OK - back story. DD1 is HE this year as she has been developing some anxiety issues and generally not happy at school. She never really made friends and it seemed to be 'costing' her more to go there than she got back iyswim. She is 7. She is on a huge waiting list for a psychologists asessment due to some 'non-organic' pain in the summer, when the consultant thought she was 'not like other children' and referred her to clinical psychology. I personally believe she has a very high functioning asperger syndrome so you only see it on certain days or in certain situations.
Anyhow. I went to her GP a while back to see if the 6 month minimum wait for assessment list could be looked at. Could CAMHS help or was there a private option or could we go to another unit or whatever. I hadn't heard and the actual psychology department were evasive (at best) so I asked for a GP call back.
They rang back 40 mins later - brilliant.
Had talk about the lack of service, agreed it isn't good enough, discussed the awful predicament adults who need similar services are in, Discussed lack of private practitioners. GP will look to see if other hospitals (all at least 50 miles away) have shorter lists. Was sympathetic, wholst admitting there is absolutely no help for us in the meantime. The children's psychologist works half time and there is one in the whole fecking trust.
Then, as we were ringing off - 'and you will let us know about the MMR very soon. Goodbye'
ARRRGH. No I won't. I will let them know when I am ready. That is a conversation about a totally different child and not something this stressed, miserable and totally annoyed with the fecking NHS needs to be reminded of right now.
Why mention it? Why?
I know this is a rant and I know it shouldn't matter. But today it does. I've rung 4 departments and convinced/cajoled/become hysterical at various people to try get info about their stupid waiting lists and their stupid criteria. All because their service is shite. DONT start on me about one part of the service I do not actually want.
Apologies for the length. No one gets it do they?
Here are some suggested organisations that offer expert advice on special needs.
SN children
SOooo oversensitive today, GP made me cry. Am I loosing the plot?
treedelivery · 24/09/2012 13:37
this is spooky - when I was trying to speak to GP a few years back about my worries about delay in ASD assessment for my DS, the conversation ended with chasing up the MMR booster for him as well 
, GP was even less help than yours, and gave me a lecture about not "labelling". Sometimes people lose sight of humanity when they are chasing targets
The very strange thing is that the child the GP and I were talking about - my eldest - has had the bloody thing!!! 
She probably just got confused, or it popped into her head and out of her mouth, but just not today thank you very much.
Bloody hate having to deal with the services. Such as they are.
It's just marvellous how they are allowed to keep our children waiting for what amounts to a 14th of her life - but we can't show one minutes doubt or delay. It's so one sided.
Having been let down by a grand total of 4 NHS services in one week last week Tree, I totally sympathise and you are completely entitled to rant away. It feels completely one-sided, in their favour and we're left feeling like we are just a pain in their proverbials.
On top of those 4 let downs, ds1 has been discharged by his paed - who was supposed to be doing something about his digestive problems. Letter went to GP last week saying he didn't need to see ds again. This morning ds spent almost two hours screaming in pain in the toilets at school with an increasingly desperate HT checking on him constantly, was then sent home and spent the rest of the day screaming crying and saying 'mummy help me'.
Just a thought, but have you considered a BIBIC assessment? It's £45 per hour for an assessment (although it takes 2 hours to do), but they come to your home to do it and then send a comprehensive report. You can then opt for a further 2 hours at the same price for them to visit again, go through the reports and come up with a therapy plan. Apparently they can usually see you in around 6 weeks. We are planning one for ds1.
Oh Moose What is going on with his digestion? Could he have an ulcer or helicobactor? I had helicobactor and it was freaking agony when it spasmed.A simple stool sample, 2 weeks antibiotics and it's never happened again.
Any constipation? Now that I do know a bit about. Does he have any?
I looked into BIBIC - they said it would be something like £400, plus the expense of 2 days away and a trip to Somerset. Where would we find the money? It would soon be £600-£700
There is absolutely nothing in our area, even the nearest private psychologists are not taking new patients. They were 80 miles away!!!
I feel a bit trapped in it.
No constipation, just bouts of excruciating cramping and hours and hours on the toilet with him screaming in pain. We are having to put it down to inadvertent gluten ingestion, but we are soooo careful and can't identify a source. Don't think an ulcer or helicobacter is likely as the spasms are bowel and gut rather than stomach.
The flipping paed did a stool sample when ds was well and asymptomatic (typically he was fine when he had his appointment) and declared him healthy. We saw him again a few weeks back and he didn't even offer us anything to help ds with the pain/cramping or the reflux he gets. He told us to use over the counter gaviscon, but ds can't stand the texture, so despite loving mint flavour, we just can't get it down him.
