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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.

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FioFio · 03/02/2006 18:22

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anniebear · 03/02/2006 18:59

sorry to hear this ntt

as Fio said, its a lot to take in isn't it

Original poster

ntt · 03/02/2006 19:14

Yeah, we're a bit dazed at the moment. He's going to have an mri further down the line and a chromosome test on monday.

He's not really rolling, and not sitting yet Fio

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jbadgirl · 03/02/2006 19:14

ntt, my son has possible cp along with other problems, we go to play therapy on mondays too, where abouts do you live?

FioFio · 03/02/2006 19:36

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Original poster

ntt · 03/02/2006 19:52

Fio - sorry missed your previous q about hc - he didn't tell me not to worry, but did say something about women having smaller heads than men and they do alright, also that some perfectly nt people have small heads. The only test we have booked in is the chromosome test on monday. We could've insisted we had the mri soon but I couldn't handle what it might show.

Jbadgirl - we're in Surrey - you?

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jbadgirl · 03/02/2006 20:33

we are in west sussex!

FioFio · 03/02/2006 20:38

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jbadgirl · 03/02/2006 20:41

ds will be having another mri soon ish, he had one at 3 months.

At the moment he has no diagnosis but severe developmental probs and very poor vision. He is 15 months old and is developmentally about 3-6 month old baby.

He has had his chromasomes tested and they came back normal but we are due to see the genetisist again soon.

Ds has come on a long way (even though still behind) we have just learned to be a bit more patient with him doing things, but when he does them the reward means so much cos he had to work so hard to get there.

It is a great place for advise/support on here, good luck for monday x

Bethron · 04/02/2006 09:13

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Cristina7 · 04/02/2006 09:31

I remember those first days, weeks and months of diagnosis and the emotional turmoil and how your world turns upside down. Things will never feel as painful as now, you'll start again to see your DS for the lovely boy he is.

hub2dee · 04/02/2006 09:46

Was not hoping to see you here, hun. Will write. X

Original poster

ntt · 04/02/2006 12:05

Had a few hefty glasses of wine last night with dp, so i couldn't get back on the computer. Dp was in in bits, but seems ok today and has in fact just taken him swimming for the first time!

Fio - his hc is still on the chart, just, between the 2nd and 9th centile, so I'm trying to console myself with this, but I just can't shake this feeling I have about it Do you know if there's anything that can be done to help it grow like electro therapy or oxygenation? I guess that sounds a bit desperate lol.

Jbadgirl - I do feel less impatient with him now, and don't feel like I have to keep trying to get him sit up for instance, so that's one good thing. Are you planning another baby? We want to have another asap (not as a reaction to ds's problems, that's what we'd planned), the neuro said hold off until you get the chromosome results, but I was wondering about genetic testing too - I did ask him, but can't remember what he said.

Bethron, It's great to hear you and Aaron are getting so much support and he is coming on so well.

I've never been able to look at ds without feeling scared, and I've never felt as if I've bonded with him because of this I hope this changes, I saw a young woman pushing her 3 month old daughter round in a trolley in the supermarket the other day. She was so obviously in love with her, cooing and laughing at each other, and I had to leave my shopping and get out of there (I was with ds) I feel so bad because this is the last thing he needs. He smiles and laughs all the time and doesn't deserve me being like this.

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Bethron · 04/02/2006 13:13

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Original poster

ntt · 04/02/2006 13:45

ha ha - swimming was a disaster - dp said he'd screamed most of the time, poor thing and clung on to him for dear life - at least he was using his arm muscles in that respect lol! We think it was because he was tired, he's going to try again though...

Bethron, did you have genetic testing before the counselling was suggested? I wonder if I should ask about it on Monday. I'm 36 this month and want to have another baby as soon as possible, but obviously I need to be aware of any risks.

I haven't had much respite from worry since the ds's birth - SCBU was a surreal nightmare and I guess because I'd been wanting a baby for so many years and we'd been trying for so long there was such a big build up. I did feel a bit less alone yesterday - the neuro mentioned that I was probably feeling lonely and unable to mix with other mums (very true!) and then invited me along to play therapy and have the opportunity to meet others in our position. He stressed to us that we didn't need portage "yet" like that was a good thing, I'm not sure, I don't know anything about portage really and what the implications of needing it are.

Dp said he loves ds very much and feels closer to him today which is lovely - in fact he's just taken him out shopping so I can have a long soak .

But last night he said that he can cope with anything as long as his mind's ok and that he couldn't handle that and what would be the point [of anything]?

There's no way of knowing if there's any intellectual impairment until he's school age really is there?

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Dinosaur · 04/02/2006 14:22

ntt at least you've started to get some answers. Sending you and your DP and DS all my best wishes. I'm sure you do feel really weird - coming to terms with something olike this is a gradual process and often it's a bit one step forward, half a step back.

