My 11 year old keeps passing out

[AndyH]

Hi ... i have never posted on a website before, but my son now needs help and this site seems full of friendly and well-informed users, so here goes...
Our 11 year old son has recently started to suffer from regular "pseudo-seizures". He often faints, or goes into a 'trance-like' state, for anything up to a minute at a time. He often shakes, and occasionally he will start to "sleepwalk" while he is in one of these trances. The most harrowing problem is his 'night-terrors' which usually arrive while he is waiting to fall asleep in bed. At this point his trances can become extremely traumatic, and he suffers recurring horrific visions or hallucinations that usually involve armed intruders. He screams , albeit silently, while suffering these terrors, and there is genuine terror on his face. Again he can shake a lot while he is passed out. Then suddenly he wakes out of the trance and immediately seems fine. If I try to wake him, he screams out loud and complains of an immediate headache, like an electric shock, so he says. Eventually he goes to sleep. One morning he woke up with serious memory losses, not even recognising his sisters or friends. His memory capacity has now returned , but it has taken over a month to do so. We are obviously desperate to help him, and have sought lots of good medical help. The EEGs etc all say normal, and im told that he has pseudo-seizures rather than epilepsy...hence we are now starting to visit a child-psychologist. Any advice that could help unlock the secret of my sons 'absences' , and cure his anxieties, would be very much appreciated. He is a lovely kid.. Intelligent, very lively (some would say hyper), funny, sporty , very considerate and sensitive, yet now he is obviously becoming very anxious about what is happening to him. Can anybody help? Thanks in advance, Andy

 

[Endless]

Andy,

I'm so sorry your son is going through all this. Sorry you are, too. It is so hard having a child that's sick and not knowing any of the answers yet.

I'm not an expert, but I can chip in my :twocents: worth.

I have a question - did the neurologist do a video eeg? Did your son have seizures during the video eeg?

If your son was having complex partial seizures (also called focal seizures) when he was walking around, and simple partials when hallucinating, it may not have shown up in an EEG. Partial seizures happen in only one part of the brain and don't spread to the rest of the brain. Partial seizures in the temporal lobe are the most common. If it was a partial seizure it may have been happening too deep in the brain to be picked up. Thirty percent (or more) of people with partial seizures have a negative EEG.

If he was having generalized seizures, tonic-clonic, myoclonic, absence, etc., those probably would have shown up on an eeg.

There is also something called physiological non-epileptic seizures. Those are seizures caused by something physical in the body, like a heart condition, blood chemistries out of whack, tumors, thyroid disease, auto immune disorders, poisoning from a toxic substance, toxic mold in the house, medications, infections like meningitis.... the list goes on and on. We recently had a husband posting in here whose wife was acting bizzarely, and the docs said nothing was wrong with her. It turned out to be meningitis, she got treated (before permanent damage was done), and all is well now.

The fact that your son recently started having the seizures makes me wonder if something physical is causing them. If it is a physical cause, the seizures are a wake-up call and the physical cause needs to be found and addressed FAST. Has an internal medicine doctor checked him out from head to toe? You might want spend a night doing google searches to find all the organic (physical) things that could cause seizures. Then take that list into an internal medicine doctor and ask that your son be checked out for the most likely first, also the least invasive things to test, then go from there.

I'd also see a seizure specialist for a second opinion - an epi. The best place to find one is in a regional epilepsy center. The centers that are in a teaching hospital are usually the best ones, but any one will do. Here's a link where you can search for a regional epilepsy center: http://www.naec-epilepsy.org/find.htm

If your Primary Care Physician calls into the center and explains how urgent your case is, the center may give you an appointment sooner. Without that the wait can be upwards of four months. I don't think this can wait that long. Another shortcut is to go to the emergency room at the hospital with the regional epilepsy center. The neurologist on call will see your son, but it may get you in to see one of their epilepsy doctors quicker.

If you have good insurance, the Mayo Clinic is also a good alternative. Ask your Primary care physician to write the referral, and to make a strong case for your son going there and being seen FAST. The wait can range from a few days to six months. The mayo clinic has a different philosophy and approach to medicine. All the specialists work together as a team, and sit around the same table, compare notes, and decide together what the diagnosis and/or root cause may be, and the best course of treatment.

After all the physical and epilepsy possibilities have been explored, then I'd consider that they may be psychological in origin. But not until then. The members in here have seen so many doctors that are wrong or that miss something.

If you have time, please keep us posted on how your son is doing. I'll be sending positive energy your way.

 

[Nakamova]

Hi AndyH, welcome to CWE!

I agree with what Endless says above. Has your son had an MRI in addition to the EEG? If not, that would be a next step. And it might be worth having your son do an overnight sleep study to see if he is having any symptoms or seizures throughout night. It's also a good idea to keep a journal tracking when the episodes occur (date and time of day), how often, how long they last, what happens during them. It can be helpful to have the journal to show doctors. In addition, if you track other details related to your son's diet and activities, you can potentially turn up a pattern or triggers related to the symptoms.

I hope you get some answers soon.

Best,
Nakamova

 

[AndyH]

Hello again.. many thanks for your comments, its really nice to meet some kindred spirits... My son has had an EEG, an MRI and all-night video EEG , which have all said that his brainwaves are normal. The surveillance camera study has said that the seizures do not look epileptic (the doctor seemed pretty confident of this, and she was really reassuring) and once he fell asleep then the seizures stopped. Hence we are being told that these are pseudo-seizures, which have been occurring up to 50 times a day at their peak. On average they only last 15 seconds, but still very worrying for us all. Sometimes he starts to shake, but not always, and occasionally he can get up and walk off, as if in a trance.

