clairekerzner
New
- Messages
- 5
- Reaction score
- 0
- Points
- 0
Hi all,
I just posted an introduction in the Foyer thread, but to reiterate and expand:
My name is Claire, and I'm mum to baby Sophie who is currently five months old. After a traumatic birth in which she became entangled in the umbilical cord and cut off her oxygen, Sophie spent a month in the NICU. The day after her birth she began to have seizures which were quickly controlled with medication.
Sophie has been on maintenance phenobarbitol for five months, and we've just finished weaning her off it completely this week after an EEG scan 6 weeks ago found no seizure activity. We've been told there's a 20% chance she'll develop a seizure condition anyway, and I'm now a bit worried about how to spot any problems.
It's been five days since her last dose of phenobarbitol, and she's suddenly become very cranky and easily upset. I know your average 5 month old has a fair few reasons to be cranky (teeth, for one), but I have a feeling there's something more to it. At her swimming class yesterday, she worked herself up into a complete screaming hysteria over nothing at all, and today she got close to it after being on her tummy for a while. It's a very unusual cry, extremely high-pitched, which I understand can be related to damage to the central nervous system (which she's had in spades). She's also started waking up from daytime naps in full cry, which she hasn't done before, and also starts crying just as she's going to sleep (again, only during the day- different story at night).
I know you guys probably aren't baby behavioural experts and it might well be normal baby stuff we're experiencing. However the fact that this sudden change in her behaviour has all occurred within five days of stopping the medication makes me suspicious. I haven't noticed anything that looks like seizure activity to me, but then I've heard about infantile spasms in sleep and also "silent" seizure activity, and I wonder if either of those could be causing the problem. I don't see any odd motor activity while she's awake, but today for the first time I noticed her eyes glance from side to side three or four times very quickly while I was changing her. It was very brief- is that too quick to be a seizure? Or is it possible?
I suppose what I'm really hoping to find here are answers to a few central questions:
Can anyone tell me what seizure activity looks like in a baby of about this age?
Does anyone have experience with weaning their child off phenobarbital, and do you know what sort of side-effects were experienced?
Is it possible for a baby to have a "silent" seizure or a seizure while sleeping, and is there any way to know that this has occurred?
I'm really hoping someone out there can help because I'm starting to get this feeling of high anxiety while I'm on constant watch for symptoms I don't know about.
Thanks in advance,
Claire
I just posted an introduction in the Foyer thread, but to reiterate and expand:
My name is Claire, and I'm mum to baby Sophie who is currently five months old. After a traumatic birth in which she became entangled in the umbilical cord and cut off her oxygen, Sophie spent a month in the NICU. The day after her birth she began to have seizures which were quickly controlled with medication.
Sophie has been on maintenance phenobarbitol for five months, and we've just finished weaning her off it completely this week after an EEG scan 6 weeks ago found no seizure activity. We've been told there's a 20% chance she'll develop a seizure condition anyway, and I'm now a bit worried about how to spot any problems.
It's been five days since her last dose of phenobarbitol, and she's suddenly become very cranky and easily upset. I know your average 5 month old has a fair few reasons to be cranky (teeth, for one), but I have a feeling there's something more to it. At her swimming class yesterday, she worked herself up into a complete screaming hysteria over nothing at all, and today she got close to it after being on her tummy for a while. It's a very unusual cry, extremely high-pitched, which I understand can be related to damage to the central nervous system (which she's had in spades). She's also started waking up from daytime naps in full cry, which she hasn't done before, and also starts crying just as she's going to sleep (again, only during the day- different story at night).
I know you guys probably aren't baby behavioural experts and it might well be normal baby stuff we're experiencing. However the fact that this sudden change in her behaviour has all occurred within five days of stopping the medication makes me suspicious. I haven't noticed anything that looks like seizure activity to me, but then I've heard about infantile spasms in sleep and also "silent" seizure activity, and I wonder if either of those could be causing the problem. I don't see any odd motor activity while she's awake, but today for the first time I noticed her eyes glance from side to side three or four times very quickly while I was changing her. It was very brief- is that too quick to be a seizure? Or is it possible?
I suppose what I'm really hoping to find here are answers to a few central questions:
Can anyone tell me what seizure activity looks like in a baby of about this age?
Does anyone have experience with weaning their child off phenobarbital, and do you know what sort of side-effects were experienced?
Is it possible for a baby to have a "silent" seizure or a seizure while sleeping, and is there any way to know that this has occurred?
I'm really hoping someone out there can help because I'm starting to get this feeling of high anxiety while I'm on constant watch for symptoms I don't know about.
Thanks in advance,
Claire