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Oh Bloody Hell I'm not ready for this!!!

(54 Posts)
MerryCouthyMows Mon 11-Feb-13 13:09:28

I phoned up the Paed about the Section 332 form (found out it was sent over to Education in October last year,so now need to contact SenCan...)

While I was on the phone, I enquired about how much longer I would have to wait for his Microarray results...

Turns out old Paed has left, results are more than likely back and in his file, not been contacted because old Paed left with minimal notice, threw dept into 'disarray', so 'may have been forgotten'.

They are checking his file and will be ringing back to tell me results if they are in his file.

I'm not ready for this!!!

If they have found anything, it will be not just what is causing HIS disabilities, but also what is causing DD and DS2's disabilities too.

I'm shaking that I may finally have an answer after 15 years of stress.

What if nothing showed up? What if something DID?

Fuck, I didn't think I'd feel like this about the results. I've been waiting for answers for so long over 3 DC's that I thought I would just be relieved if they found an answer but I'm scared and shaky and nervous and just everything all at once.

I think I need some hand holding. Which is unlike me. I'm literally physically shaking.

lougle Mon 18-Feb-13 16:39:14

The DDD study is seriously delayed. DD1 was one of the first to be included in our area - 18 centres, 500 children per centre initially. The first 100 from each centre got an extra swanky test on top of the usual swanky tests the DDD is doing.

DD1's samples went off almost exactly 18 months ago, in August 2011. I phoned genetics last week and was told that very few results have come through yet, because they had far more candidates than they expected and it's taking far longer to analyse than they expected.

So, while it may get a result in time, it's not going to get you anywhere fast.

MerryCouthyMows Thu 21-Feb-13 16:33:24

Update :

DS3 has an appointment with the Preschool specialist teacher so that she can do an assessment to determine how much support DS3 will need at preschool for his statement.

So I am assuming that when the preschool panel met the first time, they decided that he will need a statement BEFORE he starts preschool, they are just deciding how much or little help to give him.

I'm hoping that he will get 1-2-1, as then he can go to any preschool.

DS2 : I now have the orthopaedic consultant's letter.

It states that he scores 8/9 on the Beighton scale, (would be 9/9 if he didn't have the kyphosis!), has kyphosis as a result of his Hypermobility syndrome, needs Physio from the head of musculoskeletal physiotherapy, orthotic inserts in his shoes, and probably OT as well.

So basically he is being re-referred back to all the departments that discharged him when he was 6yo, that shouldn't have discharged him.

I have got fed up with the unwillingness of my local GP to refer on to rheumatology, and have booked a PRIVATE appointment (costing £300!!) with Prof G for him in May. Meaning I have time to save up for it! Bye bye to my DLA for a while!!

I'm hoping he (and therefore the rest of us) get a diagnosis of EDS.

Been to GP today, if I write a list of my concerns about DD and DS2, he will refer them on for ADOS testing.

He's not happy about sending DS1 for testing - but I think that he may change his mind when he gets the letter from DS1's school that he has asked me to ask for.

And HE told me to film DD when she has meltdowns.

PolterGoose Thu 21-Feb-13 17:24:42

Couthy so, some forward steps, which is good news. But why won't the GP refer to rheumatology? Seems bizarre... Could the ortho consultant refer to rheumatology instead?

lougle Thu 21-Feb-13 18:35:44

Sounds like positive moves afoot though, Merry - well done! I spoke to the research nurse for my local DDD centre today. She said they may take another year before the first results are out shock

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