could ds2 have cerebral palsy?

[SamN]

just a quick message because I'm going to try to have a sleep with him before the cleaner comes!

I just have this little suspicion that ds2 (9mo) might have cerebral palsy. The main thing is that his right leg seems so much weaker than his left leg. When he tries to stand, he never puts his weight on it, when he sleeps it seems to be always bent up and when he moves from a sitting to a prone position he often gets it stuck underneath. And it's shorter than the left leg too.

His eyes are also misaligned - although they both follow things around the room one of them seems to be looking inwards more - and when he claps his hands one hand is usually a fist. I haven't checked if it's his right side which is affected in these cases.

I may be completely wrong. My middle sister had multiple disabilities including partial paralysis on her right side, so I might be ultra-sensitive to these things.

But if I'm right, what should I do? Do I wait until his '8 month' check (whenever that is) to mention it to the health visitor, or do I book an appt at the GPs?

And what will they do? Will they tell me that (as with so many other things) they can't tell for sure until he's older? Will that mean that we can't get any help (like physio) until they make a proper diagnosis? What help might we get if he is diagnosed?

Oops, not such a short message after all (as often happens when I post on mn). Feel free to direct me to archived discussions if this has all been covered before, or to websites that you feel might be useful.

tia

[MandM]

Hi SamN

I don't know exactly how much help I can be and there are other MNs with much more Cp knowledge than me who will come along later. There is nobody apart from a paed. who could give you a definite diagnosis, if one is needed, but your situation sounds very similar to my DD, so here goes.
She has a right-sided hemaplaegia (sp.?), so basically has CP affecting her right arm and leg, which we started to notice at 7-9 months. I had an horrific birth experience with dd resulting in time in NICU with head injuries so we were told to prepare for the possibility of CP and becuase of that were obviously more vigilant and paranoid than we would have otherwise been. The first things I started to notice were that she always went for toys/mobiles etc with her left hand and as you've described, she clapped with her left hand open and her right hand in a fist. When we did try and encourage her to take things with her right hand it would take her a long time to try and reach out and she had very little grip, her little finger also seemed to be extended all the time on that hand. (BTW, she is now 4 (just, it's her birthday today ) and her gross and fine motor skills with her right arm are brilliant. She still uses it much less than her left hand and it is clumsier, but introduces whenever she needs both and can even manage to hold a pencil/spoon etc in it and has a good pincer grip)
With her leg, the first thing I noticed was that she splashed really strongly in the bath with her left leg but her right one hardly managed to ripple the surface. Similar thing with nappy changes/tantrums etc, her left leg would go like mad but her right leg just sort of wobbled a bit!
With DD, there were no head control or eyesight issues but her balance in sitting was very delayed (we now know that a big part of dd's CP is that her balance has been badly effected) and she didn't sit unaided until approx. 15/16 months. How is your Ds sitting?
We were on regular Paed. appointments anyway as a follow up from NICU but as soon as we voiced our concerns to him he arranged for CT and MRI brain scans and we got the dx that we had already realsied confirmed. In between time though, we were referred to the CDC (Child Development Centre) and saw Physios and Occupational Therapists, so no, you don't need an actual dx to be referred to these services, just evidence of delayed 'skills'.
I think you need to chase up your HV and get the 'check' arranged for ASAP. Tell them on the phone that you have some concerns and I'm sure they will arrange to see you quickly, they should then take it up for you and make the necessary referrals, but if like me you have a useless HV, go down the GP route. Unfortunately, getting help is very often a battle and although the presumption is made that when your child has 'problems' you are automatically directed to all the right places this is very often not the case and you end up having to do a lot of the groundwork yourself. This board is brilliant for that as there is always someone around who has 'been there & done that' and can offer some good advice.

I don't want this post to frighten you or worry you unneccasarily, and as I have said I am no expert and don't know your ds but your post just struck a chord with me. I hope everything goes well and that you get some answers to your concerns. Please keep us updated and feel free to post back or CAT me if you want to ask anything else.
x

[lou33]

imo i would book an appt with teh gp and not a hv, mine was so useless i ended up having to book appts on her behalf beause she kept forgetting, or using her expertise of nothing to tell me he didnt have a squint (was about as turned as it could go). Ask the gp to refer you to a paed, a neuro paed if possible. ds2 has cp btw.

[SamN]

Thanks MandM and lou33. I knew mumsnetters would help .

I have just realised that I can talk to the HV at the drop-in baby clinic tomorrow and if necessary I can arrange a GPs appt while I'm there.

Don't apologise for the information MandM. It doesn't worry me (at least, not any more than I was worrying already ) - I'm the kind of mum who likes to have as much information as possible about what might be going on with my kids. And I'm already used to having to fight for referrals etc.. Ds1 has food sensitivities and has never seen a paed about these, we used to be sent to dietitians who were little help and now we just get on with managing his diet ourselves. And ds2 has reflux which has been very hard to live with and it took the GPs ages to do anything other than just prescribe Gaviscon.

In answer to your q, ds2 seems okay with sitting. I've written in his red book that he was sitting unaided by 5 1/2 months which i think is fairly normal.

He was in hospital recently with heart failure due to a bacterial infection and the prob with his right leg has only become apparent since the discharge - so I don't know if it's related or not. They got a neuro paed to check him over once during his stay but I don't know if it was a proper check tbh (and of course we hadn't voiced any concerns about asymmetry at this point because the main thing was just whether he was recovering from the infection). The squint, clapping and the difference in leg size were all around beforehand.

[Potty1]

Sam - did he have a catheter when he was in with heart failure? If so I would contact the ward there could be an ongoing problem there.

[Potty1]

Sorry - that might confuse - cardiac catheter not urinary catheter.

[SamN]

potty1, no he didn't have a cardiac catheter as far as I am aware. What's the connection there?

He had an arterial line in his right thigh for a while.

[Potty1]

The cardiac cath can cause quite deep bruising (not always visible) in the groin area which might make movement painful. Not sure if the line could do the same thing.

Dd's cath caused an embolism resulting in nerve and aterial damage, her leg was cold and white, they were worried for some time that it wouldn't be viable. But this was mainly because she was in such poor condition prior to surgery,

[SamN]

Thanks potty1, I did mean right groin actually. The sho on duty that night (when they put the arterial line in) didn't inspire me with confidence tbh, so quite likely it is bruised. He does seem to have pain in that area. I used to massage him every night and I've given up trying to do his right leg and feet because he just cries.

I'll go to the surgery tomorrow anyway (to see the HV and GP) because, as I said, the other things, including the difference in leg length, were around before he was admitted. Then we have a review with the cardiac paed on Tue 26th so I shall make sure I mention it to him as well.

[Potty1]

Hope it's OK Sam - if the GP wants to refer you to neuro for the other stuff you might find that its quicker if the referral is done by the cardio guy.

HTH

[MandM]

SamN
How did it go with the HV?