Worried about infantile spasms

[NearlyThere91]

My baby is 11 weeks old today.

2 weeks ago, we noticed he kept doing the startle reflex and nodding his head. We took him to A&E and he was observed for a night and a day. We were told we'd get an outpatient EEG. They also prescribed omeprazole for reflux,

I followed that up today but sadly the referral was lost. I spoke to the consultant directly who said she'd arrange another one, but it could be up to a month.

She asked how my son was doing and I told her about my concern.

Last night and 2 times today, when woken up by us (all 3 times to change a very full nappy on a sleepy boy), he has repeatedly rolled his eyes back (not fully back) and jerked out his arms and legs. I have captured some of this on camera, but never the most severe part (as I'll be changing him rather than using my phone).

The most recent episode I didn't get on camera. He did it about 15-20 times. My mum was here and she said he wasn't doing anything concerning.

I'm honestly beside myself with anxiety.

The consultant advised me to go to A&E to show videos but last time it took them 8 attempts to get bloods from my son and it was heart-breaking. I asked if any other options and she said yes, show a GP.

I showed the GP videos but they don't capture the big episode or most worrying movements.

What would you do in my situation?

That sounds worrying. You are doing the right thing. Video all you can.
Go to a&e. Are you near a children's a&e at a large centre?
There are other family's who can offer support here if you are jn Facebook



Does your child have infantile spasms? Can I send you videos I captured (how do I do that)?

Mine did yes. If you join that Fb group you can post there x



Worried sick about infantile spasms www.mumsnet.com/Talk/childrens_health/4750547-worried-sick-about-infantile-spasms?msgid=124189686#124189686
The pic in here

Do you live near a children’s hospital? If so go there. It’s such a rare illness regular doctors will not recognise it.
If it’s caught early you can hopefully completely reverse the effects. Don’t waste any time

We went to hospital last time and they sent us home with omeprazole and saying the EEG as an outpatient.

I do live near a massive hospital with a specialist centre. Because it's 9pm now do you think wait until the morning, as nothing will be done overnight, and go first thing?

It would probably be best to wait until morning as they don't do EEGs overnight. Take a bag.
And keep pushing them. Infantile spasms needs to be treated asap.
If you want to dm me then do

They need to be doing an eeg in the next few days not weeks

I'm going to go first thing. Have PMed you - did your child spasm all the time, or just when woken up? (Not when he wakes up naturally, but when we wake him up to change him)

If you live near a tertiary Children’s Hospital / a large hospital with Paediatric services then personally I would go there through A&E tomorrow and ask to be seen by the Paediatric Neurology dr on call. They will have vastly more experience in this than the average gp or non-paeds specialist A&E dr.

Spasms are more prevalent on the wake/sleep boundary.
It's really difficult as they are often mistaken for reflux (hence the Omeprazole).
Have you watched this video? To see if any are similar?

Absolutely agree with this

I'll go first thing. I can't seem to find that group on Facebook

I'm not a doctor, and you've had very good advice already.
But when you see the pediatric neurologist or whoever it is in A&E I would push for genetic testing.
There are some rare genetic mutations that can be relatively easily treated, eg a very small proportion of infantile spasms and epileptic fits can be due to mutations in genes relating to the transport of thiamine or other vitamins. I know someone in the US whose child was worryingly ill as a baby but is neurologically normal at 7/8 after genetic testing revealed a treatable defect of this kind. Someone else could explain all of this better!

Hi do mind sharing the doctors details,my son is diagnosed with IS and on medication

Hi I came across your post.
my son diagnosed at 6 months and he 7 month just. He on medication and no IS movement yet as he responding well to the medication. Do u want share some of your experience