Struggling with cmt child

[Asyeda]

Hi all. My ten year old son has CMT and was diagnosed four years ago. He is now very frustrated and angry about his condition which is making him have aggressive outbursts and lash out physically. I have asked my GP to refer him to CAMHS. Any other suggestions? Need some help!!

[Cooper01]

Hi, first of all sending you a big hug xx I can relate to how your son is feeling, even thou I was 22 when I was diagnosed, I was pretty much the same, but finally was able to put it in to perspective as it has not stopped me doing anything (apart from ice skating) but that's not so easy for a 10 year old ... when I was diagnosed I was offered genetic counselling I wonder if this may be better than camhs? Also not sure camhs will be able to assist, we used YESS yes-s.org.uk/ ( for other issue) .... I have got 8 year old twins and have decided not to find out yet if they have or have not ... which I question everyday but I envisage that I will experience similar with one of them ... just try to get him to see the positives xxx

[oliverdeb]

hello Asyeda, i am a bit not understanding . are you sure that it is the fact your son have CMT is what is making him so unhappy, or could there be other contributing factors ? i as well hope he is not using his CMT to get his own way ? (kids are very smart ) in my opinion if if you answered (No) to these questions . than i would seek Doctors/Specialist help . i wish you and your family a resolve .

[Jogeemama]

It can be very frustrating for a child. I would suggest meeting with a child psychologist. They can help you work through this. Is your child doing PT? Do whatever you can to help your child''S quality of living. We are doing this for our 5 year old little girl. Best to do while they are young. Puberty is just around the corner, if they haven't already started. If there are things he really enjoys doing, then do it. Try & help him channel his frustrations into positive happy things..

[Asyeda]

Thanks for the advice. We are trying to do these things already but as he is very limited physically it is difficult. He loves football and not able to play at the moment so adding to his angst.

[MommaWheels]

I totally get it. It's hard enough sometimes being 10. You're no longer a baby but you're not yet a teenager. Being a 10 year old with a disability can feel frustrating and isolating. I remember being that age and just not understanding why I was the one with CMT? I'm in the US so I'm not sure what camhs is but if it involves counseling it may help. One of the things that my parents always did is to help me switch it up so if I could no longer do an activity, help me find something else I enjoy. Maybe if he can't play football at this point he could help coach younger kids? Or focus on one of his other interests? CMT will continue to make him need to shift gears so he'll need to find positive ways to cope. How does he deal with other forms of stress? Being frustrated or angry about his situation is normal but if it turns into a temper tantrum or a long term thing, you should definitely get some help. You may want to reach out to your local disability agency and see if they have other consumers around the same age. Sometimes talking with someone your own age that 'gets it' can be helpful. Sending supportive thoughts to you and your family.

[Kieran85]

I feel your lads pain ! Am a 31 year old man and am just getting diagnosed now ! But I've had this disease from a child , my mum has got it ! She never told me about it till only a year ago , which is another matter ! But my hands are weak and my feet go numb if I ever play football! I have high arches and muscle waste in my hands ! It all makes sense now ! I've felt sorry for myself often ! And it just doesn't help ! I still go the gym everyday , do weights and running , I can't lift heavy weights like most lads my age ! But I've still got in good shape ! And that's help me , I still play football , but just in goal now , I try not let this shit disease ruin my life ! Am a bricklayer ,so I have to use my hands daily ! Which is a struggle ! But I just do my best , swimming helps yours hands too , I wish your little lad well for the future

[Asyeda in reply to Kieran85]

Thank you. Really appreciate the response.

[Kieran85 in reply to Asyeda]

Your welcome

[jayneAmanda]

Hi i was 45 when i found out i had this condition, was a big blow to my life, to the extent my husband nearly left me. Its been an on going fight to get Dwp to understand how the condition affects people/ me, I had a good job and lost it after ankle surgury as the company wouldnt allow me in the building with an orthotic device, said i was a risk to myself and others, But hey ho their loss as i was 1 of 2 of us that really cared, and really was devoted to my work.

Its been a struggle for me, even to get my family on board then finally my mam decided to be tested, after she spoke to a rhumatologist whom laughed at her and told her she didnt have Cmt, The results came back as positive, i kept telling my mam she had it her feet and hands were the give away. She then spoke to the rhumatologist and told him he was wrong and that i was right. My mam was 68 when she found out. My mam has been an active person all her life and despite the condition she never knew she had has always worked hard, even at 70 she has pushed herself to decorate the house, her feet are so deformed i have no idea how she walks on them, yes walks... because its too late to start having operations to straighten then, my mam is my rock and proof that you can live life to the max, because we either let this condition take hold of us or we fight it and keep our bodies as fit as we can. Ive sat back and watched my body pile on the weight due to lack of mobility, im not happy with it, so have decided its time to fight back whilst i can, i know it wont happen over night but if i can do it at 50 with a positive attitude then a positive mind of other adults with children should keep their child positive. My daughter was 19 when she found out she has the condition and doesnt even give it a thought, she continues to live her life to the max and stays positive.