Anyone tried increasing sulphation for autism?

[Jimjambells]

New Years resolution. Epsom Salts as recommended by Rosemary Waring at Uni of Birmingham. I can't add them to the bath as ds1 drinks the bathwater, but I have heard that you can get pharmacists to make up a special cream. Has anyone done this and know what its called? I have a feeling I'm going to be entering blank look territory when I go to the chemists.

If you contact your local hospital's pharmacy they may have a 'specials' department that can make this sort of thing up for you. Being the NHS (!) they may not want to deal with you directly but you could get your GP to contact them on your behalf. There are various other parmaceutical companies that can do this sort of 'bespoke' service for you. Boots has one, or at any rate it did when I last worked for them 5 years ago. Contact their head office number in Nottingham and ask to be put through to Medical information. Call yourself Dr Jimjams! Its not a lie and it might help . If they can't help you, they may be able to give you a contact number. I think the numbers of the 'Specials' departments is is the back of the BNF, but I have left my copy in school and can't check. Not sure what you would do about the costs involved....and it could be very pricy.

As a second line of attack, what is the stability of epson salts is something bland like aqueous cream?

hth

oh heck that sounds complicated- I thought the local corner chemist would be able to do it Really I'm being lazy I know there is some information out there somewhere and I kind of know how to find it- just hoping someone else had done all the hard work already

Thanks though. Hope you're enjoying your holiday. DS1 is awake half of every night at the mo- he's not busy enough during the day. Begining to wish I'd persued the melatonin. Still I have to renew my DLA soon so I will use this week as a model. Luckily he has a nursery party this afternoon.

They might be able to do it, I suppose, since the epsom salts aren't a 'drug' as such. It just depends on how stable the ointment would be. Most excipents are added to make sure that the compunds' shelf life is satisfactory. Would epson salts decompose??? My chemistry isn't up to much!

We are now ready for Christmas, it was delivered by Sainburies this morning! An ds had is twice yearly haircut yesterday. Poor dh has to take him, my nerves aren't up to it!

The holiday is great, advantages of teaching! I'm looking forwars to next term, as I'm going to do a special needs training day....not enough specialist teachers in science etc.

Hope you are yours have a great time over Christmas.

Jimjams, I'm certain you will have seen this already judging by the URL, but I thought I'd post it anyway just in case. I'm sure you've got loads of spare time for stuff like this (not).

Have a good time if I don't "speak" to you before Christmas; I hope that your ds1 will get some enjoyment from it this year.
xx

Just wondering what you use it for??
P.s my ds2 is on melatonin now

I haven't seen that tamum- so thanks! Wish I was good at that sort of thing - I dread to think what my attempt to make that would end up like!

SPACLINE- it's apparently reduced symptoms in some children. I think there is a simle test you can do using paracetamol to see how well the sulphur trasferase system is working. It's all rusty but I think you collect urine so many hours after having parecetamol. I think one sign of a dodgy system is if paracetamol doesn't work very well in your child. It's never worked very well for ds1- which was why I started to use homeopathy in the first place. I've been wanting to try this for a while, but wanted to do it when everything else was stable so I can tell if it works.

Theres a little bit more info here:

osiris.sunderland.ac.uk/autism/durham95.html

or for more info search for Rosemary Waring University of Birmingham.

Was just about to say that this is something I've heard Paul Shattock speak about. It was a long time ago now so I can't remember the details but it must be on the Sunderland link you just gave. I don't know anyone whose tried it long term, I think quite a few tried after seeing PS due to motivation but don't know anyone who saw great results and therefore have kept it up. I'll ask my more knowledgeable biomed sources just because I'd be interested to hear if, why or how long any of them did it.

Here's the paracetamol abstract- I can access the whole paper if anyone wants it? That's the only paper that comes up on Pubmed if you search on autism and sulphation at the moment.

oooh thanks davros and tamum. oh well got to be worth a punt.

DS1 is fine on apples though. We did a month's trial without and no difference at all-except that it took ages to persuade him to eat them again (and as this is the only fruit or veg that he knowingly eats that was a problem!).

Wonder what the compound is in peanuts that turns him into a loon.

