Discussions By Condition: I cannot get a diagnosis.

Possible epilepsy but doctors refuse to consider!

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: holly berry
  • September 17, 2009
  • 11:37 PM

Hi,

I really hope someone can help me with this. I'll try to keep it short!

My son suffered what seemed to be a petit mal seizure the other night. He saw colours/lights across his vision, then he fell slowly and jerkily, eyes wide open and staring but was actually not aware at all at this stage. He came to lying across a chair and could feel the chiar and hear me but everything was black. Then he ran up to his room, shouting. To him, he was in the living room one second, in his room the next, he doesn't remember running or shouting. There was also 'lip smacking' as well, but at the time I didn't realise this could be a symptom of epilepsy. His face was very florid for over an hour afterwards - he's normally very pale.

We went to the Casualty dept and the doctor there was almsot certain he would be found to have epilepsy but wanted us to see our own doctor instead. She said I should insist on seeing a neurologist if our doctor didn't seem helpful.

To cut a long story short, our own doctor was not interested, he simply muttered he had no reason to suspect epilepsy and didn't want to refer him. A few years ago, my son had suffered what the doctor called blackouts, in which everything would go balck but my son was still aware of everythign around him. He had all tests at the time, inc EEG, MRI etc, but all came back normal.

Due to what the casualty doctor had said, I asked to be referred to a neurologist but was instead referred to a general paediatric doctor. As she also had the power to refer us to neurology, we went to see her but she supported out doctor's belief it wasn't epilepsy and said she thought it was vagal vascular syndrome (?).

I'm not sure what to do for the best here. My son is 15 and it won't be too long before he can learn to drive. I don't want to think he has epilepsy but I certainly don't want to risk it being misdiagnosed.

I could really do with some advice, especially as people I've spoken to who have epilepsy found his experience very familiar and were extremely surprised he wasn't pointed in this direction.

Sorry if my post is a bit all over the place, I haven't been sleeping.:(

HB

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8 Replies:

