EEG says he's having seizures, any info?

[kinny24]

I had twins two months ago at 24w4d and both had a small stage 2 IVH, daughter was born at 1lb 9oz and was on a ventilator for 36 days while my son was 1lb 12oz and on a ventilator for 51 days. At the 2 month mark I was told that they suspected my son was having seizures and they confirmed it with an EEG, so he is now on medication to prevent them. He also seems to flex his body and get very stiff pretty regularly when he's held. I'm not sure if he does this when we aren't there, but I assume so. It's been awfully scary to face possible brain damage and I can't seem to find information on if seizures are common or if they can be temporary. I was wondering if anyone on here had experienced this with their preemie? Doctors initially told me that a stage 2 ivh would not cause complication and would go away, but I guess not He's had two blood infections over the past two months, and pneumonia once, all were caught very early.

It's so awful to just sit and wait for someone to give me more answers. The doctors tell me they don't know what's causing the seizures, and don't know how long they'll last, or how serious things are. Some nurses say they are temporary, some nurses say it's very serious.

If you have a child who had seizures, did they go away? if not, what happened? Any general info would be welcome. Thanks for your time.

 

[Hotmum]

no hunn Idk any about it =(

but I am sending massive hungs for you and your little ones !

Maybe will go away... My sis have seizures since she was a baby, yes was not much ´´cure`` for it, but after 13 they stoped the meds, and she still fine !

It all depends WHY he is having seizures, and whenever they tell you why hopefully it goes away !

Good luck with your angels hunn!

 

[Wantabean]

Cameron was having seizures when he was born. he had a a few and they seem to have stopped. we dont know if there has been any damage as he is too young to tell but will just have to wait it out. i know how worrying it is to not really know much about it. it is common for babies and children to have a few seizures and have nothing in later life but im not sure if its just premmies or ill babies. sorry i cant be much help but i hope you get answers soon xxx

 

[alparen]

Don't rely on nurses to give you any info as they really don't know. Get ahold of a dr and get your answers. so sorry your going through this.

 

[Scottiemum]

Hi, My dd doesnt have seizures but couldnt read and run. Hope everything works out and defo ask for more clarification from the doctors if you want them to explain things to you. My dd was born with a grade 4 IVH and like you its the not knowing that really gets to you. We still dont have all the answers yet. When she was in NICU, we asked for her consultant to explain it all to us a few times and they never minded...its what they are there for. One thing is for sure, they are tough little fighters our babies and they will surprise you with everything they get through! Little miracles! Best of luck XXXXXX

 

[kinny24]

Thanks everyone for the responses, I guess i'll just have to wait and see what happens! Having preemies is so heart aching at times.

 

[Scottiemum]

Thanks everyone for the responses, I guess i'll just have to wait and see what happens! Having preemies is so heart aching at times.

Yes it is heart aching and very tough at times but makes you much stronger and really appreciate the little things. Us preemie mums really notice the smallest of milestones, never take them for granted and celebrate them! XXX

 

[Foogirl]

It is a very tough time. We have so much to deal with and sometimes it can be very overwhelming.

I would ask to sit with your consultant and go over everything you don't understand or don't know. Write a list of questions and make sure you get an answer to all of them.

It may genuinely be that they don't know what is causing the seizures, but what I would want to know is, what are they doing to find out? What are the risks of it being long term? Can they be temporary? What is the care plan / plan of action? All these questions (and probably a heap more) should only be asked of a consultant / DR and not of the nurses as, much as they are very experienced, as you have discovered, sometimes they actually aren't experienced or qualified enough to give you the information you need.

I worry you have turned to the internet for answers because A) Dr Google will rarely give you a "good news" story or anywhere near accurate information and B) it shows those who are supposed to be looking after you in NNICU are not giving you what you need.

That's not to say you shouldn't come and bend our ears here - thankfully you found us and we're about the only sensible ones I found!! (Well, I suppose Bliss is pretty good too!!)

Keep us udated on your progress. We're always here if you need support.