Does "pseudo-seizure" make it any less serious? His hallucinations upon waking up ,or when going to sleep, have been truly harrowing for him. And the initial memory loss (after a night where he got very little sleep) was so deep-rooted that it took nearly a month to clear up. So I still feel like we have a "real" illness to deal with, albeit one that seems to be triggered by his own anxieties, rather than by anything medical. Does this make any sense?

The journal is a good idea, we are definitely going to monitor his food and sleep patterns. He had a school trip to Malaysia the week before this all started, and so we have had him checked out for any signs of encephalitis and blood poisoning, amongst other things. The only thing they found was adenitis (inflamed stomach gland). He still get stomach aches, often at the same time as the seizures, but we dont yet know if the 2 are physically linked. He seems more hyper than before, along with periods of occasional lethargy. The doctors here seem to have covered off every possibility of physical sickness. But the seizures are still real, even though they are called "pseudo" seizures, and he is a pretty scared kid at the moment.

Thanks again for your comments, and best wishes
Andy

 

[Ruth]

Welcome AndyH,

This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

I hate to say this. I do not want you to take it the wrong way. I have two sons who have epilepsy, along with szichophrenia. One has hallucinations, the other one does not. There are medications for it. I recommend seeing a pschyiatrits. I hope he does not have it, but it is a good idea to have it checked out.

 

[Endless]

Andy,

Yes, psychogenic non-epileptic seizures can be as serious as the epileptic ones. The ER still has to treat it like an epileptic seizure, and they give the patient drugs until the seizure stops. Sometimes that's so many meds the patient stops breathing and has to be intibated. This has happened to a few members in here.

It's also dangerous if the patient has a seizure where they hurt themselves, especially during one where they have altered consciousness. Falling down stairs, burning themselves in a fire or on a stove, walking out into traffic, running from a hallucination.... you get the idea.

Ruth is right. It is important to chase down all the possibilities, including with a psychiatrist. I'd sure make sure he doesn't have an infection at the same time, though. Like meningitis. The only way to tell for sure on that is a lumbar puncture, though I can see why his docs would be reluctant to do one. They hurt, and they have a few risks.

Also other possibilities. A woman I used to work with had a hole in her wall and patched it, but it started a cascade of events. There was toxic black mold inside the walls, and her son got sick - hallucinated, pale and sweating, etc. The house could be de-molded, though, so good (but expensive) outcome. So there are lots of possible causes.

 

[Nakamova]

The surveillance camera study has said that the seizures do not look epileptic (the doctor seemed pretty confident of this, and she was really reassuring)

Was the doctor a neurologist/epileptologist? I ask because many doctors are less familiar with symptoms of absence seizures, simple partials, and complex partials, and only look for signs of tonic-clonic seizures. In addition, many are unaware of the false negatives that those kinds of seizures can produce on EEGs.

Does "pseudo-seizure" make it any less serious?

Pseudo-seizures are absolutely to be taken seriously. As you say, the person experiencing them can be physically and emotionally traumatized as a result, regardless of whether they caused by misfiring neurons or not. They are often called "Psychogenic Non-Epileptic Seizures (PNES)", since the word "pseudo" suggests "fake" to some people. Treatment is usually in the form of psychological counseling. (BTW, if anti-epileptic drugs are prescribed as treatment, and they help control the seizures, that's an indication that the seizures are epileptic in origin).

The only thing they found was adenitis (inflamed stomach gland). He still get stomach aches, often at the same time as the seizures, but we dont yet know if the 2 are physically linked.

Was he treated for the infection related to the adenitis? The stomach aches suggest that there is still something going on, perhaps an infection. Although this may or or may not be relevant in your son's case, research has confirmed a "gut-brain connection", where chronic stomach issues can lead to malabsorption that in turn leads to neurological symptoms. http://www.health.harvard.edu/healthbeat/the-gut-brain-connection There have also been studies showing that a high percentage of people with epilepsy also have h. pylori infections. (H. pylori is the bacteria associated with ulcers).

I hope that regardless of the diagnosis, your son (and you and your family) can get some relief soon.

 

[AndyH]

Many thanks to you guys, this is great information.. He had a reasonably "normal" day yesterday... but as we settled him down to sleep, he had a horrible half-hour of hallucinations/ mumbling/ staring/ etc... seems like it always happens before he goes to sleep.. Hypnogogic seems to be the word according to Wiki... but then he suddenly snapped out of it, and went to sleep properly. He seemed to sleep peacefully (can you be in a trance when you are asleep? i dont know). This morning he seemed fine when he woke up, and was keen to head off to school, which is where he is now. Praying he gets through the day okay, his teachers are really caring and they are looking out for him. They think he is narcoleptic, because we havent come up with a better word for it yet. He still complains of a sore tummy, and passes out briefly whenever he burps ( a very weird trigger!)

We will definitely take your advice, and get the gut/brain thing checked out. The Doc has already suggested a lumbar puncture, but I am naturally keen to avoid this if at all possible. He is getting on great with his child pyschologist, who is now referring him to a child psychiatrist. (Until today I didnt even know the difference!)


thanks for your advice, its great to know we are not alone. We havent solved anything yet, but it feels really good to talk...

Andy

 

[Endless]

Andy,

I know it's hard to see your child in pain. But if your doc wants to do a lumbar puncture, do the lumbar puncture. He must see symptoms consistent with an infection. Time for some plain speaking. A brain infection can be fatal. The sooner it is diagnosed and treated, the greater the chance of a positive outcome. Your son probably doesn't have meningitis, but it's important to take a look and rule it out.

 

[Nakamova]

The belching and passing out is consistent with a stomach issue, so it would be great to get that resolved. I'm glad that the psychologist is helping -- regardless of whether it's cause or effect, your son is under stress and counseling can make a difference.