18 Nov 10
The neurologists have not been able to give us a proper diagnosis.
When we stumbled across niamhs' blog, we found that charlene's condition is very similar to her medical condition, migrating partial seizures. Coupled with the fact that some medical literature had shown that potassium bromide has some success in the same condition,it seems to indicate that Charlene's condition is that. The blog noted that migrating partial seizures have no attributable cause medically, though the medical science suggests that mitochondrial disorder is a likely cause.
Interestingly, one doctor, a geneticist told us in Oct that she suspect Charlene's underlying condition could be due to mitochondrial disorder.
however to confirm the diagnosis, a muscle biopsy has to be performed. It is invasive in nature as it requires surgery so she advised us against it. DNA testing are expensive so she will only recommend it unless we have "limitless funds". It also has no therapeutic value bec the mitochondrial disorder has no treatment currently.
Thursday, November 18, 2010
Tuesday, November 16, 2010
16 Nov 10
4 Nov 10
To our friends who have been regularly checking our blog for updates, our apologies for the late updates.
Today is the last day of school for Charlene (school holidays!)
Charlene cried a lot in the morning and it was obvious again that she wanted to sleep but could not as her needs are not satisfied (but I don't know what she wants). When we boarded my neighbour's car, she stopped crying and started the moment we got out of the car. When we stepped into the classroom, she stopped crying again. Ah, it must be the weather.
Charlene cried throughout her physio session. But her head control and rolling has improved (despite her lack of practice for the past 2 weeks). Praise the Lord!
The teacher then brought Charlene to the multi-sensory room (the last time Charlene slept throughout and didn't know she was in the room). Charlene started making some cries which seem to indicate that she is excited with the lights. But she became very tired (because of the previous physio session) and started to cry.
To our friends who have been regularly checking our blog for updates, our apologies for the late updates.
Today is the last day of school for Charlene (school holidays!)
Charlene cried a lot in the morning and it was obvious again that she wanted to sleep but could not as her needs are not satisfied (but I don't know what she wants). When we boarded my neighbour's car, she stopped crying and started the moment we got out of the car. When we stepped into the classroom, she stopped crying again. Ah, it must be the weather.
Charlene cried throughout her physio session. But her head control and rolling has improved (despite her lack of practice for the past 2 weeks). Praise the Lord!
The teacher then brought Charlene to the multi-sensory room (the last time Charlene slept throughout and didn't know she was in the room). Charlene started making some cries which seem to indicate that she is excited with the lights. But she became very tired (because of the previous physio session) and started to cry.
Sunday, November 14, 2010
14 Nov 10
14 Nov 10
We took a leap of faith and decided to bring Charlene to service. She started being cranky again. Pastor Tim's wife, Phe nie prayed for Charlene and carried her. Charlene had the excited look and even looked happy at times (we have not seen these expressions for sometime). She told us to focus on worship and carried Charlene.
After we reached home and after milk, Charlene slept soundly throughout the afternoon. She woke up in the evening and was awake and alert.
She went back to sleep and did not cry till 6+am. Praise the Lord!
We took a leap of faith and decided to bring Charlene to service. She started being cranky again. Pastor Tim's wife, Phe nie prayed for Charlene and carried her. Charlene had the excited look and even looked happy at times (we have not seen these expressions for sometime). She told us to focus on worship and carried Charlene.
After we reached home and after milk, Charlene slept soundly throughout the afternoon. She woke up in the evening and was awake and alert.
She went back to sleep and did not cry till 6+am. Praise the Lord!
Friday, November 12, 2010
12 Nov 10
12 Nov 10
Charlene was still cranky and cried quite a bit in cell. And the button always choose the wrong time to leak. I have to rock her to keep her quiet.
Thank God for Christine who helped us to carry Charlene so that we could rest and listened to others' testimonies.
Charlene was still cranky and cried quite a bit in cell. And the button always choose the wrong time to leak. I have to rock her to keep her quiet.
Thank God for Christine who helped us to carry Charlene so that we could rest and listened to others' testimonies.
