Anxiety ridden about infantile spasms

[BreezyShark]

My baby is 8 months old. On Saturday he had what looked like twitches, this happend 5 times in the space of 10 minutes and they only lasted a couple of seconds. He clenched his fists and pulled a face like he was gritting his teeth (although he doesn't have any teeth) and his head shook. After these episodes he'd be his perfect happy little self jumping around and laughing. I do have postnatal anxiety and I immediately started thinking the worst but I'm lucky that my sister also witnessed it and said it did not look normal, I knew she was worried aswell because she immediately said let's go to A&E. Anyway we went to the hospital and they did a blood prick test and said they'd send me a referral in 3 weeks and I'm just at my wits end because surley they shouldn't wait that long if its infantile spasms. He did this again on Monday and Tuesday so I took him to the doctors and they again said to wait for the appointment and if these episodes last more than a minute to call 999. My baby has now started twitching both awake and in his sleep, it kind of looks like a shudder but his shoulders go up. He also shaked his head side to side quite hard and holds the back of his head like he's in pain. I'm so scared I can't even sleep.

Do you know which department you've been referred to or which Dr?

Depending on where you are, go to the Evelina London or some reputable children’s hospital with an A&E and neurology department and tell them what you have described here. That’s what I would do. It’s very likely going to be fine but I wouldn’t take chances with this and wait for GP referrals etc.

I think this is very good advice.

Is he teething?

I ask as my daughter used to do strange head twitchy/tilty movements and then a few days later a tooth would pop up. I'm convinced it was a reaction to her toothache or an attempt to 'shake' the pain away.

I worried too about IS and also ended up in A&E where they took it seriously and referred her for an EEG, but more to rule it out than anything as she was otherwise absolutely fine.

So in your situation I'd get back to A&E, preferably one with pediatric neurology but try not to worry (tough I know!!) as there is likely a much less sinister explanation.

Good morning! If it is possible try to film the episodes so you can show them to the neurologist. However, if I remember well infantile spasms usually do not happen in sleep so the fact that you saw this spasm during sleep should indicate that these are not IS , which anyway are extremely rare.

I’m jumping on this post as my daughter has recently been doing weird head crunch movements and I am also worried about IS but I think she is also teething!if you see this, could you share what your baby’s movements looked like?

Hi @SecretSloth99 - hers was like a quick drop of the head or head to shoulder twitch. It did look similar to videos I saw of IS hence why we went the A&E route but they weren't at all concerned given that she was fine in all other regards (eating, sleeping etc). Not sure how the OP of this thread got on in the end but my daughter is absolutely fine now at 3.5. Hope all OK.