Discussions By Condition: Medical Errors

Epilepsy????

Posted In: Medical Errors 10 Replies
  • Posted By: mcdonaja
  • December 23, 2006
  • 04:26 AM

Here is our story/frustration at having our son properly diagnosed.

Child male age 5 - No seizure history.

In 2000 he becomes ill with e.coli/HUS. Suffers renal failure. While in Hospital altered consciousness observed along with irritability. When discharged following recovery from renal failure, altered consciousness observed, lasting anywhere from 10-30 seconds. Chewing observed, walking aimlessly through house, won't respond to verbal commands. When he comes back to "normal" is confused and very irritable, trouble with memory (i.e. math homework that he had been doing with no problem he will forget how to do it). Also starts bedwetting.

This continues undiagnosed for appox 3yr years. He ends up being treated for "behavioural problems".

At age 8-9 first couple of eeg's are "normal". Child then has one that shows epileptic spikes. Followup EEG confirms. Also has two sleep eeg's that show the spikes.

Finally Diagnosed with complex partial seizures in 2004. Child is also diagnosed with a brain injury from e.coli that is causing cognitive and behavioural problems although some of those problems are blamed on the epilepsy.

Child is put on tegretol. Condition improves greatly but not 100%. Bedwetting stops with implementation of tegretol.

Has 2-3 follow-up eeg's that show epileptic spikes. Neurologist continues with tegretol.

2005 while on ride at fair child has a "major" focal seizure. Ride is stopped child has to be helped off ride. Complains of having a bad headache and being nauseated afterwards.

EEG a few days after this still shows epileptic spikes. Neurologist doesn't seem to concerned with this latest seizure. Child remains on tegretol.

Dec 2006 Parents notice symptoms appear to be worsening. Child has a follow-up EEG.

Child's psychiatrist also feels that seizures maybe causing some worsening of the behavioural problems.

On follow-up with Neurologist a day after EEG he states that the EEG was clear and that our child "never ever had epilepsy". States that the EEG's were showing a normal variant called a "psychomotor variant".

When questioned about what we were observing Neurologist stated that our child probably has/had underlying "psychiatric problems" that were the cause of it.

When asked about the "seizure" that he had at the fair the Neurologist said "well whatever he's better now". Neurologist also said that our son should be taken off his medication immediately.

Naturally we are quite concerned and have elected not to take our son off the medication because of the issues we are currently seeing with him.

We have been using the same neurologist throughout this who is an epilepsy specialist.

We are in the process of getting a second opinion.

Question: Are we crazy? We feel that the behavior of the Neurologist is simply bizarre. The diagnosis of never having epilepsy just does not make sense although we would be grateful to god if he didn't. The difference between actual epilepsy and a normal variant shouldn't take nearly 5 years to figure out, plus it doesn't explain what we have been seeing all these years.

This is an experienced pediatric neurologist who specializes in epilepsy.

If our child does not have epilepsy, what the ***l does he have??

We are extremely confused by all of this not to mention the thought of having to do this all over with another "specialist" makes us sick.

Any thoughts or suggestions?????:confused:

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10 Replies:

