dd has an important apt in the morning. so tired & scared

[treedelivery]

My ds is 7. She has had strange backache spasms last month that caused her to scream and beg for help. She had such fear in her eyes.

Her MRI and xray were normal and the Dr thinks it is psychological. Tomorrow is a long awaited appt with orthopedics where we will either hear there is no cause at all, so her pain is psychologically generated, or that there is a problem, which means all the quirks her Dr felt he saw still stand.

I hope that makes sense.

I'm so worried. Maybe she is stressed or depressed or has mild aspergers or maybe she just has backache.

All I know is she isn't happy and I don't know what to do to help her. The waiting list forpsychologicalassessment is at least 6 months. What a long time to worry. I almost dont care what the diagnosis is. I just need one so we can start getting help.

Sorry to intrude, but I suspect I am going to become an sn mum soon and I know you will understand how I feel about tomorrow.

Don't have any helpful advice but want to wish you all the best for appointment tomorrow and that you get at least some answers. Hope you get a little sleep tonight

Can't really offer any advice - but good luck for tomorrow, know how fustrating it is trying to get a diagnosis. Really hope they can come up with something to help you x

Thanks. I'll be alright. Mostly I'm alright.

Our concerns have dragged on since December and it's so draining. Perhaps things will come to some sort of head with the last of the backpain consultations tomorrow.

After that I've no idea.I guess we'll have to muddle on until we get to the top of psychology assessment waiting list next year some time.

Good luck for tomorrow I hope they resolve something soon for your DD bless her.

I will say one thing is if they decide it is psychological ask if it could possibly be periferal nerve damage.

My DD suffers with back pain and stomach pain etc and she went through endless tests and cameras etc she was dx with periferal nerve damage as these nerves sit on the outside and can be damaged as a result of picking up a viral infection. DD had pharyingitis (sp) and glandular fever (twice) when she was young and her problems started shortly after. Her body doesnt shut off pain like it should so if I was poked it would be just that but if dd was poked you would think I stabbed her with a pencil!

Thanks coff33pot, and apologies for not getting back sooner.

You know when you just can't face writing it all down and.dealing with it?

The orthopedics was disappointing. The guy was rushed and a bit grumpy really. He.thinks.she certainly has a spasm that reduces her movement. He felt she perhaps felt pain very.sensitively, when I spoke to him about the theory that this is all psychology.

So we know no more than we did, and face at least another 5 months before the next opinion. That will be psychology.

Does anyone know if they are even able to make you wait that long? It's crazy! Just for a blooming assessment.

In the meantime she seems happier and more relaxed, looking forward.to home school instead.of stressing and.dreading going back. So at least I can do something for her, I can offer her a peaceful education.

Sigh. We'll be fine. But, god, dealing with the 'services' is a pain in the ass. And I work for them!

Tree, there sounds like there is an awful lot going on.

The key to not being -as- scared I'd information, which I guess is why you're frustrated at the wait.

Unfortunately your psychology appointment will be likely similar to the one you had today so you really do need to get investigating yourself.

I'm afraid I know nothing about the physical stuff but as for the others, you'd do well to research the symptoms of ASD, dyspraxia, aDHD and Sensory Processing Disorder and make a list of all those that seem to apply to your dd, with real life examples written next to them. This document will be very helpful to you in the future but if alarms you once completed, take it straight to the GP for a referral to a developmental paediatrician.

Get thee to physio. Whatever the cause.

And try posting on the hypermobility thread here, a lot of those dc have pains so there might be some helpful suggestions

Link here: www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_103651
to document about government guidance on maximum waiting times for camhs referrals suggests 18 weeks should be the longest you have to wait for an appointment - not much improvement on the 6 months you have been quoted but may help to speed it up to some extent if you can quote relevant evidence to them. I sympathise the waiting is awful. It may help to go back to your gp and ask if dd can be seen elsewhere any more urgently, also to speak to secretaries at local camhs and ask to be notified if any cancellations come up (presuming you would be able to attend with dd at short notice).

Tree, I'm so sorry I missed your OP while I was on holiday.

Sorry to hear the appointment was a big letdown as well.

I would definitely second Starlight's advice and add a little of my own, to create a 'history of dd' document, right prom antenatal through to the present time, including developmental stages, illnesses, all the bowel related issues etc. You can then forward this to each professional dd may be referred to and it saves an awful lot of time recounting the same details over and over. We have one for ds1 that we keep updated and it's been well received by everyone we've/he's seen.

Waiting lists are often that long or even longer in some areas and yes, it is a ridiculous state of affairs. We were told 18 months for ds's ASD assessment.

An alternative would be to approach somewhere like BIBIC to see if they think they might be able to help. I have just been on one of their courses today and we are about to have ds1 assessed by their OT team and a friend of mine, who has an as yet undxd dd, who is stuck in the NHS waiting list loop is also going to see them shortly. They do have funding for free assessments, but there is a massive waiting list and I don't think they are taking any more onto the list at the moment, so it would take even longer than the NHS route, but you can pay a reasonably small amount (less than £100) for an assessment which I believe can usually done within around 6 weeks. They really know their stuff and I know a few people who have been really impressed with them.

Are you homeschooling this year then?

Please don't worry or stress alone, you have my email address, so don't hesitate to mail me if you think I can help with anything.

Hello again, after a long time away from this thread. And from facing things, iyswim.

I have filled in the online form thingie Moose (hello my dear, how are you all?) - it's an awful long way buty that wouldn't matter is it was worth it.

I am approaching the GP tomorrow. I can't wait all these months for something that might be
a) crap or
b) good and to be told there is no problem (then I have wasted all my worry when I could have been enjoying her) or
c) good and there is a 'something' that needs dealing with, in which case I refuse to let her suffer longer than is needed.

I am not taking dd to the Dr. However I can't bloody face making a diary list thing of my worries. But I know he will say 'what are your worries' and I will sit there and fluff.

We are now homeschooling, and she was and is a bit sad to be missing the whole thing. I hope that passes, I guess it's to be expected.

Heavy heart!

We went on holiday - it took 3 days for her to relax and stop picking, fidgiting, loosing her thread mid sentence, falling over things etc etc. Once she did chill, she loved it and really made the most of it. Is that what other children do? Take ages to settle into things??

We went to London, she normally enjoys travel and such like. SHe was a broiling heap of anxiety and wound up behaviour. Once I took her aside, told her which platform, connection, time until the train and seat number - she was totally fine. Are others like this?

Are these examples I should bring the GP to try for a CAMHS referral?

Thank you to anyone who reads

Went to GP. He was a locum so didn't really know the score, but will look into it all for me.

Also had call about our youngest who hasn't had her MMR yet. We need to decide what to do , but a combination of this, with the childs dairy protein intolerance makes me nervous.

SHe is also 3rd from the top of physio wait list. Lilfe is a long wait it seems.

Oh to be rich and totally independent of all this stuff. Just throw money at a brilliantly qualified person and then access all the therapies and training that could ever possibly help. That would be much easier.