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didnt know this board existed
hi all!
my son was born oct 27. on oct 28 they realized he was having seizures. he was taken to the NICU by ambulance. he had an mri and a spinal tap done that night. they "think" he had a stroke. there was a blood vessel in his brain that wasnt full developed and ruptured during delivery. while he was in the NICU he had 3 eeg's and 2 mri's. he finally got to come home nov 9.
it was sooo sad having to see my baby go through all of that. we still have to give him phenobarbital and he'll have to see his neurologist for a long time. he's already had another eeg since leaving the nicu. the neurologist said if he didnt see the spot on the mri that my baby looks and acts like a perfectly normal baby!
anyone else have babies with seizures? or had babies with seizures? sorry, i didnt lurk much before posting this either.
This discussion has been closed.
Re: didnt know this board existed
My son had seizures 6 hours after my emergency c/s. He was oxygen deprived and it caused a brain injury. He also had some other issues. He was on phenobarb and keppra, and we weaned the phenobarb when he was about 6 weeks old. He has had about 7 EEGs with another coming up in Januray.
There are several moms on here dealing with brain issues including strokes.
Glad you found the board. It has been really helpful. Also glad to hear your LO is doing so well!
did he still have them after you took him off phenobarb? the neurologist said he doesnt want him on it for very long but i'm just wondering what they would do if they took it off of him.
Welcome! I just found this board too. My 2yr old DD has been having seizures since 18 mos. We are trying to control them with meds and she has had one Eeg - result normal- and we are seeing a neurologist in the New Year.
Glad to see your DS is doing well.
Hello!
3 years ago I was in your shoes, and what a long, crazy journey it's been!
My son was born after a perfect pregnancy, I was induced @ 38 weeks b/c he was measuring on the smaller side. After 7 hours of un-medicated labor my son was born pink, screaming and seemingly healthy. After about 4 hours while getting cleaned up in the nursery a nurse looked over and noticed he was gray and having apnea episodes. Noah was rushed to the NICU and a CT scan showed a very swollen brain, an EEG done later that night was abnormal and phenobarb was started.
To say I was devastated was an understatement. The following week in the NICU was a whirlwind of blow after blow of bad news and statistics that said he may have brain damage, CP, seizures, etc etc.
On day 3 he had an MRI which was normal and an EEG done on day 5 was normal. Noah was released from the NICU on phenobarbital but was weaned off after an EEG done @ 1 month was still normal. We had to follow up with a neurologist until he was 1 year and had genetic testing for metabolic issues as it was not apparent that oxygen deprivation occured since he was fine @ birth.
Basically after all of that, all the worry, tears, PPD......Noah is healthy, smart and completely "normal".... he is my miracle. I had a second son in May and everything went well with his delivery thank god.
I wish you the best of luck in your journey, enjoy your boy and take it one day at a time!!!
Welcome, so glad your son is doing better!
My son had a stroke at birth and then seizures his first couple days in the NICU, but they were controlled with phenobarb. When he was discharged we went home on Keppra and then weaned around 9 months old after clean EEGs. As far we know, he's had no seizures since 1 week old.
He does have other issues related to the brain injury (also was w/o oxygen for 20 min following birth) and has struggled with feedings and developmental delays, but overall he's doing great - so much better than was expected after his MRI at 5 days old.
Just know the brain is amazing and when they are so little it seems to have the potential to "heal" - very miraculous!
Feel free to reach out if you have any questions about stroke/meds/etc. I'm not on the board too often but email is paula dot wedding @ gmail dot com. There's also other stroke mamas that are on here more often and lots of seizure mamas so you should get lots of great info!
Hi,
I noticed focal seizures in my son at about 36 hours of age...He was immediately put on antibiotics (in case of meningitis), then phenobarb, then we were medivaced to a larger hospital with a NICU, where we learned (after every single test in the known universe, I think) that he had an ischemic stroke in the middle cerebral artery...To describe our shock/pain/frustration/anger, and then finally relief that he was (kind of) ok, is impossible. DO NOT BLAME YOURSELF, and for goodness sake, GOOGLE is NOT your friend...Don't even think about it...
You are not alone. You will feel alone, though. Many others will not understand what you are going through. I had to say the word stroke out loud...so many, many times, almost to make myself believe it. Oh...and some of the other moms (innocently enough) will want to talk to you about birthday parties, and onesies and blah blah blah...It can be kind of hard...
Talking to other "stroke moms" has been a major part of my healing. Also, I've gotten some fantastic tips in terms of therapy, tests, resources, etc.
I'm here, just pm, or post me a message if you ever want to talk/vent/compare notes.
Also, think about signing up for the International Paediatric Stroke Study...(probably through your neurologist). They have compiled an international data base, listing all attributes, test results, milestones, etc. in hopes of gaining more information and finding trends to help prevent/treat kids.