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Am so down about CP even though diagnosis not def yet

8 replies

Sleepstarved · 29/12/2011 13:34

My DD is 10 mo, sitting well, not crawling, will pull to standing with our fingers but not on furniture, was late rolling on to front but early front on to back.
Anyway at 6mo we were told she has mild CP affecting her arms only which is a bit odd. She held arms up in high guard but that has improved as she is stronger sitting.
She favours right hand but will play with both, just getting pincer grip, eats well with spoon but mostly from right hand.
I asked for second opinion which we are waiting for and the referral said query CP or hypermobility.
She is having weekly physio and will be assessed for portage soon too.
I am swinging between there is nothing wrong other than she is a bit late in her motor skills, to thinking its hypermobility as my mother, my sister and I all have it but not formally diagnosed as never a problem for us, and then I think it is CP.
She is improving with physio but it is so slow.
Am on such a downer at the moment, the sight of other 'normal' children makes me cry.
I got angry last night because DD woke up at 4am - she has never slept later than 5.30 and often wakes twice a night.
DH and I are both so tired and so down about it.

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MrsShrekTheThird · 29/12/2011 13:48

it sounds so awful waiting. I don't know how much help it is but I'm listening....
I might have a bit of a clue, tho not the situation you are in - dd tried to pull herself to stand at 9mo, took til 16mo before she could actually stand or start to walk and then fell over every time she took a step. She's hypermobile, with flat feet and intoeing, a fab combo which means she falls over a lot although none of the issues are particularly serious individually iyswim. She wears Piedro boots - well she's just moved to some (not piedro) with even more support and higher up her leg - but hey they're pink Grin and now she can run (she's now 6 btw)
Weekly physio sounds brilliant, whichever dx it is you really will get through it and your dd will be a delight, regardles of what her ability is just now. There are many years in front of her to build up strength, muscle control and fine motor skills, I promise you. I know what you mean about losing sight of the 'norm' - but believe me I now don't think there actually is one, all of our children do things at different rates and different times. When I'm on a downer about dd's lack of mobility, I get on here... and look at the photos and see just how far she has come.
If she's achieved this much in so short a space of time, imagine what the progress will be. Good luck and I hope someone who knows a bit more turns up too.

Sleepstarved · 29/12/2011 13:59

Thanks Shrek,
DD has been standing well with support from 5 months which I thought meant hypermobility was less likely but it is good in a way to hear that this does not rule it out. I hope it is hypermobility and not CP, I just can't bare the thought of brain damage.
It is so hard not knowing. I analyse everything she does or doesn't do as a sign of something or other.
Her main symptom I guess is that she is weak, you can feel it when you pick her up - she doesn't have that dense, solid feeling you get from 'normal babies'.
I just want to know what it is, so I can start to move on.
I am stuck at the 'its not fair' stage.

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MedusaIsHavingABadHairDay · 29/12/2011 16:37

If she is sitting now..she is doing very well and if she has CP it will more than likely be very mild indeed (in the 'uncoordinated' rather than 'disabled by it' scheme of things)

My son didn't sit til he was one, or crawl til he was 18m ..walking took another year... but he just is uncoordinated looking now. He wears splints..but you wouldn't know... :)

But I know how hard it is at the beginning when it's all 'wait and see' Having physio now is the best start as she is 'in the system' tho..:)

Hang in there..

survivingwinter · 29/12/2011 17:46

I'm sorry sleepstarved - it is a frightening and stressful place to be in Sad

Medusa is spot on - it is very likely to be mild and you never know, these initial signs could be 'outgrown' in the longer term. She really is doing well by the sounds of things but I do know how hard it is when comparing with peers (I still want to shut my mind off from the hurt when we do things with other children)

I have a dd with CP at the very mild end of the spectrum - she can run, jump, climb but the coordination and strength required to do these things is that bit harder for her. As Medusa says, it doesn't always have to be disabling even if it does turn out to be CP.

MABS · 29/12/2011 18:10

agree Medusa, does sound mild. DS has hemiplegic mild CP sounds similar to your dd. Fabulous new book out last week i bought, totally about hemiplegia.

lisad123 · 29/12/2011 23:44

We did consider cp for dd1, she didn't sit till 10 months, never crawled but shuffled on her bum. She didnt want till after her 2 nd birthday!! She doesn't have cp, but does have tight tendons which cause her pain. Weirdly enough she has the stretchy skin that comes with EDS hypomobilty Confused her sister has hypomobilty to the extent she has the wear supportive boots. Both girls have autism.
My sisters 2 children have cp, and are mildly effected, and both go to mainstream, can walk and are doing so well.
Hth

amberlight · 30/12/2011 09:49

Two of my friends have CP, one severely. They're happily married with a place of their own and have more fun in life than I do, I reckon. Whatever the future holds, it could be a very good one for your dd. But it doesn't stop us worrying ourselves silly before we know what's what, that's for sure...
Brew?

Sleepstarved · 30/12/2011 10:31

Thank you everyone.
Physio is really not convinced it is CP but doesn't know what it is. DD enjoys rough and tumble, being thrown around ect and physio did a test with her sitting and then lying on her front on a fit ball, wobbling her around and she didn't get upset and would play like that which made physio say again its not a nerve problem or she'd get upset by it. Something about not being gravitationally insecure.
She is very cautious though and won't reach very far to her side for a toy but is now propping on her hands. If its too far her she props with hands but then can't get back to sitting to flops down onto her belly.
Other babies just climb all over her, take her toys ect and she just lets them - its heartbreaking.
I can't stand the not knowing and the waiting, waating, waiting for someone else to see her.
In the back of my mind I am scared that it is something more treatable and we have wasted all this time.

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