Good luck and hope you find the baby therapy group thing useful.

Best wishes

dinosaur

jbadgirl · 04/02/2006 14:48

would love to have another baby in the future, want to see if we can find out more about ds first. And we will wait till he has had all his tests. Plus we have just moved and are getting married in may!

Talk about doing things all at once!!!

Going back to the centile charts, ds has never been on any line, he is lower than the lowest! he is holding his own though and is putting on weight slowly but surely.

Original poster

ntt · 04/02/2006 16:11

Thanks Dinosaur. I wish dp could come to the group therapy thing too because I know he's started to feel a bit isolated, for instance he cancelled lunch with some friends a week or two ago because he couldn't bare to see their baby who'd they'd had around the same time.

Blimey jbdgirl, you must be so busy! Did your ds have any seizures after birth? Have you any idea what might have caused his problems? The neuro was really quizzing me yesterday about my health and screening through my pregnancy, he said sometimes illness can cause problems (insults) to the developing baby. The only thing I can think of was I had a bout of horrible gastric flu in (I think) the third trimester, also had a bit of food poisoning from some sushi (not the raw fish ones of course though).

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jbadgirl · 04/02/2006 16:19

they think he had always had "fits" but im not sure how severe as they are not full blown. I knew they classed them as abnormal jittery movements to start with but looking back they say he was fitting.

One doc thinks that the cause of him having probs is because i had a urine infection at 28 weeks, it wasnt really bad or anything. the other doc thinks that his brain should have fully developed by then. She also thinks that cp isnt the reason it is just an outcome and she wants to get to the bottom of it. The first doc says we may never find out what is wrong with him, but they are gonna repeat all the tests that he had before to see if they can see anymore into it.

they say his head is small and the mention of microcephaly...i know nothing about this really. i know his head is small compared to other kids but given that his whole body is in proportion im not too worried.

Original poster

ntt · 04/02/2006 16:34

That's reassuring jbadgirl that you're not too worried about the size of his head - ds looks to be in proportion too, although since he's been eating solids his weight has "shot" up (lol) from the 2nd centile to the 9th. His length is on the 25th, so now his head is the smallest of the three. It funny you know, my ds looks very similar to those piccies you posted of your ds - they kind of hold themselves in the same way.

How long do you think it takes for the tests to come through before you decide whether to have another baby? I really feel time is getting on for me and I'd be devastated if we left it too late.

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jbadgirl · 04/02/2006 20:41

Our tests results didnt take too long to come through but we only got them when we were due to see the consultant (every 2-3 months at that time) ask them when you have the tests done. We had a lot of tests done at around the same time so it was all a little hard to take on board exactly what they would be expecting to find from the tests. In a way i wish i had asked more questions at the time but all they could say to me was "we will wait for the test results"!

Write down any questions at all and dont be worried about asking more trivial and basic questions because the docs sometimes forget that we are not in the profession and dont understand jargon!!

Really hope it all goes well, keep me posted x

mrsdarcy · 04/02/2006 22:12

My DD is 6 months and is under the care of a neurologist. Our situation is different to yours in that we didn't present with concerns that needed investigation; we knew before she was born that she has a structural abnormality in her brain, and the neurologist needed to see if that abnormality was isolated and if it was affecting her development.

One helpful thing the neurologist told me when I was upset about all these hospital visits,
was that it is hugely to her advantage, if there is a problem, that she is being checked so thoroughly at such an early age. The sooner they identify any problem the more help they can give your DS.

Some of the comments you made about bonding with your DS reminded me of how I felt when I found out, when pregnant, about DD's brain abnormality. I couldn't look at other pregnant women or at babies. and tried to stop thinking about the baby at all. I know your circumstances are very different but I really do feel for you and I'm sure that your reaction is very normal.

Original poster

ntt · 06/02/2006 15:43

Well, I went to the first play group today. Had to introduce ourselves and why we were there, which was a bit hard. All the other kids apart from a tiny baby were sitting/walking/crawling, and the mums I spoke to had experienced no significant delays so ds seemed quite far behind.

The lady taking the group spoke to us all individually and stupidly told her I was worried about his small hc and asked if she thought it looked ok to her and if it might affect him in terms of learning. She asked what centiles he was on then said something along the lines of; "Well, he's already delayed so he's already displaying problems..." then removed herself, which was disappointing because the neuro had waxed lyrical about how warm and knowledgeable this lady was.

I felt gutted and hopeless afterwards to be honest and had to sit in the car to compose myself for a while.

Mrsdarcy, I hope the structural abnormality doesn't manifest in problems for her.

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Original poster

ntt · 06/02/2006 15:51

Bethron - forgot to say, the neuro drilled into us to keep an eye out for infantile spasms.

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Aloha · 06/02/2006 15:55

Horrible woman! He's only a baby of seven months! Not all babies are up and about at that age. How shockingly insensitive she was.

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