Welcome from Scotland

[Guest guest]

Hello everyone!

Time for a wee introduction. My name is Louise, I'm a full time student nurse

and my 4 year old son has OSD with a tethered cord. He was born with

sacral dimples, one of which you couldn't see the end of. He got his first MRI

at about 10 months old, and after his 1st birthday the neurologist told me what

he had....

occult spinal dysraphism

tethered cord

mass of tissue around the nerves leading to the bladder and bowel

cyst of spinal fluid in the spinal cord (most recent MRI showed it had grown a

bit)

leg length difference (1.5cm)

the sacral dimple that you cant see the end of, did used to go all the way into

the spinal cord, but sealed a " wall " inside the tube in-utero thankfully.

He was 4 at the end of November. He has only recently started using a

potty/toilet for urine, but still uses nappies for faeces.

His docs have pretty much been saying " wait and see " to me all along... they

don't know 's illness so I'm sure they just don't know WHAT they're meant

to be doing so the " wait and see " card is always played to me. However what

I've managed to read is that supposedly detethering is the way to go as once

problems arise they are permanent....?

Even though I'm a nursing student it's all baffling!! So much medical jargon,

different words for things and conditions that mean the same thing etc...

His neurologist saw him on his 4th birthday and that was the first time she'd

seen him since diagnosis, tho s' consultant peadiatrician sends her his

MRIs etc. She lives in a different city (there's no neurologists in my city).

She has referred to speech and language therapy, to physio and for a

child IQ assessment, so we can see if 's behind intelligence etc for his

age, and then work with his nursery (he goes full time since I'm in full time

education) to try and get him ready for school after the summer. However if

need be we can leave him from starting school for another year.

He had IUGR which is Intra-uterine growth restriction. He didn't grow very well

and I ended up having him at 38 wks weighing 4lbs 4oz. He was in intensive care

for 1 night due to low blood glucose and low body temp, then was in special care

for another wk, as he also had no sucking reflex and was still not able keep up

body temp. IUGR can cause lesser IQ in itself.

I just feel like I'm fighting a losing battle... I've read up tons on the topic

of OSD and tethered cords online, and yet I'm still confused by it all - as

's docs seem to be themselves!! I'm looking forward to speaking and

contacting others who have some of these conditions as obviously there's no

other kids in my area with any form of TCS. I live in the Highlands of

Scotland. ALL of 's docs have NEVER come across it before.

thanks, and a warm ish Hello to you all!

Louise xx

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