My niece keeps passing out

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Jan Marie
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Date Joined Sep 2005
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   Posted 2/28/2006 1:38 PM (GMT -7)   
Hallo everyone.  I've popped over from the A/P forum to ask your opinions.  My niece has suddenly started fainting and it is getting more and more frequent.  She fainted three times yesterday and twice today.  She has been to a specialist who is arranging an MRI scan and EEG.  She does not jerk or bite her tongue or go rigid, she just passes out with no warning and is slightly confused when she comes round.  Does this sound like epilepsy to you?  I'm very grateful for your opinions and advice. 

Uhura
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Date Joined Nov 2005
Total Posts : 166
   Posted 2/28/2006 6:07 PM (GMT -7)   

I wish I knew.  But the part about being confused sounds like it might be a seizure. 

Uhura


Jan Marie
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   Posted 3/1/2006 2:23 AM (GMT -7)   
I forgot to mention she is 13 years old, has just started her periods - I have heard of something called juvenile epilepsy - is this something that you can grow out of? She did have an accident about a year ago when she fell off a rope swing and was knocked unconcious, having hit her head.

Jan Marie
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Date Joined Sep 2005
Total Posts : 1663
   Posted 3/1/2006 7:47 AM (GMT -7)   
Thanks so much for that Jen. I will keep you informed. x

Jan Marie
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   Posted 3/1/2006 3:09 PM (GMT -7)   
Hugs right back to you Mandi - thank you so much for your reply. This is a whole new world for our family - we know absolutely nothing about epilepsy - and of course we are not even sure that is what it is yet! You are right, it is scary, but I always feel information is power and it is the not knowing that is the most frightening. Thank goodness for HW! I will keep you posted how things are going.

Bernard
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Date Joined Mar 2005
Total Posts : 22
   Posted 3/2/2006 7:25 AM (GMT -7)   

Sounds like you are describing atonic "drop attack" seizures.  But it could also be narcolepsy.  I'm glad that tests are going to be done to find out for sure.

I've always heard of catamenial epilepsy manifesting in the form of tonic-clonic (grand mal) seizures.  But epilepsy really doesn't fit in a box, so who knows?


Post Edited By Moderator (Admin) : 3/2/2006 9:23:10 AM (GMT-7)


Jan Marie
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Date Joined Sep 2005
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   Posted 3/2/2006 8:25 AM (GMT -7)   
Thanks again. x

Jan Marie
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Date Joined Sep 2005
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   Posted 3/3/2006 1:33 PM (GMT -7)   
Well we are making some progress. The EEG will be on Monday and the MRI scan on Thursday. Then we play the waiting game again for the results......

My niece passed out three times on Monday and four times on Tuesday. My sister has kept her home from school yesterday and today. During this time she has only fainted once. It does seem that when she is resting and relaxed at home she has fewer. She is, however, extremely bored and fed up! Apart from a sligh headache, she does not feel ill. Will keep you informed.

Daisy9980
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Date Joined Sep 2004
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   Posted 3/4/2006 11:25 AM (GMT -7)   
Hello Jan. You have already gotten great advice so far. I just hope that the testing will show something so they can get some kind of treatment going soon. *Hugs* Take care, Tracy
 
 


Uhura
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Date Joined Nov 2005
Total Posts : 166
   Posted 3/4/2006 5:06 PM (GMT -7)   
Mandi, I'm the exact opposite. MRIs are no problem as long as I remember not to wear metal. I hate the gowns! I just lay there doing nothing. My only complaint about them is that they're boring.

EEGs scare me to death. For me it means laying there on a bed, expected to sleep. I can't sleep on my back. Then there is the part where they either do an EKG or put the things on the shoulder, I've never figured out how they decide which way to measure what your heart is doing. But I hate that.

Then there is the strobe lights. I won't let them use them on me anymore. I seize the entire time. I know I'm seizing. I'm struggling not to wet my pants. I can't hear anything. Just one long tonic clonic seizure, which would be status except that it is induced medically. The one time I didn't seize (I don't remember what medicine I was taking at the time) I had the worst headache imaginable afterward. EEGs knock me out for a couple of days if they use strobe lights. They won't let me keep my hair back anyways, all barrettes and things have to be taken out.

Uhura

Jan Marie
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   Posted 3/5/2006 5:02 AM (GMT -7)   
Hi everyone. Gosh I appreciate you all so much! Mandi, no she doesn't have a period at the moment - these faints don't seem to be linked to the actual time of her period - (she has only had two so far), but the passing out started the same time as she started menstruating. The faints are more frequent when she is exerting herself.

