50+ seizures in 6 days please help my son

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My 11 year old son started having seizure like episodes 5 days ago. The first day he had only 1 where he stood up from taking a test, started scratching and pulling his pant leg, dizzy, red face, unable to talk, but conscious the entire time. 24 hours he had another very similar, we had a CT and bloodwork, both normal, sent home. On the way home, he had 2 more within 30 minutes. We took him to a different hospital, they gave him Ativan, sent home with diagnosis of psuedoseizures. That night he had about 20 episodes in a 12 hour period while sleeping. Next day they were much fewer, but always around 6 at night. The next day we had an EEG and MRI, both normal, told to follow up with neurologist and pediatrician. They are typically always 5-10 seconds, wide eyes, extreme tensing of muscles, weird involuntary muscle movements, holds his breath, can't communicate, affects both sides of body, he can talk and is lucid immediately after. This is where we are now. I am trying to get an appt for him next week, otherwise it's going to be 2 months before anyone has an available appt. anybody have any helpful advice? Twice he has tensed up his leg so bad that it brings tears and still hurts 2 days later. Just now he had an episode and for the first time his head jerked repeatedly to the side which also brought him to tears from pain and fear. He has had well over 50 episodes now and we are scared. Nobody in our family has had anything like this. Please help us. Thank you in advance.


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Does this sound like epilepsy? What kind of seizures could these be? He has them driving, watching tv, sleeping, sitting with no stimulus. We just can't figure out the trigger. Is psuedoseizures a diagnosis from the er because they don't know? He has a good life, and not much seems to stress him out which makes me wonder about that diagnosis.


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masterjen

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Hi, and welcome to CWE!
There are a lot of different seizure types out there, and at least some (if not all) of what your son has can be seen with the different types of seizures. I would suggest calling the neurologist's and pediatrician's offices and trying your best to get your son seen as soon as possible. Pester and pester the offices until they give you an appointment very soon. Failing that, take him back to the ER in the daytime and perhaps there will be a neurologist on call who can see your son.
Keep a careful log of each of your son's episodes: what exactly happened, how did he feel before and after, what was he doing before the episode, how long did it last. You may want to video tape a few episodes for the doctors to see.
Wishing you and your son all the best!
 
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Thank you for responding. I just feel so helpless. I'm waiting on a call for a possible appt next week. I kept track of every episode for the first 4 days but after the Drs all said its nothing I stopped. This last one of the jerking of the neck worried me so I started looking into epilepsy after someone mentioned it. I will definitely start again. Thank you again :)


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Nakamova

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Hi Jennyholdeman,

Your son's symptoms sound like complex partial seizures. (See http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures) and possibly tonic seizures(see http://www.epilepsy.com/learn/types-seizures/tonic-seizures). The "pseudoseizures" diagnosis seems very unlikely. While an EEG can be helpful, it doesn't always pick up partial seizures, and a normal EEG doesn't necessarily rule out seizures that are epileptic in origin. Seeing a pediatric neurologist/epileptologist would be a great first step, and I hope you can do so quickly.

Did the Ativan help at all?
 
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Yes, I totally agree, it's not psuedo, I just feel it. The Ativan made it worse. We got home at 3 am and from the time he sleep from 3am to 1 pm he prolly had around 24 episodes. They are extremely mild tho, usually just heavy breathing and rigidness. Never loses consciousness, and immediately able to communicate. We didn't give him anymore and normally now he has about 6-8 per night and a few during the day. We have and appt on Tuesday!! Thank you all so much.


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masterjen

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So glad you have been able to get an appointment so soon! Is this with both the neurologist and pediatrician? Let us know how it goes.
 

Dutch mom

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My son (age 16 now) started out having seizures when he was age 1,5. At first the doctors doubted this being epilepsy but we knew for sure he had epileptic seizures. An EEG was made but failed because he was moving all the time. His seizures increased rapidity and he developed several different types in just a few weeks. He has had periods with 50+ seizures a day too. While we were waiting for an new neurologist appointment we decided to film his seizures. We brought the video to the hospital for the doctor to see. The same night we got a phone call from the neurologist, he had send the video to a colleague in a children's hospital. Our son was admitted in the hospital immediately for observation and examination. We got a diagnose that same week. Perhaps filming your son and bring the film with you to the doctor's app is an idea. It could help to be taken seriously, get an EEG soon(er) or even help fasten a diagnosis.
 
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seagull

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You know if medication works.My daughter had similar her first egg mri was normal the third one showed e.eeg don't prove not got it
 

seagull

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I never know what they mean pseudo..are they saying it put on bc I don't see a child could do that
 

masterjen

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Saying someone has pseudoseizures does not generally mean the person is "putting it on". A pseudoseizure is a seizure caused by psychological factors rather than electrical misfiring in the brain. There are other types of disorders that can cause seizure-like episodes but again rather than being attributable to electrical misfiring in the brain they might be caused, for example, by problems affecting the peripheral nervous system.

Having said that, the original poster's description of her child's seizures do not sound like psychogenic ones or some other affliction causing seizure-like episodes.
 

AlohaBird

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The correct more modern medical term is PNES.

The term "Pseudo-Seizure" is a leftover from when people who had seizures were put in mental institutions. They also used to call them "Hysterical" seizures.

Even today, of all the people diagnosed with PNES, 75% are women. I wonder if that accurately reflects who tends to have them or if it has to do with how they are diagnosed.

The seizures are every bit as "real" they are just of a different origin and therefor need a different type of treatment.

The terminology matters because words like "pseudo" imply "not real" or that someone is "faking it" which they are not. They are not in control of that seizure happening any more than a person with a brain tumor is.
 
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No definitive answers yet, but it was a good visit with the neurologist. Today Tyler is at the hospital for a 2 day 1 night EEG test. The dr we saw was amazing, finally someone who wants to find out what the episodes are and did not turn us away. Yes, I cried. Lol She does think they are epileptic seizures, but not a textbook diagnosis. His are different than the typical seizures. The psuedoseizure diagnosis is no longer relevant. He is having too many at night for those to be a possibility. The brain at this age is changing dramatically and is most likely the cause, most kids grow out of them they say. Thank you everyone for your time and concern, it means the world to us.
 

AlohaBird

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I'm so glad you have found a neuro who listens. They are gems.

Just for the records though, it is possible to have nocturnal seizures be PNES. I've had epilepsy for 31 years and I just did a 6 night EEG study a week ago. This was the first time the docs ever saw "abnormal" EEG readings.

Tell Tyler I know how he feels with all that sticky stuff and the wires on his head.
 

seagull

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Are you Brit...if so there place Lingfield Kent school and hospital hand in hand great oOrmond street if you Brit I would insist on referral
 
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