Wednesday, November 10, 2010
10 Nov 10
10 Nov 10
This afternoon, 2 of our cell group members came to visit Charlene and me. Charlene was sleeping soundly so they talked to me and prayed for me. It's nice to know that there are people who care.
This afternoon, 2 of our cell group members came to visit Charlene and me. Charlene was sleeping soundly so they talked to me and prayed for me. It's nice to know that there are people who care.
Tuesday, November 9, 2010
9 Nov 10
9 Nov 10
Charlene went for her Barium Swallow meal today to check for reflux. Thank God, her preliminary results showed very little reflux!
And for the first time in a week, Charlene was awake and quiet and not crying.
Anyway, I went to look for staff nurse Cindy (neurologist's nurse). She is very nice and even check Charlene's teeth voluntarily. It seems that Charlene might be growing teeth and that might be one of the reasons why she kept crying.
Charlene went for her Barium Swallow meal today to check for reflux. Thank God, her preliminary results showed very little reflux!
And for the first time in a week, Charlene was awake and quiet and not crying.
Anyway, I went to look for staff nurse Cindy (neurologist's nurse). She is very nice and even check Charlene's teeth voluntarily. It seems that Charlene might be growing teeth and that might be one of the reasons why she kept crying.
Monday, November 1, 2010
1 Nov 10
1 Nov 10
Thank God for His abundant grace today! So many amazing things happen....
This morning, Charlene woke up and started to whine and whimper again. But she was awake and was looking around in the taxi. For the first time, she did not cry in the taxi journey. I told the taxi uncle that he is going to strike Toto for my daughter has never failed to cry in a taxi journey!
Initially, at the Eye Centre in KKH, Charlene is looking around but shortly, she started to whimper and it escalated to loud crying just at the moment when her eyes were to be checked. The optometrist told me to calm her down first. After like 20 mins, she was still crying on and off. The nurse came and said that if Charlene kept crying, we would have to come again another time. I told Charlene to cooperate.
Then all of a sudden, she stopped crying. Amazing! And in the short period (10 mins) that we were in the doctor's room, she was totally cooperative. The doctor used the analogy of a camera (eyes) connected to a computer (brain) using a cable (linkage) to illustrate the problem. At the moment, the camera which is Charlene's eyes are working fine. So the problem could be the brain or the linkage. The doctor said that nobody is sure whether Charlene can see or not but she told me to treat Charlene like a normal child and continue to expose her to visual stuff.
We then brought Charlene to the Children Surgery Centre. Cos we did not know what cause Charlene to cry, we thought might as well check if the button is fine. Normally, Charlene would wake up and start crying the moment we put her on the table for the doctor to examine. She slept throughtout and the doctor was quite pleasantly surprised. Again, she never failed in crying on the table of the surgeon.
The surgeon is pleased yet again with how well Charlene's button site is being taken care of. I told her that I needed to raise some concerns that might not be related to her specialty but she was very helpful and willing to listen. I told her about Charlene's excessive crying for the past few days and our hypotheses; reflux, phlegm, spine. After hearing that Charlene would stop crying when in prone position, she too said that reflux could be a possibility and asked if I would like to send Charlene for the barium swallow test to check. However, if it's really due to reflux, the only solution is re-surgery (re-do the fundoplication).
She said that it could also simply be Charlene's brain condition. And after hearing that the seizures are hardly happening, she said that Charlene's awareness might be heightened (which is good). But external stimuli could possibly irritate her quite a bit (too things like noise, clothes sticking to her skin) and caused her to cry. Last but not least, she might be having some pain somewhere. She proposed giving Charlene some panadol. If she stops crying, that suggests that Charlene is really experiencing pain somewhere in her body. However, if she continues to cry, then it might be due to the brain.
After that, we brought her to Ward 66 and the nurses were very helpful and did a suction for Charlene. The nurse said that Charlene doesn't have a lot of phlegm.
Thank God for the surgeon and the nurse who went the extra mile to help us!
Later on at home, when I carried Charlene and sang songs to her for half an hour, she did not cry. She was listening to me attentively. I was very happy and thankful.
