I'm feeling really really alone right now. A bit of background. My son has had medical issue after medical issue after medical issue. He was recently officially diagnosed with epilepsy and it just has become the final straw for me emotionally. We started medication how ever he was such a different person on it. He is just shy of two years old and he just became ... I hate to say this but dumb. My son is very smart but on the medication he lost it all. So we took him off. He has seizures every two weeks or so. He is strong and he is so use to waking up in hospital and he dosent fuss about it. He is amazingly resilient and such a beautiful child.
Buy mentally for me I cant take it anymore. The constant worrying of going out alone with him and being afraid of him having a seizure while I'm driving or shopping. Both have happened before and both were horrible because I was not in my controlled environment.
Ontop of all this stress in my head I feel my friends and family are getting over it. His first fee seizures people were texting and calling all the time. Coming to the hospital and offering help. Now if he has a seizure I'm lucky to get a facebook comment asking how he is. I get that its been happening every two weeks for nearly s year and its no big deal to people. But I tell you now it never gets easier. It gets harder and it takes a tole. I don't know how to tell my family and friends I need them to step up the support. For once I just need them to say I'm sorry he is going through this , I'm sorry your going through this and living with this day in and day out. I just want someone to tell me well that really sucks. Yet everyone tells me it will be ok , everything happens for a reason. We are beyond that now. That stuff isn't helpful.
He can't go to pre school because he is not medicated and its to much for most schools to take on. So this is my life day in and day out. I feel alone , I feel scared , and I don't know what to do to fix it. I feel like if I whinge about it people think im stupid because their are children who are worse off. But this is my baby , my world. And my world is not ok. Help.
how do i cope with my sons constant illness and lack of feeling supported.
Tuesday, 14 January 2014 - 12:42
how do i cope with my sons constant illness and lack of feeling supported.
Posted in:
Mental Health, Relationships & Marriage, Self Care, Baby & Toddler
4 Replies
Everything will be okay Hun, I know how hard it is seeing your child go thru epileptic seizures, my 3 year old has it her seizure are once every 2-4 weeks she isn't medicated tho.. There was a time she was having 3 clonic tonic seizures a week 2 complex partial seizures a week and upto 20 absent seizures a day I've found as she is getting older her seizures are becoming less.. Fingers crossed its the same for your child too. It's so hard seeing your baby's go thru it.. My daughters first seizure when she came out of it she had no clue where she was (at home!) and no idea who I was..
Big hugs to you mumma! Your doing a great job!
Take him back to his dr! You can't just put him on and off seizure medication as you wish. There are different drugs, you need to find him one that works. He needs to be medicated for this. It is serious. I have an epileptic child myself. It's scary but the damage done to their brains during a fit can be catastrophic. He won't be smart for long if you don't have him treated. There is a lot of support look up epilepsy Australia. Call them. Please.
I would take him back to the Dr & see if they can change his medication. There are Epilepsy support groups see if there is one in your area. Things will get better maybe you need to see a Dr yourself. xx wishing you all the best.
Reposted on the facebook wall too and hope it helps! x
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