I have not really addressed Ziim’s seizures, as in I have not really taken any major steps towards controlling it, towards seeing that she is seizure free. Of course I give her the prescribed medication, but I am so preoccupied with her other issues that I seem to have accepted some nay saying doctors’ belief that she may have to live with it all her life. Seizures are not just frightening, they disrupt the child and could be harmful to the brain.
No, she has not had any major episode since this day, but she does have the twitches, painfully said daily, mildly put, a few times daily. Of late it has become a number of times and she has become more jerky at every little sound, wakes every morning with the twitches around her mouth and all that. I could just see her building up to another big one. last week I was so paranoid one night that I almost gave her the rectal diazipam in anticipation, can you believe that . Yes o.. but I restrained myself, I just kept a vigil, the diazipam in one hand. But mercifully she did not have the big one and still has not. Nonye you have to do something, I told myself, go to the hospital. I know Ziim has gained a few kilos since the last time her med was upped, that was over eight months ago and I know the dose is calculated by weight. I already know what the doctor will do. Sure I should, six years down the line; he will just scan through her case note, ha, she’s managed for seizures, any problem? Then mummy Ziim will go; “I notice an increase in the frequency of her seizures, she twitches a lot more, I watch even at sleep, I see that”. I fail to give him figures with which he could judge the frequency as compared to what it was and he does not ask. He quickly checks the dose from the entry made by the last doctor we saw. What’s her weight today, he asks me. 20kg I say. Well, let’s see, he’ll pick up his little book, flips through, picks a calculator, hm… we can actually increase the dose, he works it out, writes out the new dosage, picks a piece of paper, gives a three months appointment. Meanwhile, I would have woken up early to be there long before 8a.m and he the doctor would have come in about 9.30a.m or there about, I probably got to see him about 10.30 or later depending on the number of patients that were there before me.
Do I really want to do that?Do I really want the dosage of her anti seizure drug upped? They just load these children with these cognitive dulling drugs, nobody checks the side effect, nobody does any liver function test or such things. Big sigh. Anyways, for now I want to try something else while we maintain this dose of her medication, hopefully in not too long a time the doctors may be led to reduce it. Should have done that since actually, now I have to knock myself for that over no sight. Better late than never abi? Yes o.o!, and in atonement, I am giving it all I can.
In management of seizures and epilepsy, much attention is given to medication and traditional treatment, so much so that what could be a major culprit is neglected—-Diet!!! Why did I not make the connection all these years!!!
Well, I have decided to put my angel on diet, I started by removing all diary products that are laced with gluten and casein!! All cereal!! We are also looking at vitamins with our glasses on! Checking those to take and those not to.
One week now we have survived without the cereals and cow milk. Hm. I make soy milk, our breakfast table is adorned with home made whole grain cereal aka ogi, akamu, not sieved to make it whole and more like food. I make moi-moi. We have eliminated so much and added so much. Our oil is now coconut oil……home made too, sebi we know that coconut oil is reach in vitamin E which has some anti seizure properties. If we can not cure the seizures at least we can attempt to reduce them! Let’s fight the seizures with a combination of diet and medication, I know it is a long fight, but I have the time. We are open to suggestions.