Infantile spasms advice please

[roundaboutnow]

My doctor suspects my DC has infantile spasms. She's referred us to a doctor however said the wait would be 6 weeks.

After reading everything online saying not to wait and to take your child straight to A&E we did so. A&E told us nothing they could do and sent us home.

I'm distraught and feel helpless. It seems no one cares or really had the knowledge to know this needs to be sorted ASAP.

Please advise me on what I can do to get my DC seen before it gets any worse

That's bullshit OP. IS is a medical emergency and they have been negligent sending you away.
You need to go back to a children's hospital a&e where there will be direct access to paediatric neurology. Do you have one nearby??

Have you seen this?

lookaside.fbsbx.com/file/Infantile%20Spasms%20Awareness%20Video%20UKIST.mp4?token=AWzws3dFcsRLhG6eeClOwNRQb0B7ZAierxllOqxDuiaxtXMuVBXijv7P-Ldese6pJhFBnPOmZ18sdsid01UCNeuBizpry6xdcm91ye1pasx9IVNVoCvqM4vRcylWXMKIcxs3vApCi2dcxbhVcnb-AJtXEyRKn5rFYzTQvKoIgbtqJ36M0IU6OPFBIEVRGwc_pBd537Z2Y9VcKXno8SleOf36.

And join this Facebook group for immediate support

www.facebook.com/groups/1600888383553097/?ref=share

go.mumsnet.com/?xs=1&id=470X1554755&url=<iframe src="https://www.youtube-nocookie.com/embed/IOaMntByLOs" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen>

Also, can you take lots of video footage if you haven't already, to show to professionals.

Go back to A&E. You have to be demanding and be your child's advocate. Your GP has already laid the groundwork - now you have to make sure they follow through. Or, I would think about calling the GP telling them you're not at all satisfied that you're being made to wait 6 weeks and get a more urgent referral.

Thanks for your replies. We're going to take her to A&E again. Will they do an EEG today? Or will we be booked in for one

Hope they take you seriously this time.

I wouldn't expect an EEG to be done over the weekend but I would expect an urgent referral to be made. Stand your ground in A&E and request the paediatric doctor on call.

How old?
Should be urgent paediatric referral.important to start treatment for IS
Gp can on the day refer to urgent paediatric clinic.
Go Monday morning if no luck over weekend ask to be referred straight to paediatric urgent referral clinic

They won't do an eeg until Monday now but take a bag with you and be prepared for a stay. Good luck xx and join that Facebook group x

Ideally you need to go to a Children's Hospital A&E or a big tertiary hospital if you have one close-by

Thanks everyone. She's almost 5 months old. We've taken her to a children's hospital and are waiting to be seen.

That's great op. Let them see the videos and stand your ground. Don't let them fob you off with 'Reflux' if you have a gut feeling. An eeg will tell you definitively. It's scary how few medical professional know how to recognise IS.

Get her into treatment as soon as you can. If it were my baby I would pay privately even if I bankrupted myself. It's important the right drug treatment is started immediately because IS causes progressive brain damage. The drug treatment will help halt this.

I'm amazed this hasn't been recognised if they suspect IS. Take her to A&e with video evidence and demand to see a paediatrician, preferably a referral to a neurologist

I hope the are taking you seriously now @roundaboutnow and that you baby is ok. My dd's started at 11 weeks so I know what you are going through right now.

Thanks everyone. Paediatrician said he doesn't think it is IS but has made an urgent referral to a neurologist

Will you be seen tomorrow OP?
What is the paed thinking it is? Reflux?

Hi OP. I am an admin of the facebook group linked above and a trustee of the charity UK Infantile Spasms trust. Please request to join the group if you haven't already, we are happy to look at footage if you have it and advise. Suspected infantile spasms is a medical emergency and you should be given an EEG at the earliest opportunity (as EEG usually not available over the weekend that would be Monday) There is absolutely no way you accept any wait measured in weeks unless you've had a clear EEG in the meantime.

@paradyning he said potentially myoclonus jerks. Fingers crossed that's what it is and it's nothing to worry about.

He said nice he doesn't think DC has IS we should wait for our referral, so won't be seen Monday.

@Patchworksack thank you, I'll definitely join the group now. I'll send over the footage if I can, it would be great to hear what someone else has to say about it.

Myoclonic jerks are very rapid and don't typically happen in clusters. Infantile spasms last 1-2 seconds and can be single to start with, but usually happen in a cluster with a predictable interval between spasms measured in seconds. The movement often gets more marked over the course of a cluster then dies away. The child will often seem withdrawn, babble less, not seem able to see, or lose previously acquired skills. Leaving infantile spasms undiagnosed for 6 weeks could be catastrophic for development. We are happy to look at your footage but I would not take a doctor's opinion as gospel because there are far too many families in our group who were fobbed off for weeks or months.

@Patchworksack how are they now OP?

I think you mean @roundaboutnow paradyning

Oops sorry

@Patchworksack I'm not sure if what my DC has been doing is myoclonic jerks then. I've been trying to join your group but the link posted on this thread hasn't been working for me.

How long would it take for loss of skills to occur? DC doesn't seem less herself or as though she has lost any skills as of yet.

@paradyning She's doing ok thank you. The movements in the videos I showed the doctor seem to die off for a bit then return. They do seem less frequent now but I feel a bit lost as to where to go from here as I can almost guarantee they'll start up again soon.

Sorry for all the questions. I realise I seem a bit clueless but all the websites I'm reading are contradicting one another with the info they're giving so I'm becoming rather confused! And the doctors were no help in informing me. One doctor I saw didn't even think IS was epilepsy!