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6 month old stiff arm flexed(41 Posts)
Sorry, bit of a re-post for higher traffic.
Just to start I have just been to the GP with this, but it's left me with more questions. She said she wanted to talk to a paediatrician and would get back to me in a week, would say no more.
My daughter was born at 36 weeks and soonish after discharge we noticed her right eye looked smaller and her right arm seemed to be curled/ have less movement. Didn't think too much of it as we were distracted by an admission for jaundice and generally being shell-shocked by the early birth, it seemed to improve hugely with time too. Her eyes look the same now, and she can grab with both arms, I think we may have got used to the fact she doesn't stretch her arm. My friend though has started watching her 2 days a week and we were discussing how she can't roll yet, seems a tad floppy, barely lifts her head when she's on her front and she asked if her arm had always been stiff in her right arm. It reminded me and I realised she cannot lift her arm above her should at all, when pulled up it's too tight to raise and when extended outwards it's possible to extend her arm but there's a lot more resistance than in the other arm which moves freely. It doesn't seem to be painful, though she did cry when the GP tried to raise it a little more forcefully that I'll push it (still remained bent at the elbow with the upper arm flat to the body. When she flaps her arms in excitement she hots her side with this arm. It's occurred to me it's the reason it's so hard to get a jacket on her, I thought she just disliked being handled that way. The only other thing I can think to mention is she smiled first left side only, grabbed with her left first etc but it always corrected in a few days so we didn't worry, she's not our first and babies have all sorts of quirks like the rolling eyes when sleepy that worry you at the time but then correct.
I know the GP will get back but in the meantime can I ask if anyone has had a similar experience or knowledge on this? I was expecting to be told to go away and keep an eye on it to be honest, now I'm wonder WHY it's a corcen.
Could she have had a one sided brain bleed in utero? Perhaps this happened and now her brain is compensating?
Sounds almost like a stroke. Given her age and recovery so far I assume she would recover fully.
Just an idea. I know brain bleeds are common in premature babies but she was not terribly premature.
I hope you get answers soon to put your mind at rest.
thank you for a response, any response is so welcome! I'm not a worrier as such but am craving dialogue!
My sister had a stroke after birth (28 weeker) and has stiffness on one side, though she plays football for a large team etc and the only issue really has been school PE (can't forward roll, walk on benches etc but who does that in adult life?) She required a lot of physio/ splints as a young child and dd is certainly not as extreme.
I was wondering about some form of brain injury, but dh swears no and thinks it's physical. She can though use it well, I'd describe it almost like muscle confusion. It's not like a funny joint, if relaxed you can almost get it up and straight moving it out and round but the muscles won't unclench if pulled directly up. Also if held sitting of upright as I carry it's out and back straight. Tummy time is a no-go as on her front it goes back when the other supports her so she struggles to raise her head at all. She can though use it to get things to her mouth and reaches equally.
I know it'll be fine whatever it is whether it goes or stays, she's not severely affected and she'll be well supported by us.
Google has not been my friend as cerebal palsy is the only suggestion, or rather loads of parents on forums asking about it.
The pregnancy was absolutely perfect btw, waters for no reason went at 35+6 and I was induced due to group B strep. Ridiculous induction without listening to me about my body resulting in a 24 min birth from zero to out.
Just a bump incase anyone has had similar experiences. My mum commented today on how jerky and uncontrolled her movement is vut I think it's within the normal.
I would be getting a referral to your community paediatrician and an urgent referral in for physio as soon as possible.
It sounds very cp like (combined with the movement patterns) but also there is the possibility of a slight dislocation or trapped nerve, or something like one of the palsies that can have that sort of a one sided effect (like Bells, but not bells, iyswim).
And in either case, with physio, she sounds as though she is doing so well that it will be an easy fix. She's certainly managing very well!
Did she have shoulder dystocia at all? Unlikely in such a tiny, but worth asking?
(My dd does have cerebral palsy btw. It is indeed entirely possible that this is what you are looking at - although obviously very mild. Your dd's muscle patterns sound very similar to mine - but in our case hers weren't functional movements at 6 mos, it was waaaaaaay later. Still could be cp though. It was definitely the first thing that popped into my head when I read your op, and I have had a baby with cp due to birth hypoxia. )
How is her right leg?
