Twitchy foot

[Tegans Mama]

For the past few days Tegan's right foot has been twitching. She doesn't have a lot of movement due to her SB, but this twitch started when the physiotherapist came and did some weird stuff with her legs that we are meant to be doing SIX TIMES A DAY and I have no idea how to do it - plus she cries, it looks stupidly uncomfortable and has made her foot start twitching!!

I am taking her to the doctors this afternoon to try and find out what it is. It only happens when she is awake - so I am thinking maybe it is caused by her trying to move? It looks so odd!

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Also wanted to say that I noticed something today. When she had her EVD (external drain) in, CSF would gush out when she sneezed/coughed. I have noticed that her soft spot sometimes goes hard, and then she will cough/sneeze/laugh and it will go soft again!! The pressure is set very high because her hydrocephalus is very mild - docs thought she might cope without a shunt, she coped for a week and a half and then they put her shunt in Asked the neuro's and her soft spot going like this is normal, just funny

 

[JASMAK]

Or maybe her muscles are just twitching from the activity? I would def ask about it.

 

[Tegans Mama]

Have been to doctors earlier, who said it was normal. If it gets worse we have to seek the opinion of the neurosurgeons but otherwise, leave her be!

 

[Emmea12uk]

toms is the same - it goes raised when he has a fever! It bounces when he laughes lol

 

[Tegans Mama]

Lol it is very funny isn't it Em? Does Tom's shunt move? Tegan can get hers in her hand and pull it.. Ewwwwww.. but we asked the neuros who said because she pulled her first one out (!!!!!!!!!!!!!!) they put an extra long stem on this one. And it won't move as far. Lol

 

[Deb&Matilda]

just thought id add it is normal for them to drain too bmuch then they cry or sneeze and thats why you are meant to turn the drain off when they cry so they dont over drain which can be danergous xx even though it is normal for soft spot to change as long as it does bludge or also go completly like matildas did once when she had an infection and you could see all skull lines and a real dip xxx

 

[Deb&Matilda]

ps i hate evd's we have had too have 3 now and hate them soooooo much xxxx

 

[Emmea12uk]

how do you control the drains? tom's is just a standard one and he wouldnt be able to grab at it if he tried. I doubt he will ever know it is there. And i cant change it. What are yours like debs and lea?

 

[Tegans Mama]

She means EVD's em, the external drain that drains into a collection bag

Tegan's soft spot is dipped and you can see the skull lines sometimes, but we have seen neuro's about it and its not too dipped The pressure on her EVD was as high as it would go, and it hardly drained anything which is why she only has a small shunt on very high pressure x

 

[Deb&Matilda]

matilda's evds never drained a lot but as she gopt older they drained more which is obviously normal. Matilda shunt is really well in her head so you can hardy see a lump or anything so apart from her scars cant really see it xx

 

[Emmea12uk]

tom is a hairy monster so you cant see his. but there is a little lump.