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Here some suggested organisations that offer expert advice on SN.

Feeling broadsided

(3 Posts)
Sundayspilot Thu 30-Mar-17 18:29:01

Not sure if this is the right place but other posts seemed kind and supportive. My baby has just been diagnosed with focal cerebral dysplasia and I'm feeling scared and overwhelmed.

He was initially diagnosed at 6 months of age (he's now 9 months) with unilateral spastic cerebral palsy due to some mild motor deficits in one arm. He recently had an MRI to confirm the diagnosis and it came back showing the dysplasia. We are waiting on an EEG and neurology referral.

I stupidly started googling and have upset myself. He has not had any seizures to my knowledge and appears to be developing normally, aside from the left arm. What I've read makes it sound like intractable seizures and behaviour problems are an inevitability. Some sites made it sound like his quality of life will be very poor.

Not even sure what I hope to get from this post, other than some sympathy? Has anyone else here received a similar diagnosis?

2boysandadog9 Thu 30-Mar-17 22:38:14

I don't have any experience, but just sending a hug. My DS had a dx of Autistic Spectrum Disorder in January aged 27 months and it is hard not knowing what the future holds. flowers

user1490773628 Thu 30-Mar-17 23:32:02

I don't know much about dysplasia, but have experience with cerebral palsy. It's just an umbrella of a wide range of motor deficits - one can be severely disabled, another can be a doctor (I know of a doctor with CP). I would't worry much, if development is going normally. If they refer you to a PT with Bobath experience, it could be worth trying - as far as I remember they have a technique where they get activity in a poorly functioning limb by holding the other one still (or something like that). But I wouldn't spend too much time focusing on the potential outcomes etc., it is all so individual. From my experience, it's more productive to focus on the positive development (as difficult as it might be in the beginning), to observe and maximise on that, and to enjoy the experience.

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