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Rett syndrome hand wringing, 12 mo old

14 replies

Anxiousfirsttimemom · 22/01/2026 03:45

I’m about to lose my mind. My 12 mo old daughter started to do these hand wringing thing where she clasps her hands and moves them up and down. I know this is a sign of Rett syndrome and I’m just so so worried.

I even went as far as to go on a Rett syndrome Facebook group to ask parents when their babies crawled hands and knees. I got about 50 responses and found that 12% of babies crawled on time (7-12 mo), 50% of babies crawled late (after 12 mo) and 38% never crawled at all. My daughter crawled at 8 months but I still get so nervous.

She’s meeting all her milestones but she’s not clapping. She points, she waves, she is really good with her hands in eating and stacking blocks and like just doing things using her hands. She has a few words and follows directions really well. She can stand by herself without holding onto anything for a minute but she hasn’t taken independant steps yet. But she cruises a lot.

Every time I see my daughter do this hand wringing thing I get so upset. And it’s her birthday tomorrow and I’m crying instead of being happy she’s turning 1. I can’t do this anymore. Can someone please tell me hand wringing is normal? She doesn’t do it all the time but tonight she did it like 10 separate times in an hour. So it’s increasing. It used to be maybe a couple times every other day.

these photos aren’t my daughter but it’s very similar to the movements I mean.

Rett syndrome hand wringing, 12 mo old
Rett syndrome hand wringing, 12 mo old
Rett syndrome hand wringing, 12 mo old
OP posts:
BlackCoffeeAndSugar · 22/01/2026 03:50

Babies do all sorts of funny things and go through phases as they develop.

Please just enjoy birthday! You'll not get the 1st birthday back. .

Anxiousfirsttimemom · 22/01/2026 03:52

BlackCoffeeAndSugar · 22/01/2026 03:50

Babies do all sorts of funny things and go through phases as they develop.

Please just enjoy birthday! You'll not get the 1st birthday back. .

Thanks, the hand clasp is like this. Do babies that are older like 1 yr old still do this

Rett syndrome hand wringing, 12 mo old
OP posts:
Nomnomnew · 22/01/2026 03:57

I hadn’t heard of Rett Syndrome but it looks like it’s very rare and also that it would take some time to work out if it’s that.

As PP has said, babies learn to do something random and then go through a phase of doing it a lot. They’re working out how to use their bodies. I can’t see the pictures but the description of putting their hands together and flapping them about sounds familiar and I think my little one did that a bit when she was a baby - she’s now 3 and is totally fine.

Please try and focus on the here and now and enjoying your baby. Most likely she is okay.

Interested in this thread?

Then you might like threads about these subjects:

BlackCoffeeAndSugar · 22/01/2026 10:37

Anxiousfirsttimemom · 22/01/2026 03:52

Thanks, the hand clasp is like this. Do babies that are older like 1 yr old still do this

That alone doesn't mean Rett. That's a collection of symptoms.

Can your health visitor reassure you at all? Do you have a nice one?

LamentableShoes · 22/01/2026 10:42

I'm not familiar with Rett but the information online says the handwringing replaces purposeful hand use... it doesn't sound like that's the case for you?

My 1st dc didn't clap or point for ages..
When I realised I got a bit worried. He's perfectly fine now, and demonstrates excellent fine motor skills by thrashing me on Mario Kart.

I've got photos of my DC clasping his hands. They just like the feel of flesh. It's why toddlers bite ...