Got 3 answers. First, of 2 VERY experienced ABA/biomed mums I know one hasn't tried it due to bath water drinking and says Epsom salts is a laxative, the other says she has tried it but thinks her son is hyper and unfocused the next day. The third answer was from a much less (imho) experienced mum who thinks it has had a good effect over the 5 months she has been doing it (she also started ABA about the same time.....)

thanks davros. I have since read that several adult autistics who tried it said that they became very irritable on it. Irritability is not what we want or need May try it sometime but may wait until ds1 stops drinking the bathwater and then just add salts to the bath. Thanks for following that up for me.

Another answer from a friend, I've clumsily removed the kids' names. They are boy and girl twins, the boy is more severely ASD than the girl.
"I have been using Epsom salts for years with both twins. I haven't a clue whether it makes any difference. At first I thought it made "girl twin" hypersensitive skin-wise and a bit irritable, so I reduced the amount. I thought, perhaps it helped "boy twin" with his sleep, ie. getting more of it. It is worth a try so long as they don't drink the bath water. I use it only when I have someone to stay and supervise "boy twin" in the bath. Most Epsom salts are not food grade, but general household grade apart from the laxative effect.

Quantity makes some difference as well I use two 5ml medicine spoons for "boy twin" in a baby bath, about half full of water; and one 5ml spoon for "girl twin" in about the same quantity of water."

Thanks davros. It's on the nutri-link protocol- I think they do a urine test to see whether its needed- so may well be trying it at some stage.

Autistic twins- god she must have her work cut out........

Hi Jimjams - your original query about this set me thinking, and I'm still wondering about it. The question is, how do you decide what to try, and when? And where do you stop?
Behavioural programmes, diets, neurolinguistic programming, exercises, communication groups, bath salts, fish oils, and many many more - can or does anyone do/try ALL of them??
An old friend of dh who lives near London has a ds on the severe end of the autisitic spectrum. Dh went to visit them in December, and they talked a lot about ASD. They are doing ABA (I think) with their son, and the father has given up his job (the Mum hasn't worked since any of their children were born) to do this. This is something they can clearly easily afford to do - private schools, large house(s) etc notwithstanding. When I spoke briefly to him on the phone, I said something like how good it sounded, and he replied 'oh, I couldn't live with myself if I didn't do this for him'. But where does that leave everyone else, what about those of us not in a position to do the same? Should I be able to live with myself?
I suppose it's a bit like an extension of the old working mothers chestnut, and there are no answers, but I'd be interested to hear what you think, as I'm sure it's not new to you?
Sorry to burble on - time to stop. Reading the Clare Morrall book, Astonishing Splashes of Colour at the moment - it's superb, and such a bleak description of infertility I feel ever more grateful for all that I have ..

Tricky isn't it. I think you can only do as much as you can. Also best not to do too much at once or it all gets very confusing.

If I was starting again I would probably try to get ABA funding for my child from age 2. But he wasn't dxed until 3 by which time he was settled in a very good nursery, and there's no way we could pay for it ourselves. As he was progressing at nursery it woud have been a struggle to get funding. I still feel guilty at times for not pushing for ABA, but the bottom line is we can't afford it, and given his age now (4 and a half) I think it's 50:50 that we would get funding.

I think you just have to accept that you do as much as you can. It may also be possible to pin down an area that helps a lot. For example ds1 does seem to reposnd quite dramatically to dietary changes, so the biomedical side of things is always worth keeping an eye on. As its become a bit complicated now we're going to get outside help from nutri-link - and get all the tests done.

The BIBC stuff has helped his sensory problems as well. it's a small change but being able to tolerate more textures has made life easier for us as a family so it's worth continuing with that (we're going again in a few weeks).

You do as much as you can, but you have to take into account the needs of other family memebers as well. And you can only do as much as you can afford. That cuts out a lot for us, but in some ways perhaps isn't a bad thing as it forces you to priotitise.

I completely agree with Jimjams. I know a few parents who literally try everything and I've seen them ground down by it and not able to determine what affect anything is having, it can also be very expensive. Its also true that having this huge choice of approaches/interventions helps most of us prioritise. I also agree that finding an area that is effective and trying to do that well is good advice before moving on to the next thing on the list. I'm a bit concerned about this dad's insensitive comment and I wonder how involved he is in helping other people access ABA. I am actively involved, and have been for some years, in helping parents set up ABA programs, navigate statementing and funding and I also run a support group that gives practical and emotional support as well as sharing resources. Over the years I've known rich and poor, black and white, well educated and uneducated, working and middle class parents who have been able to set up programs and get funding. I'm not saying this is a direct outcome of my personal support but giving information, spending time talking to people etc and putting them in contact with others who can help really does seem to make a difference. If he is active in helping other parents then that's fair enough but I don't like the "I'm alright Jack" types, not that I'm saying he is like this. A bit of networking and sharing is not that onerous and is so effective.

