Shall we start the biomed thread then?

[staryeyed]

We discussed doing it and some of us thought it would be a good idea so shall we start it?

MMDDWW- £17000 ouch.

bump

Right, have ordered dd1's recommended batch of vitamins/probiotics, and they should arrive tomorrow (fingers crossed) - any tips on how to get her to take them?

THe majority are in powder/capsule form, so I could mix them in to her porridge in the morning, but there are a lot of B vitamins in there, and from personal experience B viamins stink! so I reckon she'll end u not eating the porridge.

What have other people done? was thinking of bribery, as this works quite well for dd1 (worked a treat wih eye drops for conjunctivitis - she now asks for eye drops so she can have some chocoalte ) but wondered if there were any other tried and tested methods?

she does not drink AT ALL so puuting them in juice is useless...

I use a lot of liquid vits which I put in DS drink. He is very easy though he will drink it no matter what it tastes like so Im very lucky. He only really objects to peptizyde on his food. I have to really mix it in so he doesn't see it.

Anyway If the vits a re strong mix then maybe with strong tasting food? There is a method some people use for teaching capsule swallowing, I could look that up for you.

Ooh this is fascinating. My DS(3) has always done the loosest foulest poo, have been wondering lately if it could be connected with autism traits.

Possibly buckets its hard to know sometimes. My Ds had very bad diarrhoea and loose stools. We started with enzymes which helped but his stools still aren't right.

For anyone who is interested:

If you are considering Biomed I recommend these books:

-Children With Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder
by Jaquelyn McCandles

-Enzymes for Autism and other Neurological Conditions by Karen DeFelice.

These books give a good explanation of the foundations of Biomedical stuff.

There is also this website gives a good guide to different treatments and tests.:
-www.treatingautism.ik.com/

This one gives very good information about enzymes:
-www.enzymestuff.com/

And these forums for any questions you may have:
-health.groups.yahoo.com/group/EnzymesandAutism/

-health.groups.yahoo.com/group/Autism-Biomedical-Europe/

This place stocks a wide range of supplements:
-www.nutricentre.com/

This suppliers are quite specialist:
-www.nutri-linkltd.co.uk/
(make sure you dont get them mixed up as I have done )

This article makes good reading- an assessment of treatments:
-osiris.sunderland.ac.uk/autism/durham95.html

I would suggest that everyone do thorough research before doing and biomedical treatments. Its good to have some guidance from someone with expertise. We haven't seen a DAN doctor but we did have guidance from a nutritionist and doctor(NHS) who helped us work out where to start from. Please everyone be cautious about the treatments you use and the experts you see. Don't expect miracles (or cures) and it can be a long process before you start seeing any real changes. We really believe that it is working for us (it doesn't work for everyone and some spend a lot of money to find that out) Sorry if that sounds patronising.

Well, we are a couple of days into the supplement regime, and so far it's going well. Having thought long and hard about how to administer the various supplements, I decided to mix them into a teaspoon of fruit puree and then squirt into dd's mouth using a dosing syringe (she is familiar with the syrings as something to "put up with" as when she goes on her all too regular drinking strikes, we quite often end up syringing water into her - she quite likes it now!) and she is tolerating this well.

We are looking forward to seeing benfits (already had a positive effect on her nappy contents!)

That's good Silverforg. Im lucky that my Ds will just have them with his water Im hoping that it lasts.

I forgot to add it is good to assess each treatments you use. Firstly to get a baseline- result without any treatments and then one for each treatment you try.

This one is good but not great for young non verbal children:
www.autism.com/ari/atec/atec-online.htm
This one is better:
www.childbrain.com/pddassess.html
I also use general development assessments Unfortunately these are on paper.

I use these both and keep a note so that I can properly evaluate DS progress It gives a good indication of what works and what doesn't.

I so wish dd1 would drink. she does now have pear/pineapple juice, and will have a few sips each day - on a good day she'll drink about 150ml, but she is still prone to going days without...

