15 Jan 2013 - Video EEG results

Potassium bromide was weaned off on Christmas day, based on the  neurologist's advice. Charlene has been on 1 anti-seizure medication since then.

We noticed an increasing episodes of seizure-like events, where she will scream loudly. Some of them look like fits as she will stiffen her body and become inconsolable. Others look like she has difficulty controlling her emotions, cos when we picked her up, she will stop immediately. Another observation is that Charlene was constantly tired and slept for prolonged hours. Her sleep was also affected by sudden awakenings. She could at best sleep through 3 hours without any disturbances. Concerned with the increase in number of episodes and her sleepiness, we called the hospital to arrange for a 24 hr video EEG. The appointment was scheduled on 14 Jan 13, and we stayed overnight till 15 Jan 13.

A video EEG records the brainwaves of Charlene for 24 hours, with a concurrent video recording. EEG is the best way to determine whether an event is seizure or not. With the video of Charlene behaviour, we could then learn to see which behaviours correspond to actual seizures. That will allow us to better track the effectiveness of the medication.

The results showed that majority of the episodes are fits and it is the fits that disturbed her from her sleep. She is currently having an average of 2 seizures every hour. That is an increase of the number of events prior to the cutting of potassium bromide. The doctor matter-of-factly said that this showed that potassium bromide was probably effective in controlling her fits to some extent.

Knowing that the number of seizures are high, the doctors recommended 2 options.We could choose to put back potassium bromide, but it is a tertiary ("last-defence") drug with serious side effects. The other option is to give Charlene another type of anti-seizure drug. It is unknown whether the new drug will be effective, but it is clear that the drug is less sedative for her. What it means is that Charlene quality of awakefulness will be better.  In fact, after the removal of potassium bromide, we could see Charlene's muscle tone improving; she could sit leaning on me and hold her head by herself for almost 25 minutes. Also, her swallowing has improved and hence she is accumulating less phlegm. She also shows her capability to learn new things like crying until she is carried. The doctors said that her brain is able to learn because she is no longer sedated heavily.

Weighing the costs and benefits, we decided to opt for the new drug.

Please pray that Charlene will not have any allergy to the new medication and that the new medication will be effective in controlling Charlene's fits. Please pray that her major seizure episodes (last more than 15 seconds) will be reduced gradually and eventually eliminated from her life. Pray that Charlene will continue to develop cognitively, and that she is protected from the destructive effects of the seizures.

Reflections of 2012

It is really so easy to forget all the good things that God has done. As 2012 comes to an end, it is a time of reflection and counting of the blessings God has granted in the past 365 days.

1) Continual healing of Charlene

- Charlene was healed of her heart condition

- Improvement of muscle tone and response
- Improvement of oral movement and swallowing

Charlene's muscle tone has also improved quite a bit. She can turn her head left and right easily now. She can push her head up and hold for 3 seconds when lying on her tummy. She can also sit and hold her head in the Rodeo or neurosuit for half an hour. Charlene's response time has improved a lot too. She will cry and call for us when she needs us (hungry, wet diapers, wants to be carried). If we say that she is naughty, she will "protest" too. And she can indicate her preferences as well (e.g. fussing throughout taxi ride because she doesn't want to go out and wants to sleep, cooing because she wants to continue to play with the toy when the music has stopped). Her oral movement has also improved substantially, as we can see her have good oral movement during feeding exercises. Her lips will make all sorts of shapes, her tongue will move to taste the liquid, and her swallowing has improved too. We also noticed that she talks to us, in the sense that she can make a variety of consistent sounds. They definitely mean something, but we haven't deciphered what those consistent sounds mean specifically.

2) Therapy equipment 

- Neurosuit

We originally wanted to purchase a new neurosuit. But while it is taking its time to come, God helps us to obtain a second-hand one through a private therapist. The savings from the neurosuit was the same amount that we have previously  given to God for our church building funds. 

- Rodeo (positioning chair)

We also obtained the Rodeo for Charlene at half price (50% was subsidised). Luckily, we got it earlier as we no longer qualify for the subsidy anymore due to the change in the criteria (household income has to be below $1.7k).  

- Free gym mat

We got a used gym mat for free thanks to my tuition boy's mum and her friend. A new gym mat would have cost us $200. The gym mat was hard and sturdy and was useful in helping Charlene to lift her head up in prone.

- Music therapy

Charlene started having music therapy in school. She is more motivated as her physio exercises take on a different meaning and are more purposeful (e.g. reaching her hand out to touch the drum, lifting her head to see the music instrument). 

3) Finances 

When our financial consultant came for a yearly review, she was surprised that our savings remain intact. We were pleasantly surprised too. Thank God for providing me with tuition assignments which helped cover my monthly insurance premiums. We also thank our church friends, our friends and our family members for the ang bao they have given. 

4) Social activities 

2012 has also been a year which we found ourselves more confident and capable to manage Charlene when outside. Hence, we have brought Charlene to many social functions such as church wedding, special needs children's birthdays and xmas party, friends' house, symphony orchestra performance, karaoke and Gardens by the Bay. These activities have allowed us to have a chance to take a mental break and hopefully provided new experiences for Charlene.

5) Reassurance from God

During the cleansing stream retreat, two strangers who knew nothing about our situation prayed for the issues that we have been struggling within our lives. We knew that God is reassuring us that He knows our problems and He is with us. 

6) God opened door for second medical opinion

God uses other sisters to urge me to bring Charlene to NUH when she was down with diarrhea. There, God paved the way and allowed us to seek a second opinion from the NUH neurologist at a subsidised rate. This doctor will explain clearly to us the rationale of why we are taking off medicine, the interpretation of EEG results and will listen to our concerns and allow us to make our own decisions. He also shows more care and concern for Charlene. We have since taken phenobarbitone off Charlene which has seen a substantial improvement in her muscle tone and head control. We have also taken potassium bromide off her and she is currently on just one anti-epileptic medicine (down from 4 medication during Charlene's 1st year).

7) Good health

It is really amazing. Charlene has zero hospital admission in 2012. Other than the common flu and colds, she had diarrhea and blisters once. God has really protected Charlene and blessed her with good health.       

8) Coping alone

I never thought it would be possible to handle Charlene alone. But when Dez has to go overseas to work for three weeks, by God's grace and the help given by church mates, I managed by myself.

9) Social support
We continue to receive social support from our church friends, our uni friends, my support group friends and Des's colleagues. Their help and frequent visits helps break the monotony of the life in caring for Charlene. We know that they go out of their way to help us and visit us... so we are grateful to their presence in our life. We pray that God will bless them abundantly.