Been told today ds has possible cp

[ntt]

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.

by acdemic I presume you mean learn?
My dd who has severe cp can learn she is very"bright" and understands everything. Of course her education is delayed as it takes her longer to do things and she needs help all the time. One of her friends is academicly bright and has just moved schools to a more acdemic school as there she will be able to do exams.
I don't know if this helps.

I am quite new to mumsnet I hope you don't mind me joinning in this thread

ntt I have worried about my dd2 since she was born she was iugr and was 4.6lbs full term she was in Nicu for 5 days due to hypoglycemia and unable to hold her temperature. She is now 2.6 and I still worry. She was quite slow for the first year developmentally but has now caught up. She is different from other children but not in a way that I have yet been able to put into words. I sympathise with you completely about how you feel towards your little one and looking for answers. I am still looking for answers as to how she will develop mentally as she reacts to things differently.

I love her to bits and now I also enjoy her but didn't (enjoy)for the first 2 years, for the first year I felt a kind of dread sometimes when I looked at her, and found it hard to cope with other children of a simaliar age. I stopped going to toddler groups and the like to avoid comparing her to others but you can't help it.

It was dd1 that kept me going through this without her I am scared of what I might have done.

I now look back on this bleak time with regret that I didn't see her for what she was and enjoy her.
Unfortunatley it will be a long time until you do find out the true extent of ds possible problems so just try to enjoy the baby you have and accept him for how he is.

I missed the referance to hypoglycemia and implications could you give me more details please.

Hi lou, thanks!

buzylizy, yes, that's what I mean by academic, and what you just said gives me optimism - not that I expect him to be a genius or anything lol. It's just that I really want him to be able to work his way round any physical problems so he can lead an independent life and take pleasure in reading for instance.

Hi lastboat and welcome to mumsnet

I'm sorry you've been/are going through this stuff too. "Dread" and "bleak" - yup, words like that can sum it up pretty well. I am hoping to have another baby asap as I know that will help me from being so (unhealthily?) obsessed about ds.

I'm not too sure about the hypoglycemia myself. I need to get a copy of my notes.

Re your dd2 reacting differently from other children, is there nothing anyone's said on the sn board that strikes a chord with you? Maybe you should start a thread, there are such wonderful people on here collectively with more experience than you can dream of who are able to advise and support. I don't know where I'd be if it weren't for the help I've had here x

btw, my name isn't morticia (alas), it's just another user name i have!

also, ds2 is a v smart boy, it is just a physical disability he has

iirc i think it is about 50% of children with cp who also have brain damage affecting their mental capacity

Crikey as high as that?

but that means 50% dont, and there would be a wide range of what would be called brain damage

Ntt
My dream is for dd to bea able to read. She is learning but it is so slow as she can't talk. But i really do think it will happen. She loves books and I just can't imagine her not learning.
looking back I did find the first 2 yrs the hardest I think once you get a dx one way or other it will be easier.

Hi ntt, a lot of what you have written strikes a chord with me - my dd2 who is now 4.9 has global dev delay but no diagnosis. We had all the worries about hc too - she was born with hc on the 50th centile (although that may have been a mis-measurement), by 6 weeks it had fallen to about 9th centile and by 12 weeks was off the bottom of the chart. No one could explain this. I did become a bit obsessed with measuring her head which only made me all the more worried. Now she won't let me which is a good thing! I just can really understand your wanting to measure your ds's head all the time and won't advise you not to (as I couldn't help doing it although it is probably better not to )

Also I remember going to SN play groups where no one else's child seemed to have any obvious problems and where the play leader wasn't reassuring, but more worried (my dd could sit up but hardly played or made any eye contact at that age) - so really sympathise with how you felt at your play group.

When you ask about when a learning difficulty becomes apparent, I think it depends on the degree. A more severe difficulty would show up before school age - my dd began to show definite learning difficultes from about 12-18 months.

Lots of sympathy - these earliest years when everything is so uncertain are very tough and there are so few people who understand what you are going through - how supportive are the rest of your family?

Oh god Caroline, your first 2 paragraphs could have written by me! He went from the 25th to just above 2nd in the same kind of time. It's crept up a bit more towards the 9th lately, but, thank goodness I've lost the tape measure!!

Do you still feel as though you're in a "hinterland" having no dx? Are you able to tell me why you first suspected learning difficulties? Unfortunately I don't really have much in the way of family - what I do have would be next to useless and live hundreds of miles away.

Tbh, I've stopped worrying too much about a diagnosis as I don't feel it would make that much difference to us. We've had the standard chromosome tests/MRI/EEG, all of which showed up nothing. She doesn't have cp apparently, but has always struggled with mobility (she has very flexible joints making it more difficult to stand/walk). Like others say, I think it gets a little bit easier to deal with as time passes and the extent of any difficulties become more obvious.

Dd's learning difficulties became gradually obvious as she simply didn't meet most milestones by the latest 'normal' age.

Sorry to hear that you don't have much support nearby - hope you will meet some friendly Mums at your SN playgroup.