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

Another bump

I couldn't identify the spasms in the movements those babies were making, they just looked normal to me.

What's the prognosis if not treated.

Sorry should be a ? there!

All mine are well past the baby age but I'm wondering if this could have been something I missed?

Thank you for posting this and the link to the video. I hope your baby is ok. I hope it's ok to ask a question. My baby frequently gets wee shivers, like we do as adults (round here people say someone just walked over my grave but not sure if that's a regional thing). Her eyes don't roll and her limbs don't extend. Does that sound like it could be a seizure?

Wow that's so subtle and something I'd never heard of!

Also hope your DD makes a swift recovery

Felicia - if untreated, the prognosis is extremely bad. There's an underlying brain pattern - hypsarrhythmia - which prevents the child from learning new skills, so causing severe developmental delays, such as an inability to sit-up (or loss of ability).

Wow that's an eye opener. I always assumed that a seizure would be very easy to spot but those movements are so subtle. Even if I had thought to mention something like that to the doctor or HV, I think I would have left it if they'd said it was nothing to worry about.

Thank you very much for sharing this, it's really important. I hope your DD is better soon

My daughter is featured in the video. If anyone has concerns about IS please request to join our Facebook group www.facebook.com/groups/1600888383553097/?ref=bookmarks
We are in the process of setting up a charity to raise awareness and support affected families, if any of the parents on the thread would like to be involved please get in touch.

Hey, i' m a paediatrician and whilst they can look subtle in the videos, there are pointers that can help to identify them. When seeing them "live" (so to speak) what i found startling was the distress it causes the baby. They usually happen on waking and they happen in clusters. The baby has the spasm and then immediately cries then goes silent for another spasm then cries when it passes. They used to be called salaam seizures (now not pc) as they lift their arms and flex neck and trunk.

I second videotapes being useful. I remember in my first job a mum coming in with a video. She thought it was nothing out of the ordinary ( baby had other types of epilepsy) but even though i was inexperienced i immediately recognised it. I think its one of those things that seen once you will always remember.

All the best wishes to your baby. Its great that they are being treated and i hope the outcome for you is really good!

m.facebook.com/serensjourney/?ref=m_notif&notif_t=like

Ds did this constantly and we mistook it for startle reflex. He has lots of issues including epilepsy. He is 7 now.

When I worked for the now defunct NHSDirect I had a routine call from a dad concerned that his baby was doing an odd movement like a shudder and before going through the whole assessment said it's probably nothing as DS does a shudder when he weed!

However as I continued the questioning he described the typical IS startling/crying episodes (which by this time had stopped) and even though I hadn't even heard of IS my radar told me something wasn't right so I advised them to go immediately to their nearest hospital that had a children speciality (john Radcliffe) and to video any further episodes.

Afterwards I looked it up and was horrified at the implications of IS and so glad I had done the right thing. The signs are so, so subtle unless you are aware they exist.

NC. I hope you are getting the right treatment. There is a very precise cocktail of steroids and anti epileptics that has been proven to work best and avoid the worst long term effects. Sorry not sure what they are offhand.

Thanks Olympia. She's already had those (predisolone and vigabatrin) and is now on second line drugs as they weren't successful.

Milo already on the fb page
I hope you don't mind me sharing the video

Share it as much as you can!

My 3 year old still has what looks like a Moro reflex if disturbed when sleeping. He shudders and moves his arms up. Could that be it?

Seven years ago now ...Our son started to have spasms at 7m (4m corrected). Our first thoughts were constipation/pooping but after two days of increasing frequency, we took him to Paediatric A&E. He had a set of spasms whilst waiting to be triage'd, so we video'd it on our phone. Into A&E and we showed the doctor the video, she recognised it as IS immediately and admitted our son to hospital. Only problem was, it was a Saturday and nobody was around to carry out an EEG to confirm until Monday, so he had to suffer another two days of spasms before diagnosis was confirmed by EEG and treatment started.

We were lucky in some respects, he was started on Prednisolone and didn't have a single spasm after the first dose. He stayed on the steroids for 4 weeks before slowly weaning off.

In other respects we were probably unlucky. He was very premature, had a brain bleed, was already diagnosed as deaf - so we cannot tell for certain. But it is possible that the IS has contributed to his developmental delay, he is now diagnosed Autistic with Severe Learning Difficulties. We have a 7-year-old toddler.

