Discussions By Condition: I cannot get a diagnosis.

Seizures vs. Syncope

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: octobermom0103
  • September 3, 2010
  • 06:30 PM

Hi. My 6 year old daughter starting having seizures about 20 months ago. The first one I witnessed was a petite mal but all the ones since then have been her going stiff with her arms and fists up by her face and she turns anywhere from grey to blue. Her bp bottoms out and her heart rate gets as low at 10 to 20 beats a minute (her PCP witnessed a couple of these episodes). They last about 30 seconds and sometimes she has back to back episodes. Once she wakes up, she is fully aware of her surroundings and can speak but it can take awhile for her vitals to stabilize. They always happen within an hour or two of waking and seem to be triggered by low fluids (during initial medical testing, seizure activity increased greatly as many of the test required her to fast and not drink anything). We have had 3 EEG s the first two were clean and we are still waiting the results of the third one.

We seem to control them with giving her lots of fluids as soon as she wakes up. We were seizure free for the past year until last week. We were travelling and I forgot to give her her Gatorade and it turned out she had a fever. She had a "not so bad" single seizure.

The cardiologist and neurologists have been going back and forth as to whether it was her heart or brain causing the seizures. The neurologist has me completely freaked out that these are temporal lobe seizures and the emergency room doctor and her PCP think its neurocardiogenic syncope. The cardiologist insists it's not her heart despite some odd but minor findings her her cardiac testing.

Anyone else in this situation or went through a similar process getting diagnosed? I'm waiting to see what happens after this round of testing and if nothing seems to be going anywhere, I'm going to take her to Boston Children's and start over. Thanks for reading!

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  • We seem to control them with giving her lots of fluids as soon as she wakes up. We were seizure free for the past year until last week. We were travelling and I forgot to give her her Gatorade and it turned out she had a fever. She had a "not so bad" single seizure. Hi.. thou not the same as your daughters condition, i have a kind of similar one and wonder if she has a similar underlying thing going on as the condition I have. I have a condition called postural orthostatic tachycardia sydrome.. eg my heart rate is affected when im upright (its not a heart issue but a autonomic nervous system issue). This condition I have is a type of DYSAUTONOMIA (im thinking your daughter may have dysautonomia). Most with my condition suffer from low blood pressure and BP which may bottom out. This condition is often helped by drinking lots of fluids such as sports or electrolite drinks and salt. Some people with it have regular IV's of saline infusion to prevent symptoms. Ones with this kind of dysautonomia often have a LOW BLOOD VOLUME (i dont know how they test that except that they do in scientific studies) and hence why we need to drink so much or we get symptoms (i can go into like seizure like symptoms (which arent epileptic, they dont show up as so on the EEG, thou a nonspecific abnormality in my own case shows.. Ask your doctors for the actual copies of the EEG report as often they will ignore nonspecific abnormalities when they dont know what they mean!!!). I go unconsciousness for up to 5 mins if i dont drink enough and get an attack of this. I need to drink between 12 cups (3Litres) to 28 cups (7 Litres) per day, the more Im up on my feet, the more I must drink to stop symptoms. "Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies." http://www.dinet.org/ Anyway.. thou i dont know what type of dysautonomia your daughter may have, it does sound like something like this (if her heart is checking out fine, the fluid stopping her symptoms also makes me think it is this).. and as I said.. low blood volume can be involved too (hence causing one to drink lots to prevent symptoms) best luck ps.. thou my issue is quite severe.. i havent been able to find a doctor or specialist who seems to know about this kind of stuff!! Ive seen both cardiologists and neurologists. Im not even sure what kind of specialist is meant to be dealing with this kind of thing! Ive learnt how to deal with my condition by the info ive found online.
    taniaaust1 2,267 Replies
    • September 4, 2010
    • 08:22 AM
    • 0
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