BTW, Eulalia's DLA thread made me think. There are ways to make ABA "cheaper". I translate our DLA, Soc Svs direct payment and council tax reduction all into therapy hours. Lots of parents also start as therapists on their children's programs before they get funding, therefore saving the cost of one therapist (not for everyone this one!) and it is possible to shop around for more reaonable supervision though this is definitely not worth skimping on either. Sorry, not really related to the original topic!

Or you could follow Junior's advice and the mother could do all the therapy

Bloody hell, I just read the thread on Junior. Insulting rubbish!

Thanks for these helpful comments - I don't think ABA is what we need anyway, but it just worries me that we find ourselves sort of stumbling through things, although on a good day that could be translated as 'making appropriate choices' I suppose..
It's time we took the plunge and did the dietary stuff, but I can't seem to face it quite yet.
Would be interested to hear what happens with the sulphation if you try it, Jimjams.
Davros - you sound amazing

jmb - why not start by reading Luke Jackson's book - A user's guide to the diet and Marilyn Le Breton's book "dietary intervention and autism" - both published by Jessica Kingsley and can be ordered direct. Very good, clear books which will save masses of time if you do decide to take that route.

TBH if you do decide to do it you're best of starting with a 3 week trial of casein free, then trying gluten free as those the interventions most likely to make a difference.

If you can't face starting it without a reason- and I couldn't as ds1 didn't even have a dx at the time- then it would be worth doing the ARU (Sunderland) urine test. I think its worth doing anyway if you decide to go this route as it gives you some idea of what's going on in the gut. This confirmed that ds1 did have problems and was likely to be helped by a gluten free diet. Sunderland also has a protocol you can follow- and a suggested order to try interventions.

A good place for dietary advice is Allergy Induced Autism (AiA - can be found on google) (started by Rosemary kessick who was on the panel after Hear the Silence- the one with the son William.

The website has a place to ask questions. Some people can be a bit zealous though so don't get put off by that- if you need advice it is very helpful.

jmb, ho ho yes I am amazing !! Actually the advent of email and the internet has made all of this soooo much easier. I realised that I meant to say that its good to help people access ABA IF THAT'S WHAT THEY WANT. It isn't the only way, as Jimjams and others are proving. Jimjams' advice on the way to get into the dietary stuff is good, don't try to do too much at once and, if you go to ARU, you can benefit from the experience of those who've gone before. Funnily enough, on Friday I saw one of the mums who I think of as having ground herself down with trying anything and everything, all with the best intentions. I really like her and I think she's a fabulous mother who really loves her son BUT she's now started saying she wishes she'd never done any of it (including ABA). She thinks that, by restricting her son's diet, she's made him more sensitive. I don't think this is techniclly or scientifically correct (?) but she's just sad that he's not more recovered (he's 10 yrs old) and this is based on her feeling low at the moment. Who knows what he'd be like otherwise and it has meant that she has been extremely involved with him and they are very close.

I think a problem with the dietary stuff - if you child is reasonably severe- is that you do hear of some pretty miraculous recoveries, so although you know they are rare you can't help but hope that it'll be the case for your child. You forget that most people get an improvement but not a recovery Maybe its the same with ABA or any intervention.....

Every time I try a new intervention, a little bit of me hopes...... haven't found the magic bullet yet though

however each gluten infringement (and we've had another! can't believe he's stealing food- I know its "good" but still!) shows me what life would be like without the diet for us, and boy do we need it. So allthough there's been no recovery it is a window into what life would be like with no intervention.

Yes, I will be contacting Sunderland soon I think.
I suppose it is the potential GUILT which is at the bottom of my unease with the plethora of Things You Can Do. One good thing is that the denial stage when you first get the diagnosis does at least prevent you from rushing headlong into anything!
I was reading something in the paper today about milk in childhood and breast cancer, and it turned out some of the material was from a woman who had 'cured herself' of breast cancer by cutting out dairy products. Well, that's great for her, but what about all the poor people (and their families/friends) who don't manage to cure themselves? It's clearly ALL THEIR FAULT! Grrr!
Anyway, will order the books you recommend too, Jimjams and give it a go I think - thanks!