Thank you to the OP for continuing to raise awareness of IS. The sooner a child is diagnosed and starts on treatment, the better the outcome.

A few days ago, as you know, we joined your amazing FB support group. We are 72 hours into the combination of meds having spent 2 days with Sheffield Childrens Hospital Neuro team earlier this week getting diagnosed, having decided to just drive the 90 mins direct to the specialists after months of our concerns not being appropriately dealt with. I don't want ANY parent to go through what we did, all the while exacerbating the potential brain damage this condition was causing our child. Read my new blog, as I too will be assisting in a co-ordinated effort to prepare parents and front line medics to deal with this appropriately and swiftly. It's vital! A huge thanks once again for all your help and support, ongoing as it is while we see the upsetting effects of the absolutely necessary cocktail of meds also. xx

isobelsjourneyinfantilespasmsawarenessuk.wordpress.com/

Sorry hennaoj not sure about that. If you're worried maybe ask your GP/HV?

I had an acquaintance who went through this with her baby, the baby did not respond to drugs over an 8 month period. In the end an MRI scan revealed a brain malformation that was causing the spasms. Surgery corrected the malformation and the spasms stopped. All I know was that the parents were extremely angry that the MRI had not been done earlier. They had taken the baby to Australia for the MRI as they had paedriatric doctor contacts there who suggested it. Apparently in UK drugs are the first resort, and MRIs are only for emergency situations, such as suspected brain tumours - West Syndrome being not life threatening but a chronic condition does not go to the top of the waiting list.

Baby is three now, and has some difficulties but is doing fantastically well, walks, beginning to talk. Lots of physio etc.

Ask about MRIs. I do not know the full story, but I know how this has been life changing for my acquaintances, and how upset they felt with the NHS system, rightly or wrongly, and how they felt they had been lost in the system for two many months, following professional protocols which turned out the be the wrong ones.

I stand corrected by anyone who has a different take on this story, of course every experience will be different and my acquaintances did know someone whose child had been cured of the spasms by drugs, so they were of course expecting this to be the case with their child, and followed all the NHS advice/treatment at the time.

Hi I'm so glad I found this post. I was planning on having an early night but thought I would check MN before bed. My DD who's just turned 1 has been having spasms that almost look a shudder / someone walking over your grave. We got a referral to a paediatrician and will see them on Monday. Having seen this post I know what to push to have her tested for!
Having spent the last 8 months breaking my heart with worry as to what was wrong with my amazing daughter and having Dr's, HV, MIL and OH try to reassure me that it was nothing, overwhelmed, overstimulated, her nerves from teething, her nerves still developing as she was a early developer (she was standing at 5 months and walking at 7/8 months). The fact that she was so active was part of MIL/ OH as to why "it can't be anything serious"

I actually feel relief knowing it's a thing and not in my head!

knittingwithnettles they do the MRI but the priority is the EEG and starting the meds, then other tests including the MRI follow to aid in establishing (where possible) the cause and thereby, where necessary, adjusting the treatment accordingly. Surgery, if required, being an option.

MissM0use - make sure you have good video footage and insist on an urgent EEG to test for Hypsarrythmia - you ideally need a neurology specialist but this first test is a must - do not take no for an answer. Read my blog, link posted earlier, sounds like we have had similar issues. Your childs development has been going well, so may be why they have not followed this path (it is extremely unusual for a chid with spasms not to suffer delayed development - often plateau'd and regressed development). Still worth having the test done to be sure. I wish you the very best for Monday. x

As I say, the frontline meds didn't work in this child's case, nor a ketogenic diet (although I think that worked briefly). I think the parents kept chasing up the MRI scan but were repeatedly told they needed to see if the drugs worked first (for 8 months). They never worked. As I said this was a one off example, but when I felt it was important to mention the MRI scans, and that you may not necessarily get one soon enough under NHS protocols. Perhaps things have changed recently.

I think things must have changed. We were given the option of staying in and waiting for an emergency MRI or getting an appointment through for one in the next few weeks which would be co-ordinated with a lumbar puncture under the same anaesthetic. It is such a complex diagnosis, they follow up with a plethora of tests.

MR scans are definitely now part of the testing schedule.
There is able to be a delay in getting them as the urgency is to begin drug treatment once EEG confirms diagnosis.