Has anyone had a baby that's had fits / seizures within first couple of days after birth?

[charleypops]

I'm just looking for people to share my experience with.

thanks

[charleypops]

bump

[girrafey]

hi there, my dd did, she also had them about 30hours after her jabs. she is 12 weeks now and had her jabs on monday and is only sarting to be herself today. i was so scared. would like to chat as well. how old is yours? what happened?

[charleypops]

Hi amyjo. ds is now just over 5 weeks old. Here is my birth story andhere is a thread I started about it.

I've been so scared too and haven't found anyone who's been through the same thing to talk to. What jabs did your dd have on Monday? Did you tell anyone medical about the seizures?

[charleypops]

Whoops - sorry - here is the thread I started about his fits.

I'll read your post now..

[charleypops]

Good grief what a horrible birth

Ds is currently on Phenobarbitone. All the consultant could say about his condition is that during labour he suffered an "insult" - "cerebral irritation" caused by whatever caused the lowering of his heartrate, which is the HIE (as on the thread I linked to below). After each fit, ds would scream and scream in a high pitch then go to sleep. Not sure if he had a temperature though.

If he had any more seizures I think I would lose it. I will interrogate the consultant about giving ds jabs now after what you have said.

Did anyone give you any medical terminology to describe what happened? Is she on any medication?

[charleypops]

Bethron - have you had a diagnosis? or been told what caused them?

Amyjoe - your hospital sounds very thorough - we weren't offered an mri because his eeg results were good, although from what i have read on the internet, ultrasound scans and mris are normally fairly routine. i would've liked them to put my mind at rest. I wouldn't have been told that it was HIE unless I had grilled the consultant for a medical term.

Bethany sounds as though she's doing great - it's amazing that she can sit up already!. It must be a good thing that she's not still on meds. I know consultants differ a lot on how to medicate with Phenobarbitone - some use it for a short period of time, others much longer (like ours), he'll be on it until we see the consultant in a couple of weeks then he'll re-assess. I hope he can come off it - he hates it so much it breaks my heart to give it to him Actually, ds seems quite advanced in some ways too in that from a couple of days old, he'd focus on my eyes and follow objects around with his eyes, has been swiping at toys on his playgym ever since we got him home at 8 days old, and has always been able to hold his head up. He seems absolutely fine to me, but I don't know any other babies, so don't really know how he compares to others. I worry sometimes that he holds his fingers outstretched quite a lot (although from his ante-natal scans, he was doing this in the womb!) and won't always grip my finger when I put it in his hand, also his feet seem quite tense a lot of the time. My HV says these aren't things to worry about but I just can't help it.

I feel like posting a thread asking about babies' hands and feet, but know how ridiculous and neurotic it would sound.

[charleypops]

Bethron - thanks for telling me about your god daughter's hands and for your reassurances. It's all such a worry isn't it - and draining because I can't see when the worrying might end - The waiting's the killer. After the past few weeks especially I have come to have so much admiration and respect for parents like you who's kids go through this sort of stuff.

[SamN]

hi charleypops and others, just to let you know my ds1 had seizures on day 3 (after the paed had cleared him to go home) and then spent five days in NICU, with more seizures while he was there. His discharge notes say (among other things) "changes suggestive of HIE on MRI" and of course just like you I wanted to know more and then got myself very worried about it, especially that he might turn out to have cerebral palsy. Well he's now a very active and intelligent 3 year old and is extremely keen on his football classes and I'm so proud of him and it certainly doesn't seem as if he has anything wrong with his brain.

I seem to recall that the time when he was in NICU was horrible. Especially because to the doctors and nurses on NICU seizures were a pretty frequent occurrence, even if they couldn't explain why they had happened. But to us it was our dear (firstborn) son and we just didn't understand what was going on and we just wanted him to be normal. Then once we got home we felt so alone and bereft of help. Of course we were relieved that he was home, but the midwives weren't very helpful and discharged us pretty quickly when they thought I'd got the breastfeeding sorted (which I hadn't) and the health visitor was much worse and I was so worried about him being okay and didn't really know what to look out for in case he wasn't. And every time I took him to the GP's surgery or to see the HV I felt as if I was an overconcerned mum and that they were whispering behind my back "why is that woman bringing in her son again?"

Then gradually I learned to trust my instincts as a mum and although I was happy to have the regular checkups at the hospital I started to wonder if they were really necessary. We've moved house now and haven't had a checkup since he was two and I hardly ever remember about the seizures any more. In fact I asked the paed at the last checkup what we were supposed to be watching out for and as he couldn't tell me I decided it couldn't be very important. (They weren't doing MRI or EEGs or anything, just checking that his development was in line with other kids his age, which it obviously is.)

Just wanted to let you know that the worrying is natural (you're his mum, it's important that you worry about him) and to let you know that just because he had seizures neonatally it may not have any long term effect.

hope my rambling reminiscences help a little

[suedonim]

Haven't had time to read all the messages but a friend's little boy had fits right from birth. He had an MRI scan at Guys, which showed a number of small bleeds in the ?cerebellum, possibly caused by birth trauma. He was put on phenobarb, which stopped the fits and he came off it when he was about a year old. Since then, he has had some fits last November and what is thought to be a febrile convulsion in April but hasn't been put back onto pheno. The prognosis as a baby was that they really couldn't give a prognosis, although they said he would probably have a number of difficulties. His aunty is a paediatrician and even she couldn't predict what was likely to happen.

He's now nearly two and is running around, riding a trike etc, like any other 2yo! His speech is a little slow but well within normal range, and as he is being brought up bilingual, the slowness is not a concern as yet. He really has done far better than the original scenario would have indicated, the only worry now is whether he might develop epilepsy when he is about 8/10 yo.

[charleypops]

Bethron - you're so right when you say not to wish and worry away our babies' lives, I'd just end up having some kind of breakdown I think if I didn't try to stop myself going down that route - and then where would we be??

SamN - thanks for your post. That week on SCBU was by far the worst in our lives too. I can empathise with the bereft feelings you had when you got home too - after all that intensity, and then nothing, just a weekly HV visit. I'm glad to hear you came to trust your own instincts eventually and learned to relax. Hopefully I'll be able to soon too

Suedonim, thanks for your post too - your poor friend. It must've been tough for her to hear that he "would probably have a number of difficulties" saying that doesn't sound quite fair to me if the doctors were so unsure of a prognosis. And then to have fits again - I bet your friend thought she'd seen the last of them. He sounds like he's doing great though - I've also heard that children brought up to be bilingual generally are a bit slower to catch up in speech - worth it in the end though! Epilepsy hasn't been mentioned to us, I guess it's still early days.

[suedonim]

Charley, I think the doctors were trying to say that because of the fits/bleeds, the baby was very likely to have problems in the future but that they couldn't say what sort. It was all very vague, but I guess at 8wks old, it is hard to predict the future. The parents dealt with the whole thing very well, which was a bit of a surprise to the grandparents, as mum & dad are both a bit harum-scarum and not very organised! But as you say, he is doing very well after a poor start in life.

[charleypops]

Amyjo - I forgot to say good luck with the MRI this week. Sounds like she'll be just fine We're in Surrey - where are you?

Suedonim - bless your friends! We're not the most organised of parents either by a long shot!