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Tethered cord - is this possible

(13 Posts)
hazeyjane Sun 07-Aug-16 14:21:57

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

zzzzz Sun 07-Aug-16 18:26:34

No tethered cord info (though I think the sort of dimple you describe would register with me and I am an under not over reporter). However I do have experience of the minor being ignored in face of more "interesting/overt" issues. The best out comes I have had is by being very blunt about it at the beginning of the meeting. So "I know there's lots going on with ds but I am concerned that in another child this would get more attention, so can I ask that we.talk about it again?" Then have a piece of paper with the areas of concern (eg 1) wildly 2) bowel movement 3) dimple (tethered cord???) ) and spaces underneath to fill in what's said.
I would imagine ds has had an MRI? If so it might show on that so they could just review it.

Jasonandyawegunorts Sun 07-Aug-16 18:29:36

Is his back hairy?

hazeyjane Sun 07-Aug-16 19:17:56

Thankyou.

Yes the last appointment was particularly full, with bowel problems, discovery of problems requiring referral to urology and talk of an operation, discussion of a ct scan for chest and a referral for beginning ASD assessment......my vague, 'I've been worrying about this dimple....' might not have been firm enough! I will write a list, and try to take a photo of dimple, because ds's reaction to having to get on the bed and take off his nappy seemed to convince paed to make an immediate referral for ASD assessment!

It is hard when there are so many things going on for things to get overlooked. I think the paed is of the mind that ds's bowel issues are largely behavioural, which they may be, but I am neurotic enough to want to rule everything else out!

He has had brain MRIs, which have been normal.

And yes he is hairy all over, especially shoulders, it is very blonde!!

Jasonandyawegunorts Sun 07-Aug-16 19:25:55

Is it long hair?
Tethered cord with shallow dimple has hair on the spin sometimes. I remember researching it about 4 years ago becuase i suspected my neice might have had it.

hazeyjane Sun 07-Aug-16 20:35:03

No not very long, and not in a patch more a general furriness!

PolterGoose Sun 07-Aug-16 21:52:03

Good luck hazey, it would be good to know if it is or not as obviously that impacts on the strategies you use.

Sounds like diagnostic overshadowing to me, not uncommon among autistic and intellectually disabled people.

Jasonandyawegunorts Mon 08-Aug-16 10:28:49

From what you've said i would want him checked out.

zzzzz Tue 09-Aug-16 04:09:31

It is incredibly difficult to tick all your concerns and Drs do seem to have a limit to how many you are"allowed". I find what works is to say that quite openly. That it worries you that things are brushed aside that others might get help with and so the disability is compromising him more than it has to. I explain that lists help me (MN it also helps to have it in a book so you can say "I know I've mentioned this before but...."

"General furriers" makes him sound cutegrin.

nancyclancy123 Thu 11-Aug-16 16:00:58

My dd 5 has spina bifida occulta, she was born with a mole at the base of her spine which has lots of hair. She had an x-ray and mri when she was 2 as she was a very late walker and they wanted to check for any abnormalities such as tethered spinal cord, but it all came back clear, she then learnt to walk. Fast forward 3 years and I still cannot get her toilet trained, she has since been diagnosed with ASD, so her toileting issues could be due to this but I'm convinced it's something to do with the hairy mole. Paediatrician doesn't agree!!

nancyclancy123 Thu 11-Aug-16 16:05:56

Has he had an x-ray? I had to really push for my dd to have an x-ray where her mole is, this showed the gap in her spine. She was then referred for a full body mri. But, as they were scanning her lower back, she woke up and they immediately stopped, but insisted they had all the images they needed. It might be worth asking for an x-ray over you ds dimple?

Jasonandyawegunorts Sun 14-Aug-16 19:12:21

Bumping this up from page 3 due to someone spamming the boards.

Claennister Tue 23-Aug-16 08:58:23

I think this is ridiculously overlooked these days. The guidance says not to worry if a child has a dimple that you can see the bottom of and it's not hairy unless they present with other symptoms. But it seems that medics are ignoring that part of the guidelines and only going with the bits they recall about having to see the bottom of it. My DD has always had a dimple but it seems if anything to be getting larger, bonier and the bottom of her spine now seems to be a bit twisted. She has bladder and bowel issues, generalised motor delays all her life and very low stamina for walking, running and active play. Can I get anyone to look at this? Not a tiny bit. They just say it's unrelated because - and this is even better - "if it were an issue I'm sure someone would have picked it up already". Because that's how medicine works, if it were real then someone else would have dealt with it, and because they haven't, case closed?!

I'm going to press more strongly for action next time I see the paed and I hope you get somewhere. It's at least worth eliminating in his case. This is not a paranoid parent of an asymptomatic child turning up and saying they read about dimples on the internet, this is a child with symptoms classically related to that very condition. Rule it in or rule it out! Hope you get somewhere.

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