4 month old stiffening

[abunoor]

Hi,

My DD is 4 months old and has had colic few days after birth. HV colic should go away on its (my elder DD also colic and she did fine after few months - difference is she was mix fed but this younger one only breast feeds does not take bottle).

Every now and then - either when she is hungry or wants to go to sleep - she could get really stiff with her hands and back.

She would pull both her hands next to her cheeks moving her head on one side, pull legs up and keep her mouth open

She won't bring her hands down or become normal until either she starts feeding, goes to sleep, or we distract her to something that would grab her attention - see attached image.

This has been happening for 3+ months which is a bit worrying for us but HV it's fine.

Appreciate if anyone can provide some information on what this could be.

What did the HV say?

HV said Colic probably is the reason she may be feeling pain in the stomach and hence stretching her backs and making fist with hands. And that it should settling down and go away from 4th-5th month onwards.

Colic made her vomit as well loads of time (its bit settled now she does bring up not big vomit after every feed) - we took her once to ER and twice to GP - both of which prescribed Gaviscon to see if it help - we tried that for 3-4 weeks but no help. We currently give her Infacol which sometimes work.

What is concerning you? Sounds a perfectly reasonable explanation the HV.

Have these movements increased?
or any other changes? Less smiling for example

@MrsPelligrinoPetrichor - it really difficult to hold her when gets very stiff and bends are back backwards.

@Slave2Avocads - movements are same as before, no other changes - smiles fine, watches her older sis and tries to talk, etc.

@abunoor I really dont want to cause you unnecessary worry, I would just check out this video about infantile spasms just to check that your daughters stiffening is not the same - the photo you have shared shows her with her legs and arms flexed up but obviously it’s not a video.

It’s often misdiagnosed as reflex or colic. As I say, I don’t want to worry you and have debated posting.

We took her to GP - she did the same thing in front of GP - who said it does not look like fit and not infantile spams. As she was not sure, she asked us to take her to the Children's A&E.

So we took her there, they took blood sample, checked her vitals - vitals were measured 3 times in our 8 hour stay and were all normal.

The A&E consultant sent us to get her EEG done on that same day - but as it was evening and following weekend and bank holiday, she said the results won't be available soon and hence sent us back home as it did not look to be too worried about much.

She prescribed us Lansoprazole (7.5mg - 15mg broken into half and given as 7.5mg according to her weight) as she has colic and it may help her - so we started giving her since last 3 days and continuing.

She is still the same - bring up arms and legs about every 2-3 hours - but it has not gone worse than before and she still plays, smiles, feeds, pees, etc.

We are still waiting for the EEG results from Friday.

@abunoor thank you for your update. How is everything going? Best wishes

My son used to do that he had horrific reflux and was diagnosed with sandifers syndrome went away once the reflux was under control. If you look on you tube you will see what it looks like. Good that they have started the lansaprosole

EEG reports came back as normal - ED doctor said to continue with Lansoprazole and a review meeting will be booked with my daughter's GP.

We have been giving her Lansoprazole but she is still the same - pulling arms next to her face and get stiffed.

She has a weight check scheduled for next with HV as she had been monitored for weight since birth every month. Will bring up "sandifers syndrome" and see what HV says.

Thanks for your support - very much appreciacted.

My health visitor didn't know what it was but the paediatrician was a specialist in gastro and he identified it. Have they suggested early weaning?

Was going to say the same as a PP - friends little boy has Sandifers syndrome and has fit like convulsions and stiffening that are due to reflux and helped by omeprazole.

I thought that sandifers syndrome was usually head / back extension and not flexion of the arms but I’m no expert! Great news that the EEG was normal x

@imhereforcake Does early weaning help?

We gave her baby porridge 1 day before her 4th month visit and mentioned this to HV.

The HV said strictly no to weaning at that stage as she's too small and would develop allergies which can cause obesity at later on.

Don't quite understand why we as parents have to research things like Sandifers Syndrome instead of doctors.

@imhereforcake Received the letter from ED paediatrician saying the following :

"
She was recently presented in the emergency department with some abnormal paroxysmal movements suspicious of likely Sandifer syndrome.

She underwent an EEG which has been reported normal as below.

Baseline EEG (03/05/2024)

1. The background rhythms are of higher amplitude on the right during drowsiness, becoming fainy symmetcal durng sleep.
2. There are no other features of note.
3. There is no epileptiform activity.

She was discharged on a month course of PPI from ED.
"

Early weaning didn't help us. My sons reflux was out of control for about the first 6-7 months of his life weaning made no difference and neither did him being able to sit up himself but the sandifers seemed to stop around 7 month mark which could have been due to him sitting up on his own. Can you get a referral to a gastro paediatrician they would be best advised as to next steps.

My daughter has this strange stiffening thing bothering her since she was few months old.

When she was about 4 months I posted here (https://www.mumsnet.com/talk/general_health/5066191-4-month-old-stiffening) and took her to ED and was referred to specialist paediatrician who said it was related to her colic causing her to do this stiffening and will go away as she grows old - diagnosis was something called Sandifers Syndrome if I recall.

She's not colic anymore and these stiffening/twisting episodes were quite less (once or twice a day) from 6 months onwards.

She's 1 year now and these have started to happen more frequently like 8-10 times a day.

She would be playing and then she would lay slowly on the floor protecting herself (it's not that she suddenly falls down) and then start twisting her legs and hands up in the air.

See attached image if it helps.

We untwist her legs but in few seconds she goes back to that again twisting legs and hands up in the air.

This happens until she gets distracted by something and starts playing again.

Doesn't happen when she's up straight in our hands or sitting and playing. she goes to lay on the floor or bed specifically to do that.

We are not sure what this is and pretty sure we will turned away again.

i have a child with severe complex epilepsy. It may be nothing at all but I would try to film às many episodes as you can and ask for a neurology referral. Seizures can manifest in many ways and be v subtle so are easily missed sometimes.
I know you had an EEG before but unless it is happening all the time if it was seizure related it would only show up.of she had one during the period of doing the EEG. IYSWIM
It is hard to say anything from a photo but it is worth getting it checked again in my opinion.

Ps Does she do any twitching at all after being stiff. ? it doesn't have to be large jerking but any shaking? And is she alert and does she respond to you during the episode?

My boy did that, looked like he was fitting some nights as he would start frothing :(.
Turned out he had GERD and the pain caused an intense response they diagnosed as sandifers syndrome. He got much better once started weaning.
Omg sorry, responded to first post. So glad you got it diagnosed. But oh no..my boys nearing 1 and I thought we are getting it to slow down x

Try colief my baby had colic and it seemed to help better than other medicine out there

She does move her legs up and down by about 5-10 cm and she's alert - as soon as we untwist legs she goes back normal for 5-10 seconds and goes again.

During the episode if we distract her with toys or video that interests her then she would become completely normal.

Edit - last when she was 4 months she had an EEG but unfortunately she didn’t had that same movements at all as she was sitting in lap and now also she only does this when lying down - never when she’s standing or sitting.

is she moving them up and down many times or just the once ?

Many times

I did this as a baby and was later diagnosed with Cerebral Palsy. To do with the brain not controlling the muscles enough and them spasming as a result. Is she hitting other milestones normally? I couldn't tell you whether it was actually a symptom of CP, I just know I was doing it in the video. Unfortunately my parents are no-longer with us, so I can't ask them. I now (43) often walk with one arm by my side and one arm bent at the elbow. Might be worth asking for a neurology referral, although I want to emphasise that I

• have no knowledge that other babies DON'T do it
• have no idea whether really was to do with the CP
• there would probably be other things she was slow to do/grasp if she did have CP