Cerebral palsy advice

[kirstybumx3]

Hi. Does anyone have any experience with cerebral palsy?
I’ll give a bit of insight on our situation. Niko was born healthy full term with no complications. From birth he has had a right side preference with his head. At his 6 week check up he got referred to physio for torticollis and plagiocephaly from the torticollis. At the physio appointment the therapist also noticed that he has very stiff arms and clenches his fists tightly most of the time. As he’s got older we have noticed that his arms are mostly stiff and although he does reach out for toys, he has a right side preference with his hands too and still resists movement when his arms are manually stretched by us. His trunk and head control is good, but he doesn’t straighten his legs fully and when ‘jumping’ (jumperoo etc) will only do so with his right leg. He’s also developed a ‘wiggle’ sort of movement he does with his back that his physiotherapist thinks could be an involuntary muscle spasm. He cannot roll yet and when he is placed on his tummy can lift his head but makes no effort to push himself up or support himself with his arms nor move them from a tight tucked position. Based on all of this, she is seeing us weekly, has referred us to an occupational therapist and also to a Pediatrician for him to be evaluated further. She has loosely mentioned cerebral palsy on a few occasions so now I’ve been googling like a mad lady.
It’s been just two weeks since she said she would refer us. I’m just wondering now how long we will have to wait. What kind of things are likely to happen in the process to possible diagnosis? And if he does have CP, what am I to expect? I don’t know much about it at all and although we don’t have a definite answer yet it looks likely and I already feel a little overwhelmed.
Any advice at all would be greatly appreciated!

 

[Alidravana]

Hi,

I just wanted to let you know that I've seen your post and I will write you a better reply once I've gotten on my computer at work on Monday.

Jenny

 

[kirstybumx3]

Hi,

I just wanted to let you know that I've seen your post and I will write you a better reply once I've gotten on my computer at work on Monday.

Jenny

Thank you

 

[_Meep_]

Hi,

I can't relate to it all, as my first daughter was always on time or ahead with her milestones. However, she also had a somewhat stiff sore neck on one side, as discovered by a cranial osteopath when she was a baby. It was never formally diagnosed as being torticollis, as it wasn't severe. Despite this, she had a massive left side preference and did everything left side first - rolling, reaching, grabbing, etc. Her right side always 'caught up' in the end, but it was obvious (to me at least) that her right hand was weaker, and she couldn't pick up larger objects with it, or even seemingly straighten it fully like the other arm. She would fist it whenever she was concentrating on doing something, such as a peg puzzle, with her left hand and when she started walking, she would also fist the right hand with the thumb tucked in as she toddled about, which looked very odd.

In addition, she was a terrible choker on thin fluids. I was incredibly worried, to the point of obsession, that she had CP.

She just grew out of it though - all of it. She's actually right-handed now. By the time she was about two, all the physical issues had gone away, though she didn't stop choking on drinks until she was nearly three!

I guess my point is that having a head turn due to an issue with the muscle of the neck can definitely cause a side preference. I have spoken to other mothers who have noticed this too. However, your physio knows best and if there are real concerns, she is the best person to be associated with your son, as she will be familiar with CP inside and out.

How are things now?

P.S. My second daughter also does an interesting wiggle of her back/spine, which usually happens when she has just finished a wee. Could it be that? Check his nappy next time he does it maybe or leave him naked on a towel?!