New year, new strategies. We're ready for the next level, but where to start?

[popgoestheweezel]

Still waiting (waiting, waiting) for Camhs appt for ds (5.8). Paed has sent letter to gp saying he has features of pathological demand avoidance and we are sure it explains him perfectly.
So, we have worked on the vitamins side of things and he is taking behaviour balance, magnesium, zinc, EPA omega and multi vitamins. The supplements have had a hugely positive impact on him. He has a good diet already too but I am going to work at getting more protein into him.
He's also having a weekly bentonite clay bath and epsom salts sometimes too.
He is having extra help at school in a social communication group which is great but I feel that we perhaps need to delve a bit deeper into the causes of his social communication symptoms iykwim.
I have read up quite a bit about retained reflexes and sensory processing. I have done the inpp questionnaire and they have said they can help and outlined their fees. Id be happy to pay if it will help ds and they do seem to be well regarded. However we are about 2hrs from Chester so it is a bit of a trek. My other reservation is that, due to his PDA, it is very difficult to get ds to do anything and we will struggle to get him to do prescribed exercises.
As an alternative I have contacted a local occupational therapist who is qualified in sensory integration. She would be able to observe ds in school and we would be able to go to her for therapy on a weekly basis (so she would take more responsibility for getting compliance. Hopefully, as she is not worn down by the daily grind of manipulating the demand avoidant, she'd have more energy than us).
I also wonder about his auditory processing as he hardly ever responds to his name (although that could just be him avoiding the anticipated demands), and also takes ages to process a question even though school say he is bright and has very good understanding and a remarkable memory.

So, I guess the questions here are:
What to focus on; auditory processing, retained reflexes, sensory integration or something else I've not thought of?
Where to go to get the expert help (we are in the east midlands)?

pop re therapies I think you have summarised the difficulties very well.
Unfortunately that is exactly the case; and only a charlatan will claim to be able to cure, improve or have any definite answers.

However, any competent professional will admit that much of their treatment is a 'try and see what works' as individual children do respond differently to therapies. And any competent professional will agree that some 'alternative/edgy' therapies do have their place.e.g. cranio-sacral was regarded as a bit woo-woo up until recently when new research is beginning to understand how it might work

I am surprised that you cannot access an OT with the competencies you describe through the public service?

CornSilk - what about multivitamins? Or Epsom salt baths?

well he won't actually have a bath even though I've bought the epsom salts...he's on behaviour balance though. Not sure supplements what to add to it.

CornSilk / Lenin - There's a retained reflex therapy program outlined here

A lot of people (on this board) have had success with reducing their child's anxiety by doing the first exercise (Chair turn - eyes closed)

(Yes, I know it sounds crazy :) )

Wannabe, our school nurse has referred us to OT long ago but the referrals team said wait until we have seen paed (and now camhs too) before they will refer so we could be waiting forever if we hang on with the NHS.

Cornsilk, ds resists baths too, we have to manhandle him in screaming most times (hence only manage it about once a week) but he will stay in OK once he has got used to it.

thanks will try that

Wannabe - I think most OTs don't offer what Pop's private one has.

I know my NHS one only 'offers' the listening therapy. But they certainly didn't offer it to me. My friend only got it after begging and waiting about a year.

We get the bentonite clay for baths from detox people (where the behaviour balance comes from). We ordered a heavy metals testing kit too and it came out that he was really contaminated. We have yet to retest and find out if it has got any better but will do when we get to the end of the pack of bentonite.
Immediately after his first bath he was totally wired and edgy. The day after he had a terrible morning in school- constant strops and crying, refusing to participate in anything or look anybody in the eye (I was volunteering so was with him to see) but his teacher commented that she 'didn't know what had come over him in the afternoon. He was absolutely brilliant and did some fantastic writing.' So I feel that it certainly did something.

What is a reliable test to find out whether a child has heavy metal poisoning, gluten intolerance, lacking in certain minerals etc?

Don't know How reliable the test is for heavy metals but it's just mixing a powder into urine sample and checking colour against a chart. Pretty low tech but maybe gives some indication.
I think maybe with food allergies an elimination diet is the recommended way (generally advised to consult doctor first though). Cut out suspected allergens for a period of time (not sure how long prob couple of months) then reintroduce one allergen at a time and note if there is a reaction.

Checking for gluten intolerance is really easy. Cut it out for 2 weeks and then reintroduce it.

Gluten is not a major food group, and carries no nutrients the body needs.

Thanks POP and indigo. What difference would you expect to see after two weeks without gluten? We are on day two....
Where did you get the heavy metal test from?

Thanks POP and indigo. What difference would you expect to see after two weeks without gluten? We are on day two....
Where did you get the heavy metal test from?

When we gave DS gluten after being off it for 2 weeks he got a very sore tummy - sore enough for him to not want to have gluten ever again :)

You'd also hope to see improvements with his bowels while he was off gluten.

This isn't the most scientific test. But it didn't involve any money, any waiting - and most importantly - any blood tests :)

Ds is an absolute gluten monster. His bowel movements are pretty regular though.

Indigo you talk a lot on here about zinc and magnesium. Did you test your dc's for a deficiency in those?
(ds is also a humous and peanut butter monster and I understand those foods are good for z and m)

Thanks for taking the time to answer my q's

No, I didn't test for anything. Just gave it to my 3 and noticed the difference. Most especially in DS2s behaviour.

Also a lot of people here rave about behaviour balance, which contains zinc and magnesium.

And there have been quite a few studies done on zinc and magnesium and SN.

Does he ever get a sore tummy? Stinging wee's? Constipation? Diarhear?

Indigo I had a look at the exercise you linked to- are you familiar with the 'Astronaut Training' sensory programme?

His poos aren't perfect all the time, but I wouldn't say they're abnormal. He's fairly hypo-sensitive so rarely complains about pain or discomfort, esp something chronic. He might remark on an acute pain though.

Wannabe - I'm not familiar with that. But I know that the first INPP exercise is the astronaut which is the spinny chair one.

However my kids did a slightly different RRT and no astronaut :)

Oodles - bring addicted to gluten is one red flag to being intolerant of it - but only one. Can't tell from what you're saying here if your DS needs to be GF or not - but an awful lot of kids with ASD do.

Am watching this thread with interest. We did AIT at the sensory clinic indigo has highlighted, however it is the cheapest and I think it was for a reason. It was a very bizarre experience and although I don't regret doing the AIT, it did bring DD2 on a bit, but I am now unable to do any other listening therapies for at least 9 months after the program.

Before AIT we had done 4 lots of Therapeutic Listening which worked well for DD2, although when off the program she did lose a few skills she had gained. I was hoping AIT was be more permanent. We go to Hemispheres for RR and will be doing Listening Program soon hopefully.

It wasn't a very professional clinic, it was a ladys lounge. At the end of the session she and her husband drove to the main road with me following so I could find my way. They stopped at a farm nearby and gave me £20 to go and have a nice time with DD2 like my mother would do. It was all very strange, although not a total waste of time.

Am very interested in Tinsley House though.

AIT has certainly been permanent for my 2. DS did it 3 years ago and his hearing is still fine.

We went to the Sound Learning Centre in London, which is very good, but very expensive.

Sorry - it was only 2 years ago.

Oodles, the heavy metal test was from detox people www.detoxpeople.eu/index.php?l=product_detail&p=
As far as bowel regularity is concerned you should be looking for going at least once a day (preferably once for each meal consumed) and for stools to be sausage shaped. The vast majority of people dont go often enough. Check on the Bristol stool chart en.wikipedia.org/wiki/Bristol_Stool_Scale type 4 is the ideal. Sorry for tmi!