Cerebral Palsy????!?!?!?!?!

[bob2331]

Hello all you yummy mummies, hope you are all doing well and bubba's are behaving, justwanted to ask you a little question!

Harry had his 10months deleveopment check two weeks ago and it all went great, he is doing super and ranging from 10months - 15months in his skills (i am sooooo proud)(He is nearly 11 months actual and 7 months corrected) anyway, at the end the doctor said 'of course his delvelopment might be slower in some bits because of the cerebral palsy!?!?!

WTF!!?!?

This has never been mentioned before and of course it doesnt change how i feel about him and how much i love him, but i was in shock! I knew there was a change because he was prem but still, its never been mentioned before.

They say they cant confirm it until he is 2 but because he sometimes sits to a side and prefers to pick things up with his right hand, his left side isnt as strong according to them but i have never noticed this.

Anyone else been told this or have any expereince?

Thanks xxx

 

[Dasy25]

Sorry didn't want to read and run. I've not had any experience of this. Hope someone can offer some advice for you soon though.

 

[AP]

Alex prefers her left side to her right , just similar as you say. Some babies just do. Alex might just do, too (but it might have something to do with her brain bleed at birth we dunno) However as much as we have pushed to get everyone to investigate, they say she is fine, its just her way. Never once has cerebral palsy been diagnosed.

Alex uses left hand a lot as a preference to pick things up - but her right hand is used for other things and we can encourage it too - with age things have definatley improved, its not as noticible. She seems to walk easily enough when she holds our hands too. When Alex was younger I posted a thread worrying.

Is Harry getting any physio? We keep asking for physio but she comes round and throughly checks, but we are constantly told that Alex is in fact fine? And I believe them now, theyve had a zillion opportunities. I have wasted too much time worrying about this, honestley.

However, my friends preemie has CP and this was confirmed last year after physio work and brain scans too.

TBH I think that was a quick judgement from the docs and I don't think you should worry right now. Enjoy Harry, forget what they said, theres no point dwelling until its confirmed.

 

[bob2331]

Thanks SB!

Yeah harry has physio and they havent mentioned anything, neither has his consultant which makes me think that maybe you right, its a quick judgment thing!

The silly thing is, Harry will 'walk' along holding our hands and everything is normal and today, he was passing his sausage (well my sausage) from his right to his left and back and forth!!! I didnt really notice the whole only using the left hand thing until they montioned it.

I just feel that they seem to slap everything on Harry if that makes sense!
Each time we go they seem to suspect something else and i know he is at risk, but really, give me a break! That boy is perfect, he has his own little guarding angel looking after him!
xx

 

[AP]

TBH I think you'd know if something wasnt quite right hun! And the physio!
Perhaps you could ask the physio more next time? If you feel you could?

 

[bob2331]

I left a message for them to call me back, because he is doing well (apart from the whole tummy time issue) they dont want to see him until he is a corrected year!!!!
Thanks SB x

 

[AP]

That's OK. I was just telling DH and he agrees too. Don't go worrying about it though - times precious!

 

[Scottiemum]

Hi there, I am really shocked they said it so casually like that and like the others have said, Harry seems to be doing amazing. My dd is at risk of being diagnosed with CP however we have been warned from day 1 when they discovered her brain bleed. She has a preference of her right hand however does use the left and it is improving over time. We are scared stiff about the future but she seems to be doing great and really thats all you can go by. I would defo ask for some clarification on this, (although I know how scary that can be)...sometimes ignorance can be bliss! I find that with going to physio etc, every little move my dd makes is scrutanised and its very difficult not to always be looking at everything she does. Harry sounds like he is doing fabulously, doctors just dont know....I was told if only they had a crystal ball for every baby!! XXX

 

[bob2331]

SB - your a star :0)

I dont think it helped that the mother in law, when we told her, said, well im not surprised! maybe u shouldnt have had him so early!!!!

Seriously this is what i have to deal with!

Im going to ignore what both have said and just concentrate on my gorgeous (bais) baby boy who at the moment, is laughing in his sleep!!!! Maybe he is laughing at the doctor!!! x

 

[AP]

SB - your a star :0)

I dont think it helped that the mother in law, when we told her, said, well im not surprised! maybe u shouldnt have had him so early!!!!

Seriously this is what i have to deal with!

That's prob the most single worst thing I have heard in my life on BnB now


I have another neonatal update at the end of the month, im sure I'll be on later to tell yous how it went, but, I will stress the point of Alexs preference again (like every other time) and see what they say.

 

[bob2331]

i wish i could say its the worse thing she has said, but she has said alot worse, including blaming for 'the death' because i was selfish and shouldnt have had IVF!!!

I cant let it get to me now, well i dont, but thats mainly due to the drugs (precribed, im a good girl)
Well i hope Alex's appointment goes well xx

 

[AP]

Robyn, you know where I am

 

[Agiboma]

i juat want to send you i wish some ppl like you mil would just keep their mouths SHUT such an aweful thing to say omg i dont even want to go into a tear cause i dont know the woman but try your hardest to let it be water under the bridge if thats possible.

and these doctors sometimes i wish they would not just throw out there such terms as cp sooo casually

 

[nkbapbt]

Lakai has had a hand and side preference for well...almost his whole life. He had a Grade IV IVH with PVL as well, we were told at best he would have CP...

