I'm a bit shell shocked and am hoping someone here has been through something similar to help me?
My daughter was a prem and we have battled her whole little 18 months of life. She isn't walking and has never really rolled. Not pulling up on things and never crawled (but bum shuffles!!)
I went to a developmental paed to see what was going on
He has said there is a chance she has cerebral palsy
She shows no other signs.. And I'm totally confused.
We are starting physio this week so at least we have a plan.
Anyone give me any advice?
I haven't told anyone yet., too scared too!
Thanks heaps you lovely hubbers!!!
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27-07-2014 21:32 #1
Late development or more serious?
27-07-2014 21:35 #2
I have no experience or advice, just
Loads of hugs xox
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27-07-2014 22:35 #3
I don't have a prem. .. But my DD has a syndrome that causes delays plus she has had surgeries that can delay her development too.
Has your LO had surgeries? Plus extended time in hospital can delay development.
No real advice. .. I have a few friends who have premmies. .. Through my network and they have all developed at different stages.
Can your paediatrician send for more testing? MRI scans etc?
It's very scary being told news like that. It's a lot to process. I haven't had the same journey but here if you need to chat. .. Hopefully someone else can chime in with some advice. xo
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28-07-2014 09:11 #4
No surgeries and only time in hospital was when she was born.
We haven't had any testing yet , but will be sent for an MRI if the physio or paed needs us to.
They don't diagnose till 2.5, so I guess it's a year of watching her?
Thanks.. And if anyone else can help that would be great!!
28-07-2014 10:13 #5
How prem was she?
I know it doesn't help considering she is now 18 months, but for DD (25 weeks) she was followed monthly by physio until she was one year corrected to keep an eye out for development and CP. Did she have at least developmental appts at 6 months, 12 months etc?
Physio sounds like a great starting point, but don't accept just waiting for 12 months, even if they can't formally diagnose they can say that "she has signs of.." and recommend exercises to help.
My DD was only just starting to walk at 18 months, and I know of a perfect little toddler who never traditionally crawled and just bum shuffled... however the not rolling over and not pulling herself up would be points of concern for me.
There are other mums on ex-NICU or premmie facebook groups that have been in your position and received early possible CP diagnoses, maybe you could get in touch with some of them? I'm only a member of a WA one so if you're based elsewhere can't recommend a specific group, sorry.
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28-07-2014 10:32 #6
Hiya Hun my little girl was born 3 months early. She was late to do everything in her milestones.
We were told at 12 months corrected that there was a possibility she had diplegic cp, but no one wanted to formally diagnose because there are other syndromes out there that could cause her delays/symptoms.
I'd be pushing for an MRI, also for regular early intervention such as physio etc. Did the developmental paed say anything about hypotonia/hypertonic muscles? Spasticity in joints? Or clonus or anything about reflexes? They are some signs they can't just say oh she's delayed she must have cp. They need to give you a valid reason why they think cp... Especially if they won't formally diagnose.
My DD has diplegic cerebral palsy. She can walk, but rather awkwardly and started walking extremely late, even for a premature baby. She got her first set of hinged ankle foot orthotics (AFOs) in November last year. They made a huge difference to the quality of her walking. She is also listed for another MRI and they will be doing Botox injections at the same time under a general anaesthetic to improve her range of movement in her ankles making it easier for her to walk.
They have only recently diagnosed her this month at 2y8m old. They were reluctant to do so before hand and she needed to see specialists etc for the diagnosis, not just a developmental paed.
If you'd like anymore info please feel free to ask whether over pm or in this thread xx
Last edited by LysnDan; 28-07-2014 at 10:35.
28-07-2014 12:10 #7
Sorry that you are going through this. Must be difficult not knowing what or if anything is even wrong.
Just from another perspective an old friend of mine had a son 8 weeks prem who's the same age as my eldest. DD1 hit all her milestones yet he didn't. She would have play dates with us to try encourage her son to crawl or skip that and just walk. At 18months he started crawling and 2 years walking. He was also slow to talk but now he's a happy, healthy 7 year old with no problems or delays at all. Hope this is the case for you guys xx
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28-07-2014 13:02 #8
Hi I do not have a prem well she is not classed as prem. She was born @ 37+1 but had stopped growing when I was pregnant with her which is IGUR.
She is now 2yrs her speech is delayed, she has failure to thrive, hypotonia & her head has stopped growing.
She is showing all the signs of cerbal palsy so we just investigating each problem until we find out what is exactly wrong with her.
It's really hard not to stress while waiting for more news or results.
28-07-2014 13:11 #9
Prem or not, it's difficult to say the least to have a diagnosis pending or queried.
I know how you feel.
Anyone going thru the same needing to talk- feel free to PM me. Things are a bit clearer after a diagnosis is made. Everything seems so hazy until then xx
29-07-2014 18:56 #10
It's nice to know that there are others who understand ( unfortunately really)
I'll let you know how physio goes on Friday.. Hoping she's less blunt than the dr!!
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