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.
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Children's health
6 month old stiff arm flexed
childcarehell · 05/06/2013 21:12
(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. 
)
Or hemiplegia.
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?)
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.
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
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