Discussions By Condition: I cannot get a diagnosis.

Unknown Diagnosis - Memory Loss - Please help!!

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: tajeffrey
  • September 10, 2009
  • 03:19 PM

My daughter (10 years old this last January) started having what was thought to be complex-partial seizures on March 20th of this year. Since then she's had nearly 20 episodes/seizures and no doctor at the Children's Hospital near us can give us any kind of hope or diagnosis.

Her seizures or spells usually start off with her in a staring state for about 15 seconds to 1 minute. Afterwards this is followed by complete memory loss of who she is, where she is, who her family/friends are and really most everything for on average 3 - 5 hours. She can't read and doesn't know much, but can still understand things when you talk with her. She has a complete different personality though. She is normally very talkative and fun and friendly with others, but after the staring spell she will barely look anyone in the eye, she will not speak to anyone, only shrugs her shoulders or shakes her head yes or no. It usually takes her about 10-15 minutes of us talking with her and showing her pictures of herself with us to get her to trust us as her parents, but she still barely responds to us after that. Normally she is always hungry, but under this state of memory loss she doesn't eat or drink even half as much. Her balance isn't quite as good as normal and while she can perform physical functions she doesn't seem to be doing it nearly as efficiently or accurately as when she has not had a seizure.

She complains of pain in the middle of her forehead many times before or during the seizure/state of confusion.. and sometimes after her memory comes back.

Originally she was diagnosed with complex-partial seizures and was placed on Keppra. She started having more seizures though and becoming aggressive with others while in her state of memory loss. So because of that just a week ago the doctor ordered her to slowly start coming down off the Keppra.

She was able to have one EEG while in her state of memory loss but only got about 5 minutes of recording before her memory came back. During that episode, the neurologists said that she didn't show a slowdown of her brain activity so she did not have an epileptic seizure during that time. That along with the unusual length of memory loss made the neurologists question the diagnosis of complex-partial seizures, thus another reason why she was taken off the Keppra.

The current thought is non-epileptic seizures caused by stress or something... but that makes no sense to us at all. Our daughter is always very happy and in a good, loving family. There is no stressful situations in her life. They are talking about behaviour therapy right now, but again that makes no sense to us. She isn't depressed, she isn't faking anything, she would not be able to fake this. She is so talkative ALL the time and is always hungry and with these spells she won't say a word to anyone and isn't eating hardly. We're just not buying the behaviour therapy unless we can get some other proof that is what the problem is. We're open to any diagnosis as long as it's correct, but it's like no one is sure what she has so there just guessing it's behavioral and as her parent who knows her in and out, it is not.

Her spells have taken place at all times of the day, too. Mostly afternoon or evening, but some in the morning. She has had them at school, at church, at parks when she has been playing, at home when she has been reading a book. There is nothing that is consistent in any of these situations.

They have not done any bloodwork. They have done a CT scan and MRI initially back in March. Those images showed no damage to her brain or bleeding on her brain or anything from what they tell us.

A 24 hr EEG she had done shows a tendency towards seizures, but she hasn't had a seizure during an EEG. They have a 5-day EEG scheduled, but not til mid-November.

The reason why I'm writing this is because my daughter just had another seizure this past Tuesday at 11:45am. Her memory has still not come back. That means it will be about 48 hours since that time that she had the seizure. Still no memory of who she is or who we are or anything. The doctors at the ER said there is nothing they can do and that we need to just wait it out... but at the same time told us it shouldn't last more than 24hrs.. Well it's double that now and there is no sign that she's going to come out of this.

The only other things I can think of are that I noticed shortly after her seizures that at least one of her eyes (left eye) is noticeably bloodshot for a while afterwards.
When her memory comes back it seems to come back all at once, not a bit at a time.
She said that sometimes she can remember some events or people she met while in her state of confusion/memory loss. Sometimes she can remember nothing.
Her breathing seems to be kinda deeper and heavier during and after the seizure/spell.

We are also told that it's impossible for her to not know who we are or where she is and things like that IF she is still able to follow commands like raise your arms or walk here or there. I don't know if that's true or not, but I know that she isn't faking and I know this isn't brought on by stress.

Our families have a history of diabetes and very high blood pressure and tumors (some brain tumors)... but no history of epilepsy or seizures on either side - my wife's or mine.

I can't think of anything else at this time, but we don't know what to do. She can't go to school. We or at least one of us is needing to quit our job to take care of her (we have four other children). No one is treating this with any urgency and it seems as though there is a very narrow minded guessing going on with what she has. Is it possible she has something that is causing this that hasn't been tested for?

My wife and I are convinced it's a real physical problem of some sort just because we know our daughter is not depressed or stressed in any way. She doesn't have anxiety about things. She is a happy normal child or was until this last March.

PLEASE HELP. WE DON'T KNOW WHAT TO DO AT THIS POINT, WHAT STEPS TO TAKE OR WHAT SHE COULD POSSIBLY HAVE. She has been going to Children's Hospital of Pittsburgh for all of this. We are thinking of taking her elsewhere, but don't even know where to start. We just know that behavioral therapy doesn't seem to be the answer in our minds... everyone is just saying that we need to just wait things out (but how can we when she can't be left alone or do schoolwork or continue any kind of a normal life). We can't wait months and years hoping that this will just go away on it's own. What if it's a more serious problem?

We have no idea what to do... please help.

Oh - also, she is nearing puberty (I guess)... she is changing some physically and I'm sure her hormones are acting up which we were told may have some influence on this.

Also - at birth she had strep sepsis and went into fetal distress while my wife was in labor. An emergency C-section was done and she was taken to Children's Hospital in Columbus where she stayed for 10 days after birth. From the time she went into fetal distress until the time she was born was at least 25 minutes... possibly up to 40 minutes... hard to remember exactly. She had a lack of oxygen, but through God's grace was able to lead a mostly normal life til now. No other real problems have surfaced til this (other than it does take her longer to learn things than others... not real bad, but just requires a lot of studying and working on things).

That's all I can think of... please help us with suggestions of what to do next or what she may have.

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