Bruises on V's face – something that was so prominent starting May through June. Both the Mother's day and Father's Day photos have V's scars on his face prominently displayed. The helmet could cover his head, but not face, which is what happened on two occasions where he had a head drop and hit his face – once on the concrete wall and once on a pillar. Along with this came another issue we had not thought about with our older one – body balance. He did not have control over his body – this is just one aspect of his sensory issues that he continues to face. Overall, he has good balance now but the sensory aspect is prominent. This is why he has always been an affectionate child, wanting hugs.
Through all of this, there were a large number of people praying for V to get better – family, friends, people we encountered otherwise. We are really grateful for those prayers. My husband and I both had faith that he would get better – when was the question. To get to that point, the patience was too much.
One strong faith tip which I got from my oldest cousin – whom I really like and who has gone through way more tragedy than most human beings – she said every night when he sleeps – put your hand on his head and let him know that he is going to be just fine. He needed to have that confidence that he was going to be alright. I did have the faith but needed to convey that to him. The other thing I realized was that when people called, even if it was the neurologist, to ask me about him and I talked while he was around it would upset him greatly. Getting upset was a trigger for seizures for him those days. So I stopped talking about his condition at all when he was around. He may have been only three and immature on several other aspects, but knew that this was about him, this wasn't good, positive talk and it wasn't something that would help him.
Like getting upset, there were other triggers that would cause his seizure frequency to increase – like when the weather was gloomy – that may contributed to his lack of appetite and not feeling so good in Mumbai with the monsoons; other triggers included crowd and noise – it also impacted his sensory being; he still cannot take it and we avoid going to any show/crowded situation. Sleep was of course, a huge factor. He needed to sleep the right amount at night as well as in the afternoon. We decided to keep to the schedule. We had stopped socializing quite some time back in terms of inviting people over for dinner or going over – we would do it once in a while. We would go and leave by 7:30 or so; we still leave by 8:00/8:30. People look at us like – but this is a weekend. Weekend or not, the routine had to be kept and still does. Extreme heat would be a factor as well as when he felt really hot and for some reason he got sweaty and hot way faster than other kids. Even though getting upset is said not to cause a seizure in cases where he would get extremely upset he would have head drops.
The other thing we noticed is that he needed frequent meals - we normally stuck to the daycare schedule at home for breakfast, snack, lunch but it was clear that if there was a large time period between meals anytime for whatever reason, this would cause fatigue and higher seizure frequency.
Another big factor was bowel movement - if he did not have regular bowel movement, his seizure frequency would shoot through the roof. Now constipation had never been a problem with him before his meds. However, right after he started with his first AED, regular bowel movements started being a big issue. This was something to always keep in mind - had he gone to the bathroom? He was excellent with drinking water so that wasn't a problem.
Another trigger which I absolutely dreaded was if he caught even a simple cold - it would make his seizure frequency go very high. Over a period of time, I started giving tylenol for just a cold or a cough for two reasons:
1. It helped V psychologically. Even now, if he is kind of not feeling good, he will tell me to give him grape juice - the kids tylenol.
2. For some reason, it actually did help with his cold and hence the seizures. It would only be one dose - no more and it was like a magic pill.
Eucalyptus/Vicks was another big trigger. He would have head drops galore after applying either which would have been done earlier if he had a really bad cold. It was discovered by chance and I stopped applying anything containing eucalyptus or camphor.
He never did have a problem with lavender but I read in a couple of places about lavender being a trigger so I stopped buying or using anything containing lavender. V is so good about these things that if are out somewhere and he sees a scented soap, he has me check the ingredients to check if it is alright for him to use it.
Between the time V was one and the time the seizures started, he wheezed those two winters. The few times that he wheezed after his seizures started and we had to use albuterol, the frequency of his seizures increased - again, I think for him, once his medications got mixed up with other drugs, his body reacted negatively. For a long time, I wondered - was there a connection between his wheezing and his seizures? The doctors insisted that there wasn't. There probably wasn't a connection. However, I still keep wondering.
While I was gone to India, one of my husband's co-workers had recommended an acupuncture specialist near home. So when I came back we decided to check it out. I had never done it myself but this was at a point where insurance didn't matter – what mattered was getting him to be alright; check out other avenues. We started on a new adventure while still playing around with the lamictal dosage.
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