Hi my son 14 has epilepsy it is scary watching him have seizures he blanks out when he out but he had fits at home I wish I cud take it away from him
My son started at 14. He had 8 in a month. It was horrendous. Dont think ive sleep properly in 4 years. Now hes only had one big seizure a year, both on xmas day for some reason, but is having absences every day. Now my daughter who is nearly 14 has now got photosensitive epilepsy. My world has been turned upside down. Two children with epilepsy. Im finding it hard to cope.
It must be really difficult for ya having both children with condition I find it hard with just my lad having absent epilepsy with him having autism emotional behaviour problems intellectual development disorder and learning difficulties he can get bit too hyper and jump about the place and nearly banging his head we’re having to tell him to be careful not to bang his head and when he nearly banged his head next to the wall he started hitting the with his hair brush then swears at it for been there it can be mentally draining at times last night had to take his phone away so that he cud get decent night sleep coz even late nights cud set his epilepsy off so try get him off to bed for 9.00pm sometimes I get worried about him having fit in shower and falling out the bath or falling downstairs am always on edge every time I hear noise keep thinking it’s my lad having fit so am always jumping up on my feet to make sure he ok
My family are exactly the same as this with me Vicky and I am 27, it’s so hard living with epilepsy I totally get it sending love the only advice I can give is just make sure they never shower alone in the house I made this mistake an my brother found me on the floor luckily he got home not long after. when finished just be sure he lets you know when he is out so you can relax, is he on medication for it??
Yes he is on levetiracetam crescent he on 11ml in the morning and 12ml at night he only 14 wish I cud take it away from him he blanked out while we was out so fetched him home just to be safe
Ahh bless you man. You must be stressed so much. Its heartbreaking isnt it. Yes every noise we hear, especially a big thud just frightens me so much. Especially wheh they dont answer thats when your stomach sinks and you dread to find them having a seizure
I hate epilepsy. Its so cruel
It is really cruel wish my lad didn’t have epilepsy at all am always asking him if he ok even when he in the kitchen bathroom or his bedroom
Same medication as me! Ahh it’s such a cruel thing to live with/have it the anxiety around it is awful & the aftermath of a seizure is really grim I feel awful for quite some days after! sending all you mums lots of well wishes & love🤍
Thank you my lad blanked out like 3/4 times today wish he didn’t have epilepsy at all he only 14
Hi so sorry for late reply. They are both on meds now. Hes turned 18 and nothing holds him back. But hes now got a part time job. He will be workimg nights soon on his own. Im ill thinking about it but dont want anything to stop him doing what he wants to do. In a way too im dreading xmas as past 2 year’s hes had a big seixure boxing day and last xmas day putting his presents away. I cried for 2 days. Poor lad enjoying opening his presents then bang on the floor and leg’s got trapped under wardrobe and i couldnt turn him. It was horrendous. Im hoping with his meds this is under control but he doesn’t sleep well and is up all night and likes a drink with his friends. I look at his handsome face and pray nothing bad happens to him as hes a good soul. My daughter hasn’t had any mini blackouts since starting meds. Shes gorgeous and delicate and i hope it never gets worse for her. It would kill me to see her hsve a seizure. Then their dad who had epilepsy. We are separated and he lost his licence for a while but will he diving soon. I panic every time he will be in the car and worry they will get wiped out im a second. I hate this life sometimes.
I hate watching my lad aswell he 15 it’s scary