We spent the weekend in hospital, and today being a Monday, they were suppose to schedule an EEG for Vera. Beth called me at 8am to say they were already preparing her for it.
We were expecting perhaps by end day, but there was just one slot and Vera got it. We would have had to wait until Friday for the next available slot.
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| Vera undergoes her first EEG, which reads her brain activity. By reading the waves, doctors can ascertain which part of her brain is showing "irritations" which predisposes her to fits. |
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| Waterfall of wires to plug us into the mysteries of the brain. |
The results show 3 areas of her brain with abnormal activity:
a) a point on right side which presents as either muscle pull at mouth or hand jerks;
b) a point on left side
c) a point at left occiput (back of head)
Dr S confirms that the video shows a cluster of myoclonic seizures as well.
Her plan is to start her on Epilim. And this will be at least for a period of 2 years. If she remains 'seizure free' for 2 years, then can we start to wean her off the medication.
Her dosage is currently at 1ml twice a day. They will progressively up it to 3ml twice a day, over the next few days, to gradually get the body up to the required dosage for weight. The side effect of any fit medication is drowsiness. So we pray that the doctors will find the right dosage that would be just enough to control the seizures without making her too dopey while she's awake.
I do still want my excitable little girl : (
I thank God for the speedy team effort this morning, diagnosis and medication. I will write more later about the excellent team at NUH. Vera is now drugged out by the hydroclorate, which was the medication I had intended her to get when I checked her in. I know that with this, she will have a very good long sleep and really get the rest that she needs. It is a short-term medication, but we've seen how helpful it is in resetting her sleep clock.
Meanwhile, since she is well-monitored in the ward, the Respi team will attempt to titrate her from 13/7 up to her recommended setting of 16/7. Given our past 3 failed attempts to even reach 14/7, this leap, if successful, will be nothing short of a breakthrough.
So many miracles already have shown themselves through this little girl, from the day she was born. Her chiropractor said to us, 'She is a miracle'. I now know she is a gift from God, so bursting with multiple miracles that I just cannot not see.
a) a point on right side which presents as either muscle pull at mouth or hand jerks;
b) a point on left side
c) a point at left occiput (back of head)
Dr S confirms that the video shows a cluster of myoclonic seizures as well.
Her plan is to start her on Epilim. And this will be at least for a period of 2 years. If she remains 'seizure free' for 2 years, then can we start to wean her off the medication.
Her dosage is currently at 1ml twice a day. They will progressively up it to 3ml twice a day, over the next few days, to gradually get the body up to the required dosage for weight. The side effect of any fit medication is drowsiness. So we pray that the doctors will find the right dosage that would be just enough to control the seizures without making her too dopey while she's awake.
I do still want my excitable little girl : (
I thank God for the speedy team effort this morning, diagnosis and medication. I will write more later about the excellent team at NUH. Vera is now drugged out by the hydroclorate, which was the medication I had intended her to get when I checked her in. I know that with this, she will have a very good long sleep and really get the rest that she needs. It is a short-term medication, but we've seen how helpful it is in resetting her sleep clock.
Meanwhile, since she is well-monitored in the ward, the Respi team will attempt to titrate her from 13/7 up to her recommended setting of 16/7. Given our past 3 failed attempts to even reach 14/7, this leap, if successful, will be nothing short of a breakthrough.
So many miracles already have shown themselves through this little girl, from the day she was born. Her chiropractor said to us, 'She is a miracle'. I now know she is a gift from God, so bursting with multiple miracles that I just cannot not see.
3 comments:
I have seizure and it is interesting because when i had my first fit, my family also thought that i am possessed ;)
It seems that most patients with epilepsy are treated with epilim. The doctor prescribed me that too, but i started having heart palpitations so i switched over to lamotrigine. My doctor is at NNI and the NNI folks are an awesome lot.I am happy to know that the NUH team is doing a good job too. Looks like only the best doctors are kept in the neuro department;)
Yes, epilepsy, a tag i hate to be associated with but had come to terms with.My doctor told me that i will be "wean" off my medication if i am seizure-free for 2 years. I prayed so hard for that. Unfortunately, after i reduced my dosage, my seizure came back and i am put on a 5 year term.
I am still on medication. I may never be cured of epilepsy, but i am so happy that at least, i am alive and breathing.
Every child is a gift from God. I am sure God gave you a miracle-your baby vera, to tell you that there are no mountain too high that you can't climb, or a river too deep that you can't cross.
"Even though I walk through the darkest valley,
I will fear no evil,for you are with me"
It is great that you had set up this blog so we can keep hearing tales of how little vera slained the evil dragons, jump over the valleys of death and create miracles after miracles.
Keep it going!
So glad that you found out the answers to the unanswered questions. Will keep praying for Vera.
By the time I read this post, Vera is already well and about. :) Thank God!
And I have to agree with you that NUH staff are the best so far (a close second is TTSH). :)
Kay
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