low muscle tone and community Paed appointment Weds - what to expect

[LargeLatte]

Ds2 (5yr) was referred by the school nurse to Community Paed as she has concerns about low muscle tone and developmental delay.

Any info on what to expect at this first appointment would be much appreciated.

Dh and I have concerns that ds constantly complains that he is tired if we have to walk any distance. Yesterday we went for a walk in a country park where there was play equipment and by the time we finished our walk he was too tired to play so I know he wasn't just trying it on when he kept saying he was tired. I am guessing this would be releated to the low muscle tone. DH is quite convinced that if we just made him exercise more all problems would be resolved. Am I just going to be really embarassed on Wednesday by the dr telling me I have let my son become a couch potato and he should be out exercising more and that's the cause of all his problems, or could it be something more.

Anyone been in a similar boat?

I love piedros. we've had a whole rainbow of colours. 6 mos is utterly crapola.

Dd2 got her first pair of AFOs last week. After 8 years!

We're flying back to the uk on Friday to get some of this spring stuff.

dd3 currently has the baby pink velcro ones, I don't think they'll stay baby pink for long though usually she has the bright pink ones, some how we've never managed to go down the black route as her old school wanted. How are the afo's going? We're seeing the orthotist again over easter and have thought about asking about them for dd3. I'll keep my fingers crossed the beautiful blue skies we have this morning hang around for you for friday but it's the start of the school holidays then so you never know

LargeLatte Is it CPOC in Essex? They are fantastic there if it is. DS has been going for a while. :)

Its the CPOC at Lexden hospital in Colchester.

I have no idea about the best places to buy shoes - we have just always gone to Clarks because he is an H width and I didn't know where else we could get shoes wide enough to fit :) You'd think with feet as wide as that, balance should not be an issue!

Off to Google Brighton score??

He can't do any of those things.....my first ds on the other hand would score highly and especially enjoys freaking us out by pulling his skin out way too far.

Yes thats the same place with Dr Annette Grounds. They specifically won't give a dx of any developmental problems like asd but she gives a nice report with him graded for all of her visual and listening tests. Then they test the retained reflexes. It is all fun games. DS thinks it is fun! We are 2 hrs away but it is worth it definitely.

DS has dyspraxia, sensory processing disorder, auditory processing disorder and is being assessed for probable ASD. The slumping and slouching everywhere rings a bell with me as does the eating, writing etc. It definitely sounds like some OT would be good for him to strengthen his core.

I had no idea that there was anything until he was in Y1 when the teacher suggested that him rolling on the carpet and his writing wasn't quite right. My mum is a retired primary teacher and she didn't even notice!

Thanks Ben10 - Dr Grounds was the lady I emailed about him and she wrote a very quick and kind reply so I am looking forward to getting the referal through for her. Just need to get Weds Paed appointment out the way first.

Good luck for tomorrow - definitely take a list of all of his milestones, birth story, anything you can remember. Our first paed appt was her going through all of this while she watched DS playing out of the corner of her eye. She also got him to do some drawings which she kept. I asked her outright what she thought it was when she said that he would have to be referred for further assessment. Don't feel embarrassed about asking as at least then you know what you are possibly looking at so that you can come home and do loads of reading up like I did

Just thought I'd pop in and say today went ok. Paed disagnosed dyspraxia and refered to Occ Therapist. She said he did not have hypermobility.

We're both fine, and looking forward to getting an appointment from Dr Grounds.

...who I know is not the OT btw - as said above, that referal is going through separately (I very much hope).

Great news not about the dyspraxia, obv, but glad you are getting somewhere and now have two useful referrals in the pipeline!
Our OTs have always been great.

Fantastic that you have got answers so that you can start on OT and not had to go round the houses to get a dx. :)

Have posted another related thread - should've just added it onto the bottom of this on www.mumsnet.com/Talk/special_needs/1439664-Fans-of-Dr-Grounds-at-Colchester-CPOC-unit-I-know-youre-out-there-step-forward-I-need-support