  • Get another opinion. The idea may make you feel sick but a second opinion is always good to have anyway with anything which causes a lot of problems. Your neurologist sounds kind of strange by what you've said.
    taniaaust1 2267 Replies
    • December 28, 2006
    • 08:18 AM
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  • my husband has seizures caused by traume to the head . Went to the neurologistt. Got eeg he said Nope you don't need that medication.Tapered off of meds then one day to the t after meds stop had sizure while driving went under a truck. Moral of the story is..who cares :control the seizures work on the behaviors. After an infection like that that years ago woould have killed him. Why get cought up arguing with the dr. Just keep him safe and sound
    Anonymous 42789 Replies
    • January 15, 2007
    • 04:45 AM
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  • Hmmmm.... I wonder did this start after his booster shot??? Renal falure is one of the signs of McArdle's Disease. In certain types it also effects the heart or brain.
    Anonymous 42789 Replies
    • January 15, 2007
    • 08:14 AM
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  • I have to agree as an RN , I recommend you get a second opinion. While children often will out grow seizures as they age, for your own comfort.. and due to the fact that elpiforms were present on the eegs performed previously.. I would ask for a second neurologists opinion. You have that right to peace of mind.. and for the safety of your child.
    Anonymous 42789 Replies
    • January 15, 2007
    • 05:38 PM
    • 0
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  • You really should ask about glycogen storage disease. I just found out that one types initial presentation may be hypoglycemic seizures. For more info about this disease you can go to http://www.emedicine.com/med/topic907.htmorhttp://members.aol.com/itsgumby/me.htmlI hope this helps.
    Anonymous 42789 Replies
    • January 18, 2007
    • 00:59 AM
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  • I have epilepsy myself and found it hard to get (and initially, to accept) the initial diagnosis.In my late teens I had my first seizure, went to Doc, who said 'it's epilepsy' (no further investigations, took my word for it) and prescribed valproate (this was nearly a decade and a half ago).I decided against taking the drug.I eventually got referred to a specialist after 2 further (serious) seizures, and started medication.I've been seizure free ever since.All the EEG's I've ever had were normal (didn't help in accepting my diagnosis), as were CT scans, but I subsequently found out this is absolutely normal.A very significant proportion of seizures cannot be 100% attributed to a specific cause.But that does NOT mean it's not epilepsy.Which suggests to me that the presence of abnormal spikes is surely indicative of something?Definitely - get a second opinion!As someone who wrongly believed that I didn't have epilepsy for years due to incompetency at first contact with medical profession, personal denial, family denial (they didn't, and still don't - want to accept the diagnosis), I can truthfully say please get it sorted for the sake of your son, as it can cause a lot of anxiety and heartache.I would also strongly advise getting in touch with a charity/voluntary org specialising in giving information about epilepsy and providing support to families.These org's hear similar stories all the time, and might be able to suggest valuable alternatives/ideas, and put you in touch with parents who know what you're going through.Good luck.x
    Anonymous 42789 Replies
    • January 23, 2007
    • 02:33 PM
    • 0
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  • Also, it sounds entirely plausible that your son may indeed have behavioural problems - but the whole picture is extremely complex.'Behavioural problems' may be resulting, in this instance:* as a direct consequence of acquired brain injury* symptoms of epilepsy (e.g. auras, post seizure confusion) can appear as behavioural problems* psychological aspects: behavioural propblems can obviously also be associated - quite naturally - with his situation i.e. worries; confusion in his own identity resulting from the situation re: his diagnosis; the effects of your fears, confusion and concerns.A good doctor will look at the picture holistically in this way.It may also be worth talking to someone who knows about acquired brain injury, which is a specialist field in itself.Did you know that epilepsy can result as a consequence of ABI?
    Anonymous 42789 Replies
    • January 23, 2007
    • 04:56 PM
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  • It is actually also quite common for an initial diagnosis to be changed due to subsequent presenting factors.
    Anonymous 42789 Replies
    • January 23, 2007
    • 05:19 PM
    • 0
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  • It is very common for young children to "out grow" their seizure disorder. My situation is very similar. When I was an infant I was hospitalized with a very bad infection. During my time in the hospital I had went into status epileptis and had a few other seizures. For the next 2 years I was on phenobarbital and then suddenly the neurologist said I was OK and instructed my parents to stop the medication. The neurologist said I had out grown my epilepsy and would live the same life as any other child. I was fine and had no more seizures as a child.When I turned 19 my seizures began for no reason. I was referred to a neurologist who said I had my epilepsy never really went away. Sometimes a person, usually a child can be in remission without using any medicines. If I were you, I would see if your son can go without taking the meds for a while just because of the side effects. I always ask myself, what if I would have been on phenobarbital my whole life, would I still be in the same situation I am in now?
