Newborn seizures???

[Wingingthis]

My newborn daughter (second baby) is 2 Months today. Since two nights ago she keeps doing this thing, about 5 times a day that looks very similar to the startle reflex but she holds it and goes rigid for about 2 seconds, eyes wide and starting and then she cries that horrible high pitch cry after.
They happen a few hours after each other.
I called the health visitor about it yesterday who advised me to see a doctor, I called my GP who said they’d called back but in the mean time it happened again. I took her straight to A&E. we were sent home being told it was just the startle reflex.
AIBU to take her back to A&E if it happens again? It doesn’t look like the startle reflex to me but perhaps I’m wrong.
Has anyone else experienced this?

[Wingingthis]

Sorry for typos I’m absolutely exhausted!

[MeerkatMolly]

Sounds very worrying for you. Did the GP call back and give any advice?

[Wingingthis]

Thanks for your reply - the doctor on the phone asked for family history of seizures (there is none) and advised me to monitor it and try to film it. I feel like this will be near to impossible though as there is no pattern to them and they are over in a couple of seconds! But will obviously try

[Soozikinzii]

One of my sone had febrile convulsions he had a temperature he grew out of by about 3 . I had to give him cal pol strip him down to his nappy then stand outside sometimes to cool him down. Does she have a temperature when this happens? Do you have a number for the health visitor ? She will have to be monitored to see what kind of convulsions they are . If they are febrile that's very minor .

[saywhatwhatnow]

Could it be tummy pain or silent reflux?

[Wingingthis]

No she has no temperature - they happen at such random times eg. In the bath, whilst being held, in the baby swing chair. I can’t see a link they just seem completely random

[Soozikinzii]

I see you have spoken to the GP now while I was typing that so that's good. If they're the same as my sons they're very minor and just something they grow out of . He's 30 now ! Yes filming them is a good idea . If your daughters are so brief they must be very minor xx

[bookwormish]

Oh OP that sounds terrifying. I wouldn't hesitate with a newborn to go back to A&E, or your GP. There are other things that look like this that aren't seizures, if that reassures you. It could be Sandifers, which is a kind of posture due to reflux. Can you film them for the Dr? x

[Kizziebel]

Please have a look at this ukinfantilespasmstrust.org/about-infantile-spasms/ it's obviously on the serious side of the scale of what it could be but should be ruled out

[Wingingthis]

Thank you everyone,

Infantile spasms are what I’m most afraid of. :( although hers don’t happen in clusters so I’m hoping this rules that out?

I have no idea I just don’t want it to be fobbed off as nothing incase it is something.

[purplejungle]

I would go back to a&e and push for an eeg to rule out infantile spasms, although they are very rare they are also very serious. Trust your instincts. Hope all turns out ok.

[VinoOlive]

Do you have a hospital nearby with a children's a&e? I'd go there if you haven't already.

[Wingingthis]

Yes the A&E I took her to was a children’s A&E (not at a children’s hospital though - I’m not sure if this makes a difference?)
Understand that this is an awfully stessful time for hospital staff but I do feel like the doctor we got was very dismissive/ didn’t ask many questions or really examine her at all

[SomethingNastyInTheBallPool]

Definitely film it and go back to A&E and push hard for an EEG.

My daughter had IS as a baby and it was my video, which the duty consultant forwarded to his colleagues, that persuaded them to do the EEG. This led to treatment starting immediately.

[SpillTheTeaa]

Take her back and ask for a second opinion and discuss you weren't happy with how she wasn't really examined.
It might be a busy time but that's their job and they still have a duty of care.
I never knew my great grandad was epileptic until about 4 years ago..

[Sosorry2020]

Hi Wingingthis. You have to take your baby to A&E straight away if this happens again and definitely try to film it. This does sound like Infantile Spasms (West Syndrome) but hard to be sure. My daughter had it and hers at the beginning looked like she was having hiccups. She would tense and her hands move up with each “hiccup”. You can look up videos online if you are not sure but it may look different for each baby at first.You need to insist to see a neurologist. They have to do an EEG to confirm and get your baby on prednisone or a drug called vigabatrin straight away if confirmed. It doesn’t have to come in clusters to start with. I cannot emphasise how important it is to act quickly if it is Infantile Spasms. I am hoping it isn’t. But time is of the essence. The sooner you start the medication, the less damage it does on the brain.

[Sosorry2020]

@SomethingNastyInTheBallPoolSomethingNasty I hope your daughter is ok now. It is such a devastating thing for every parent to go through. My daughter is 12 now. When she was diagnosed at 5 months the medication helped her and seizures stopped quickly. However she has had a ton of other issues due to the damage in her brain. I am still thankful. I still think if I had had her diagnosed quicker and didn’t think these damned seizures were not hiccups her life would have been so different

[Meatshake]

That sounds like infantile spasms. My nephew has it. It's not always as scary as Google makes out but it is serious. Film it and go back to A&E. There's a really good UKIST support group on Facebook too who can help.

It took my sister 3 trips to various healthcare settings to be taken seriously. You need to push push push.

[Wingingthis]

Thank you both & I’m so sorry for what you’ve had to go through with your children. How absolutely devastating. 🤍🤍 I’m only worrying about it so can’t imagine the feeling if it turns out to be true.
She is an otherwise completely healthy, smiley baby. I had no problems in pregnancy or during the birth - were yours the same?
I’m truly terrified. I’m just staring at her waiting for her to do it again. (She hasn’t since yesterday though)
What age did you first notice them? Were yours not in clusters to begin with?

[Meatshake]

Normal pregnancy, normal birth.

Started about 7 months, showed massive regression and started with head drops.

[SomethingNastyInTheBallPool]

@Sosorry2020

I’m really sorry you went through this, too. Like you, I wish I’d realised sooner, but babies hiccup and startle a lot, so it’s not surprising we didn’t know. It was only when the jerks started coming in clusters that I knew something wasn’t right.

I’d never even heard of IS until a friend whose daughter had had it sent me a video of her seizures, which looked just like DD’s.

Prednisalone brought the seizures under control quickly, and DD’s now a healthy, sparky 6-year-old. She does have autism and is being investigated for ADHD, so I do wonder whether there’s a connection but it’s a bit chicken and egg. Plus, she has a pre-existing condition that makes her more prone to both IS and autism.

@Wingingthis I had a normal pregnancy but DD was born at 34 weeks. She had open heart surgery at 6 months - a couple of months before the seizures started.

I now know quite a lot of children who had IS as babies - some went on to develop other forms of epilepsy and others don’t seem to have been affected. Getting treatment fast is key, though.

[Wingingthis]

Thank you everyone for your replies, they have been so helpful.
Sorry to bombard you with questions but when your children’s seizures started were they every single day? I’m just wondering if she does have any today/tomorrow if that puts us in the clear a bit more?

[SomethingNastyInTheBallPool]

I couldn’t say 100% as it was a few years ago, but quite possibly not — to begin with. They ramped up pretty quickly, though.

[Sosorry2020]

I had a completely normal pregnancy. She was born at 39 weeks. She developed completely normally until 4 months, smiley, reaching for things. Then started noticing the ‘hiccups’ but didn’t think anything could be wrong until 5 months as it didn’t come in clusters and seemed random. Once on prednisolone seizures disappeared in a week. However by that time she had stopped reaching for things and smiling. Everything came back eventually but walked late, talked late etc. Now ADHD, dyscalculia, etc. But thankful still because most cases don’t turn out well. Early and aggressive intervention is key. Good luck! I hope your baby is healthy 🙏🏻 but it would be great to check it out to be sure

[SpillTheTeaa]

Did you take her back OP? I hope she is okay