Discussions By Condition: I cannot get a diagnosis.


Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: mcdonaja
  • December 23, 2006
  • 05:00 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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