Worried sick about infantile spasms

[Chiikichik]

Currently been admitted overnight with DS 8 months. In the last couple of days he has Started doing lots of jerking movements with his arms and almost tensing up. Absolutely fine in himself and usually smiling through it.

Waiting for an EEG but unlikely to be until Monday. Worried sick and don’t know how I will get through the next few days.

The docs have said they need to look at all options and they want to rule it out. Worried sick.

does anyone have an experience of this?

I hope you're ok 💔

You're in the right place being looked after.

We had the same concern when DS was around 9 months. Started doing tense jerk movements. It started on Xmas eve 🙄 we called 111 who advised us to monitor it and it if got worse to go to hospital. Thankfully it stopped by itself after a few days. However I was quite concerned about infantile spasms so I know how you're feeling.

Sounds like your healthcare provider is being proactive which is good. Hopefully the tests on Monday show that it's nothing, like it was for us 🤞

Big handhold for you xxx

So sorry you are in this position. Glad you are being looked after properly. If you are on Facebook there is a wonderful support group that can help

Sending a hand hold. IS is incredibly rare so very unlikely to be that but think of it as a process of ruling it out rather than confirming anything. Both my boys did similar things at a similar age and it was just a phase.

Thanks all. Still waiting on the EEG as it couldn’t be done at the weekend.

it’s the waiting that’s killing us. Hoping the EEG will be done this morning.

My son had infantile spasms (he has hydrocephalus so was already at risk). When he started on meds he stopped them within 2/3 weeks. Have you noticed any regression in development stuff?

I founs videoing them helped the neurologist a lot

Ben now has other type of epilepsy but as i say he has many other factors at play too

@craigth162 no hes developing ‘bang on’ his milestones as in the words of the consultant. He had the MRI yesterday which didn’t show anything major, which is good too.

That's good news. Fingers crossed you get your eeg soon

Just an update for anyone who comes back to read this. The EEG was totally normal. The consultant neurologist said they were totally benign and would grow out of them. The little monkey has stopped doing them now, and they only lasted about 4/5 days.

gave me the fright of my life and never been so happy that he was all OK.

Really pleased to hear that. Well done for pushing for the checks

This is going to sound mental so im sorry but this happened to my friends baby last year. Prob the same age given a month or 2. The HV saw and sent her straight to the drs who referred her straight to AnE so she was petrified.

Makes me feel weird to say but It was pleasurable spasms. It happens with some kids! So I really hope it's this for you OP xx

Praying for you here. My 3 months old baby shows signs of it. In the morning between 5-7am her spasms are so bad she can't fall back asleep and I have to pick her up and hold her every morning and still struggles to sleep. We're getting EEG scan on Tuesday after pushing the NHS. But yes, the wait really kills and you're trying to stay strong and not think too much into it... You're in good hands, so try to get some sleep if you can. Your baby needs you x

@Michelleflee I’m not the OP but just wanted to write. I really hope you’re okay. Honestly is there any chance you can take your baby to A&E today? My understanding is that IS is considered a medical emergency and needs to be dealt with immediately not waiting days for EEGs. I think @paradyning knows a lot about it, maybe she can clarify?

Yes if you are close to a large hospital with eeg then go to their a&e. They may be able to fit you in today