Through all this time period, however bad the daytime or reasonable the daytime, nights were what I dreaded the most. Culturally, it is common for kids to sleep with parents, growing up Indian. Also, initially, I didn't have the heart to move him away, not knowing what to expect. As the days went by, I realized, it was very important to monitor him in the night as it gave me a chance to think back to what had been going on in the day – his routine, naps, food, physical activity, school, etc. – to see what was it that was working and what wasn't. Also, as I mentioned in an earlier post, he would need the sensory touch almost every night. Even now, he does not necessarily have smooth nights. Yes, he sleeps well through the night but he may have a period of an hour or so when his sensory system needs to be calmed.
Muscle jerking and twitching all of which are related to his seizure activity is what would be a regular almost nightly occurrence. Some nights it would be more, some less.
During the two years of his starting seizures, he would have a disturbed sleep like I said. Every time he awoke, he would have seizures, everytime he then tried to get himself to sleep, he would have seizures – either the grunting or the eyebrows or eyelash fluttering or a combination of all. It was disastrous listening to him wake and help him fall asleep.
The muscle jerking and twitching would vary – sometimes it was hands, sometimes the legs, sometimes, just fingers. Sometimes he would want to feel around with his fingers while his eyes were shut tight. Later, as he got better and his diet was controlled, I could pinpoint certain things that caused the jerking. If he ate chicken that was not natural/organic – that was a sure-shot jerking problem. If he ate ready processed chicken – that was another reason for the jerking.
One thing I found as the weeks went by is that if he spent time in the bath tub his muscles would be way better. About a year after his seizures had started, we had started putting him in the tub because he liked it so very much but with one of us always sitting there no matter if he sat in the tub for a half hour. Sometimes we would stand right outside folding clothes. Also, adding bubbles to the tub made it way better - the texture of the bubbles was good for his sensory being and it helped him feel calmer. The bath is a daily routine with him even now - anywhere from 20 minutes to an hour sometimes - it is also his way to relax, to do imaginary play, to talk to himself or to us - it is entertainment for the entire family.
The yelling in the night – when his sleep was disturbed – I am still not sure if it was a seizure that would cause him to yell or just a bad feeling in his head – either way he was disturbed and it would often be while he was still asleep.
Talking and dreaming vividly in his sleep is something I realized over a period of time happened when he ate certain foods:
- containing Omega3
- containing soy; V would talk complete sentences while deep asleep– it was scary – it would be about whatever dream he was having.
- on those two days that he was on Keppra he had the vivid dreams and the talking sentences
Like I mentioned earlier, right while falling asleep and right after he woke up in the morning and after his afternoon nap, he would have the maximum seizures.
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