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To raise awareness about Infantile Spasms

(99 Posts)
NCforIS Sun 29-Jan-17 21:56:59

I've NC as my baby had been diagnosed with this BUT I really want to raise awareness.

Infantile spasms are a really rare form infant epilepsy. They are considered to be catastrophic due to the developmental issues they can cause.
They are rarely seen by medical professionals who sometimes mistake them for reflux or normal Moro reflex.

The UK IS fb page group has bravely put together an amazing video of their children showing what to look out for if you fear you child has developed this.

Please watch and share so that early intervention is possible for these poor babies.

If you suspect IS please go to A&E with a video and say you suspect IS. Be prepared to be admitted for a few days and don't leave without an EEG.

Lilicat1013 Sun 29-Jan-17 22:10:48

That was interesting, thank you. It's really subtle, I assumed it would have recognised a seizure. I have epilepsy myself and worked in care with many epileptic service users so have seen lots of types of seizures.

I was concerned about my older son when he was younger as he had a stage of something that looked like it could be partial seizures. They did an EEG at the time as best they could (he has autism and global developmental delay so did not co-operate), he came back clear but it is something I always keep an eye out for. I wasn't diagnosed till my mid twenties myself.

I hope you are able to find the right medication for your baby to keep the seizures under control. It's great you are raising awareness, it may help another family get an early diagnosis.

MuteButtonisOn Sun 29-Jan-17 22:11:17

Good for you. One of mine has epilepsy. I shared this recently too. Second the taking of videos.

blackpoolassy Sun 29-Jan-17 22:15:54

They are so subtle and easily missed.
One neuro said that sometimes they are missed for months and parents don't realise something is up until their child can't walk one day. It is incredibly distressing. But early intervention is key.

Sorry to hear about your experiences x

Haggisfish Sun 29-Jan-17 22:16:36

Gosh those are really subtle. Hope your baby is getting treatment op.

Rollonbedtime7pm Sun 29-Jan-17 22:20:59

Can i ask how you ever spotted them? Apart from the clips where the babies were crying (bless them - poor things sad), it was really hard to see some of the spasms!

polkadotdelight Sun 29-Jan-17 22:25:01

I think there needs to be much more awareness of IS and possibly more training of health visitors if that video is anything to go by. It's an awful condition and early treatment is so important.

NCforIS Sun 29-Jan-17 22:26:16

Dd did the classic eye roll with jack-knifing of arms. She did it every 10 seconds for about 5 minutes so it was immediately suspicious.
She then carried on doing it a few times a day.
Still bloody well took me 4 days to go to A&E though sad

ApproachingATunnel Sun 29-Jan-17 22:29:15

Thank you for sharing this, never heard of it before! Some if them just look like bad coordination which you would expect from a baby, easily missed!
I think you should share this on fb as well.
All the best to you and you baby flowers

Cguk81 Sun 29-Jan-17 22:30:00

Sorry to hear your lo has been diagnosed with this but thank you for sharing this video, it's really informative.

NCforIS Mon 30-Jan-17 08:24:39

I should have said that you need to go to an A&E that had a paediatric neuro department, likely to be found in the larger children's hospitals.

polkadotdelight Mon 30-Jan-17 10:12:11

How is she doing now OP? Has she had steroid treatment?

NCforIS Mon 30-Jan-17 10:13:31

Yes. 3 weeks off it. She looks like a sumo!
Still immunosupressed so we're having to be really cautious.
Unfortunately seizures are not under control yet so we're onto second line drugs now.

candycoatedwaterdrops Mon 30-Jan-17 10:21:07

Thank you for sharing this. I watched the video and in most of the clips, I'm not sure I would have thought anything of it. Some of the spasms are so subtle. How scary. sad

polkadotdelight Mon 30-Jan-17 12:04:04

Oh bless her. I wish you all the best and hope she responds to second line medication.

Wakemeuuuup Mon 30-Jan-17 12:13:28

I had it as a baby. My parents brought me to the hospital and the nurses were insisting nothing was wrong with me . They kicked up a huge stink until a doctor came out to see what was going on and I promptly had a seizure there and then.

I had steroids for ages and I assume I was really bad as my parents were told of all the problems I could have due to them (they were brought around a ward with kids with all sorts of issues, some were in residential care homes).

I thank my lucky stars every day that my parents refused to leave until I was seen.

celeryisnotasuperfood Mon 30-Jan-17 12:42:40

Wow that can be very subtle - thanks for sharing and good luck for your little one...

NCforIS Mon 30-Jan-17 12:59:09

Wow wakeme that's amazing of your parents. And thanks for sharing your story. It really nice to hear if positive outcomes as there is so much doom and gloom surrounding this condition.

Thanks you all for the thoughts for my baby.

MelonB Mon 30-Jan-17 13:35:14

Wishing you more success with the next set of drugs NCforIS. Thanks for sharing the vid. (And take all of the doom and gloom statistics with a huge pinch of salt as most of them are based on very outdated studies!)

NoSherryForMe Mon 30-Jan-17 15:11:48

My DD was diagnosed with IS at 8 months. It was absolutely terrifying. We were very lucky that I mentioned the symptoms - frequent startling - in passing to a friend, who recognised them from when her own DD had had IS. She sent me a video of her DD having the seizures and I knew immediately that it was the same thing. I'd already booked a GP appointment but cancelled and took DD straight tto A&E, where she was admitted and had an EEG that confirmed the diagnosis. She was put on a very high dose of steroids which, thankfully, did the trick pretty quickly.

The one thing that all the paediatricians who saw my DD said was that it was really useful that I'd videoed the seizures on my phone. They used the footage in their initial diagnosis, and in a case meeting to discuss treatment. My DD is nearly 3 now and has had normal EEGs for 2 years. Based on what the doctors have said, I do think the speedy diagnosis and treatment gave her a better chance of a good recovery.

Thank you for starting this thread, OP. I hope your little one is doing well.

NCforIS Mon 30-Jan-17 15:52:03

So pleased your DD has had clean EEGs Sherry. It's almost like a victory for one of us is a victory for all in some strange way.

The videos are so useful. Everyone and their dog wanted to see them. They were especially useful for the medical students who I hope remember them for when they qualify.

NoSherryForMe Mon 30-Jan-17 18:03:54

Fingers very tightly crossed that the new drugs do their stuff for your DD very soon, OP. IIRC, it took a few different medications before my friend's daughter's seizures came under control, but they did and she's now a fit, healthy little girl.
(And YY to the tiny sumo wrestler - my poor DD just didn't stop eating while she was on steroids.)

PossumInAPearTree Mon 30-Jan-17 18:20:23

Wow, it's worryingly hard to notice. I guess as parents though you're tuned into your kids and will notice patterns, repeated behaviour which doesn't seem right. Doctors need to listen to parents.

Wishing your dd well.

NCforIS Mon 30-Jan-17 19:22:04

You definitely do tune in. And mother's instinct plays a huge role. Don't let anyone let you go against your gut. That's what delayed me getting to A&E as no one believed what I was seeing and I stupidly procrastinated, instead of going in.
Every hour matters with this condition.

NCforIS Tue 31-Jan-17 19:25:47

Bump smile

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