Advice Please: 4 month old having seizures

[HappyBump]

hi
my nearly 4 month DS has just been discharged from hospital after suffering from a series of seizures.

He basically started having a twitch in his left eye, followed by both eyes rolling to the left for about 30-60 seconds. We were told by our doctor to go home and monitor over the next 24 hours.

However, the seizures at one point were coming ever 10 minutes for about 2 hours. In total he had about 20 of them. We were advised to go to A&E if they continued.

We went to the A&E and his seizures changed slightly and in addition to the eye twitching & rolling, his mouth started drooping on the right side and he may have jerked his left arm.

He was given anti seizure medication and after about 4 hours there were no more seizures.

We stayed in hospital and had a CT scan and an EEG which both came back within the normal range.

We have an appointment scheduled at GOSH in two weeks time with a pediatric neurologist.

There is no history of epilepsy on either side and our other DS has never had a seizure.

Has anyone experienced these types of seizures? If so please could you share with me your experience. We are so scared for our little boy.

Happybump, so sorry you have received this news... don't know what else to say but didn't want your post to go unanswered.
You are entitled to be in shock & I am sure a huge mix of emotions.
Were the Dr's able to offer much in terms off support & advice for your ds & your family.
Its hard but whatever the dx he will always be your little boy first & foremost xx

I are so so sorry you have heard this news, I am devastated for you, I know my daughter will be too. I dont know what to say, but you must get support from other parents and from the wonderful staff in GOSH.

There is a society in the UK http://www.tuberous-sclerosis.org/ when you feel ready to look as they have a support forum and some very positive stories. For now just hold your darling baby, he is still the same sweet boy and always will be.

We will be thinking of you all, the shock must be dreadful, much love
beame and sneezecake
xxx

So sorry. I hope you and your baby will get good support.

xxx

Happybump.. I was following your thread and meaning to post some support about the really tough time you've been having with the seizures that did sound a bit like the infantile spasms our daughter had which started when she was 10 months.. then stopped - and started again at 14 months.. after an MRI she was finally diagnosed with Tuberous Sclerosis aged almost 2 years. She is now 4 years old.
I so so feel for you and your family. It is a really terrible shock and a lot to take in at this stage. So just take your time and treat yourselves very gently. There will be plenty of time to get your heads round what this means for you all.
One thing is for sure. There is such a wide variation of TS presentations and there are several good signs so far for your little boy. One is that developmentally he is doing well and second the fact that his first EEG was normal is a good sign. Our dd has never had anything but very abnormal EEG's.. Getting the epilepsy under control will be the neurologists priority I would guess. (our dd is on epilim and clobazam and touch wood..apart from the occasional brief abscence here and there she has been seizure free for over a year now, which has improved the quality of our lives so much.. )
There's bound to be so many questions and thoughts going through your minds and lots of emotions.. It will take time to begin to grasp it all. Sending you lots of hugs and good strong calming vibes to your family..
The TS website mentioned above is very useful for info and the TS association in the UK is really good. There are several specialist advisors you can contact for support and information when you are ready. The TS talk forums are very slow compared to mumsnet as it's a rare condition and to be honest I'd hold off from doing to much googling just yet as it's too early to say how things will be for your son..a lot of what you'll read will worry you and I'd let things sink in a bit first, but easier said than done I know. I am happy to help in any way I can..You can send me a private message - I think?! - if you think that would be helpful..
Do some nice stuff together as a family and try to take it one day at a time..
This forum will be there to help you every step of the way.. xx

Happybump, just wanted to say I'm so sorry that you have received this diagnosis, it seems that it has all come very suddenly and I know your world must feel like it is falling apart. Like the others say, take it one day at a time and get all the support you can, on here or other forums or in RL.

My DS is nearly 18 months with CP btw.

xxxx

Thank you for your kind responses.

It has been a long week of tests, tests, and more tests and we are finally home. The good thing is that we've been so busy with all of that and looking after both children we haven't had chance to do much more reading.

DJAngel, I will try and figure out how to PM you, as it would be great to "talk" to someone else who has been (going) through something similar.

Hi HappyBump
You are probably exhausted but relieved to be home.. I'm not sure you can actually PM me on here but if you can face going onto the TS website forum for parents then you can message me from there and on that forum I'm melodymum.
Hope that helps or if you don't want to do that then message on here again. I have now spoken to a couple of other parents who are quite new to TS so am happy to offer any support I can..
Take care of yourselves.. xx