  • Does your 15 yo son use a cell phone/cordless phone regularly? He may suffer from Electromagnetic Hypersensitivity or be working on a brain tumor.
    kermworm 81 Replies
    • September 18, 2009
    • 01:26 PM
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  • Can anyone help at all? HB
    holly berry 3 Replies
    • September 20, 2009
    • 02:04 PM
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  • Well, the course of the episode as described is highly uncharacteristic for epileptiform and refractory seizures. The post-ictal phase of seizure activity in most cases renders an individual fairly incapacited for the period immediately following the seizure. The ability to jump up and run under such circumstances would be extremely remarkable at the very least. Lastly, patients with true refractory seizure disorder are unable to hear you during the event and I'm assuming that there was some indication that your son responded to your voice. The eyes being open during the episode would also tend to point away from epileptiform as well. The fact that his prior EEG showed no evidence of seizure activity or slowing would also be inconsistent with the disorder. I'm also uncertain when you observed the lip-smacking, but this is normally demonstrated during the prodrome phase at a point prior to the seizure activity and not during. By contrast, I suppose it's possible for your son's symptoms to be associated with vagal syncope and is caused by sudden reduction in tone of the vagus nerve, resulting in near syncope or syncope. Stress has been shown to be associated with fluctuations in vagal tone and the characteristic prodrome can include tunnel vision but more often simply results in unexpected syncope, or fainting. It could also be possible for mild transitory absence to occur, wherein he is confused but this would be uncharacteristic for vagal syncope. I'd be interested to know whether a A1C has been performed to indicate any type of dysregulation of his serum glucose. I'm sure your doctors would have checked this as part of the differential diagnosis and unless he is demonstrating any supportive clinical signs such as frequent thirst & urination, weight loss, etc., then it's not likely that diabetes would be responsible either. Lastly, there are indications to watch for in determining whether true seizures are likely taking place. If the episodes occur strictly in the presence of others and if his eyes are open and they respond with blinking or eye movement in response to a threat index like swatting the hand very close, but not touching, the eye or face, if he can respond to or acknowledge your presence during clonic activity or can respond to pain stimulus such a aggressively rubbing the base of the sternum vigorously with the knuckle and if the refractory period is extremely shortened by the demonstration of getting up and walking around or vocalizing awarenss that he's had a seizure, then such indications would all be examples more consistent with psychogenic seizure rather than epileptiform. Psychogenic seizure disorder can appear very similar to true refractory seizure disorder to the untrained eye and although he's a bit young for the appearance of such a disorder, it is not unheard of and typically translates to a need for attention and help that cannot be verbalized for various reasons. I doubt it's the case here, but testing the seizure portrayal would provide insight concerning where to next proceed. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • September 20, 2009
    • 09:45 PM
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  • I am not a doctor by any means, but I can tell you that after more than 20 years of suffering with Neurally Mediated Hypotension aka NMH aka Vasa Vagal Syndrome aka vasodepressor syncope, what you described that your son experienced doesn't fit. After a fainting spell or even a close call, you aren't moving for a good 10 minutes until your body temperature, naseau, heart rate, and blood pressure return to normal. Even then you would be slow to movement and most likely collapse again after getting up the stairs. During the syncope or fainting spell consciousness is typically lost for 30secs to 2mins. I was only diagnosed in the last 3 years because I went to an Internist out of pocket to get a body scan figuring on a whim I had nothing else to lose. He looked at the scans, looked at the list of symptoms, diagnosed me in under 5 minutes, gave me a list of specialists, and probably saved my life. Not healed, but I'm definetly better. Needed a beta-blocker to start with; so, the passing out (apparently dangerous whenever or where ever this happens) and blanking out (when driving) would stop. I cognitively would know how I got from point A to point B, but didn't remember doing it.Every time I ever went to a doctor with my list of symptoms I always got the "well maybe your confused" or "with more than five symptoms it must be depression" or "it's just Chronic Fatigue" speeches. What you need to know is, when a doctor doesn't have the answer they will typically give you a bucket answer = I don't know so it must be metabolic syndrome or chronic fatigue syndrome; right and that and a dollar won't buy me the trash can that answer belongs in. If it doesn't sound right; it's probably not. NO means get a second opinion or tenth opinion whatever the case may be.Please view the following site to get one of the most comprehensive listings I have seen documented on the "vaso vagal" problem to date. Maybe this is it, but either way you need documentation from someone qualified and the doctors you talked to sound apathetic.http:/www.healthy-holistic-living.com/postural-orthostatic-tachycardia-syndrome-symptoms.htmlNow, when it comes to seizures...my sister was and my father is an epileptic. Seizures are different for so many people and there are so many kinds. Parts of what you described sound plausible, but the running and shouting throws every diagnosis mentioned off. I did however meet a woman who was diagnosed with seizures after she left a friend's house 10 minutes from home, disappeared for almost 24 hours, and found herself in her car two states and two hours away totally confused. Also, having a single seizure does not necessarily mean a person has epilepsy. High fever, severe head injury, lack of oxygen - a number of factors can affect the brain enough to cause a single seizure. Even a traumatic event, stress, or video games can be triggers.Use the following set of FAQs to get more info on seizures:http://www.nomoreseizures.org/faqs.htmlI truly hope any of this helps even if you just realize how amazing you are for asking for help. At 29, I wish my parents had asked more questions and tried different doctors when I was struggling with weird medical episodes as a kid. Maybe it would have saved me the last 10 years desparately searching for answers. I am glad that other people responded, but as with anything else...you'll have to double check what anyone and everyone says tp make sure it fits your situation. Only you know or can figure out what may have changed within the last few days, weeks, months for your son. Also, ask him to really think back if there was ever a time he remembers anything even remotely similar to this happening before.I'll respond back if I find anything. Let us know if you figure it out.Good Luck and God Bless
    Anonymous 42789 Replies
    • September 21, 2009
    • 04:55 AM
    • 0
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  • Hi, Thanks for the detailed and measured reply, it's much appreciated! Yes, his eyes were open and he could hear my voice at the very end of the episode (at the time his vision still wasn't working), but he couldn't respond at all, there was no indication he could hear me. His eyes were open but wide, fixed and staring. I was more concerned that he was suffering from complex partial seizures as his symptoms seem to be close to these. He has had his blood tests done in the past, when he suffered he loss of vision when younger and he had them done again about a year ago as he seemed very lethargic and extremely pale. I know he had his blood sugar tested years ago, I don't frankly know if it was tested a year ago. He hasn't had any bloods done at all this time. He doesn't exhibit the increased thirst, frequent urination of diabetes, but it has been something I'm aware of as we have a family history of Type 1 diabetes. There is also a direct family history of hypoglycemia, the family members who have suffered from it have not gone on to develop diabetes though, it seemed to stand alone. But this might be irrelevant anyway as on the night of the episode, my son had a full meal only 2 hours before it happened. Also, should I ask for an EEG to be done again as his last EEG was 5 years ago, so perhaps not as relevant as it might be to this episode? HB
    holly berry 3 Replies
    • September 21, 2009
    • 09:10 AM
    • 0
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  • Does your 15 yo son use a cell phone/cordless phone regularly? He may suffer from Electromagnetic Hypersensitivity or be working on a brain tumor. Hi, No, he hardly ever uses a mobile and no cordless phone use at all. HB
    holly berry 3 Replies
    • September 21, 2009
    • 09:10 AM
    • 0
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  • Hi, I really hope someone can help me with this. I'll try to keep it short! My son suffered what seemed to be a petit mal seizure the other night. He saw colours/lights across his vision, then he fell slowly and jerkily, eyes wide open and staring but was actually not aware at all at this stage. He came to lying across a chair and could feel the chiar and hear me but everything was black. Then he ran up to his room, shouting. To him, he was in the living room one second, in his room the next, he doesn't remember running or shouting. There was also 'lip smacking' as well, but at the time I didn't realise this could be a symptom of epilepsy. His face was very florid for over an hour afterwards - he's normally very pale. We went to the Casualty dept and the doctor there was almsot certain he would be found to have epilepsy but wanted us to see our own doctor instead. She said I should insist on seeing a neurologist if our doctor didn't seem helpful. To cut a long story short, our own doctor was not interested, he simply muttered he had no reason to suspect epilepsy and didn't want to refer him. A few years ago, my son had suffered what the doctor called blackouts, in which everything would go balck but my son was still aware of everythign around him. He had all tests at the time, inc EEG, MRI etc, but all came back normal. Due to what the casualty doctor had said, I asked to be referred to a neurologist but was instead referred to a general paediatric doctor. As she also had the power to refer us to neurology, we went to see her but she supported out doctor's belief it wasn't epilepsy and said she thought it was vagal vascular syndrome (?). I'm not sure what to do for the best here. My son is 15 and it won't be too long before he can learn to drive. I don't want to think he has epilepsy but I certainly don't want to risk it being misdiagnosed. I could really do with some advice, especially as people I've spoken to who have epilepsy found his experience very familiar and were extremely surprised he wasn't pointed in this direction. Sorry if my post is a bit all over the place, I haven't been sleeping.:( HBHas he been tested for Celiac, sometimes it can result in seizure like behavior
    kesaiserris 35 Replies
    • September 21, 2009
    • 01:27 PM
    • 0
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  • Oh, if he never uses one, then he is probably okay - but that would be pretty rare for a teenager today.
    kermworm 81 Replies
    • September 21, 2009
    • 05:29 PM
    • 0
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