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Children's health

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Original poster

Worried about infantile spasms

17 replies

NearlyThere91 · 27/02/2023 20:37

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?

OP posts:

paradyning · 27/02/2023 20:50

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

Original poster

NearlyThere91 · 27/02/2023 20:52

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

OP posts:

paradyning · 27/02/2023 20:59

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

paradyning · 27/02/2023 21:01

paradyning · 27/02/2023 21:02

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

Gymmum82 · 27/02/2023 21:07

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

Original poster

NearlyThere91 · 27/02/2023 21:10

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?

OP posts:

paradyning · 27/02/2023 21:15

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

paradyning · 27/02/2023 21:16

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

Original poster

NearlyThere91 · 27/02/2023 21:19

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)

OP posts:

Puddlelane123 · 27/02/2023 21:22

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.

paradyning · 27/02/2023 21:23

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?

paradyning · 27/02/2023 21:23

Puddlelane123 · 27/02/2023 21:22

Absolutely agree with this

Original poster

NearlyThere91 · 27/02/2023 21:24

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

OP posts:

massifcentral · 27/02/2023 21:36

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!

Hanaa11 · 17/12/2023 14:35

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

Hanaa11 · 17/12/2023 14:36

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

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