Everlore · 22/01/2026 11:08

I completely understand your anxiety, I really do, I am always worrying about our, thankfully very healthy, baby, who is only a couple of weeks older than yours. She is our first so I don't really have experience of caring for a baby full time before, meaning I tend to over-think everything, that and I have always been a very anxious person. I have engaged in some very unhealthy doom Googling based on something very minor and have convinced myself that something is very wrong on several occasions, only for it to be nothing.
Our little girl's fine motor skills are very good, constantly waving, pointing and clapping, however, for the last month or so she had been making weird 'crab claw' motions with her hands and we could not figure out what on earth she was doing. It was only on Christmas day when she was playing with a singing nursery rhyme book that she had been given and 'Twinkle Twinkle' started playing that we realised she was replicating the movements we do to the song. She now starts doing the 'crab claw' every time we sing the song. I suppose it isn't that surprising, she has been spontaneously doing the 'Wind the Bobbin Up' moves at random intervals for ages now, but nice to know what the motion means!
I am sure this is just a normal developmental phase, it's something your little one has learned to do and is just doing it all the time at the moment, it will probably be something else in a couple of weeks. Ours was frantically putting her feet in her mouth between bites of dinner a couple of weeks ago, but seems to be over that at the moment. Sending you lots of best wishes.

Marylou62 · 22/01/2026 15:59

Again I will say this kindly. Just like I did on your other thread. You must get help for your anxiety. You will ruin your childs life by your actions. You know this panicking isn't at all normal don't you? You need an urgent appointment with your Dr. Please know this advice is coming from a kind place.

Fifthtimelucky · 22/01/2026 16:31

I used to know someone with Rett Syndrome. I gather that the symptoms didn’t start until she was around 2.

Mercifully it is a very rare condition, so it’s most unlikely that your daughter has it.

Try not to worry.

ItssssAMeMariooo92 · 22/01/2026 17:21

I used to care for a young lady who had Retts and there was no indication whatsoever until she was a toddler and started regressing. What your baby is doing is exploring and it is very normal.

I know it is easier said than done but please try to not worry and enjoy watching her grow. The days may seem long but it goes so fast.

It may be worth speaking to your hv or gp about your anxieties.

QuantumPanic · 22/01/2026 20:01

My almost 1yo does this all the time...I thought it was cute! Didn't occur to me that it might be something to worry about (I still don't think that it is). Also my baby cannot stack anything! She is still firmly in the destruction phase. She can't point it wave either. Sounds like your lovely babe is very advanced. Happy birthday to her!

BlackCoffeeAndSugar · 22/01/2026 21:21

I hope your baby had a lovely birthday :)

Anxiousfirsttimemom · 23/01/2026 07:59

BlackCoffeeAndSugar · 22/01/2026 21:21

I hope your baby had a lovely birthday :)

Thank you, she did :) it was a really nice and fun day.

OP posts:
Anxiousfirsttimemom · 23/01/2026 08:02

Everlore · 22/01/2026 11:08

I completely understand your anxiety, I really do, I am always worrying about our, thankfully very healthy, baby, who is only a couple of weeks older than yours. She is our first so I don't really have experience of caring for a baby full time before, meaning I tend to over-think everything, that and I have always been a very anxious person. I have engaged in some very unhealthy doom Googling based on something very minor and have convinced myself that something is very wrong on several occasions, only for it to be nothing.
Our little girl's fine motor skills are very good, constantly waving, pointing and clapping, however, for the last month or so she had been making weird 'crab claw' motions with her hands and we could not figure out what on earth she was doing. It was only on Christmas day when she was playing with a singing nursery rhyme book that she had been given and 'Twinkle Twinkle' started playing that we realised she was replicating the movements we do to the song. She now starts doing the 'crab claw' every time we sing the song. I suppose it isn't that surprising, she has been spontaneously doing the 'Wind the Bobbin Up' moves at random intervals for ages now, but nice to know what the motion means!
I am sure this is just a normal developmental phase, it's something your little one has learned to do and is just doing it all the time at the moment, it will probably be something else in a couple of weeks. Ours was frantically putting her feet in her mouth between bites of dinner a couple of weeks ago, but seems to be over that at the moment. Sending you lots of best wishes.

You know actually today she started all of a sudden doing ms Rachel hand gestures and I am pretty sure that’s what this was. How to not jump to extreme scenarios, I don’t know.

OP posts:
BlackCoffeeAndSugar · 23/01/2026 10:06

It's so hard

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