Does your child have CMT?

[Livinthedream84]

Name changed.

I’ve posted here for traffic. I wondered how mumsnetters have kids with CMT?

About 95% My partners family have it in some form and all 3 of my kids do. 2 of my kids have very mild symptoms but my youngest DD2 has it more severe. All DH family are older so no kids her age.

She’s 10 and is taking it a bit hard. She knows she’s different from her friends but refuses to talk about it. She cries for days before check ups because she hates the hospital and it’s got to the point where we don’t tell her about appointments anymore because it’s too upsetting and she won’t sleep.

We thought it may help for her to meet other kids with CMT but obviously that isn’t possible right now, may be nice to zoom or email? Am I doing the right thing? Will this help? Anyone had a similar experience?

Thanks

Hi I've not had any experience and I think her meeting others may be of benefit.

However have you thought about asking your GP for a referral to child and family psychological therapy services? Some support from a clinical psychologist may help her deal with her feelings and move towards acceptance. This may set her up in a stronger position to deal with it.

You sound so caring and such a loving mum.

Thank you for your reply. It’s very rare so I wasn’t expecting any reply really. CMT isn’t very well known so we kinda get pushed into the background :(. We have tried talking to her neurologist and geneticists and they just suggest looking online at the support groups but most of them are adults. She has plenty of adults in her life she needs more children like her really.

Thank you for your kind words x