Now, all along from the first week of March until the second week of June, with my mother around, I was able to sleep better whenever V slept with her. He would play cards with her and she ensured that when she was with him she didn't leave him for a second. That gave me a few breaks. My husband and I had actually managed to go out for a couple of walks around the block.
During this time, R had enjoyed her kindergarten year, she loved school and loved to play with her brother, oblivious to his abilities and problems. He really doted on her – still does – and would look forward to spending time with her. We were fortunate that somehow she hadn't got impacted through this all.
My husband had also gone to India in May due to a family tragedy. He would not have been able to go if my mother was not around as we couldn't leave V alone at all. Before the tragedy, like I said I had booked tickets for me and the kids and mom in June and my husband in July and he was going to return with us.
My really good friend in Chicago suggested that we show his reports to a good friend of theirs who heads neurology in a hospital in Illinois. I spoke to neurologist number 3 who again did not have another diagnosis nor another suggestion. It was even more frustrating.
The neurologist suggested upping his lamictal dosage and it was to be increased to its peak while I was traveling. I was wondering if that should be done and she said it shouldn't be a problem. She also said that it was fine to travel. Looking back, I think we should have been conservative on the lamictal increase. Along with the dosage increase, about two days before we were supposed to fly, he started having this eyelash fluttering. His eyelashes would flutter a great deal before he actually fell asleep both for his afternoon nap and his night sleep. This was yet another form of seizure we were seeing. It was incredible – could there be so many types and we only knew of the grand mal before this started.
Monitoring his dosage while traveling and the the time zone change (a complete difference of night and day) was challenging to say the least. Once there, of course he was happy to spend time with family but in terms of his overall being, it was a disastrous trip.
It felt like his seizures had got worse, he didn't like the milk and it was so very difficult to get him to swallow his medication which had been smooth sailing at home, he didn't seem to have an appetite at all and I am assuming that with the general changes and stress that is what caused his oral tendency as well – he had none of that at home – the urge to bite or put things in his mouth (he went through the same oral pattern for a few weeks at six and a half - it was his way of relieving stress because he is otherwise really happy).
All the other problems that I mentioned earlier – the language processing, the speech, the behavior impact, the distractions, the tempers sometimes because he would get very frustrated when nobody could understand him or if someone insisted he do a particular thing – it was all too much for the boy. It was difficult to explain to people around – this is not him – this is what he has become, this is what he is suffering from – he has no control over his actions, nor over what and how his brain is working. One cannot say stop and expect him to stop - at the time.
While in India we met neurologist number 4, this time in another country, who suggested we do another EEG, another MRI and start him on another drug – no diagnosis, no other solution. This is the way it was going to be – something my husband and I had resigned ourselves to, unfortunately. I gave in to the EEG but refused to go to the hospital thereafter. This boy who had never cried in all his visits to the hospital and clinic and in fact, had enjoyed them, cried a lot for the first time. It was one of the saddest things I could have done to him. We refused to do the MRI and that was also the end of visit to neurologist number 4.
When my husband joined us later on, I was ready to go back with the kids. V's sleep pattern was still disturbed – some nights were awful – I would have hardly slept. He was very happy to see his dad. On the way back we actually went to the Netherlands for a week. Even though V was having his head drops and his eye flutters, he did visibly better when we were there. The other factor was the milk – the fresh milk there – both R and V gulped it down like they hadn't had milk in years. I know that there is now the tetrapack milk which we used with the kids the next time we were in India. However, the taste still remains different and they are still reluctant to drink it.
We got back, settled down and a few days later started with getting V to the daycare a few hours four days a week. I was called in a few afternoons when right after his nap, V seemed to be doing way worse than normal. The cell phone is something I have carried with me everywhere for four and a half years, no matter if I am on a training run, running a race or in my classroom with the students, wondering if it will ring with that dreaded emergency call.
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