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

The website "A day in a life with autism - Learning for Life has the story of that child, her name beginning with C. I agree it is an unusual case, but it was so traumatic for the parents i thought I should mention it in case it helps anyone in the same position.

Thanks nettles. Will google that now

My son has Tuberous Sclerosis. He never had IS fortunately but he did have complex partial seizures diagnosed at 3.5 months old. A high percentage of children diagnosed with tuberous Sclerosis are diagnosed because of IS. Vigabatrin is usually very successful in treating children with IS due to tuberous Sclerosis.

Thank you for bringing awareness. Early treatment is often the key to successful seizure control and ultimately a better outcome. We live overseas but when we first realised my son was having seizures we flew back to the U.K. And we immediately were sent for an MRI which ultimately gave our diagnosis. We were seen at GOSH. I would be surprised if once diagnosed with IS that an MRI wouldn't be the automatic next step toward a diagnosis.

I wish you luck on your journey.

Bump......

Thanks Polka.

Humble I hope your son is ok too

Shameless bump.
Keep hearing of people being made to wait for EEGs so the more awareness the better

I'm bumping this again. My DS has been thankfully very healthy but I have seen the devastating effects that infantile spasms can have. I showed the video to my husband who was shocked at how subtle they can be and how easily a family could dismiss the movements.

What a bunch of sweeties. I hope they're all being helped now.

I've come back for another BUMP
Its all about raising awareness

Thanks for raising awareness - I'll share this too. When my DD was 5 months she had what looked like a seizure like this on waking - we took her to A&E, and thankfully it turned out that it was probably a one-off, but I vividly remember how worried I was about IS as we didn't manage to get the episode on film and otherwise it's so difficult to know what to look for or whether it will recur. OP I hope your baby is responding to treatment and doing well, and to to everyone on this thread and their lovely DC

missm0use how did you get on?
I hope it wasn't IS for you

Hi - sorry been a manic time since I posted here (DD1 turned 1, work has been super busy, OH got a job and I found out I'm pregnant)!

Dr carried out a full physical on DD1 and watched the video. Then asked us to come to the mainland the next day for blood tests and further examinations & watch videos again after reviewing documents. We're got follow up appointment in 6 months to discuss how things are going unless blood tests show anything they need to deal with urgently or if the 'movements' increase in frequency or severity or both then Dr will see us sooner. As DD1 has hit so many milestones early (walking at 8 months) they aren't overly convinced that IS could be the cause of it so want to observe over a set period of time to see if she grows out of it.

Congratulations!

So they didn't think an EEG was necessary?

Bumping for importance...

This is very valuable OP....let's all keep bumping it so that everyone can see it.

I hope your DD is soon as right as rain and thank you for sharing her story and linking us to the video of others'.

Hello eye that wasn't me but I believe that ladies' can has since been diagnosed

Thanks for bumping!

Some of the videos you can see the seizures but others it's scarily easy to write off as a startle. My ds startles with arms raising while sleeping.

Health visitors need more training on this. Maybe the group should put out a petition calling on the government for it?

That's a great idea. There are starting a charity so that would be a good aim.

Heard today about yet another delay in diagnosis so bumping.
Awareness is key

And another misdiagnosis by a medical professional. Ffs 2 in one day!

Bump

Bump!
Let's raise more awareness!

m.facebook.com/UKInfantileSpasmsTrust/

Still keep in hearing about delays in diagnosis as hcp are so unfamiliar with IS. Please read and spread awareness
Thanks

m.youtube.com/watch?v=IOaMntByLOs

A new awareness video

Please watch and share to raise awareness of this terrible condition