Newish diagnosis - son not coping too well. — Scope | Disability forum
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Newish diagnosis - son not coping too well.

Mandalea98 Member Posts: 3 Listener
Hi, I am a mum of 3 teenage boys. My middle son had a birth injury has a diagnoses of dyspraxia, dyslexia, hyper mobile joints, mild ASD, sensory processing disorder, visual perception problems, mild congenital cardiac disease and resolved orthopaedic issues. He has always had these problems, is upbeat, positive, hard working and doing well.

My youngest had no birth issues. He was apparently healthy but has always complained of mild leg pained has dyslexia. Although didn't have perfect co-ordination was much better than his brother. As he entered puberty and a growth spurt his legs became contracted. This worsened and last year, at 14, he was given a diagnosis of periventricular leukomalacia and cerebral palsy. Since then his legs have become worse and he now has lax toe joints causing dislocations and requiring orthotics to keep his toes in place. He also has developed tremors. His weight has dropped off with his BMI <0.4th centile (and would be less if he could stand up straight) He is under a neurologist and has referrals for gastroenterology, rheumatology, dietetics, genetics. So the truth is we don't know what is going on with him.

I'm looking for some advice to support him regarding low mood. He is refusing to engage with physiotherapy as he says 'why prolong the inevitable'. He has researched assisted suicide as he is convinced he is going to end up with locked in syndrome or MND. There is no evidence of this. Most of the time he is fine but when you sit down and talk to him he is overwhelmingly negative. 

Any ideas?


  • Richard_Scope
    Richard_Scope Posts: 3,178 Scope online community team
    Hi @Mandalea98
    Thanks for your post. I am sorry to read that your son and your family are going through such a tough time. It is always very difficult receiving a diagnosis and it does take time to process the information. I have included a link to information on PVL and CP, some which you will probably know. 
    Also, here is a link to Young Minds they are an organisation that champion children and young people's mental wellbeing. Their website contains tools and practices that may help.
    I wish you the very best and if we can help further, do get in contact.
    Specialist Information Officer and Cerebral Palsy Programme Lead

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