7 month old daughter - seizures?

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Hi everyone

Just need a bit of reassurance. Our 7 month old DD has started doing this head shake / stiffening thing where her eyes go wide, she gurns and shakes her head. It's becoming increasingly common. There's no real pattern to when she does it.

I have been to the GP but they dismissed it and are not concerned.

My DH and I are worried sick. If I could upload a video I would.

She's always alert during the 'episode' and isn't distressed. She's a healthy and happy girl otherwise.

Thanks.

Bump x

Has the dr seen a video?

This happened my DD around this age. Our GP referred her to paediatrics immediately as she witnessed one in the surgery. They saw her the next day and carried out an EEG which was clear and repeated the process a few weeks later which again was clear.

As they could find nothing wrong her she was discharged and we were told she would probably grow out of it which she did but this took maybe a year. It didn't stop the incredible worry we had.

I kept a diary of when this all happened, what she ate, drank, napped & nappies to see any pattern and there was nothing.

Try and get as much as you can on video. Annoying as it's so quick and your instinct is to comfort your child (mine was never in distress and went back to what she was going as soon as it was over) so anything we got we were already filming

Please push for an EEG as it will help rule out anything more serious.

I've been there and understand they worry. I really hope it is nothing

Hello

Thank you for your replies. I went to ED with her last night. The GP, ED consultant and paeds doc saw the video and dismissed it as 'baby wanting maternal attention' which is ridiculous as I was sat with her looking right at her. So we were discharged. I'm going to email the GP again and ask for a referral to paeds again. They were so busy last night and had such an attitude I just felt dismissed and like I was wasting their time.

My husband and I are besides ourselves with worry. I know a lot grow out of it but what if she doesn't?

She's fine when they happen and not distressed, like you say @daisyducky you want to comfort them then when I get the phone out it stops 😂

I'll keep asking because I want her to have an EEG just to be safe x

I really hope they take you more seriously and get the referral to put your mind at rest. If there is anything else I can help with let me know. The only other thing I have read is that it is linked to a temperature spike. Maybe try checking that. My DH and I eventually maybe thought it was linked to growth spurts as she would have a period of them then nothing, then they'd start up again, and repeat...

I am sorry you had such a bad experience with the doctors you saw and that it has left you feeling just as concerned as before.

Accurately assessing "episodes" in small babies is particularly challenging. Seizures are thankfully a relatively rare cause, and most of the things that generate concern in parents often are odd behavioural things that disappear with time.

The seizure type that is particularly important to rule out in this age group are called "infantile spasms" - these don't sound like those at all, and even disappointing doctors are likely to have been thinking about those particularly in seeing a child of this age.

For other seizure types, and to distinguish seizures from non-seizures, the most important investigation is time, and there is not in general a rush to investigations. In the vast majority of cases it is carefully assessment of the history of the episodes, and general progress of the child, that lead to a diagnosis or not of epilepsy, not the tests. Videos are certainly helpful.

In particular, please don't pin your hopes to uncertainty being solved by an EEG one way or another. Although they can help distinguish some epilepsy types from each other, they are also notorious for being normal at rest in many people who do have seizures, and for showing worrying abnormal patterns in many people who don't. There are also very, very long waits for them in several parts of the country though I am pleased daisyducky that you didn't have to wait long in your case.

I hope this doesn't come across invalidating any of your appropriate concern for your child or your disappointment with your care to date. And I hope the outcome is eventually a good one.

@daisyducky

I really hope they take you more seriously and get the referral to put your mind at rest. If there is anything else I can help with let me know. The only other thing I have read is that it is linked to a temperature spike. Maybe try checking that. My DH and I eventually maybe thought it was linked to growth spurts as she would have a period of them then nothing, then they'd start up again, and repeat...

Thank you so much. I did check her temp and it was thankfully fine. She's not done it as much today so maybe it is linked to growth. Thank you, your words have helped a lot.

