you know that gut feeling thing...

[Clarella]

my 25 week old son (so nearly 6 mo) has always been very strong and often stiff as a board esp when upset. this has often been commented on. he's sitting early and always liked pushing feet down to stand. slings have been really really fought till recently. car seats too. breast feeding has been a long arduous battle with mild tt and reflux diagnosed, still sometimes tricky but we muddle through (often feeding lying down) underlying all this I've often wondered about the jerky head control he still has which actually has often made feeding hard. from little people commented on his 'good' head control but I felt it made his head overly bobby and jerky at the breast so latch was interrupted and air swallowed. even the consultant who cut his tongue tie (begrudgingly as it was mild) struggled to get him to sit on her lap as he wouldn't 'bend' in the middle. frequently I get 'he's so alert' etc.

I'm still at 6mo feeling like bf is difficult due to positioning etc. he struggles with my flow though better now than when smaller.

I would say fine motor skills etc are good - it all seems to be in the upper back / neck.

I'm an sen teacher so could be suffering from ott sen teacher mummy syndrome but similarly I don't see the other babies being so jerky with their heads.

nights are tough; there's always a issue - wind, burps , reflux. he's always so cross he's been woken. I have the co sleeping cot still on my bed to help get through. it's always then that I worry as when I pick him up (upset or fussing) its like picking up a plank of wood. I.usually feed lying down at night but he kept choking just now so I sat up. as he was nodding off his head/ torso was jerking to try to keep his mouth there.

fine tuning has been suggested by a mate but I feel it's hypertonia.

any thoughts?

tt cut at 14 weeks

I think the other thing is I've spent time with children with cp and other difficulties esp autism through my job so recognise the tightness almost too much. first baby so no point of ref!

other than the jerkiness I feel he's as bright as a button.

Clarella, I hear you, have you considered cranial osteopathy? Have you any fabby OT friends? Sorry you are still having a hard time with feeding.

Clarella I would also recommend some osteopathy or chiropractoric therapies. Worth getting his skeleton checked out first before maybe going down the neuro route.

thanks for responses ! ironically co and chiropractors have been suggested lots including a doctor! so yes think will follow up the recommendations. there's a cranial sacral place near here too. and it could be that the efforts of tt and reflux etc have over developed some muscles too.

I don't feel there's any asd going on, more muscle control things. his older cousin has dyspraxia.

thanks again

Hi clarella, I know that feeling! I knew something was wrong with my dd.well before the doctors. my daughter has hypertonia, but she was 3 months prem and had horrid time respiratory wise, so her cp risk was always high, was there anything specific that happened during or shortly after your baby's birth which makes you think the stiffness is sign of something worrying?

If not, It is more than likely that he is a spirited/difficult/high maintenance baby and his stiffness is his way of communicating.

Its difficult if you have a feeling because you find yourself analysing every movement/situation and comparing to other babies.
I would say go with your gut if you think there might be something wrong, and push to be seen, then hopefully your mind can be put at ease.

So, my daughter was always stiff and DH was worried about it. Pediatrician said not to worry as long as she relaxes during bfing. I don't know if this is backed up by any studies (doubt it), but I have the highest opinion of Ped.
I have/had two horrible sleepers (DC1 and DC3) - read every book about
sleep there is looking for advice and one excellent sleeper. I haven't done anything different in particular, just their character. Of course, reflux can play an important role.
Good luck!

I would get yourself to a surestart centre as a regular visitor. That way you get to see lots of babies the same age as yours, plus meet mothers who have babies same age as yours who you'll get to meet for coffees and playdates, as well as have access to professionals to voice your concerns to.

I had a 'gut' feeling about ds. Turns out it was founded. But dx and intervention was early because I was quite clear in many ways how different he was from his peers and had bounced off loads of things and ideas with the people that saw lots of children at the age of my ds.

Hi, it was very similar for my DS when he was a baby but he was my first, although I had many moments of scratching my head about something Ds did or didn't do I just came to the conclusion that "that's my boy!" As ignorant as it sounds I didn't know anything about ASD until he was 5 and that was because someone slapped me in the face with it!

