Please or to access all these features

Behaviour/development

Talk to others about child development and behaviour stages here. You can find more information on our development calendar.

Infantile Spasms?

12 replies

KylaKins · 27/09/2022 19:30

Looking for advice please.
My 7.5 month old has started doing some strange bodily movements in the last 5 days and now I am worried he might be suffering from Infantile Spasms.
Can anybody advise?
For the first 4 days he would periodically do this thing while sitting where he would raise both hands in the air and hold for a second or two while looking downwards with his head. It almost looked like he was dabbing. Then he would return to normal and a few seconds later he would do it again. The movement was occurring in clusters. He did not appear upset afterwards. His eyes always remained normal and did not roll in his head and his wrists continued to move. He was also sitting unaided each time this happened and he did not fall over.
After 3 or 4 days he stopped doing this. Today, however, while I was feeding him his lunch, he arched back in his highchair. Again, this behaviour occurred in clusters. He did it about 3 times in a row. It struck me as an unusual movement. Again, he was not upset afterwards, nor did his eyes roll in his head.
Earlier today when I was feeding him his head was doing a strange sort of a bobbing movement, but this may have been linked to his excitement/desire about what he was eating. He loves his food and gets almost feral with anticipation when he's really enjoying something.
I have my phone on hand now ready to record the next time any of this happens, and I will be taking him to the ER the next time I see it, but in the meantime, I wonder if anyone could offer some reassurance because I am worried sick.
My husband doesn't share my concerns and I feel like I'm going insane with the stress.
Thank you

OP posts:
Kinderbueno89 · 27/09/2022 21:53

Hi I’m sorry you’re having such worries about this. I had concerns about this with my baby and although it turned out not to be that I remember how paralysing that fear was.

I don’t know if anyone online can really advise without seeing the movements you describe and knowing your little ones medical history. Infantile spasms are rare but as they are a medical emergency I would advise you see a doctor tomorrow. I’ve always found doctors very good with babies. You can explain that you haven’t managed to get a video of it yet but that you will keep trying. I don’t think you should delay getting a medical opinion until you have a video as that might take some time and you sound worried now and that’s such a horrible position to be in. Sorry I can’t be more help but either your baby needs a doctor or you need reassurance from someone who is in a position to give it to you. Wishing you all the best.

georgarina · 28/09/2022 15:30

Hi, it does sound like it could be infantile spasms. I took DD in for similar as a baby, turned out not to be, but I did some research on it then.

All our GP told us to do was record it and bring the recordings in, so you're doing well there - I would probably call and explain what's happening so they're either prepared and know what's going on, or they might refer you for further testing depending on what they think.

We were actually told to go to A&E because DD had eyes rolling back and two (what looked like) shaking seizures, but ended up not happening again and A&E said this was quite common and that we could either admit her overnight or try to record a video if it happened again.

Good luck x

KylaKins · 28/09/2022 20:12

Thank you very much for your reply. I have taken him to the ER and we have been admitted. They will do the necessary tests tomorrow. The doctor said she suspected IS.
I am beside myself.
I am thinking now about the day the spasms started. He fell backwards that day from a sitting position and banged his head on a foam tile. I thought nothing of it at the time. It has happened before.
I am sick with worry and dread now.
I will keep the you posted on outcome. I want to cry my eyes out. My poor baby

OP posts:
KylaKins · 28/09/2022 20:14

Thank you for your reply. I am glad your little one was not suffering from IS. I have taken my little boy to the ER now and they agree there's cause for concern. They will run the necessary tests tomorrow. I am worried sick. Xx

OP posts:
Kinderbueno89 · 28/09/2022 22:52

@KylaKins
I’m so sorry you’re in the hospital and going through this. You’re in the right place to have it investigated. Hopefully they will be able to give you the results of the EEG as soon as possible. Babies topple over on to foam mats from sitting all the time.

Having been on the ward with my little one waiting for tests I know it’s such a desperate feeling but you do find the strength. I read a lot on mumsnet but don’t usually reply to posts but do say if discussing anything here is at all helpful to you. I will be thinking of you both.

georgarina · 29/09/2022 06:02

Good luck. You did the right thing bringing him in and he's in the best possible place now to get care and for you to find out what's going on. Thinking of you x

KylaKins · 30/09/2022 11:03

Update.
Infantile Spasms have pretty much been ruled out. George's EEG came back normal. They will repeat it in 2 weeks to really 'put it to bed'. They will also do an MRI in 4 to 6 weeks because Dr agrees something is going on when he does the aforementioned movements.
I am now wondering if the eczema he has on both shoulders was causing him to itch, and this was his way of trying to relieve it, as he has not yet worked out that he can use his hands in that way.
Another theory I have is that he had a sore ear, as I have had one in the last week, and the whole family has had a runny nose and general mild headcold.
George is examining well, the doctor said. He is meeting all of his milestones and he is very sociable.
I cannot explain to you all the relief I am feeling right now. Thank you everyone for your advice and support.
I am glad I took him to the ER to be examined.

OP posts:
Kinderbueno89 · 30/09/2022 21:52

@KylaKins I’m so pleased to hear that. That’s really reassuring about the EEG. It sounds like they are being really thorough and looking after your little boy. My son does a similar movement (but he doesn’t tend to do it in clusters and I can tell it is voluntary) that his him trying to move his body / escape if he’s being held. Babies can do funny movements. But I do think where you’re worried it’s best to get a medical opinion. You’re clearly observant and looking out for him 😊. He sounds lovely and like he is doing so well! All the best!

Victoria1235 · 03/07/2025 20:02

Hi there, I’m so sorry to reply on this old post, I’m really hoping you see this noficification. My little one did the exact same thing as yours this morning (both hands up like a dab, held for a couple of seconds which he repeated a couple of times) I took him to a&e and they did not do an EEG and asked me to video it in the future. I wonder if you could tell me what your little ones turned out to be? I’m panicking like you did!! I hope it all turned out ok x

EllenBea84 · 03/07/2025 23:55

@Victoria1235 Hi Victoria, George never got a diagnosis, but I did find a video on YouTube where a doctor was describing similar movements etc and I can't remember the name of what he called it but I do remember that it was caused by baby going through a period of rapid brain development. This checked out for me because after George's 'spasms' stopped he began crawling, which he hadn't been able to do before. I think it might have been called 'Infant Shudder Syndrome'. If you are concerned in the next few days, go to a different ER dept. I recommend researching which ones specialise in infant epilepsy because they will be the ones who can help you. You can't waste time with infantile spasms as I'm sure you know. I hope all works out for you and I do think that it will.

EllenBea84 · 07/07/2025 16:45

@Victoria1235 I think what George ended up having was called Infant Shudder Syndrome'. Look it up. It was harmless and it usually occurs when a child is going through a period of rapid brain development. He never got diagnosed with this, but it is just through my own research that I am surmising that that's what he had.
How are things progressing for you now? Its such a worry I know.

Victoria1235 · 08/07/2025 09:17

Hi, thank you so much for your reply, it really helped. Glad to hear it turned out ok for your little one! It really helped calm my nerves. It could be the same for my little boy, or I’ve also come across sandifers which is severe reflux and causes pain and spasms. After A&E we’ve sent a video to the consultant who treated us and she’s booked him an EEG for tomorrow. Scary but I’d rather have it fully investigated! Thanks again for your reply

New posts on this thread. Refresh page