@Iesugrist

I am sorry you had such a bad experience with the doctors you saw and that it has left you feeling just as concerned as before.

Accurately assessing "episodes" in small babies is particularly challenging. Seizures are thankfully a relatively rare cause, and most of the things that generate concern in parents often are odd behavioural things that disappear with time.

The seizure type that is particularly important to rule out in this age group are called "infantile spasms" - these don't sound like those at all, and even disappointing doctors are likely to have been thinking about those particularly in seeing a child of this age.

For other seizure types, and to distinguish seizures from non-seizures, the most important investigation is time, and there is not in general a rush to investigations. In the vast majority of cases it is carefully assessment of the history of the episodes, and general progress of the child, that lead to a diagnosis or not of epilepsy, not the tests. Videos are certainly helpful.

In particular, please don't pin your hopes to uncertainty being solved by an EEG one way or another. Although they can help distinguish some epilepsy types from each other, they are also notorious for being normal at rest in many people who do have seizures, and for showing worrying abnormal patterns in many people who don't. There are also very, very long waits for them in several parts of the country though I am pleased daisyducky that you didn't have to wait long in your case.

I hope this doesn't come across invalidating any of your appropriate concern for your child or your disappointment with your care to date. And I hope the outcome is eventually a good one.

This has been very helpful, thank you. I think the doctor's attitude was very dismissive. They've put in the e-discharge 'more likely spasms to gain maternal attention' - I was right there looking at her, she didn't need to get my attention, and babies can't really do that. They were very stroppy with us as we were getting discharged - guess that's nights for you, I know I don't miss them!

Today seems to have been a better day and she hasn't done it as much. I will continue to monitor and keep a diary.

Your reply has really helped, thank you again.

I just wanted to comment on this to say if you do get an EEG don't pin all your hopes on that giving you answers. Though I do think your dd should have one.

For example my dds doctor has seen videos of her having seizures, she has also had an eeg showing seizure like activity in the brain. Even with all of this they aren't diagnosing her with epilepsy and starting medication, due to lots of other factors being involved and things to rule of first.

However they are keeping a close eye on her and repeating the EEG. I just wanted to mention that, as I was pretty confused and thought that seizures + abnormal EEG would mean Here Is Your Diagnosis. Good luck

Just wanted to check in and see how you & your DD are?

@daisyducky

Just wanted to check in and see how you & your DD are?

Hi thanks for checking in. She's been much better, thank you. She's not been doing them hardly as much so I'm wondering if it was developmental. Feel a bit daft taking her in but my mum reminded me she was epileptic as a child so it was best to get her checked out. They are such a worry, aren't they. Thank you, it's really kind of you to ask how she is 💞

@AnxietyMumEpi

I just wanted to comment on this to say if you do get an EEG don't pin all your hopes on that giving you answers. Though I do think your dd should have one.

For example my dds doctor has seen videos of her having seizures, she has also had an eeg showing seizure like activity in the brain. Even with all of this they aren't diagnosing her with epilepsy and starting medication, due to lots of other factors being involved and things to rule of first.

However they are keeping a close eye on her and repeating the EEG. I just wanted to mention that, as I was pretty confused and thought that seizures + abnormal EEG would mean Here Is Your Diagnosis. Good luck

Thank you so much they haven't done an EEG. If she starts doing them again I will push for one but she's only doing it once or twice a day, nowhere near as much as when I posted. I hope your daughter is ok - it is such a worry, isn't it. Never known worry like it since becoming a mother!

Mrs worry wort here. Even if they're less frequent - I would try to get to the bottom of it and not be fobbed off. My son had odd movements at 11 months with his head and shoulders. He had an EEG privately and it didn't reveal anything at all.
But after disappearing for a while, the movement was replaced by a steady head shaking which progressively became worse. A couple of years later he was found to have a brain tumour. The shaking thing is not a usual warning sign for brain tumours, so I'm told - but if I had ignored it... it doesn't bear thinking about. You can't be too careful with neurological stuff.