aibu to have sent paed this email? will he think im nuts!

[Chundle]

Ok guys. After a year or so of being unhappy of progress of dd2 treatment at current CDC we saw her paed last week who by the way is totally fab. He mentioned that the cdc are good with development delays but not so good with developmental disorders which is where dd2 falls.

Anyway she's on looooonnnggg waiting list for ados test at cdc but I'm not confident in their ability particularly as he said they don't get kids like dd2 their often as she's quite HGH functioning.

Anyway to the point, I found his email on google and emailed him saying that have mulled over his comment and is there anyway dd could be referred to a specialist centres that deals with kids like her and that we are prepared to go out of county if necessary as we would like answers by time she starts nursery in Sept. I said that we would like to remain under his care as he's fab but we can't wait years for an assessment at our local cdc.

Is this a fair thing to ask and what do you think he will say if anything? Has anyone else been referred out of county?? She's being looked at for HFA and our cdc mostly deal with CP and more profound disabilities.

We do have an app with Daphne keen in august time just in case but would like to see it through the nhs too.

Thanks if you got this far. I'm hoping paed doesn't think I'm an insane mother!

Goodness knows! He dx my dd1 with ADHD but she was older so wasn't part of cdc. He says she has many elements of triad od whatevers but he can't comment on her play skills as hasn't seen them. He needs to send her to different people to do the ados as he doesn't do it. We've waited four months already and are still being held on the thinking list so not sure when we will make it onto the waiting list!

I shall let you know the reply if I get one, wishing I'd emailed through PALS now may have got quicker response

Thanks. It's a dev paed we see now , will see what he replies

It's worth a try but I guess the problem is that there are waiting lists stacked up all over the place for these types of services. From what I have heard DK gives you a really full report/dx so you really know what your child's issues are.

BTW DS is 6.9 and is HF, top group for reading in his year and they used the ADOS last month to dx him. Things like his inability to tell a story using the figures provided helped with that though

Thanks guys. Will see what he comes back with and suggests.

Sounds reasonable to me. I email the girls pead often, and have requested physio, OT and CAMHS referrals via email, she's always done it

Ah that's ok then :) tried to word it very carefully so didn't sound too bad

Sounds reasonable to me too. You'll be described as a 'concerned' parent (like I was)

Www.hypermobility.org - check she is hypermobile or not. Fab team at Gt Ormond St if you suspect she is but she may be too young for a referral - they do do private clinics too. Info at website. Hypermobility Syndrome can mimic dyspraxia.

Haha wetaugust I have a feeling I already have "irrational parent" label.
Practically strangely the paed did mention that she is quite bendy, I had a look on the website her thumbs do bend all the way back to her forearms, bit hard to tell with knees and elbows as she's a chubby toddler :)

A physio would be able to tell how bendy she is but the team ay GOSH are the experts. Many children have sensory issues eg hate loud sounds, fidget, dislike being near others .... Check out the message board at the HMSA website. Other early symptoms include marked veins eg across nose due to translucent skin, easy bruising, pain, delayed mobility development incl bottom shuffling, sitting in a W on floor ie feet either side of hips, flat feet, being near or on the autistic spectrum, pulled elbow ..... I could go on! I have two hypermobile children and am myself. I had a late diagnosis so am keen to make sure children are not labelled "lazy" like I was! A clue would also be if any older family member is clumsy, has loose joints, flat feet ....

Thanks practically. My dd1 totally isn't bendy (but is clumsy!) She has ADHD, very translucent skin across nose and across chest all veins visible (her paed has noted this). Dd2 is the bendy one autistic traits normal skin!
Family history of my mum and sis having hypermobile joints.

May be worth asking to see a geneticist to check your family's collagen genes due to your family's symptoms. There is a specialist team at Harrow for complicated hypermobility (Ehlers-Danlos) cases - we have been there but so far our collagen testing was OK - we await medical advances in testing other collagens. There are many reasons why people are hypermobile - see HMSA website. First point of call is local geneticist. And I am tempted to suggest a referral to GOSH Hypermobility Clinic - they are world famous! they do both nhs and private. Dd1 is clumsy - are you sure she is not hypermobile in a few joints eg hips? In hypermobility, the proprioception sense can be affected and it is tricky to keep balanced with hypermobile joints.

Oops I have written an epic!

Thanks practically I shall,be testing dd1 in the morning!

OK?

Yes thanks. Dd1 seems ok, she's very sporty and can do the splits with ease and bend and put her hands flat on floor but hard to tell if this is from the stretches she does at martial arts and football or from being more bendy. And she's not very inclined to let me bend her joints around :) I have dd2s physio ringing in next few weeks for a general review so I will discuss it all with her then and suggest she reviews them both. Thanks for all your help much appreciated