Yesterday in church, Wendy told me that her mum said that Charlene might be experiencing cerebral irritation. While surfing for more information on this condition, I stumble upon a blog and it was a major discovery! The blog was also a journal from the parents of a girl who had migrating partial epilepsy. Whatever was described sounded so familiar to what Charlene had gone through. "No known cause found. All genetic, metabolic tests and other tests came back negative. The child has some good days (few seizures) and bad days (a lot of seizures). The child is on many anti-convulsants but they don't seem to control the seizures. The child has many medical complications". The blog provided many useful information that the doctor had and could not have told us.
Thank you Lord for today.
Thank God for His abundant grace today! So many amazing things happen....
This morning, Charlene woke up and started to whine and whimper again. But she was awake and was looking around in the taxi. For the first time, she did not cry in the taxi journey. I told the taxi uncle that he is going to strike Toto for my daughter has never failed to cry in a taxi journey!
Initially, at the Eye Centre in KKH, Charlene is looking around but shortly, she started to whimper and it escalated to loud crying just at the moment when her eyes were to be checked. The optometrist told me to calm her down first. After like 20 mins, she was still crying on and off. The nurse came and said that if Charlene kept crying, we would have to come again another time. I told Charlene to cooperate.
Then all of a sudden, she stopped crying. Amazing! And in the short period (10 mins) that we were in the doctor's room, she was totally cooperative. The doctor used the analogy of a camera (eyes) connected to a computer (brain) using a cable (linkage) to illustrate the problem. At the moment, the camera which is Charlene's eyes are working fine. So the problem could be the brain or the linkage. The doctor said that nobody is sure whether Charlene can see or not but she told me to treat Charlene like a normal child and continue to expose her to visual stuff.
We then brought Charlene to the Children Surgery Centre. Cos we did not know what cause Charlene to cry, we thought might as well check if the button is fine. Normally, Charlene would wake up and start crying the moment we put her on the table for the doctor to examine. She slept throughtout and the doctor was quite pleasantly surprised. Again, she never failed in crying on the table of the surgeon.
The surgeon is pleased yet again with how well Charlene's button site is being taken care of. I told her that I needed to raise some concerns that might not be related to her specialty but she was very helpful and willing to listen. I told her about Charlene's excessive crying for the past few days and our hypotheses; reflux, phlegm, spine. After hearing that Charlene would stop crying when in prone position, she too said that reflux could be a possibility and asked if I would like to send Charlene for the barium swallow test to check. However, if it's really due to reflux, the only solution is re-surgery (re-do the fundoplication).
She said that it could also simply be Charlene's brain condition. And after hearing that the seizures are hardly happening, she said that Charlene's awareness might be heightened (which is good). But external stimuli could possibly irritate her quite a bit (too things like noise, clothes sticking to her skin) and caused her to cry. Last but not least, she might be having some pain somewhere. She proposed giving Charlene some panadol. If she stops crying, that suggests that Charlene is really experiencing pain somewhere in her body. However, if she continues to cry, then it might be due to the brain.
After that, we brought her to Ward 66 and the nurses were very helpful and did a suction for Charlene. The nurse said that Charlene doesn't have a lot of phlegm.
Thank God for the surgeon and the nurse who went the extra mile to help us!
Later on at home, when I carried Charlene and sang songs to her for half an hour, she did not cry. She was listening to me attentively. I was very happy and thankful.
Yesterday in church, Wendy told me that her mum said that Charlene might be experiencing cerebral irritation. While surfing for more information on this condition, I stumble upon a blog and it was a major discovery! The blog was also a journal from the parents of a girl who had migrating partial epilepsy. Whatever was described sounded so familiar to what Charlene had gone through. "No known cause found. All genetic, metabolic tests and other tests came back negative. The child has some good days (few seizures) and bad days (a lot of seizures). The child is on many anti-convulsants but they don't seem to control the seizures. The child has many medical complications". The blog provided many useful information that the doctor had and could not have told us.
Thank you Lord for today.
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