Bec - thanks for establishing a group. I was sitting a few nights ago drafting a post asking all sorts of questions about what I need to be thinking about to get ready for school next year. In the end I didn't post it. I couldn't get the tone of it right when our DD will only face physical / fatigue / absenteeism issues next year. Cognitively and behaviourally school is going to be right up her alley. But with the other issues I'm struggling.
For example how am I going to 'convince' the school about how challenging her BJHS is and how actively it needs to be managed? When people meet her they are completely unaware that she has any problems and when we tell them how much therapy she needs / how much assistance she needs to complete certain tasks / how long it has taken for her to learn to do something as 'simple' as jump everyone looks at us in disbelief.
When they see how capable she is on her 'good days' they can't imagine that on other days she can't get out of bed. I have no idea how on earth she is going to manage the repetitive task of learning to write? Her motor planning skills are terrible and on her bad days they are non-existent. The amount of repetition she needs to learn a new skill ..... well there is no way she's going to get that in a normal classroom...... so how do I manage her teacher's expectations about what is reasonable for her to achieve. AAGH!!! And what happens when she's too tired to walk from her classroom to the hall for assembly
::I will now stop rambling::
I have just PM'd you the details of our OT. Let me know if it doesn't come through. Sorry I can't help on the PT / Theratogs issue. We use a public physio through our local hospital who is just fabulous - as was their OT who did our initial assessment. I'm so sorry you're having such trouble getting a good team of therapists established here in Sydney. You'd think with all the 'choice' out there in this huge city that would be easy but it's not. I wonder if you ring the Connective Tissues Dysplasia team at Westmead if they could give you a list of private physios that use Theratogs? Do you have an appointment yet with CTD? Have you started with your speech yet?
Cat - you have so much experience. Thank you for sharing all your knowledge with us. Interesting about your DH and the 'non stretchy skin' issue and the rheumy's interpretation of the diagnostic criteria. Our DD appears to have quite good skin - not overly elastic and she certainly doesn't scar badly. For that reason our paed questions whether she'll get an EDS diagnosis. But from my reading (and from previous comments from you) my understanding is that it's a spectrum. Our DD scores a 9 on the Beighton, has hip dysplasia and a family history of everything else EDS under the sun (migraine, severe varicose veins, brain aneurism) and yet she might be ruled out on non-elastic skin? Mmmmm. In the end if she doesn't have it of course that's fine but for long term prognosis and management I would like to know ....... particularly if there's a chance she has vascular EDS.
IBW- sorry to hear Jake is struggling with fatigue. I think a 9 day fortnight sounds like a good idea. With school for our DD next year I'm trying to get my head around how to manage fatigue. Lucky for us we're only talking about kindergarten.
Now must get back to work .....