8 month old diagnosed with Epilepsy, I'm struggling mentally.

[fashu]

My son from birth has never been comfortable, he's cried 12+ hours a day from 3 days old and he hardly ever sleeps. He always seems to be in pain and doesn't know what to do, easily irritated by everything. I'm so angry at myself for not pushing the doctors to do more tests on him.

A few weeks ago he had a seizure. I was heartbroken, my poor baby. The doctors said it was a one off.
We went home and he had another and they just kept coming every few hours.
He's now been diagnosed with Epilepsy and is on medication. I'm petrified, I follow him around, I don't let him even laugh anymore because everytime he does he has a fit. I'm petrified of anyone touching him, I'm petrified of the wind, of the TV of his toys. He's crying even more, he won't sleep for more than an hour. My house is a mess because I'm scared to let him cry or put him in his pram or rocker.
He's had 2 EEGs and a CT and they are all clear but he does have mild fluid on the brain and a slight case of Macrocephaly but doctors have said this is genetic as his brother also has a large head.

I'm just struggling mentally because I've got no one to talk to. I speak to my husband but I'm scared to tell him how scared I am, I just keep saying he'll be fine, the doctors will look after him and epilepsy is treatable blah blah because that's what I want to hear too.
I don't want to speak to my family because I kind of feel like it's all going to be real if I open up.
I've booked onto a session with epilepsy action so hopefully I will be able to get some help that way but I just needed to vent a little before I get lost in my own head.

Something isn't right with him, this must be why he cries constantly, he can't even tell me what's wrong. I feel so helpless.

Please pray for my baby.

Sorry OP.
Epilepsy is truly shit. Not many people really understand that. There are lots of support groups out there especially on FB with other parents going through the same. Try ESUK

I know exactly how you feel I have been in your shoes and it is truly terrifying. I think it's the sudden nature of epilepsy that just arrives and shatters your world instantly which feels so intense, there's no build up. My son was 4 months with his first seizure, they escalated at 10 months and he too was put on medication. Unfortunately his seizures have caused some developmental delays also.I know all too well the constant anxiety and worry of taking your eyes off them, to this day (he is 2.5) I still get anxiety if he disappears from my eye line for too long.

However what I will say is that we have come a long way! I soon realised that the medication gave me my boy back, he is thriving and we are working on the delays (speech etc), epilepsy is something he has but I won't let it define him, he now goes swimming, soft play, is a complete adrenaline seeker at the park, he is so confident and full of life that I barely recognise him as the same child who struggled so much with seizures and appeared in his own world at the time.

You will get there but you will always have that extra connection and protection for your son but that's ok! Sleep with him, give extra cuddles, be irrational for a while it's all totally natural reaction, honestly time will help.

I meant to add that my son has also had numerous clear EEGs and MRIs but is quite clearly epileptic, it was explained to me that this is quite common. I found this more difficult to accept because I almost wish they had found something concrete on the scans so I would feel more confident about our choice to use medication etc