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Original poster

Been told today ds has possible cp

110 replies

ntt · 03/02/2006 17:39

Following on from my thread here ....
Had the appointment today with the neurologist. He was great and was a hell of a lot more on the ball than the general paed we'd been seeing. He examined him really thoroughly.
He told us that ds (now just over 7 months) possibly has cp. He also said the seizures weren't HIE like as been told, but because they happened within a couple of hours of his birth must have something to do with something that happened in pregnancy.
His legs are strong and the neuro thinks he'll be walking fairly soon, but has low tone in his shoulders and left arm - which he said was apraxic. We also had to have an ecg because his heartbeat seemed a bit strong. Everything else seems fine - eyes, ears, reflexes.
He said watch really carefully for any more seizures - infantile spasms.
I feel really weird. I'm still worried about his hc which is still following the curve, but if there is any intellectual impairment it probably won't be apparent until he's at school. I(s there any way I can stop worrying about his head circ?)
We've been signed up to the development unit and I'm going to a baby therapy group thingy on Monday.

OP posts:
Dinosaur · 06/02/2006 15:59

Oh ntt that's awful! I feel sick just reading it, so can only imagine how you must have felt .

Original poster
ntt · 06/02/2006 16:06

It's my fault really for putting her on spot like that I suppose. It's not really fair of me

OP posts:
Bethron · 06/02/2006 16:30

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Dinosaur · 06/02/2006 16:36

It's really not your fault, ntt.

One thing I would say though is that in my experience of dealing with health professionals, they are pretty careful about giving reassurance, especially if they are junior or inexperienced. I know that when DS1 almost died when he was born, and I was desperate for some reassurance in the subsequent week, but all I ever got from the medical staff was something along the lines of "Well, what happened to your baby was really serious..."

Don't give up on the group just yet, though. What were the other mums like - if their babies are not developmentally delayed, why are they goinig to the group (sorry, that sounds aggressive, it's not meant to be, I jsut can't think how to phrase it!)?

Bethron · 06/02/2006 16:42

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Original poster
ntt · 06/02/2006 16:46

I've been desperate for reassurance since ds was born too. Had none though either It's like a madness isn't it - frenziedly trying to extract answers from the medics?

Other mothers seemed fine - their kids did have problems but just didn't seem to have delayed milestones ie one little girl had cp, but her mum said said she wasn't slow to meet her milestones until it came to walking, a little boy had West's after he'd reached most of his, a 6mo had a bit of hypotonia, but was sitting up and grabbing etc (she didn't really know why she was there either lol), and I didn't really get to speak to any of the others but their little ones were all crawling/running round and because I missed some of the introductions (being late as per!) I had no idea why they were there.

OP posts:
Dinosaur · 06/02/2006 16:48

Ruty it really is, and I was completely obsessed for a long time.

Keep posting on mn.

Dinosaur · 06/02/2006 16:48

D'oh - ntt...

Sorry.

Dinosaur · 06/02/2006 16:52

By the way - are you going to start posting in your "real" mn name about this now?

Original poster
ntt · 06/02/2006 16:55

Gosh, don't know, it's been so long. I thought about it.

OP posts:
Dinosaur · 06/02/2006 16:56

Just being nosey. Obviously, stick with what you feel comfortable with. (I don't know your other mn name, btw.)

Original poster
ntt · 06/02/2006 16:59

I think I'll remain ntt for now. The old pre baby me seems like a distant dream. It's a bit painful thinking about it for some reason

OP posts:
Dinosaur · 06/02/2006 17:40
Sad
Original poster
ntt · 06/02/2006 18:11

I'm ok, just playing with ds and his fab new toy library toys and about to have a glass of wine. How on earth do people on this board not become alcoholics ??!!

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FioFio · 06/02/2006 21:54

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Original poster
ntt · 06/02/2006 22:07

Thanks Fio x

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FioFio · 06/02/2006 22:10

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FioFio · 06/02/2006 22:11

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Original poster
ntt · 06/02/2006 22:16

Yes, it was me! Lovely to see you back

OP posts:
chonky · 06/02/2006 22:20

ntt - sorry you met such an insensitive cow at the playgroup. Fio's right (she's wise not barking ), we've all met people like this, but it doesn't make it seem any easier at the time. Big hugs to you {{}}, and keep posting here.

Dinosaur · 08/02/2006 17:42

How are you, ntt? thinking of you such ha lot at the moment.

misdee · 08/02/2006 17:57

hi NTT, mieows ds and dd1 have CP, her ds is too smart for his own good lol. he is reading years ahead of his age group (i got him a judy blume book for his birthday, he is just 8, think they are are 11yr olds). think his was caused in utero (he didnt grow), her dd1 is more complex and delayed IMO. hers was caused after birth.

i'll get mieow to pop on later if she hasnt already seen this.

Original poster
ntt · 08/02/2006 18:18

Thanks Chonky and Dinosaur, it's really appreciated

I'm ok, I was particularly down yesterday as I was alone all day and had no wine in the house(!) Feel ok right now though.

Misdee - that's great to hear, did your nephew's head grow normally? Crikey - I'm obsessed!! It does seem to be a bit nearer the 9th centile than it was last time it was measured...(and if he was a girl it'd be on the 25th!)

We had the physio round today who said he looked in proportion (after I'd practically begged her to lol!). Then she spoiled it a bit by saying he doesn't seem to babble much (ok, I asked her about that too, poor woman). He does babble though when he feels like it, when he's eating or getting his nappy changed, or hanging in his cot so that's got to be good?? She's shown me some exercises and is coming again in a couple of weeks.

We've got the ECG on Friday morning - he was referred to as having a "heart murmer" on the appointment notification.

OP posts:
misdee · 08/02/2006 18:19

no idea about his head sorry. he is small tho. but then so is mieow.

buzylizy · 08/02/2006 19:07

sorry just been reading this(anything to do with cp I have to read as my dd has it) why are you worried about your ds hc?
hope you don't mind me butting in and asking