While going through acupuncture, one of the doctor's assistants who was really fond of V and did his needles almost every week for him, suggested that to calm him down I should try feeding him daikon. This was my very first introduction to something nutritional to help any of V's problems. Daikon is high in magnesium and its skin even contains protein. Otherwise, nutritionally, I would do what was a normal, healthy, balanced diet without really changing V's habits at the time. His favorite food was pasta in any form; he also liked rice and rotis(Indian bread) a lot as well as dosas. I would often make veggie parathas – mixing veggies in the dough while making the Indian bread – something that had become a habit since R was a year old; it was a painless way to get veggies in.
V was extremely impulsive. He would have the most spontaneous reactions always. He could not control his impulses – the combination of the seizures and AEDs was deadly. While doing my credential, something that was taught in my educational psychology class stuck in my head – one of the most important thing to teach children is delayed gratification. I knew that R already had it. She would be saving up, careful, calculating. V needed a great deal of work in this area. So the calming that this doctor suggested was useful. I started grating daikon in his food - since daikon is white and grated small it blends in easily with the creamy pasta sauce or even rice.
While increasing the dosage of lamictal, it had become at first twice a day, then three to four times a day for the medication. He was upto 200 mg. of just the lamictal per day – those drugs are really strong. And V was still 3 years old.
Imagine being pumped with drugs day in and day out day after day – at that time for about seven months and being expected to behave and do things like everybody else – it was like asking for the impossible it seemed. The unawareness of the environment would translate in many ways. For instance, if we went to the library, he could not asses how loud his voice was. This was disturbing to people around but he was oblivious to this fact. Given that he was unaware, this had to be ingrained in him. Also, given his memory loss, he could not remember the expected behavior in the library. The other way the memory issue would come up is that he could not remember people's names. If he was introduced to somebody, he would ask for the name again. Within a couple of minutes he would ask the same person his/her name again.
People didn't realize it. They would say, don't you remember – my name is xyz. The same thing would happen with other statements. They would go, don't you remember – I told you… and of course, he really did not remember. For that matter, he needed to know what the word remember meant, just like the word stop. All this gave me a lot more insight into the kind of language to use with kids – how some language even if unintended can really hurt the child. It is the same as when he could not identify his color labels. People would ask what color do you want? He would point it out. Several times it would be like – don't you know this is blue or yellow? So when I hear parents complaint that their child does not know the colors or letters by a certain time period, I am itching to say something – each child to his/her own. Don't look at the short term gain. Look at the long run – the child will be fine in the long run. Does it matter whether or not the child got an A in a certain subject in a certain grade or is it important that eventually the child succeed in life later on? That was what we came about to learn.
The increase in the lamictal did not seem to lessen the frequency of the seizures. They seemed to be about the same. So I figured why not keep it at the lower level? This was the first of many decisions I would make on his medications without consulting the neurologist. All along, we thought we need to do whatever was suggested by the neurologist – after all doctors know best. We were not trained, nor did I have the expertise in anything related. At least after doing my teaching credential I can claim to be a little more knowledgeable in the field of child development and psychology as well as special needs and accommodations.
The decrease didn't do any harm. This is how it continued. This continued until V's four year check up with his pediatrician. Everyday I kept hoping and wishing that this would magically stop.
In December, however, upon my husband's insistence, I agreed to a vacation – after all, things weren't exactly changing here. I had traveled with him to India. This was just a three hour difference – to Cancun. He loved the beach and water so as long as we were watching him, it should not be any worse. So we did go, we had a good trip We also went to Chitchen Itza where V climbed the 100 steep steps. We came returned to life back here.
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