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SN children

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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:

sparklymieow · 08/02/2006 23:39

my Ds has Cp (as misdee mentioned below) he was hypo gl. at birth too. He was born at 35+5 weeks after i went into premature labour, he was a C/S as he was breech. He had IUGR and was put in SCBU for a few days. It took me 2 1/2 years to get a dx because nobody believe that there was a problem. He is now 8 and wears AFOs, lyrca upsuit, has physio daily, tires easily, uses a wheelchair for distance, and you can tell he has a disablity now (wasn't as noticable when he was younger) but he is very bright and doing well at school.
I agree with everyone else tbh, before you go down the legal route, please get a full dx and get into the system. I did look into suing the hospital as I believe that if they had delivered DS at 30 weeks, as they were going to do, when they realised he wasn't growing, he might not have CP now. Obviously there is no way of knowing that for sure, but I do know it happened in utero. We decided NOT to sue, even after we found out that DD1 had CP too and it was more than likely because of her care in SCBU, because it is a long drawn out process and tbh, I could not put my kids through that.

Original poster

ntt · 09/02/2006 10:43

Hub, interesting last sentence to your 10.53 post last night (sorry, I'd gone to bed), I'll have a look at the link in a bit. And re your 11.07 post, yep, that's what he's saying.

Misdee I'm still in the very early stages of grappling with what might be happening with ds. I think we all need a bit more time to gather some strength before getting the mri, and like the neuro said, he's of an age where the brain can change so much anyway. On the other hand, maybe a later scan might miss something crucial. I don't know. What do you think? And yes, we've seen all those professionals you asked about. So sorry you're feeling it with your dd2

Doormat, thanks, you and misdee are right, I at least need to get the chromosome test results back first. Hope everything's moving forward with you.

Sparkly thanks for your post, I'll have to get a copy of all my notes. How do you do this, just ask? It will be interesting to see if ds was hypoglycaemic too - he was certainly put on a glucose drip and in pg I had suspected GD.

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FioFio · 09/02/2006 10:50

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FioFio · 09/02/2006 10:51

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doormat · 09/02/2006 10:53

fio you didnt

Original poster

ntt · 09/02/2006 11:26

Fio - were you terrified when you started to have concerns?

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FioFio · 09/02/2006 14:28

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MABS · 09/02/2006 16:06

oh Fio, i could have written that myself.. My ds has left hemi cp and is now 5. We were given the shock dx when he was 48hrs old!! At that point, he was on ventilation so i was more concerned with him living. (thats 26 weekers for you...)

Thinking of you NTT,ask anything you want of me.

Original poster

ntt · 10/02/2006 15:51

Blimey mabs - dx in 48 hours? Was that after an mri? How is he now? 26 weeks?!! He's a lucky boy! What a nightmare start for you all x

Fio, thanks for telling me that. It makes me feel more normal. On top of feeling like that, I feel bad for being like this because the parents on this board (the only ones I "know" with children with sn) seem to be tremendously strong and rejoice in their child unconditionally. You obviously do now, so hopefully I can look forward to being happy with him in the future, whatever happens.

Is there anyone reading this who has a child with Ataxia in their arms/hands?

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buzylizy · 10/02/2006 23:54

Has anyone told you what ataxia means? I ask as I was told my dd has afetoid cerable palsy with ataxic tendencys. I must say(I am going red!) I have never asked what the ataic tendercys part meant(she's 10!) I don't know if that is the same thing.

anniebear · 11/02/2006 07:11

ntt

I don't think it is a case of being strong, just maybe some of us are a little further down the line than you

I cried everyday over Ellie for so long, gradually it was only every few days then once a week,

Yes, I do rejoice at what she does but also am still devastated at what has happened

You will be suprised at how much many of us 'oldies' used to post on here so upset (still do sometimes!!)

anniebear · 11/02/2006 07:11

so dont feel bad at all!!!!!

Original poster

ntt · 11/02/2006 11:28

Buzylizy, The paed thought ds was ataxic because he has difficulty in reaching out for objects, it's quite a laborious process and requires a lot of concentration for him, although he generally manages it in the end! I looked up ataxia on the net and discovered that you can have it on it's own, even without cp, and that some types can be degenerative, (but not the sort that comes with the cp I think), so as far as I can ascertain, I think the word ataxic simply describes the actual movement iyswim?

How is she with her movements now? Where does she have her ataxia?

Anniebear, I wish I could say I can't begin to imagine what you must have gone through in those early days with Ellie But it's lovely to see you posting the occasional piccie of her and sharing her achievements with us. I feel like I need role models and inspiration at the moment.