I ask because you mention the smile and the eye
My niece has paralysis on one side due to stroke after birth, and so does a friend's daughter. Very different now as niece can use hand and leg, but friend's dd can't
Hope you get referred and checked
Either way, paed, physio, and probably neuro referral if there seems to be no physical explanation. Neuros are far more knowledgeable than your average paed. It took us three years and two MRIs before we actually spoke to the neuro, mind. we already knew what we were dealing with, so it was more a case of getting the expert view on what it meant in real terms.
(And in real terms, dd2 skis black runs and has an iq of 142, so cp isn't necessarily something that you should be afraid of - it is interesting that you aren't considering it, given your sister's history, though. Are you not seeing the links between muscle tone/ tremors/ movement? Especially given that your mum can see the similarities?)
Oh I'm so glad to have replies, its a mightmare worrying alone.
Her right leg is fine. Her development is:
Strong startle reflex still, don't think ds had this by now?
Difficult to feed due to every time she is excited her arm movements are wild, I thing she goes for the spoon but trying to get it in without going flying is difficult. She can though reach for thinks and play with hanging toys when calm in a controlled way. If it's in her hand and free she flings it out after a few seconds
She has strength but no balance wih sitting and can not easily lift her head on front
Her right arm does have a full range of movement but the muscles resist. If you're slow and careful amd work with her it can go in any position.
Legs are the same, nothing to note, supported her weight on them early and likes to kick them over and under each other
Head control is a bit floppy, held sitting it's still forward and can't lift straight for more than a few seconds
When excited she has stiff flapping arms which she hits her side with.
That's all I can think of.
I wouldn't say she has tremors ( if I know what you mean correctly). They are huge uncontrolled movement, though I have always noted her back arching and arm waving in a cradle hold and avoided it presuming reflux.
The only thing to note at birth was it was fast, twenty four min and one push. Awful induction too much followed by pph so I don't remember it all after. I rememeber though she came out quick and easily, no tears even.
I wondered stroke after my sister, but it seems different in some ways. My sister was rigid all down one side but no other issues, she didn't resist you and pull back against your force but was just very tight.
I just didn't know what to think, the gp shut down a bit. Before it I wasn't worried too much. I'm not a worrier and it sounds silly but I'd just been used to dd and unconsciously adapted. For example I gave up on jackets and she hated getting them on, now it seems obvious it was hard because her arm was bent.
I don't mind in a way what it is, she's still my dd and perffect and we'll cope. Its not knowing that's hard. Gp should be back to me on tues
I apologise for the typing, its hard on this phone.
One thing I forgot, today I noticed that if she topples she puts one arm out to safe herself but not the other.
My sister unbelievably only found out about her stroke in her twenties when a gp mentioned it offhandedly. She had always just thought she was crap at sport with a stiff ankle.
They used 'tremors' to describe dd2's movement, but I wouldn't have described them as such - I would have described them in the same way you did earlier (I think) - sort of juddery, uncontrolled, bit like she was cross. She had an 'intention tremor' which would kick in with purposeful movement.
We did tons of physio with her (she was discharged from hospital with full therapy team) and at first would use her legs instead of her arms - so would kick a toy in front of her instead of reaching for it (I'm thinking later, when she was supported in a sitting position). If you put a toy on her weaker side, eventually she would reach all the way to over to get it with her other hand. she was very funny. We used to hold the stronger hand and she would have to do things (or try) with the weaker one.
We could move dd2's arms in any direction when she was completely relaxed. If she tried to do it herself, her tone was all over the place. She had repetitive movements where she tried over and over to do the same thing, and a movement that we assumed was her trying to rub her ear/ face (you have no idea how many times we all -including gps- peered into her ear to make sure she didn't have an infection. It turned out to be a movement pattern linked to athetosis (again, she didn't have any of the writhing patterns normally associated with athetoid cp, but she did have very subtle toe/ finger/ facial movements). She was originally diagnosed with spastic quad cp (but they called it 'developmental delay' for two years) then athetoid cp, not spastic, at 4.
I suspect the gp has clammed up because he thinks it's neurological, but doesn't have the expertise or the ability to make that call. Hopefully he will have referred you straight to paed.
Even if it doesn't turn out to be neurological, she needs a good amount of paediatric physio to ensure this is correctly supported as soon as possible.
I have a friend who found out he only had one kidney at 40.
Often the 'cause' isn't anywhere as important as whether they are are actually supporting the issue. So your sister was on the radar, getting physio, splints etc, but had never had an MRI to detect cause. The 'treatment' would have been the same in any case iykwim... It can be helpful, but in a lot of cases, the investigations don't change how the disability or weakness is being managed.
