Our little man is growing up. He celebrated his tenth birthday in November and during December and January we withdrew his epilepsy medication.
It’s always a tough decision. I constantly question whether we’ve done the right thing. The decision came after we had increased his anti-seizure meds, then we saw a steady decline in his behaviour. The final straw was when he ran away from school.
It has been more than a month since he took his last anti-epileptic medication. He is positive, happy and his behaviour at home and school has improved. In fact he’s so good we’ve cancelled his visit to see the hospital psychologist.
For him life is good. One of his besties, who just happens to live directly across the road from us, has slept over a couple of times and they’ve had a great time doing the things ten-year-old boys do.
I knew this would be the catalyst for what our son would ask next. “Mum can I sleepover?”
We class our neighbours as good friends who in an emergency we could count on to help out. They know our son has epilepsy and were more than happy for him to sleepover. I trust them and know if anything happened we are just a door knock away.
So we gladly agreed to let our son have his first sleepover. It went well and our son enjoyed this extra freedom away from the cotton wool that we inadvertently wrap him in sometimes.
Our son has idiopathic epilepsy meaning we don’t know what caused him to have epilepsy, but we do know that a lack of sleep can cause him to have seizures. His seizures occur mostly during the night or early in the morning. Fatigue is his enemy.
A sleepover is a big thing for him and us.
So after the success of his first sleepover, we were all happy and I was relieved that he didn’t have a seizure.
Then he received an invite to a birthday sleepover for one of his school friends. “Mum, can I go? Please mum all the other boys are going.”
I had never met the parents and they didn’t know our son had epilepsy. This was a tough call. Do I keep him safe and flatly refuse to let him go? Do I let him go and risk him having a seizure with someone who’s never dealt with epilepsy? This was agony.
I told him I would have to speak to the parents first. I rang and spoke to the birthday boy’s mum.
“Hi it’s Kelly, thanks for the invite our son would love to come, but just wanted to make sure you were okay with having our son stay over as he has epilepsy,” I spoke nervously.
“……..um no I didn’t know he had epilepsy,” she replied.
I reassure her and me that my son will be fine. Honestly, how much do you tell another parent who is looking after your child for the night about his medical condition??
I opted for the ‘be alert, but not alarmed’ speech. “Honestly, I am quietly confident he will be fine,” I reassured the mum.
“….um how far away do you live?” she asked anxiously. A little more reassurance from me and a promise I could make the eight minute drive in four and a half minutes sealed the deal.
So packed with his iPad, sleeping bag, pjs and emergency rescue medication he ventured out from the safety of our home.
The sleepover went well and surprisingly he opted to go to bed early while most of his classmates partied on well after midnight. Our little man really is growing up.
Take care, Ragdoll Mumma Kelly