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.

Oh gosh, this all sounds truly heartbreaking for you. I can't imagine going through this with my own dd so my heart goes out to you.

Firstly, you mustn't blame yourself for not spotting this sooner. He's only a young baby and babies do cry lots for lots of reasons so you weren't to know.

Secondly, I think you need to be honest with your dh about how you feel. He may also be hiding his true fears to avoid upsetting you. There's no need to be the strong one here. You both need to show your vulnerability to work as a team to get through this together.

Your anxiety around watching your son like obsessively incase anything happens is understandable. However, it won't last forever. He's receiving medical care for his condition. In time, you'll learn how to live with it and it'll become a new normal.

With all this being said, it's OK to have a tough time throughout this. It's hard enough having a baby anyway, so this must feel like a real bombshell on your lives. It's OK to feel sad/stressed/anxious/angry etc.

I’m glad you have booked the session with epilepsy action.

I have no experience of epilepsy in infants but I do have experience of being a parent dealing with health issues in an infant (and older he is 12 now)

Don’t be afraid to talk. Many years down the line from the initial issues I had councelling which helped me more than I realised it would.

Remember you don’t need to be Wonder Woman. It’s fine to ask people to help and to show ‘weakness’

Over time you will get used to things, as daunting as it seems now sadly it does all become second nature (until they throw another spanner in the works) and you find your new normal with things as they are.

Look after yourself. Don’t pressure yourself to do everything and remember it’s fine to take time out to look after yourself

Praying for your little one and sending you all the strength and support in the world x