My oldest son (9 years old today) Marcus Jr just spent a whopping 3 days in the Henry Ford Epilepsy Monitoring Unit being observed to perhaps see why he even has seizures, and for three days…nothing. So fast forward to this week, for the past couple of days Marcus Jr has looked a bit under the weather. Now, I’m not sure if it is the Divine Child drink that we’ve started back on (I’ll come back to that in a moment) or if it is something else. But, it seems that whenever is body is dealing with something internally, the reaction always seems to be a seizure. This weekend he had two, he had one at a friends house and he had another at church. Well I am just baffled because we had been without a seizure since right after Thanksgiving and his last hospital visit courtesy of G6PD.
At this point I am sick and tired of seizures and I wish they would just go away and leave my baby alone.
We have had a meniguire of tests: EEG’s, CAT Scans, test to see if he was allergic to any foods, gluten, fruits and vegetables, nothing. Nothing has become of all of these tests, thank God teachers and others have seen him have these episodes or his neurologist might peg me as a crazy mom.
I just want my baby to be healthy, I don’t want to have worry about if he’s OK, if he will fall and hurt himself, if a seizure will kill him. I try my best to let him live, let him experience all that life has to offer but man is it hard.
I pray that this is a phase and that he will grow out of it. I try to reduce stressors, always keep his surroundings, positive and upbeat and make sure he gets plenty to eat and plenty of rest. I make sure he gets his seizure meds and makes sure his body is supplemented with what it is lacking.
Marcus, Jr’s seizures started off very mild, they would be periods of staring, face losing color quick 30-45 seconds very quick. Then they morphed into these super seizures of sorts, where 4-6 times a day he would have these episodes of stopping, staring, some tremours, drooling, losing color, rapid heart beat, trouble swallowing. During all of those episodes he was always responsive but something has changed, not sure what it is but the last few seizures he has not be responsive, he has not popped out of them as quickly as in the past. So back to square one and journaling his every bite, every supplement and every activity.
I wish I had a crystal ball to tell me what to do, I wish God would just pick me up and lead me in the right direction to make my baby better. I hate that kids have to get ill and that we as parents have to watch. I used to think that it was some sort of cruel joke being played on me by the universe but I now see it as an opportunity for me teach myself and others patience, kindness and love. My son’s ailments are not a curse, they are lessons.
I pray for a cure for epilepsy for all. I pray for a cure for my son, I don’t care about my epilepsy as I have learned to deal with it and it is controlled by medication. But, for him I want a cure for the autism and epilepsy they are issues that a 9 year old just shouldnt have to deal with.
So for now I document and pray that something will give and that his recovery is coming soon.
If your child is dealing with epilepsy what type of seizures, what medications and or natural treatments and how do you help your child cope?
Love and Blessings