Go with you gut feelings, if you have experience of these things and you have concerns it wouldn't harm to have someone else take a look. They will either reassure or help. Had I of known what I learned over this past few years when my Ds was a baby I would of been the first to trek to the GP....if anything (granted not as bad as I was last year) I still feel so much guilt that I didn't, and I that let him down because I didn't.

thanks again for your responses. I'm only linking the experience I have with asd to the asd children who have that very strong wiry way about them. it's the stiffness when he's upset and his head/ back control which doesn't look smooth like other babies which made me q slight cp or coordination issues. and yet he's hitting lots of mile stones. he's very strong indeed which could also be that his over used some muscles before others are ready. he definitely gets easily over stimulated at times (slightly worrying head shaking last night!) but I feel this is due his intense nosiness in the world. I've wondered about this 'high need' thing and there could be elements of that.

he was 2 weeks over due and ended up being section as he wasn't coping with the contractions. we had a shock as he was extremely under weight - 5 lb 2 - looked like he'd lost an awful lot of weight in the womb. my placenta was small though v healthy. apgar score was 9 though and they tested his blood oxygen levels which were good.

he relaxes during bf if it's going well but for so long bf was distressing for both of us. that is when I notice the jerking still, when relaxed bf.

I'm going to keep keeping an eye on him . zzzz you make a good point. at least I know a fair bit about what stuff could help etc.

hmm zzz. the stiffening is when he's upset/ cross and the jerking to me seems immature/ poor head control despite wanting to and being able to sit up etc. I will watch carefully though. imo he wants to do stuff before he really can (determined little monkey) and developed 'good' head control due to reflux/ tt / wind issues - lots of arching linked to feeding. but it's perhaps not as good as first appears. but thanks. I don't see it when he's just kicking about and relaxed.

my mum worked with a range of children and adults with disabilities over her career and thinks he's fine and doesn't miss a trick. his father was a handful apparently

he's hugely over tired at mo and sleep is becoming an issue. hourly or 2 hourly wake ups (2 hourly for 3 months due to silent reflux and uti linked to bladder reflux) I've literally just re enacted bedtime bar bath as a second pram ride of the day to enforce a nap was too stimulating! bloody 6 mo growth spurt. still, it worked.

dont apologise. I'm so sorry your lo has epilepsy

I haven't mentioned this until now because I don't think it could possibly point to anything with certainty, but my ds (dx ASD) did the stiff board thing a lot as a baby.

It was almost like he was trying to get away from me, from anyone holding him. In fact I have some of it on video with my DB saying 'I don't think he likes me!'

thanks starlight. it doesn't scare me or worry me and I'm not reading anything into it but yes it's like he's trying to get away from me. Im a specialist teacher of children with asd. on the other hand friends describe their children fighting them/ sleep like that. and he's definitely had lots of silent reflux / pain / wind pain.

TBH, I think all children could benefit from the typical parenting and interventions that children with autism are supposed to receive. Visual clues, reduced language, favourite toys out of reach until they have made some form of communication for them etc etc.

You're familiar with Hanen?

hi yes I was but my baby memory hazy!! is that the lovely mimic stuff relaxed playing on floor etc? not done specifically but my colleague good at it if I'm right. I've tended to have very verbally able classes with sensory / social needs.

noticed that very tight wraps/ slings helping lots at mo with the stiff planking (always fought in past - reminding me of weighted blankets!) plus seeing chiropractor today. I'm certain there's no asd there; hes too delighted by people and is trying so hard to communicate things to me but his coordination and muscle control is still out of sync at mo. head is a little to one side so think a chiropractor will be good. probably us carrying him for hours on left shoulder when he had reflux/ wind issues.

Hi Clarella

I know it has been almost 10 years since this thread but my son is very similar to how you explained your son. He is 3 months - very sociable, smiling etc. But he goes very stiff when crying and occasionally when he is excited. I am hoping it is just his way of communicating at this time.

How is your son doing now?

@Clarella @Ljordan13 how are your little ones now? Realise this is a zombie thread but interesting to see the outcome now? 🙂

Hi @justmewithmylifetoday

My son is now 10 months and the stiffness completely resolved by the time he was about 5/6 months. I think that was just his only way to show he was really upset in those early months!

@Ljordan13 that's good to hear! Thanks for replying ☺️