Tuesday, September 15, 2009

Epilepsy is hard to diagnose

Epilepsy is not easy to diagnose. Sometimes a person does not go into a full fit (its not called that but I am just putting it in my own layman term). For example, a child may just stare into space for seconds. Teachers may think the child is not paying attention or the child may miss out parts of lessons in class as a result and no one even knows that in fact the child has had a seizure.

Epilepsy is also often misunderstood. Some actually think that one is being haunted or being possessed by demons and call for an excorcism whereas medical treatment should have been given.

Sometimes a person has auras which I will call little fits (again its my own layman term). There are all sorts of auras. Mine is a feeling of fear and cold. However others may actually smell strange smells or see flashing lights or more scary still have hacullinations etc depending on which part of the brain is affected.

I had two nocturnal fits (meaning in my sleep) but I was not diagnose as having epilepsy (one fit does not make you an epileptic) until I had 3 fits in a day while I was awake. It became clear than. There is no reason for my seizures. At least the neuros can't seem to find one and I never had this problem when I was a child or when I was younger. Everyone can have fits. The only difference is a person with epilepsy has a lowered threshold for having a seizure. Thats one of the reasons why it is so hard to diagnose.

Now, the question that is always on my mind is, does my girl have epilepsy? One neuro said that there is a 60% chance that she has after listening to some unexplained night incidents she has had.

Its all very confusing and distressing. Furthermore the signs are not clear. Like I said, its very hard to diagnose. My only worry is that if she has epilepsy and it goes undiagnosed and untreated, then there is a danger to her person if she has a seizure at an unappropriate time or place.

  • - She has had two EEGs both of which were normal. However a normal person can have an abnormal EEG and vice versa. One neuro reported it as normal while another neuro said he "saw something there".
  • - She has said that she sometimes feels like she is in a dream. I have read enough to know that what she describes sounds just like the way others have described their aura. However it could also be a sign of anxiety because it usually happens when she is anxious or very excited. On the other hand seizures also usually happens during times of stress. The neuros also did not seem to think much about it.
  • - Sometimes she complains about seeing everything "green" or "very small" which could be signs of an aura, however she could just be an imaginative little girl
  • - She has vomitted in her sleep twice for no reason. However, you can do that even if you have flus or colds or a stomach virus
  • - Some has described a feeling of being sick like vomit rising inside which she describe the other night but she could just really be feeling sick with a cold virus too
  • - Waking up from sleep crying or vomitting may be very common in a child but it could also mean something else so I will continue to record it down

She is a very smart and intelligent girl, always thirsting for knowledge and with a strong desire to learn. She is a joy to teach. She is also a anxious little girl with low self esteem which worries me. I really want to help her in this area but I have not been doing very well so far with my impatience.

We have tried to take her for an MRI (one neuro said "why not have an MRI, there is no harm", the other neuro said "lets wait until there are clearer signs before having an MRI). The MRI was not successful because the girl was too restless. The hospital never called back for another appointment. We have also decided to wait because it was too stressful for everyone including the girl. We will continue to monitor her and will probably go for a third opinion but in the meantime, because the signs are not clear and the neuros cannot diagnose it, we will just have to make sure that she has enough sleep and is stress free. We do not want the kids to visit the hospitals and sit there for hours right now since kids are advised not to be in hospitals now unless it is very urgent and necessary.

Sometimes I worry we may be looking for things that are not there because we are worried about her but at other times I worry that we may overlook things by being too casual and dismissing signs that are there. Its so confusing.

I am especially worried after she has fallen asleep because so far the unexplained incidents have happened about one hour into her sleep. Yet at the same time, I can't allow that to disturb my own rest and sleep because I need my sleep as lack of sleep is a seizure trigger. I remember after I had my waking seizures, I felt like a walking time bomb. For the same reason, I am now worried about her.

God, if you are listening, I would like to write down my daily prayer to you. I pray that my daughter will never have another seizure for the rest of her life and I pray that she will not have epilepsy. God, I pray that my son will not have any seizures and will not have epilepsy as well. I pray that my epilepsy will disappear one day soon as suddenly as it has appeared. And I pray that you will cure my husband of the problems he is having. Thank you God. Thank you.

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  1. i do hope what your daughter is having is not epilepsy. I hope it will go off as she grows. take care...

  2. I can truly understand your feeling as a mother. Sometimes we rather the one sick is us rather than the child. I pray to God that your daughter is not epilepsy and non in the family is too.

  3. We mothers do worry a lot for our kids, especially when they are young, cos they dont know how to describe their discomfort to us.. but when they grow older, we worry about their diet and their lifestyle.. staying up late etc etc.. i guess we will never stop worrying...

    oh btw, the website is this


    u can play with yr photos here..

  4. I fully understand your situation. Take things as it comes. Worrying will not help much and your lack of sleep is a serious matter of concern cos you need to be healthy and fit to be around your family members. You need them as much as they need you all the time.

    God hears, sees and acts appropriately in His time. Immerse and be filled with God's strength for He assured the weak and meek will be made strong with His strength.

    God bless you and your family always.

  5. Cowie,
    "Sometimes we rather the one sick is us rather than the child."



    Hey! You still read my blog. I thought you are too busy painting. :)

  6. I truly understand how you feel. And I really hope that God has listened to your prayers and will grant you your wish.

  7. Epilepsy is really hard to diagnose...

    My friend used to scold her daughter for not replying her or staring in the blank for months..She only realised that her daughter is actually have fits at that moment after her friend who had the same experience ask her to see a specialist..

    God bless your girl and pleas take good care of yourself too.


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