We started Greyson on his anticonvulsant, Trileptal on Friday evening. Saturday morning, we gave him the second dose 12 hours after, as directed.
Derek and I did not notice any changes Friday, but Saturday morning we experienced a strange side effect from the medicine. Greyson seemed to have lost the feeling/control in his legs, stumbling around and unable to get up off of the floor. Though this was brief, the sight of G on the floor, unable to stand was terrifying. Luckily, this is only a common side effect caused by dizziness and a vertigo-like feeling. Another side effect we have noticed is that he is extremely sleepy. We have held off on giving him melatonin at night because he’s been so tired. He’s sleeping about 8-10 hours AND napping during the day for 1-3 hours.
Some positives have come from the medication (though it’s still a low dosage). G has been so much more happier and has been crying a lot less. Not sure if this is because he’s getting adequate sleep now, or if the headachss have decreased with the medication. Greyson has also been a lot more tolerable of us picking him up and holding him. We were unable to hold him for longer than 15 seconds at a time before the medicine, but now we are averaging 2-3 minute holding sessions with him. He even let me hold him until he fell asleep for a nap on Saturday afternoon, which i have never been able to do in his 1 year, 363 days of existence.
Derek and I finally see some hope in our situation. We know it’s not ideal and that we have an extremely long road ahead of us, but having some sort of answer has given us some relief of the stress and tears we have endured for 10 very long months. With Greyson’s 2nd birthday quickly approaching (on Wednesday), I wish that we will find more answers and information about how we proceed. I wish that this next year brings a much happier little boy, who will have the ability to communicate more efficiently and participate in “normal” 2 year-old boy activities. I am so incredibly blessed to be the mother of such an adorable, funny and loving little boy, and I am praying we have more answers and progress by his 3rd birthday.
More sleep and more cuddles are just as good for you as they are for Greyson, I’m sure! It seems like he is getting the best treatment, along with the best parental support and advocacy possible. I’m enjoying following your family’s journey and am wishing you all ththe best!
Holding him I’m sure was everything this I hope continues yay for progress!!
So happy for the moments you had to hold him!
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