i carnt keep watching dd do this how do i cope?

[trace2]

she had an other posture yesterday moring lasted 5 hours where shes stuck to side, as shes getting older shes awhere she carnt move it was so upsetting and she still didnt cry shes such a good baby! was just confussed i thnk?.

how do i stay calm for her? i just kept crying trying to uderstand why its all happing?, i know there child worse off than dd ,but shes my baby i feel like am failing her.

BIG hug.
You can cope, you can also cry, the two are not exclusive. You love her and your her mum.
Her not crying when shes stuck maybe its because shes grown up with this and to her is is part of her normalality. its harder for you than her in some ways. kep on loving her and bringing her up as best you can.

thank you! its just oh i dont know shes only 7 months old but very brave little girl

I really feel for you - it is so hard, and it seems so unfair, particularly when you see other kids who haven't got the same problems. They say that life doesn't give you more than you're able to handle, it just feels that way sometimes! Big hugs from me too!

keep talking. I get very frazzled when dd has a fit and it feels like the end of the world. And I hate bad things happening to her llike the botox and this friday 5 teeth out under GA.
Actually, feel slightly hysterical and very tearful thinking about it.

Big hugs for you trace 2 and needs more coffee.

trace (((hugs)))

Have nothing useful to add but just to say that you know where I am if you need to talk, email/facebook/do you still have my phone number?

Is dd still having the physio sessions?

hi wanbe thank you yes shes having pysio, i think shes see every pead at hospital now

trace- this may be entirely irrelevant but I read a paper this week about catatonia. Apparently it's not previously been recognised much in children (not very common in kids) and is more widespread in various conditions than previously thought. I wonder if it would be worth just asking a dr what they think about it (catatonia is when you get stuck unable to move/unable to initiate movement/or stuck in a series of repetitive movements). It's perhaps not that likely given her age, but might be worth asking them to explain why it isn't iyswim.

Its tough isnt it watching our kids go through things that are so distressing. For me it was seeing my son have seziures and it was worse when he became aware of them.

I remember frantically searching for all the answers and feeling a failure cos I couldnt fix it. Hy ds is my first and this really wasnt how things was meant to be.

Just keep on loving her exactly the way you are with plenty of kisses and cuddles

trace can you email me at donksank2@yahoo,co,uk so I can send you an invite for the Timetorant group.

yurt1 not read that but dd nero says he thinks what she does is unusal! but going to see him on monday really hope the recent tests she as , show some thing up this time?

lourobert yes its hard she as sezures to so yes seeing them is very frighting

2shoes thank you will email you later!