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Right help me plan for next Pead appointment

(5 Posts)
lisad123 Tue 20-Nov-12 21:54:38

Both the girls are under the same consultant. Both have a dx of autism.

We have main concerns about dd1 who has had no end of trouble with her legs since she was little. She had club foot as a child which was corrected by physio. She didn't walk till after her 2nd bday, and ever since has had ongoing leg pains which are bad enough to wake her in the night. Physio noted very tight tendons and a "catch" when moving ankle quickly but not all the time.
Personally I have always thought there is something neuro going on with her.

Dd2 has hypo mobilty. She also has noted raised heart rate but is only ever noted when she's ill. She also develops a rash that doesn't blanch when pressed. I feel she may have EDS.

Also think dd1 likely to have EDS too due to very stretchy skin (noted by genetics team).

Now I have asked to see pead to discuss them both, we have been told someone will phone on friday to make an appointment. I have also been told I will have an hour for both girls.

So if you were me what would you be asking for?

lisad123 Tue 20-Nov-12 21:55:51

Also should say we are concerned dd2 has ADHD but she is only 5.
Also noted is tracking issues. Everything is done right to left!!

lisad123 Wed 21-Nov-12 10:17:41

Morning bump

whatthewhatthebleep Wed 21-Nov-12 10:52:39

I don't know much (anything really) about some of these issues you have but wanted to HONK for you and a successful appointment when you go.

Maybe make a detailed list for each DC and this will certainly help when you get there, so you don't come out kicking yourself for forgetting anything.

Maybe keep a record of walking/exercise activity for DD and this may help identify levels of pain/discomfort and regularity, etc
You are maybe doing all this already anyway though, good luck and I hope it goes well and moves things forward for both your DC's smile

Lougle Wed 21-Nov-12 11:24:18

Ok, if I were you, I'd be looking at the diagnostics for each condition you suspect, and make notes about how they apply to your DDs. Any little things you notice between now and the appointment, too. Also, a diary of when the pain occurs - is it 3 days after swimming, for example.

As for what to ask for, again look at the diagnostic processes.

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