    Anonymous 42789 Replies
    • February 6, 2007
    • 04:13 AM
    • 0
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  • My daughter age 15 had been diagnoised with bipolar and/or schizophrenia when she abruptly one day started to see and hear things that were not there. The psychiatrist put her on abilify and depokote and she got a little better. Our neurologist had been seeing her since birth due to mild cerebral palsy caused by lack of oxygen at birth just went with the same diagnosis. Even though she had spikes on her EEG.Well to make a long story short. She would have periods when she would stare and then just come out of it like nothing. The doctors said it was medication related or just her mental illness. The psychiatrist did not like to use depokote for long periods of time so he would try to lower the dose and all her symptoms would come back hearing things seeing things that were not there. Than she started to have major seizures that you could see. So the neurologist put her in the hospital and did a video eeg, his results psudosiezures WHICH ARE BEHAVIOR SEIZURE.(they do not have them intentionally but they are caused by a psychiatric illness) His associate wanted to take her off the depokote and than do the test because the eeg did show some spikes. Her doctor said no and sent us home. She continued to see the psychiatrist and stay on depokote but continued to have these seizures (the major ones) she would lose bowel and bladder and get real wierd prior to the seizure and smell things and than have one. My husband and I took her to Jackson Merorial Hospital in Miami Florida and the neurologist there found she was haveing real siezures not psychiatric seizure. He said there might be a bipolar conponent but that she was having seizures. She has been properly medicated for the last six months (no more voices, or hearing things, no siezures) and is off all of the psychiatric medications except an antideppressent because this whole thing has been very ******n her. DONT GIVE UP YOU ARE NOT CRAZY, TAKE YOUR CHILD TO OTHER DOCTORES SUPER SPECIALISTS AND MAKE THEM DO EVERY TEST TO BE SURE BEFORE THE Here is our story/frustration at having our son properly diagnosed. Child male age 5 - No seizure history. In 2000 he becomes ill with e.coli/HUS. Suffers renal failure. While in Hospital altered consciousness observed along with irritability. When discharged following recovery from renal failure, altered consciousness observed, lasting anywhere from 10-30 seconds. Chewing observed, walking aimlessly through house, won't respond to verbal commands. When he comes back to "normal" is confused and very irritable, trouble with memory (i.e. math homework that he had been doing with no problem he will forget how to do it). Also starts bedwetting. This continues undiagnosed for appox 3yr years. He ends up being treated for "behavioural problems". At age 8-9 first couple of eeg's are "normal". Child then has one that shows epileptic spikes. Followup EEG confirms. Also has two sleep eeg's that show the spikes. Finally Diagnosed with complex partial seizures in 2004. Child is also diagnosed with a brain injury from e.coli that is causing cognitive and behavioural problems although some of those problems are blamed on the epilepsy. Child is put on tegretol. Condition improves greatly but not 100%. Bedwetting stops with implementation of tegretol. Has 2-3 follow-up eeg's that show epileptic spikes. Neurologist continues with tegretol. 2005 while on ride at fair child has a "major" focal seizure. Ride is stopped child has to be helped off ride. Complains of having a bad headache and being nauseated afterwards. EEG a few days after this still shows epileptic spikes. Neurologist doesn't seem to concerned with this latest seizure. Child remains on tegretol. Dec 2006 Parents notice symptoms appear to be worsening. Child has a follow-up EEG. Child's psychiatrist also feels that seizures maybe causing some worsening of the behavioural problems. On follow-up with Neurologist a day after EEG he states that the EEG was clear and that our child "never ever had epilepsy". States that the EEG's were showing a normal variant called a "psychomotor variant". When questioned about what we were observing Neurologist stated that our child probably has/had underlying "psychiatric problems" that were the cause of it. When asked about the "seizure" that he had at the fair the Neurologist said "well whatever he's better now". Neurologist also said that our son should be taken off his medication immediately. Naturally we are quite concerned and have elected not to take our son off the medication because of the issues we are currently seeing with him. We have been using the same neurologist throughout this who is an epilepsy specialist. We are in the process of getting a second opinion. Question: Are we crazy? We feel that the behavior of the Neurologist is simply bizarre. The diagnosis of never having epilepsy just does not make sense although we would be grateful to god if he didn't. The difference between actual epilepsy and a normal variant shouldn't take nearly 5 years to figure out, plus it doesn't explain what we have been seeing all these years.This is an experienced pediatric neurologist who specializes in epilepsy. If our child does not have epilepsy, what the ***l does he have?? We are extremely confused by all of this not to mention the thought of having to do this all over with another "specialist" makes us sick.Any thoughts or suggestions?????:confused:
    Anonymous 42789 Replies
    • October 10, 2007
    • 10:25 PM
    • 0
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