One month after the diagnosis ... sigh ... it's real isn't it

[simplysurreal]

hi,
I posted a month or so back about my youngest son having seizures. I name changed, because the other name didn't make sense any more.

So the diagnosis is/was Tuberous Sclerosis. We have spent the time trying to understand what that means for our son/family etc. I have read everything that I can and about two weeks ago just reached saturation point. I just seemed to be reading the same stuff over and over and most of it was doom and gloom.

It just seems so hopeless to try to predict anything. We have narrowed it down to just trying to accept the symptoms that are present currently. He's had seizures and they are under control with the meds, which is good. I have gone from dramatically telling people what the diagnosis is to just saying he has epilepsy controlled by meds. I found that it was too big for people to comprehend ... well it's too big for us to comprehend and I felt it was a burden on others to really talk it through.

Anyway, I just wanted to put myself out there again, I feel I need to speak to someone about everything... but I don't know what everything is ...

sorry, I'm probably not making any sense at all ..

do you know anybody with a child with the same diagnosis? Could help to 'normalise' it for you if you know you're not alone? (I don't mean to trivialise it, just to give you a break from it feeling so BIG all of the time)

We are a long way from diagnosis, but I'm sure there will be others along soon to talk to who will understand how you're feeling better.

Hi simply I agree with red that it can be helpful to find other rl parents with similar problems as they can often help on an emotional level but also by signposting.

I'm very sorry to hear of the diagnosis though.

have you tried contact a family they can get you in touch with other families also Im pretty sure there is a TS foundation or support group.

Sorry you probably already know this.

Reading your post again could have been me 4 years ago. My son had Infantile spasms at 4 months, my life was thrown upside down. First reaction was to get on the internet but I only felt that made things so much worse at I time when I was so emotional and sensitve but you just want to know dont you and you feel a responsibility to be as informed as possible!!

I Learnt to stay away on the internet for my own sanity and just take each day as it comes, with time you get to grips with things.

My son is now 4 1/2. He still has seizures which is well controlled by meds. He also has WIlliams syndrome. A syndrome,which by itself, can mean that people with WS can be very able but due to my sons epilepsy he is not. We have our bad days but over time they are fewer between. Hes fab and progressing all the time.

Just take your time and dont be too harsh on yourself. Its important to talk whether it be to friends,family or strangers if thats easier???

I, as can many other people on here understand what your going through and have some idea of how you might be feeling. Im more than happy to give you my email address should you feel you may want to talk more?

Thank you for your responses. Sorry my post is so "wallowy". The problem I am having with the support groups is that we are not in a country where there are support groups. In fact the neurologist here has dismissed the diagnosis that was given by GOSH (even though the diagnosis has been confirmed by 4 doctors at GOSH).

The issue with TSC is that everything is unknown except what is happening currently, if that makes sense at all. There are no typical cases. The boards where people do post are usually where their child/children are going through something really major like brain surgery, so our symptoms seem quite small in comparison. I know they would still be supportive but still it doesn't yet feel like a comfortable place to post. Another thing is that my MIL signed up for the same support group (as there are only a few places to go) and I don't feel comfortable with that.

Hello simply surreal. Our DS was diagnosed as having frontal lobe epilepsy a month ago (totally out of the blue)and we are currently waiting for the results of MRI. We have a suspicion of what possibly has caused it but could be something we don't know about yet.

It's so hard to know with epilepsy as its so different for everyone and every person who has it seems to be affected differently.

Like lourobert I am more than happy to pass on my email address if you would just like to know there are folk out there that really do understand.

Take care.

Hi LouRobert (I think I cross posted with you) and Loflo. Thank you for taking the time to respond. Whilst I am sorry we are all in a similar boat so to speak, it is comforting to know that I/we are not alone.

The epilepsy thing is difficult. I am very worried about my son developing infantile spasms as it seems there is a high incidence with TSC, and of course to make it worse Infantile Spasms can present very unusually with TSC, so almost anything could be Infantile Spasms, doesn't have to be in clusters, not necessarily flexor or extensor.