its me again about dd 20weeks

[trace2]

i know what you all thinking when i ask this question but i just know shes not right!,
those who as read aboit dd posturing and episodes, i know finding she getting really stressed when she can not reach out for toys wi her hands, i know its early but shes bright as a button, but shes floppy really for her age, and yes shes still learning but some thing stelling me shes not right.

[trace2]

maybe am just looking at every thing cos i have no idea whats wrong

[wrinklytum]

Hi Trace,have you seen your hv/gp?

If you are worried I would ask them if you can get her referred.Bear in mind that all babies develop differently,so she may just be a little later in developing motor skills.xxxx

hth.good luck

[trace2]

yes was there yesterday but she just said as her pead neuro when we go. i just have a feeling thats all

[needmorecoffee]

I think somethingis up. Whendo you see your paed?

[wrinklytum]

She has a paed referral?Sorry,I hope my last post did not sound dismissive,it was not meant to.I hope you get some answers soon.xxx

[mymatemax]

Hi trace
your posts always sound like a loving mum trying to get some answers & do the best for her dd.
You are the expert on your dd & if you feel she isn't developing as she should then insist on a referal from your GP.
Just being unwell & spending time in hospital can be enough to cause slight delays, but there is no harm done by having some formal assessments by a paed physio, OT & developmental paed. The physio & OT can also help advise you on handling your dd while she is posturing etc.
Don't let them fob you off with wait & see or she is too young etc, my ds2 had a physio from birth & the support & knowledge they offered was so helpful.

[trace2]

16th nov, i have got a fear really shes just not grasping or reaching i can not explain but i can see how hard she wants to move her hand, even when i hold my arms out for her i know she wants to hold out for us but carnt. am i making sence?

[trace2]

wrinklytum dont worry thank you!

mymatemax thank you yes i realy need to find out, we could cope then i think, and yes i would like to know how to cope when dd is posturing for so long, and what we could do to help her.

needmorecoffee you always come and help me again thank you

[needmorecoffee]

I wish I could come with you. A 20 week old not showing any signs of reaching is unusual but not unheard of. But any delays should always be checked out and with the posturing and possible seizures I just can't undertsnad why the docs are being so useless.
Can she hold up her head (when not posturing)? Is she turning to watch you? Smile? Laugh?
Is she floppy at all or over-stiff?
You must be frantic up againt the NHS brick wall.

[wrinklytum]

Yes you are making sense.:0You are her mum and know her better than anyone.I hope that you get some answers from the neurologist.FWIW as MMM says if there is a problem the physios are fab.My dd has a global delay and is under a local childrens centre and they are fantastic.It must be so worrying for you.I think the waiting for appointments is the worst time as your brain is in a million different places with worry, and at least if there is a problem once you see the therapists (if needed) you can take some positive action in doing exercises and so on.Hope your little one will be just fine.Hugs if you do them xx

[trace2]

just started to hold her head a little but still flops yes shes smiling ,
laughing, but yes shes flopy can not bear any weight on her feet or try to but layed down she moves her legs ok ifn fact goes mad like they doing it on there own, she follows me with her head a little but flops to righ, its like her heads to big for her neck to hold, but its not

[mymatemax]

trace
her head control sounds very much like my ds2 at around 9-12 mths ? & physio advised on simple exercises to help. Also once the head control had improved he was able to start to learn how to reach for things.

[mm22bys]

Hi Trace2,

can you insist on a referral to your Child Development Team? We took our concerns to HV in mid June / early July but couldn't have DS2 assessed till September, so every day he was / is getting further behind. He will be one in less than 3 weeks and only has really started reaching in the last three or so weeks so very behind.

It seems support for yor DD (and my DS) is sadly lacking, is it because they don't have a definite dx?

It is so tough, and thinking of you,

[Nat1H]

Does she put her feet down when you hold her upright?? I didn't notice this with DS2 (denial I think), but this is a dead giveaway for a child with CP. If you are so worried, I would contact the Paed's secretary, explain how distressed you are, and ask if there's any possibility of seeing the Paed earlier. If not, you will have to sit tight until your appointment. I know it feels like a lifetime, but if there is something wrong, things will start to move when you have seen the Paed. You just have to try not to clam up (like I do, unless I'm annoyed!!) and to stress how worried you are.
Good luck
Sending {{hugs}} for you and your LO

[needmorecoffee]

Whats happens with the feet Nat? Just went and held dd upright to see. Her legs and feet go stiff and scissor and she can't take her weight.
She's 3 with severe quad CP

[Nat1H]

My DS2 used to lift them up (like a frog) - wouldn't weight bear. Do her legs scissor and sort of clamp around each other? DS2 do this when he's on the toilet!!

[needmorecoffee]

yeah they do. And stiff as a board. But then she has dystonic/spastic CP.
Sorry Trace, bit of a hijack there.
Meant to ask, when she isn't posturingcan she reach our or does that trigger it?

[trace2]

nmc. dont worry its help us all. and i have no idea whats sets her postures off all i know is when she does all she wants is to sleep through it all even if it lasts 8 hours.

Nat1H she wont bare any weight on her legs but can i ask what you mean about scissor? cos now and again she goes stiff but gets really ratty with it!

[twocutedarlings]

Trace, im sure you are probably already aware of this, but there is a fantastic child development clinic in sheffield, called the Rygate childrens centre.

This is there website,

www.sheffieldchildrens.nhs.uk/about/1-4-6.php

Sorry i dont know how to do links.

I really hope you get some answers soon trace, you must be going through hell

[Nat1H]

scissoring is when one leg goes in front of another. Depending on the muscle tone, they can end up completely entwined with each other (a bit like when you cross your fingers)
Hope this helps

[needmorecoffee]

And a bugger to untangle as the muscles go so stiff. You should see us trying to get dd into her standing frame, holding her torso and head while the other person untangles and positions her legs and feet.
Then 5 seconds later gravity does its thing and she fills her nappy.

[trace2]

twocutedarlings yes thank you thats where we see her neuro dr ritty, but that all we do there.