Thank you, I've been mulling this over. I see similarities, dd rubs her eyes a lot in a way you describe. Hopefully the GP will get back to me tomorrow as it'll have been a week,
I was thinking about birth again and as I said it was quick. But thinking it was VERY quick and sudden, 24 min from 5cm to birth and and unrelenting HUGE contractions together. I had been ok until then, I remember asking for them not to touch the drip a few times (induction due to PROM and group b strep) but they kept saying it was procedure to turn it up after certain amounts of time. I could feel it was going strongly but I was standing, chatting and relaxed and managing very well and they didn't seem to believe me it was intense/ progressing (she's not my first, I knew it was progressing very well). I was always suspicious the doctor still ordered it to go up as soon after these nagging chats they kept having it went from near zero to unmanagable in a minute or two. I was literally paralysed with pain and one push and a pph followed.
The point of that waffle, I'm wondering if the speed of it would be more than a baby/ placenta could cope with? Could she get oxygen inbetween? I don't remember this stage or what was said due to pain and it was so fast dh didn't get to the hospital. I'd send him home to rest as I presumed an induction would take ages. She had a high score but came out bright blue in the face and had oxygen, they said her face was 'congested'. She was in my arms quite quickly but then again back as I had a pph and was out of it for a while.
She fed straight away after birth but the next day she stopped feeding. We were discharged with syringes to feed her (which I thought was disgusting, she clearly was not feeding yet as she had already fed no checks were made despite repeated asking and the fact she was noted as being very dry mouthed/ faced on her newborn check the next day) as she stopped breastfeeding and struggled for the next week or so and was re-admitted on day 5 for jaundice. In hospital in that time she didn't take the bottles they tried and stayed a few days longer after dehydration issues, funnily she was better at bf than bottles in the end (my boobs are like feeding off a garden hose I reckon with over-supply...)
The thing that interested me the most from your posts was 'intention tremors', this strikes a chord the most. When she is excited or intent her arms move wildly up and down and across, when trying to grab the spoon it is nigh impossible to feed her. At first I'd stop trying as I though she didn't want the food but then I realised it was frustration crying/ unintentional turning her face away and when she calms a bit she eats a lot.
For an objective opinion I asked my friend today who's looked after her a few days if she'd noticed anything about her and she straight away said 'oh her arm? It doesn't unbend does it' so it's reasonably noticeable. She then tactfully mentioned she doesn't think she's ready for tummy time still.
I'm a bit pissed off now, chased gp twice. I could hear in background but she got receptionist to say she's spoken to the consultant and they'd agreed that a referral is needed. I will get a letter.
I wanted to know WHY and to exactly WHO the referral is. Starting to feel she's avoiding dialogue. I even said to the receptionist I had additional concerns since the appointment to share.
I suspect that she doesn't want to commit to anything until the consultant has had a look, because the implications of getting it wrong are big for both you and her.
While you have those concerns, write them down so you don't forget, and take them to the consultant.
It may be a standard paed consultant, or a neurological one, but they're going to be the best one to tell any concerns to, I doubt the GP has enough knowledge to give a definite answer. I know how you feel though, if my Gp starts looking thoughtful and avoiding answers, I want to know the worst they're thinking so I can prepare myself.
Hope the letter comes soon and the appointment is quickly.
We were under consultant paed for two years before official dx. These things can take a looooong time. Especially with tinies, as often they do not want to give a definitive dx because of the potential for development to improve presentation over time.
I suspect this initial referral is just to community paed, who will then refer on for physio, neuro if necessary, etc.
Unfortunately, there are waiting lists for everyone, so it is unlikely to be fast at any stage. Once you have a contact number for the paed you have been referred to, you can call the secretary and tell them you are prepared to take a cancellation appointment if one comes up.
Nothing is going to be fast, I'm sorry. Months is usual for these sort of waiting lists. But she should be able to tell you who she is referring on to - even the secretary should be able to do that.
Fingers crossed for speedy appointment so that you can start the ball rolling.
Has the gp referred for physio anyway? It would be my absolute top priority, whatever the cause, tbh. Even before the paed appt, as it is so obvious that there is a motor issue, whether it is physical or neuro based.
And I say this because paediatric physios have a really long waiting list as well - you really need to be on it...