All the paed would say is that his symptoms suggest malabsorption and in particular an inability to digest fats. He brushed off his anomalous blood readings (high B12 - in a veggie who wasn't being supplemented with it at the time 
- high eosinophils and raised blood protein levels).
I weighed him yesterday and he has dropped under the 2nd centile for weight. Paed said he wasn't concerned because he had gained to between the 2nd and 9th when we last saw him, but he just gaining and losing the same 7lbs whilst growing taller, so each time he loses, he's on a lower centile.
What we need is a proper referral to paed gastro, instead of to keep seeing the same 'coasting to retirement' community paed. I'm going to book him a GP appointment and ask for a referral, bypassing Comm Paeds - who incidentially have also let ds2 down recently.
Re, BIBIC, I've just looked and they don't have an outreach centre in your area, so that's why they'd want to you do the whole National Assessment Centre visit, which is big bucks. I'm so sorry, I didn't realise their outreach service wasn't national.
You would be able to get a private EP assessment for less than that, but it still wouldn't be cheap.
It's so unfair isn't it, if you can afford to go private you can get help for your dcs, but if you can't you just have to wait and watch them struggle.
At least dd is happier now you are homeschooling, but I imagine the impact of that on your family has been pretty tough? How is dd2 doing?
I have to say it doesn't really sound like food poisoning does it - although if his digestion is a problem perhaps his version of food poisoning would be different?
Yes yes to simply requesting the referral you want, very simply with no discussion. That is what I had to do with dd2. I brooked no refusal.
DD1 saw a private ep in Jan and it came to £2000 in total for 2 days with report. We simply can't do it again Those visits were to look at different information, she had the wischer [sp?] testing done and also a look at ther learning style and self esteem and so on. All was found to be either ok or very good or excellent. However I'm not sure the days really looked at the idea of aspergers or someother similar issue.
Are many 7/8 year olds still reversing letters/numbers? She reverses 5 and 3 and 9 pretty often.
I have that anxiety knot in my stomach. It's been there since...oh....about Oct of last year. I wonder when it will go?
EP should have considered ASD although they aren't qualified to dx on their own.
The WISC assessment will very often demonstrate a spiky profile in many cases of ASD, for example, ds1 has a big gap between his verbal comprehension skills and his processing speed, but then getting good WISC results doesn't definitively exclude ASD.
ASD presents so differently in girls that it's more easily missed by 'the professionals'. Have you read the book people recommend on here about girls and ASD? Hang on - will look it up ......
Right, I think Asperger Girls by Tony Attwood is the one most people recommend, but there's also Parenting Girls on the Autism Spectrum and Girls Under the Umbrella of Autism Spectrum Disorders.
Ds2 still reverses some letters and a lot of numbers (2, 3, 5, 6, 7 and 9) at 8 years old. The teachers had a big push on getting him to check his own work and fix any reversals last year and that seems to have helped a lot, but not completely cured it, iyswim. Whenever I try to raise it as an issue with them they just say it's not unusual or not significant enough to warrant testing. A friend of mine, who is herself severely dyslexic and also a dyslexia tutor feels he is most probably mildly dyslexic, but said it's highly unlikely we would be able to get it recognised by the school.
The thing is, there might not be a dx. There's so much crossover/comorbidity that it can often be difficult to pick apart the issues and come up with a clear-cut answer. Ds2 falls just outside the range of 'NT' but also just outside the range of 'not NT'. He has just been dx with hypermobility syndrome, but also shows signs of dyspraxia, mild dyslexia, auditory processing disorder, sensory integration issues and some ASD traits. None of it is bad enough for us to be taken seriously/be listened to by 'the professionals' or to get a dx, but together they present him with all sorts of difficulties.
We do what we can to support him and are slowly getting him help he needs to sort out each issue, but as you've discovered it all costs £££s that we simply don't have. The difference is that ds2 is a happy kid, he's not stressed out, he's a mid-range achiever and so I have to question how much it's worth pushing him through assessments and therapies.
The huge difference for you know your dd isn't coping and needs help and it's horrible when you can't get anyone to realise it and take you seriously. I wish I had some brilliant advice for you that would cut through all the crap and smooth your way to helping dd. In the absence of that, all I can offer is a friendly ear to bend when it gets too much or if you need to talk things through to work things out.
((hugs))
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