Thanks for all the tips which I shall definitely pass on - this is where HW comes into its own, isn't it?

Bye for now.

Jan Marie
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Date Joined Sep 2005
Total Posts : 1663
   Posted 3/10/2006 10:51 AM (GMT -7)   
Bless you Mandi. Well, the EEG on Monday went ok and at the MRI, she was amazing - extremely calm and confident, very matter of fact. (My sister was a wreck!). We now await the results.

The faints are still coming often and regularly - vary between one and five times a day. She has been going into school just for half a day as she is so depressed being at home and the school are very helpful and supportive. Unfortunately today she fainted halfway down a flight of stairs and fell the rest of the way. When she came round she complained that she had hurt her neck, so an ambulance was called. My sister just called from A & E to say that they have done a whole lot of other tests and are waiting for clearance to come home.

My niece gets no warning of these faints. She describes them as "like falling into a black hole". The other day she fainted while she was eating an apple. When she came round, she still had the half chewed apple in her mouth.

Hopefully next week we shall get the results - it is just horrible not knowing. Your imagination works overtime doesn't it? Thank you so much for your care, concern and support.

Jan Marie
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Date Joined Sep 2005
Total Posts : 1663
   Posted 3/10/2006 5:33 PM (GMT -7)   
Thanks Mandi. They took blood at the hospital today to check for sugar levels. The paediatrician consultant said they start with the most serious and then work backwards, i.e. the EEG test for epilepsy, the MRI for tumours. Then hopefully if they are all ok, they will start looking into other possibilities such as diabetes, hormones, narcolepsy and whatever else they come up with.

Will let you know as soon as we have any results from the tests, hopefully soon.

Jan Marie
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Date Joined Sep 2005
Total Posts : 1663
   Posted 3/11/2006 6:27 AM (GMT -7)   
Well, as you predicted Mandi, the EEG result has come back "clear" so that means she doesn't have epilepsy.... or does it?

Jan Marie
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Date Joined Sep 2005
Total Posts : 1663
   Posted 3/11/2006 6:03 PM (GMT -7)   
Mandi - thank you sooo much for all your advice and concern. What you say makes a lot of sense. I will definitely advise my sister to push for hormone testing if the MRI comes back as "normal". We are a strong family and all suppporting each other and hoping for the best. My niece is totally fed up with it all and if you ask how she is, she just says "fine"!

There does seem to be a little bit of a pattern emerging in that only once has she fainted at home. When she was on half term holiday, she had no faints at all for one week. The day she went back to school she fainted three times. Several of the faints have occurred while going up or down the stairs at school (the last one resulting in the hospital trip) and one occurred during a dancing lesson. If she stays rested, she seems ok, apart from the headache.

The doctors haven't tried any medication as yet, apart from paracetamol for the headache, but painkillers don't help it. Bit like a mystery isn't it? Collecting all the clues...... I'll keep you informed and thanks again. x

Jan Marie
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Date Joined Sep 2005
Total Posts : 1663
   Posted 3/14/2006 10:06 AM (GMT -7)   
We have a diagnosis! The MRI scan showed up a condition called Arnold Chiari malformation. It is an abnormality where the brain and spinal cord meet. My niece would have been born with it but it has only become a problem as she has grown. If you Google it, there are quite a few sites dealing with it. None of our family has ever heard of it before.

The consultant is saying that he doesn't think surgery will be required and that he is happy for her to go back to school (fainting three or four times a day?!). He is sending a copy of the scan to Great Ormond Street Hospital for Children in London for a second opinion and my sister will have an appointment with the consultant on Saturday when she will be asking lots of questions.

I am relieved we know what is causing the faints, but this has opened up a whole new can of worms! Anyway thanks to you all, particularly Mandi, for your help and support.

Jan Marie
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Date Joined Sep 2005
Total Posts : 1663
   Posted 3/14/2006 1:54 PM (GMT -7)   
Thanks Mandi. I will let you know how it is going. You are right - it is a relief knowing what we are dealing with you.

hugs to you too x

Jan Marie
Veteran Member


Date Joined Sep 2005
Total Posts : 1663
   Posted 4/4/2006 2:46 PM (GMT -7)   
Just bumping this to the top for Lyn Howlyncat to read. x
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