Did she have antibiotics for the Strep B at birth? Because it could be a late side-effect of the strep. See here- strep B bone and joint infections
Well, I thought I'd ask the hv today how things might work about physio rather than bother the gp again before the letter. But she's assured me there is no need for all this as dd is fine.
I said to her I was concerned 6.5 month dd couldn't (quoting):
roll either way
lift her head on her front, she just gets upset with her face flat on the surface over her mouth/ nose
seem to reach for things with purpose
seemed wonky in movement...
cut short here and told dd could sit with support as she was doing so there and then. I was reclined in chair, dd was facing forward reclined against my belly, head between my boobs. Is this unsupported? Even tinies do this? She would also sit if I had her firmly under each armpit weigt bearing for her, slightly curled forward. I thought this meant lighter support, eg just at hips or propped with pillows? Also she said dd could move arms fine looking at her (well they aren't paralyesed, just wave around mainly). She said many don't reach as this stage. As she's so alert she said she's fine and can't be delayed.
her advice is:
-wait until dd is nine months, if she can't sit then it's a problem
-dd's development is very normal, this is a 'funny age' where the range is very big
-not to worry about seeing gp
wrote is red book:
'mum concerned ie not rolling, head lifting. baby content and fully breast fed. mum reassured re concerns'
Sometimes I feel there's this huge huge gap between mumsnet advice and any real life advice I get.
Well, you know, she still could be absolutely fine. But the fact that people that know her well notice the movement issues, and the gp is concerned enough to do a referral, possibly means the hv doesn't have enough knowledge to recognise where physio might be useful.
An ordinary hv will just have a check list. They are more concerned with weight and growth, and are out of their comfort zone with neuro or developmental issues. They are not trained, and only supposed to pass the buck. Their main role is to reassure mothers.
Even a specialist would demur at this point, because developmental delays are tricksy beasts. You just don't know whether a child will have a developmental leap and movement will normalize, or whatever.
That isn't a reason not to investigate and to withhold potentially invaluable support though.
Let the referral take place and see what happens next. There will doubtless be a whole heap of watching and waiting for the next wee while. It's what paed's are great at
If it makes you fell better, I once took dd2 to the doc to see if she should have the flu shot, and it was a locum. So I started off and said 'well, with her having cerebral palsy, and having had so many respiratory issues, I was wondering if she should have/ or would be eligible for the flu shot?' And the locum said (I shit you not) 'what makes you think she has cerebral palsy?'
I couldn't decide whether to be hysterical or livid, but managed a terse 'well, the five weeks in special care on oxygen, the four years, of physio, speech and language therapy and occupational therapy, and portage, the two brain MRIs, the high rate care and mobility DLA award, the walking frame, the house full of physio equipment, and the diagnosis from the consultant neurologist...'
She did apologise. I would have thought the big flashing red box on the co outer screen on her record to warn stupid gps would have been a big clue, but apparently she hadn't noticed it...
prissy-we may share gps. I went at 32 weeks for a flu shot and was told 'this is only for people who are ill, old or pregnant'. Though I was secretly flattered she didn't notice! I was size 8-10 at 8 months when I gave birth, she was rather obliging
unlike ds who made me put on 5 stone
I've been leaning towards she's fine, after only a week of exercising it deliberately the arm has really unstiffened nicely. She even pushed up on her front for the first time! DH though burst my bubble by pointing out she pushes up on one forearm and one straight arm as is also attempting to sit with on leg bent and one straight. She got both hand in her mouth....but to get one hand in she turns her head. She's starting to weight bear on her
legs leg. It' s mad, the more you look the more you notice, 'tis where madness lays.
Well at least I know for sure one thing, by the time the appointment comes through it'll all be different in one way or another.
I remember the watch and wait with ds1, he coughed for the first 3 years of his life. To the point where we got no sleep, as a baby it shook him most the night. We waited until it outgrew it after 6 monthly appointments to check if it had stopped. To be fair it worked.
docs & HV are very likely to tell you to watch & wait, go back & ask to be refered as waiting lists are long.
DS2 has spastic diplegia with low muscle tone in the upper body, he was born at 28 wks & suffered brain damage.
His spasticity is worse on movement & gets stiff if excited.
We always manage to get the best relaxation & stretches by massaging in the bath or swimming pool.
There are lots of things you can do while waiting to see the paed or physio & it will do no harm at all if all is well
We had to teach ds2 how to put his hands out to save himself as the reflex did not naturally develop.
Same with rolling over.
Lots of lying him on a towel & tipping & rolling him
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