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buzylizy · 11/02/2006 18:13

she has a lot of extra movements due to the afetoid part. I did wonder if the ataxic part was , when she really tries to hold something a bring to her mouth like a spoon (with help) her arm just goes completely stiff.

Original poster

ntt · 11/02/2006 18:25

It could be - that is one way of describing what happens with ds - especially when he's bringing food to his mouth. Can I ask if you if you can remember if your dd was delayed in passing objects from one hand to the other? And how she is generally these days?

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buzylizy · 11/02/2006 19:23

to be honest everything has been delayed. She has never been able to pass things from one hand to the other. she just gets round it(if you know what I mean) She has always had good head controll and although she can't sit unaided she sits in a w if you can imagine it. She walks in a walker (wearing affos) she is very bright and funny.
Don't worry though your chances are this won't be the case for your dd. cp is so vague (only word I can think of) and I know so many kids with such different levels of it. If you ever want to ask ANYTHING if I don't know I might know someone who does.

buzylizy · 11/02/2006 19:25

sorry meant to ask does your dd eat ok?

FioFio · 11/02/2006 19:33

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Original poster

ntt · 11/02/2006 19:38

Thanks buzylizy Ds's head control isn't great yet - he can't sit in an upright position for long without his head flopping forward or to one side, although he'll lift it if he's looking at something interesting. Lately though when he's on his tummy he seems to be holding it up a lot steadier.

He can eat loads of things - blueberries, toast, cheese, breadsticks ie a real variety of textures. It is a real struggle getting him to eat things on a spoon though, dp can't do it at all! He opens his mouth for finger food though

Thanks Fio x

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buzylizy · 11/02/2006 20:07

wow he is good at eating dd was a nightmare at that age. See that as a positive Because from my personal experience it is,

DebsCee · 11/02/2006 20:24

I second that, a definite positive. Not eating is one trauma and stress I can live without. x

MABS · 12/02/2006 08:25

that's probably the only probelem i haven't has with ds - he's always eaten v well!! Just to answer your question, as he was born at 26 wks +2 they automatically did a scan on brain and that's when they saw the damage. We were then told about about it when he was 2 days old. He was a little fighter then and still is aged 5.

I have my black moments, at the moment very often. It's an emotional rollercoaster and I often think why him, it's nota bloody fair. At the mo he has suddenly started being incontinent and has to have another mri v soon, and also has been referred for botox as his tone is bad. To be honest I feel like shit but he is my child, what choice do i have? I will not give up and I will continue to fight (Thats what it is ) on a daily basis.

chonky · 12/02/2006 10:34

ntt- that's great about the eating. Feeding for dd has been really difficult, she really can't cope with different textures.

It is an emotional rollercoaster, but I can say that I am in a better place now (generally!) than I was 12 months ago. I think you just develop coping strategies.
One of my coping strategies was to go back to work, but I know that other people deal with it in different ways.

Original poster

ntt · 12/02/2006 11:14

Mabs I'm sorry to hear he's started to be incontinent. It's great that he is able to go the the loo himself usually though. Is it because he is unable or unwilling to go at the moment? I hope the mri comes back with good news and that the botox works - where is he having it? In his arms?

Re the feeding - I do sometimes feel like I have to force him a bit (not until he's crying of course) with the spoon stuff, (to get vegetables etc into him) and just lately his arms have been thrashing about so much it's been getting everywhere. Sometimes though he grabs the spoon and puts it in his mouth himself which is lovely. He much prefers to eat things I can pop into his mouth with my fingers though and we practices feeding himself breadsticks several times a day, which he's not bad at at all!

Before our last consultation I believed he was going to roll/sit/crawl/walk, but he'd be a little delayed and that if he did have cp it would be mild enough for him to overcome with physio. Of course I was still worried about his hc. But since then I've been beginning to get the feeling that he might never do even these things. Don't know why.

The HV came round for a bit on Friday, she (as ususal) asked me if he can pass an object from hand to hand yet. Of course he can't and is no where near doing so. I asked her what this means. She took quite a few seconds to answer then said it has something to do with thought processing - messaging from one side of the brain to the other. Is there any chance a person can be academic even if they can't do this?

Chonky, I'm looking into nurseries for a couple of days a week. I think it would be really good for me at the moment and I need to get him used to a different environment. I know he'll hate it to begin with though and I'm worried they won't be able to feed him properly/won't be quiet enough for him to sleep/they won't be able to give him as much attention as he needs and leave him to cry..... I'll go round some this week I think and give them a grilling

OP posts:

lou33 · 12/02/2006 11:29

ntt my ds2 is 5 next week, and has cp

i also live in surrey

you can email me if you like

morticia (at) spoiled-brats (dot) com

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