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Tethered cord - does this sound possible

(3 Posts)
hazeyjane Sun 07-Aug-16 14:19:09

Ds is 6, he is disabled - with an undiagnosed genetic condition. He is mobile but has low tone, wears splints, some joint hyper mobility, some unexplained stiffness on one side. He has very low stamina and is often very tired and often complains of pain - sometimes if you ask him where he finds the word 'bones' on his talker, sometimes he says his skin hurts or is 'itchy', often he is very stiff and clicky, he complains a lot about back pain and seems to struggle to sit comfortably, preferring to lie down. He has a very lollopy walk, leaning one side, and sometimes will just fall. He also has a slight shallowness to his hip sockets.

He is in nappies, has terrible constipation, often has smearing of poo in his nappie, pooing and weeing seems to cause him a lot of discomfort, he often doesn't know when he has pooed.

I asked his gp and paed about tethered cord as he does have a very shallow dimple just above his bottom, his gp noted that he has a quite fat bit above his buttocks, but thought the dimple too shallow to indicate anything. His paed was (understandably) more concerned with the fact that he will need an operation on his willy, and that there may be old blood in his poo. He struggled to inspect D s very well as D s was hysterical about the paed needing to touch his willy. We are waiting for some results of blood tests (for thyroid function) so will see paed again fairly soon, but I can't lose this niggling feeling about tethered cord.

If you have experience do you know if it can present with a very shallow dimple (like you have pressed your finger into bread dough!) And do ds's other issues sound as though they could be related to tethered cord?

Thankyou

todgerthedodger Sun 07-Aug-16 14:36:41

My daughter has a tethered spinal cord and like your son, has the dimple and is doubly incontinent. She was diagnosed soon after birth through an MRI scan. She is also hypermobile and it was initially thought she'd never walk. She also complains of back pain and tires easily but as hers is diagnosed, she is under several specialists and will need major spinal surgery in the next 2 years.

So yes, your son does present symptoms of a tethered spinal cord. I'd see your GP and discuss your concerns.

hazeyjane Sun 07-Aug-16 19:21:46

Thankyou for your reply, very interesting. I had always understood it to be something that was discovered at birth, but on googling I see it can be discovered later in life.

I will write a list of questions for the next appointment and see if I can get some more answers.

I hope your dd is doing well. [Flowers]

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