Discussions By Condition: Nerve conditions


Posted In: Nerve conditions 2 Replies
  • Posted By: mcdonaja
  • December 23, 2006
  • 04:45 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::mad:

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2 Replies:

  • Please go get a second opinion!! You are not crazy. I was still reading your post and my son was also diagnosed with complex partial seizures. He was diagnosed in 2006. My husband and I and the doctor think we was having them for 2-3 years before it was actually diagnosed with them. When you talk about your son complains of headache and being nauseated, with our son, this comes after a seizure. Our son has throw-up after his bigger ones, head is killing him and he is tired. This is how they feel after they have them, and depending how big they are. Our son can have some smaller seizures and not complain about anything. Our son is 7 and is on a different medication. Our son’s medication is done by his weight. He is on Depako Sprinkles. The does is done by the weight of the person. What my son’s neurologist has told me is that he (our son) should has a certin amount in his body. Every time we redo his medication he goes to get lap work done to make sure the new dose in the levels it needs to be. You should never take a person off of seizure mediation immediately. They could have them again. I always go with my “gut” when it comes to our son. I hope everything goes well. Please post back and let me know.
    Anonymous 42789 Replies
    • January 28, 2007
    • 03:05 AM
    • 0
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  • hi thought id share this with you. when i was 17 i had the exact same symptoms as your son allbeit i was older. now i complained that my symptoms were getting worse, so up goes the medication, worse again and yes it went up and up till i was on maximum dose. from there on my life was a complete mess !! i was living on another planet !! and believe you me i couldnt do a thing about it for myself, i wasnt capable !! i turned into someone i do not no kinda thing. when my child was born, she had many problems due to the medication, anyhow i got phumonia . spelling ??? and pluressy ?? therefore i couldnt swollow them, the side effects were horrendous, but i was ill for 6 months, so by then they were completly out of my system. thank god. i beard with it although life was difficult i was like a child learning all over again my experience of the norm was abnormal to me it was terrible. 5 yrs later it was ruled that i never had it in the first place !! i had what your son had but that wasnt the end of it !! it took 8 years to undo the damage and get back to normal. 14 yrs later..... and i still get flashbacks of things from that part of my life that i couldnt remember and had no control over. not pleasent. im a completly different person today but i lost all in all 20yrs of my life. and i wouldnt wish it on anyone. so if i were you i would not continue to give your son this medication. it turns out that i had autism, mildly of course, and this can include a type of nervous seizure which looks exactly like epilepsy but isnt. im not suggesting your child has autism but nervous seizures do not involve electrical impulses to the brain and it happens when the brain cant cope , ie stress etc and kinda shuts down. its manageable. im not bitter about my life im living it up !! lots of lost years. i hope this helps you with your decision. my condition never stopped me, although im extremly strong minded, im a qualified designer and run my own bussiness, i came through it, and im sure your son will.
    Anonymous 42789 Replies Flag this Response
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