEG he was not having any "A" seizure tendency at that time.

Kelly - posted on 01/05/2011

My daughters seizures started when she was 3 and continue today, my Sarah is now 23. We have encountered many neuroligists over the years. My daughters epilepsy has gone thru many changes...

Melissa - posted on 01/05/2011

We actually did a video of my daughter....that really helped.

Kelly - posted on 01/05/2011

If I am correct all an EEG can show is what is occuring at the time of the actual EEG test. My daughter has CP, TC and A type seizures. All children daydream from time to time but if your child does not respond during this daydreaming it is most likely A type seizures.It is not so much the Dr is wrong he or she just hasnt witnessed. Just make good notes about what you witness in detail and present them to the Dr.

Refluxmomme - posted on 01/05/2011

My lo has staring spells and they are complex partial seizures, often these types of seizures can be just staring spells that look similar to absence.

Nicole - posted on 01/05/2011

Miranda,

I don't know much about seizures either. I also didn't know my daughter had absence seizures either. I was told this when my daughter went in for a 24hr veeg. I was told that they are in with the complex partial seizures that she has. It seems to me that something has changed and I would contact your nero's office and when you call and they answer let them know what has been going on. One thing they will ask if he is getting over something or if he's sick. That could trigger seizures also because it lowers the thrush hold. I hope that this helps a little. Sorry I'm a bit late in responding. I don't come on here much.

Nicole
dylan (07/02/99 developmentally delayed, sever adhd,odd, gerd, very picky eater, mr, ld, speech and more)
phoebe (06/04/04 complex partial epilepsy into generalized seizures)

Melissa - posted on 01/05/2011

Miranda...I would definately go with your gut.....My daughter has been a mystery case since day one. We have now come to the conclusion that her seizures where caused from birth. She was all over of the map when it came to her EEG's she was never the same on any of them. They were actually going to remove part of her brain to stop them from continuing but them cancelled the surgery last minute. Which was a blessing in disguise....Find a new doctor, get someone to listen to you. Research everything you can on this. I did and saved my daughters life. She has been seizure free for almost 5yrs now!! She is a medical miracle. I gave her XanGo and within 2 weeks she stop seizing and living again. As I said we think her seizures were from birth. During her birth her embilical cord was wrapped around her head and when she came out she had bruising on the left side of her head. The believe her seizures were from inflamation on the brain so when it was inflamed it put pressure on her brain which caused siezures. Once the inflamation was removed she stopped seizing. We go for an EEG in about a week to see there is anything going on. The only thing she has had on her EEG is abnormal brain waves but they have decreased over the years so we are hoping they are gone. Guess we will see...Good luck to you!!

Chelle - posted on 01/03/2011

*it sounds like something probably changed

Chelle - posted on 01/03/2011

It sounds like something probably I. i would bring it up with his neuro. If you aren't comfortable talking with him then I would find one that suits you better. Its important to have a good relationship and communication with your doctors. They won't know something is wrong unless you tell them.