He favors his right side, is stronger on his right side. He does draw with both hands, but plays with cars in his right. And always has. He rolled to his right sooner and still does. No one has ever even mentioned CP to us, and he most certainly does not have it.

I wouldn't worry, like SB said you would know if something was "off". And even if CP was in the cards, it sounds like it would be very mild and hardly note worthy. I fully understand the CP "label" is a tough one, but it's such a blanket term for SO many things...it's sort of crazy. I know a lot of preemies with it who have been diagnosed with it, but you would have NO idea. They just have low tone on one side, looking at them you would have zero clue they had CP.

I am not saying this to scare you, I really do not think it's the case for your little man at all. I am just saying CP doesn't need to be a scary thing/label. Doctors love labels, and even if a child has like almost no signs of it, they still label it CP...just to label it something!

I must say, what a thing to just blurt out. And the whole cannot diagnose till two years old rule is a myth. If a child really has CP, most (not all) doctors will make the call before two years old because the more early intervention a child gets, the better their future and the outcome of the CP will be.



Don't worry seriously!

 

[AP]

I must say, what a thing to just blurt out. And the whole cannot diagnose till two years old rule is a myth. If a child really has CP, most (not all) doctors will make the call before two years old because the more early intervention a child gets, the better their future and the outcome of the CP will be.

Thats true nic, Alex's neonatal boyfriend has CP and was diagnosed a few months ago. They were born two days apart. but mum always knew this was going to be the case, I think.

 

[Scottiemum]

yeah I am trying to think that way too...... that its just a label. We have no diagnosis yet but I do believe in my heart its only a matter of time, the longer its not diagnosed the better, anyway really helps me and keeps some positivity to hear that others have had the diagnosis and you wouldnt notice to the eye and they do great. Not an easy journey for us prem mums eh!

 

[Wantabean]

dnt want to be rude but your mil sounds like a complete bitch!! i certainly would not be having ANY of that!!
two of my really close friends (twins) were born at 26weeks and one is perfectly fine. the other was diagnosed with CP and was constantly in and out hosp and their mum was told that she would never walk or do anything with her life. she is now 22, walks perfectly fine, has just gotten a mortgage and is starting up her own catering business. she is a fully qualified chef and has been in a stable relationship for 6 years. all the things she was never ment to have. so if he does have CP then try not stress its certainly not the end of the world.
i find that HV and Doctors are scare mongerers!! every time i go to see one, EVERY TIME, they tell me something different is wrong with Cam and he is gonna have a dif problem every time. load of nonsense!!! he is fine. they also spent over an hour telling OH that Cam was gonna have multiple disabilites both mental and physical yet there doesnt seem to be a damn thing wrong with him. i say just enjoy your baby and deal with anything else if and when it happens. dnt listen to your mil either. honestly some people!!!! hope your not too stressed xxx

ps cant believe the doc just blurted it out

 

[25weeker]

I can't believe your MIL what a disgraceful thing to say.

My lo is at risk of CP because along with being extremely prem she had a grade IV ivh on her left side. I am constantly looking at how she does things and sometimes over analyse everything! She seems to prefer her left hand for waving, blowing kisses etc but she picks things up equally with both hands and prefers rolling to the right.

The doctor and physio so far said they don't see any weakness but TBH they didn't examine her in much detail at her 9 month corrected so it doesn't fill me with confidence. The physio sat her up and swung her name badge so she would grab it! I wanted to say 'is that it!'. I am hoping her 1 year corrected will be better.

I could say don't worry but I don't take my own advise I do now stress less about it because at the beginning it was stopping me enjoying her.

Harry is doing brilliantly doing loads of things for his actual age. You must be one proud mummy.

 

[xxClaire_24xx]

aw thats a hame that they put it on you like this. Ellie was only 6 weeks early but was a low birth weight and they said that she might along the lines be diagnosed with CP so we were always aware. Her neck sits really badly to the left and she has fortnightly physio to help it but at her 1st neonatal check I asked them about her left leg that never seems to straighten and I had said to everyone and no one had listened so I knew along there was a problema dn now they are sending her for a full body bone scan and then she will prob be in a hip harness, but yeah I think that its motherly instinct xx

 

[nkbapbt]

Claire - Your daughters head tilting to the left could be torticollis, it's very very very common in preemies (Lakai had it slightly when he first came home). It can affect the muscles through out their bodies as well. It sometimes comes across as CP, but in fact isn't and does heal with treatment.

Even if it's not true torticollis (which basically happens from our preemies spending too much time on one side of their bodies, and the muscled develop more to one side) it could be just that her muscles developed more to one side for the same reason.

I am not too sure how old your daughter is, but lots of tummy time is a great cure for either of these. As is trying to get to her focus/look/play to the opposite to which her head tilts.

I hope this helps!