Comments for Cheetahs In My Shoes

Comment on Does Ehlers Danlos Syndrome Make You Tired? by Jo

Jo — Wed, 19 Jun 2013 16:00:40 +0000

At least from our experience the doctors do not seem that interested. Too much focus on some bendy joints that physio will fix.
We had a nightmare to get a diagnosis. Very little support locally. I am having to figure it on my own. We have been to the well known UK centre.
These children most of all need understanding especially in the school system. That was one of biggest stumbling blocks.

Comment on Does Ehlers Danlos Syndrome Make You Tired? by Jenny; Cheetahs In My Shoes & Just Photos By Me

Jenny; Cheetahs In My Shoes & Just Photos By Me — Wed, 19 Jun 2013 15:50:31 +0000

My daughter drinks loads too – I hadn’t thought of it but she’s like a flower who needs watering, very regularly! There is so much more to be discovered about EDS but with so much variation in presentation between children it must be an incredibly hard challenge for the doctors involved.

Comment on Does Ehlers Danlos Syndrome Make You Tired? by Jo

Jo — Wed, 19 Jun 2013 14:49:07 +0000

http://slingsandarrowsofoutrageousfortune.wordpress.com/2012/08/16/balance-is-the-key-part-1/
I like this personally.
I can relate to what you say. I find enough fluids critical to coping with fatigue. Lack of fluid makes everything more sluggish. My two boys and us parents are affected very differently with this. The youngest being the most. In school enough fluid is harder especially if drinking is harder for you. We did have move to home education in past because of this. He was wiped out by 6 every evening and we had no life except for “school.” We were told that school couldn’t ensure he drank regularly. It was a private school with 6 children in class.
For me it is all about balance. He can now go the youth group. We can do more as a family.
He has to eat little and often. He burns up a lot of energy just being him.
My personal feeling is really not enough is known about how this affects children in particular.

Comment on Capacity Homework by Jenny; Cheetahs In My Shoes & Just Photos By Me

Jenny; Cheetahs In My Shoes & Just Photos By Me — Wed, 19 Jun 2013 11:02:22 +0000

I am. He’s a dude.

Comment on Capacity Homework by Jenny; Cheetahs In My Shoes & Just Photos By Me

Jenny; Cheetahs In My Shoes & Just Photos By Me — Wed, 19 Jun 2013 11:02:08 +0000

I kind of guessed you’d get it xx

Comment on Capacity Homework by Jenny; Cheetahs In My Shoes & Just Photos By Me

Jenny; Cheetahs In My Shoes & Just Photos By Me — Wed, 19 Jun 2013 11:01:52 +0000

Mary – I wish you were teaching him x

Comment on Capacity Homework by Jenny; Cheetahs In My Shoes & Just Photos By Me

Jenny; Cheetahs In My Shoes & Just Photos By Me — Wed, 19 Jun 2013 11:01:37 +0000

*sobs*

Comment on Capacity Homework by Jenny; Cheetahs In My Shoes & Just Photos By Me

Jenny; Cheetahs In My Shoes & Just Photos By Me — Wed, 19 Jun 2013 11:01:16 +0000

Thank you Joy – it’s just a bit of a stomach churner at the time

Comment on Capacity Homework by Jenny; Cheetahs In My Shoes & Just Photos By Me

Jenny; Cheetahs In My Shoes & Just Photos By Me — Wed, 19 Jun 2013 11:01:00 +0000

School said “oh, I wonder how we’ll file that…” *sighs*

Comment on Capacity Homework by Boo Roo and Tigger Too

Boo Roo and Tigger Too — Wed, 19 Jun 2013 05:25:47 +0000

What a fabulous way to help them understand capacity/volume, I hope he got brownie points at school for the 3D homework