To raise awareness about Infantile Spasms

[NCforIS]

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.

m.youtube.com/watch?v=PoWjBspeoQM&sns=fb

Thank you OP. I'd never even heard of this condition. Poor little things

Thankyou for sharing and I hope your LO is doing ok.

Thanks. She's not well. Still a neonate developmentally with serious medical conditions. No seizure control.

That's why it's so important to spread awareness.

I am broken record sorry!

A little bump as it's Infantile spasms awareness week!

I had forgotten about this thread. I read it a while back and watched the videos. When my ds was poorly with an ear infection a few months ago, he had an episode of what looked just like these seizures. I recorded him for a couple of minutes. He later had a febrile convulsion and we spent the day in hospital. Temperature came down, all was fine and it’s not happened again. I assume as there’s no ongoing seizures it can’t be IS?

YANBU at all.
Video, video, video!

I have worked with many children with IS. The parents have always known. The children who get dx the quickest are the ones whose parents filmed their suspected seizures.

All the best to everyone and their DCs.

peace that sounds good if your dc hasn't had any subsequent episodes. Keep an eye out and take the immediately to A&E if you ever suspect again. And as pp said take videos

This is being shared to help with awareness this week

Also

Toddler girl, 1, suffers from epilepsy where her spasms occur everyday

dailym.ai/2BH89kR

Daily Fail doing something good!! Let's keep raising awareness.

Another link to a video

Hi NCforIS I'm looking for some advice ... My daughter has been having symptoms (the jerks and spasms) for 5 months. She's now 10 months old. At 5 months I took her to hospital and the Dr said to keep an eye on it but because her development was ok he thought it wasn't this, but an imitation of it. Now at 10 months we had a check up last week and he finally agreed to do an EEG booked for two weeks time. However, I'm worried today. Her jerks have mostly been in her arms and head a few times a day or some days they go away, but today they have been ALL day. And her legs to. All limbs going outwards. I'm feeling very anxious. Do I wait for the EEG or do I go to A&E?

My DS had infantile spasms that went undiagnosed for 6 months as the neurologist was convinced it was a different type of epilepsy. He went from been a normal developing 18 month old to completely regressing. He initially has irregular EEG but after 6 months of spasms he had hypssarthmia. He lost so many skills. He has a different underlying condition but has been on vigabatrin for 3 years now.

The thing about IS is the devastating consequences of what they do to the brain. 3 plus years on my DS still has no speech and is still regaining skills he lost.

I would go to A&E if you are concerned I really wish I had done that now rather than waiting for consultant appointments that were 4-6 weeks apart and don't leave until they do an EEG.

Do you have any videos?? If so post them to this group.

m.facebook.com/groups/16008883835530
It is an amazing support group. It would be worth someone looking at them.

If you are worried I'd go to a&e tomorrow morning now and expect to be admitted. No point going tonight as eeg techs only work min to Friday

thank you for that, my niece had similar spasms as an infant, and likes her older sister was diagnosed with another form of epilepsy, Dravet syndrome.
sometimes this is mistaken for vaccine damage as first noticeable big seizure is after MMR. Usually these are first born infants who haven't been ill during first yr. Vaccine gives a raised temp and this is the cause of the seizure.
any viral illness or common childhood illness is a risk if temp is not fully controlled, as it starts a seizure that can not be well controlled and may need induced coma to reset the brain pattern.
With my nieces the epilepsy was fairly obvious after 3/4 months, and for all three of my nieces had the odd jerking before that and then had severe tonic seizures.
There are many forms of epilepsy and we all need to be aware of them, esp people like me who have worked with infants and young children, it should be part of our training imo
Money is needed for more research. my nieces have severe forms of dravet with the brain damage and life threatening episodes which increases the damage. life expectancy can be low but some survive past 14.

a fantastic video that I have shared on facebook and twitter.

Your poor nieces custard. I didn't realise how devastating epilepsy was

Thanks for your suggestions. My gut is telling me not to wait for the appointment. I'm going to take her to A&E tomorrow morning. Wish us luck

Thanks for raising awareness of this. I’m so sorry for what you and the other pp’s and your children are going through. Hope there will be a medical breakthrough soon.

Good luck Zozo. Saw you over on the fb site. I hope it's not IS but hope they find out what's going on x

And definitely trust your gut. It's so bloody important.

Bump!

m.youtube.com/watch?feature=youtu.be&v=IOaMntByLOs

Awareness video

Bump for Infantile Spasms awareness week

Another awareness video

www.facebook.com/438965949828558/posts/814342282290921/