Feeling sad.

[Galena]

Sorry if this is long - I need to offload!

DD, who is now 2, was born at 27 weeks and had a relatively straightforward journey through special care - off oxygen within hours of birth, off all breathing support by 3 weeks old, home at 9 weeks (Still only 36 weeks gestation). She then went from strength to strength.

She's had a number of readmissions with breathing problems caused by colds, and has been diagnosed with asthma.

However, the big issue is that she is still not walking. She started seeing a physio before Christmas who reassured us each time we saw her that it was simply that her hips and ankles were too flexible and as her muscles built up they would stabilise. Then, a few weeks ago, she said it is probably Cerebral Palsy (diplegia). She cannot give a diagnosis so we have an appointment with the community paediatrician on June 7th. However, I'm assuming that, as this physio is incredibly experienced, if she says it probably is, then it probably is!

Having googled, and looked at my pregnancy notes, it does seem to add up - there were queries about chorioamnionitis when I went into premature labour and this is a risk factor for CP.

I'd like to think I'm coping with this but sometimes I have real down days - She's fought so hard and come so far, it seems so unfair she's got another mountain to climb - and one that'll never go away. Right now I could cry. :(

Sorry for such a self-indulgent post. I just needed to tell someone who would understand! You don't need to reply - I just feel crap!

Hiya both my dds were prem the youngest being 21 months and I have ongoing issues with both of them. I'm very down hearted about dd2 but I go on the Bliss forum/website a lot which is just for Prems which is very good and I've found very useful. Hope you're ok, little babies are such fighters as I think once the NICU days are over we sought of think that's it and are worries are over. Best of luck for your appointment but can I just say that a mum I know from Bliss her boy has only just started walking he is over 2 and he doesn't have CP! So theres hope xx

I know her and him well - I used to be on the Bliss site a lot, and have quite a few of the mums on my FaceBook! I just seem not to have much time these days for that forum too. Thanks for the message though :) Hope your two are ok (Maybe I know you too? If your youngest is 21 months, I would still have been very active on there at that point...) :) I have the same posting name there.

Lol we are probably Facebook friends! My dds shortened name is Rox. I don't have much time at the moment either with appointments weekly. I've found mumsnet an immense wealth of knowledge about unusual things that have cropped about that I know nothing about! We had CP concerns when dd still wasn't rolling over at 9 months old, she still struggles to roll now. I was very frightened then but as I had worked with kids with CP I had seen what a very full and active life they can lead. I will keep my fingers crossed for you and hope for the best. Your dd is still young so hopefully with some good support now she will do just fine. My dd has a friend at the CDC who has diplegia and hes adorable he's almost 3 and now walks well with inserts in his boots. Chin up mate. Xx

Hi there. Unfortunately spastic diplegia is often associated with prematurity and is sometimes a shitty surprise when so many babies have fought through PICU and come home thinking all was well. It sucks. It is often associated with PVL which shows on an MRI scan. The fact that her hips and ankles are very flexible doesnt go with a diagnosis of SD as this is usually characterised by stiffness of the lower limbs.

Don't panic though, it is still early and lots can be achieved with early intervention. The degree DD is affected can range from so mild it is barely noticeable to severe. I can't make a guess as there is not enough info but you are on the road to a diagnosis and once you know where you are going there is always loads of help. Also SKITHUK and Scope offer lots of advice.

please know there are so many different levels of CP. Both my neiece and nephew have CP.
DN is in a mainstream secondary and Im sure he is going to be something amazing in life, he is so clever and other than his walking you would have no clue at all.
His sister is a little charmer and while she has difficulties she still has speech and able to take on most of her self care skills.
Early intervention is so important but please give yourself time.

Thanks all.

sneezecake 'a shitty surprise when so many babies have fought through PICU and come home thinking all was well. It sucks.' Absolutely! This is exactly how it feels right now. Thanks for the advice sites too.

And Lisa I know there are different levels, and for DD to have got to 2yo before the possibility raised its head, I guess it'll turn out to be pretty mild if it is. I think DD will end up like your DNephew if she carries on as she is at the moment - Various health professionals and other people keep telling me how bright she is... To me, she's just DD!

Still feeling sad for her but I'll get through it. I just want to know one way or the other now.

Galena. You have hit the nail on the head at the outset. Everyone wants to know the outcome, it is absolutely killing looking for signs, reading everything, talking to other mums in the same boat, comparing children. Arrgghh. Cos at the end of all your research you still don't flaming well know! All you want is for the docs or physio to say is DD will do this, this may be a bit of a problem, this may occur more slowly...but they never do, never commit themselves simply because they don't have crystal balls. Your DD will probably do better than what the drs say as they are always merchants of gloom! Physios are a bit more realistic, but no one really commits themselves! Frustrating!

All I can say is aim for the very best for your DD!
x