Tethered Cord Syndrome

[madlet]

Hi there,

Not posted for ages but lurk a lot. I hope someone can help me. My daughter has various issues, hypermobility, very low muscle tone, only learnt to walk at 3 and a half, and lots of genetic markers. Microarray tests have not managed to put a name to anything. However an MRI scan has shown her to also have tethered cord syndrome. She is having an operation for this in a few weeks.

Has anyone got any experience of this? Apparently she has to lie flat for five days! Any suggestions on how to get a (just) 4 year old to do this??

Any shared experience would really help me.

Thanks

Sara

The hospital should be able to advise, i agree impossible for most people but a 4 year old never. I hope someone comes with a better answer.

Good luck. x

If the hospital are suggesting a four year lie flat for five days then they will have ideas on how. Poss a body cast and maybe sedation?
So exciting for you that there is a treatment that might make a difference for your dc!

If the hospital are suggesting a four year lie flat for five days then they will have ideas on how. Poss a body cast and maybe sedation?
So exciting for you that there is a treatment that might make a difference for your dc!

Hi, not the same but my dd had an op aged just two that required her not to move around much after (it wasn't as strict as this as was only the first couple of days then no climbing or running rather than not getting up at all)
Anyway tehy sedated her the first day or so, she was on morphine for pain releif anyway which pretty much knocked her out so she didn't want to move around.

Good luck!

Thanks for all your advice guys, Yes very exciting that they may be help DD2. It has a been a real struggle to get here so as much as i am dreading the operation I am hoping it will bring about a real benefit to DD2's life. It isn;t a diagnosis for all of her issues but it is the first time they have diagnosed her with something!!

Thanks again

Sx