For extra fun they change in nature and some of his movements can look like seizures, but they aren’t. As a result we are always on the back foot and puzzling over what he’s doing and if it’s a seizure or not.
I worry about trying to convey this to other people who care for my son.
As a result I worry that they may miss-read the situation and use rescue medication when he does not need it. Not through negligence or malice, simply through misunderstanding him & his condition.
I worry about Sudden Unexplained Death in Epilepsy (SUDEP).
I worry about him choking on vomit if he has a seizure at night.
I worry about walking into his bedroom in the morning & finding him gone, much like a new parent can when thinking about cot death.
I worry that the seizures are making him too tired, which ironically can make him more likely to have seizures.
I worry the seizures make him sad.
I worry the seizures will cause him to lose what little skills he has learnt, or stop his development from progressing further.
These are worries linked to his main condition. I also have worries to do with the side effects.
I worry about his reflux causing him pain and discomfort.
I worry about his tone causing him to be uncomfortable, at times we’ve had him screaming for days on end.
I worry about the effect of his immobility has on his little body. On his muscles, back and hips.
I worry about the implications of his regular vomiting, aspiration and chest infections mainly, but also random things like the acid on his teeth enamel.
I worry about his reflux getting worse and him needing more dramatic interventions, a fundoplication, or continuous feeding or J feeding.
I worry about the effect of general anaesthetics.
I worry he isn’t growing sufficiently, especially when he is being sick numerous times as day and losing calories. When he’s not being sick I worry when he gains too much weight in too short a time period.
Due to the ketogenic diet I worry he is malnourished.
I worry when he doesn’t poo for a day or two.
I worry when his poo is too runny or too frequent.
I worry if I Google something.
I worry if I don’t Google it.
I worry if he hasn’t had enough sleep.
I worry if he sleeps too much.
I worry he’s on too many medications.
I worry about the side effects of the medications.
I worry about the interactions of the medications.
I worry about the unsuitability of our housing to meet his needs and keep him safe.
I have more normal worries too. I worry that he’s happy. That he enjoys his life and experiences. That he forms bonds with people, even if he doesn’t see them much.
These are the worries concerned with my lad.
There’s further worries to do with my husband, myself, the cat, our friends and family. It’s truly exhausting and no wonder I collapse into bed every night.
The emotional tiredness of caring for my boy far outstrips the physical.