Last Monday, my girl had a grand mal seizure in her sleep. It was the most painful thing to watch helplessly as she trashed about as if struck by a hidden electric energy and became limp afterwards. She was unconcious during the seizure but thankfully, she recovered from it well and quickly.
That dashed whatever little hope we had that her night time unexplained incidents were not minor seizures. I have no more tears, only resignation left. So, we just have to move on from here.... finding the right medications and trying to manage her life within these limitations.
The neuro could not decide whether my girl had temporal lobe epilepsy (tle) or benign rolandic epilepsy (bre). She said that medication or treatment given for tle could actually worsen bre if that was the case. In the end, we started treatment for tle. She is now on medication on a step up basis, ie slowly or gradually introducing the meds to her body system. My poor little girl.
Since she has to take medications twice a day, everyday, we explained to her about her condition, that she has epilepsy just like mummy. Naturally, she does not understand the implications of it all. She asked if it was painful when I fell down. 3 years ago, I had had a seizure right in front of the kids when they were playing. I try to treat it lightly so that she would not get frightened about it. We went to shop for a pill box for her so we won't forget to take the medications. We "argued" about what shape she preferred for the box, whether circular or straight. I let her select the colour she likes etc.
She is excited to take the pill for the first time. She had always taken medications in syrup form before this and was so proud that she managed to swallow her first pill easily. I gave her 3 stars for her effort. We are currently on some reward system for good behaviour. So yes, life goes on. There is no other way. Life has to go on. I watched with a heavy heart as she danced and pranced around the mall but take comfort in the fact that at least she is happy.
I can't sleep very well at night, worrying about every little sound. This is made worse by the fact that the hormone pills I had been taking gave me the worse backache when my menstruation finally came. I have yet to return for a follow up visit on my blood test and other test results. I hope the gynae would not have any nasty surprises for me. I have the worse night cough. The doctor said he suspects that I have pneumonia somewhere in the left lung region and he wants me to go back for a follow up to see if it has cleared after some antibiotics he prescribed which left me with a feeling of nausea all day and all night. Otherwise he would suggest and X-Ray. My sister was hospitalised for severe gastric but she is home now and that is a good thing.
My husband believes I am partly at fault for not managing my kids rest time well. Not enough rest and sleep lowers seizure tresholds for those more prone to having one. We worry about the effects and impact of the medication on my girl. There are so many worries. Even before this, hubby has been having health problems of his own. Even before his problems were resolved, I had problems with my health and then now my girl. So many doctor visits... We are both under stress but instead of coming together, we fall apart.
I want to cry but I can't. I know hubby will say "Now, you don't go and make matters worse by getting yourself so stressed up until you yourself get a seizure of your own."
The instructions for the medicine was to cut it by quarters and start on quarters for 5-7 days and step up slowly. We were confused. It is a controlled released tablet. Can it be cut safely and mantain its properties? When do we step up the medication? Earlier or later? The girl is still complaining of "dreaming" and "seeing green green". She says that when she is "dreaming" it is as if she is in a strange new place even though she is at home or at school. The doctor calls this jamais vu. As for the green lights, it is a visual sensory symptom or hallucination. When will the medication start to take effect? So many questions. Some answered by a simple phone call to the hospital, others, we just have to wait.
The girl has missed school for a week. She has mid year test for two weeks coming up in a weeks time. She is worried about all the missed lessons and homework. She is afraid her friends will laugh at her for being absent for so long. I am worried that all her worries will contribute to her stress level. I will talk to her teacher today.
Do you know there is this inflatable punch balloon toy with weights at the bottom? If you punch it, it gets right up again. That is what I feel like at the moment. I wonder when my air will run out.
So what good can possibly come out of all this? Well, at least my relationship with my girl is improving as I dig deeper into my reserves for the patience and time for my little attention seeker. She took a rough paper, folded it in two and wrote "Mummy's card" at the top and "Only for the time being card" at the bottom. Inside, she wrote "Happy Mother's Day" and drew a flower pot with 3 flowers in it. She wrote "Flowers for good, nice and happy mummy" and a heart shape at the bottom. On each side of the flower pot was a heart shape and a smiling mummy and daughter. She wrote "H/W" (which stands for homework) on one side and "Hold Hands" on the other. She said we are happy holding hands and doing homework together. I think she is happy with me. Gone is the sour pouting face she had been giving her always impatient mummy. If you want your child's attitude to change you have to first look at yourself and change yourself first.
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