3 issues after DS diagnosed with AS - appreciate help

[Mumfun]

DS was finally diagnosed with Aspergers in February (after waiting 7 months for an assessment from request). Our CAMHS only does diagnosis. They provide no ongoing support. For that we rely on a borough based support unit (London borough)

1. We have repeatedly requested support for DS (through the school) but nothing is happening and the borugh unit is not coming in to see him. We are lucky in that the school is fantastic, proactive and very helpful with good resource level in his classroom at present. But there is some stuff the school and we are at a loss to know what to do.I dont see anything happening till September which just seems too long. Is this all reasonable in the CAMHS/further support world?

2. DS has always seemed to have a spotty bottom for the last couple of years. This was combined for a while with very soft/sloppy poo. This has now improved to looking normal but the spotty bottom is back with a vengeance. Should I be looking to go dairy free with him? ANy other suggestions?

3. I am very used to DS ways. I dont find him particularly difficult to live with - but he is definitely quirky and can be challenging. Should I apply for DLA. I dont feel that I really should qualify but he may become more relatively challenging in the future. ANy thoughts?

1. I have no real experience of CAMHS.
2. Is he completely dry? Dd2 always has a spotty bum.
3. Yes you can claim DLA, we get middle rate for dd1 (AS).

Sorry i couldn't be more help.

If his disability makes him more challenging that he would be without it, you can get dla. You don't 'think' your life is tough because you have adjusted, not because it isn't, and just because other people have it worse doesn't mean you are not entitled iyswim.

How old is he?

he is 6. And he is totally toilet trained if that is what you mean by completely dry, Marne, thanks.

Mumfun,

With regards to question 1 does your son have a Statement in place. If not I would seriously consider applying for one of these documents asap from the LEA as this is legally binding as well. Am glad that his school are helpful at present but this may not always be the case at all particularly the higher he goes up through the school system. Have a look at IPSEA's website www.ipsea.org.uk

Would also apply for DLA. Cerebra's website may help in that regard; do not complete the forms without any form of outside help. The langugage couched on such forms needs to be specific.

Have you considered coeliacs at all? There is a skin condition called dermatitis herpetiformis which is associated with coeliacs and it is commonly found bilaterally on the body and often on the buttocks. If you google it and select 'images' from the top of the google search results page you can see lots of pictures of what the rash/spots look like.

If there is a possibility of it being this, your gp can order a simple blood test in the first instance.

We are currently awaiting the blood results for my ds1 (verbal dx of Aspergers and awaiting formal assessment). He has never had what you would call 'normal poo' very sloppy and often pale in colour etc. Although it goes through periods of improvement and apparently that is normal for a lot of people who have coeliacs.

In our case, we took him off gluten at the gp's recommendation and found a lot of his AS behaviours were massively improved. Unfortunately, we then had to reintroduce gluten for 3 months before he could be tested for coeliacs and found he was much worse both in AS and digestive terms. So don't try removing gluten from his diet first to see if he improves, as without gluten in his system the test will come back negative due to none of the relevant antibodies being present.

Thanks for the replies

1. I will apply for DLA
2. I am keeping statementing in mind. TBH CAMHS warned us upfront that it is very difficult to get statemented in our area. There is a child in DS class that anyone would recognise needs statementing and one to one assistance and they are still struggling to get him statemented.
3. I will look into the allergy testing thanks.

We have a coeliac in our family. Have googled that dermatitis condition and it doesnt look like DS at all - he has no blistering.

I have been thinking about trying gluten free and also dairy free for both DS and other child as they both seem to have slight issues.

I think Ill try to get DS tested first to give us more indication of what to try.

Hi Mumfun

Just got our results back from the blood test this afternoon. He came back negative for coeliacs, but the gp seems to think due to him having a d&v bug a couple of weeks ago that resulted in him barely eating anything, let alone gluten, for about ten days, the results might not be definitive. We have booked a consultation next Monday to discuss what to do next. Fortunately our GP is lovely and is aware of the effect gluten can have on some children with AS, so she didn't just say, the test was negative and that's an end to it. Even if he's not coeliac, we will still be removing gluten from his diet asap - he was a different child when he was gluten free and I was sceptical about the link beforehand, so it took the question of coeliacs being raised by the gp and paed for me to give gf a go.

To be honest, you will get warned in almost every area that its very difficult to get a statement. I think they do it to try and put people off. You really have to know the system - or know someone who knows the system iyswim. There are some lovely people on here who are really knowledgeable about it all and give excellent advice and support.

Good luck.