I am far too disorganised to do paper assessments - would just end up contributing to the landfill mess that is my desk. I do try to write a daily diary though, eg what mood dd1 has been in, what she's eaten, whether there were any tantrums (and likely flashpoints) so that serves us quite well, and also i tend to use dh as a barometer. He doesn't normally see dd1 in the week at all due to work commute, and so he gets to see changes from weekend to weekend, when thet may be a bit more noticable than day-to-day minute changes.

Silverfrog --how do you keep hydrated?

oh, it's a nightmare. I give dd1 porridge for breakfast, so lots of rice milk in there, and a pot of fruit puree stirred in for extra water content, and then she has soup/sauce based meals. So always curry, spag bol etc. She has soup with bread or pasta at least once a day too. In extremes of heat etc, I often spend an hour or so a day using a 5ml syringe and squirting water in to her mouth - fortunately she quite enjos the sensation, but it is still a long process.

I sometimes wonder whether her diet(lots of liquid based foods) just contributes to the problem, ie she never feels really thirsty so she doesn't drink, but tbh I think it's deeper than that.

she has not liked drinking since we took her bottles away when she was a baby. She is able to drink from any type of cup (spouted, open, straws) but will not do so. Currently she will drink one type of juice out of the carton (you know, the small lunchbox sized cartons) which is causing no end of trouble for us going on holiday next week, as can't take the cartons through security (100ml max in clear bottls) and the one she'll drink is not available to buy post security. We've got a 10 hour flight too, so not sure what we'll end up doing about htat.

She is in a good phase at the moment, and as I said before will quite often drink 150ml or so a day, but this is subject to change at short notice, as most things with autism are - the longest she has gone without drinking a single drop was after dd2 was born, and that was 6 months or so (mind you, she would eat yoghurt at that point, so that was another hidden liquid)

She has not yet been constipated, but it's a total nightmare tbh.

That must be terribly difficult for you. Does she eat watermelon?

My DS refuses to drink out of an open cup I've tried all sorts bribery only having the open cup but then he refuses to drink so we just use spouty cups.

What does everyone do for bath time- My Ds has gone through phases of not liking to being ok. But ever since we washed his hair and his shampoo shield leaked and the water went down his face. He has got steadily worse. He clings like a cat to anything to make sure he doesn't go in the bath and screams like he is being murdered. It takes 2 to get him in and then we have to try and keep him there whist we wash him. Ive tried singing and rewarding him after and nothing is working. What do you all do?

Oh for any of you fellow pooh watchers There is this:

www.enzymestuff.com/rtstools.htm

My Ds had black flecks in his ooh today and a red cheek which is possibly signs of virus/yeast die of which has made me very excited (sad I know- if anyone had told me I would be so interested in my child's stools I would Have thought they were loopy.)Strangely his sticky eye has come back with a vengeance also started lining his books up again.

It's funny how you get used to it, I showed my SIL a typical pooey nappy from DS yesterday (she has 3 small kids so she knows her poo too) and she was really shocked.
DS has only just started on a pre-school autism assessment programme, have been holding on for DX (or no DX even??) before contemplating tackling his chronic diarrhea. But have a paed appt in a fortnight so will have a chat about getting some tests done (GP totally unhelpful of course).

buckets, make sure to get your application for free funding of biomed before you do anything. look up caudwell children.

they fund up to 3000 per year, including consultations with some practitioners.

unless you or your hubby makes wacks of money, you should receive funding.

Pipinjo there is supposed to be a good one in London (ill have to search to find her name or there is Jean Mushcroft who is a Dan Nutritionist. Be careful when choosing as there are a lot of money grabbers. I've not used either of these so its not a personal recommendation. Hows things going anyway?

Asha Chagarlamudi. Im not sure where she is based but I have heard of people using her on the biomed yahoo groups I dont know how good she is.

Dr Asha is in SE London I think. We booked in for an appointment but didn't go for it. Heard good things about her though.

I am too disorganised to follow a proper biomed regime, we tried GF for a few months, now DS is on AFP Peptizyde and probiotics, sorted out his poos (yes, we are poo watchers too...). I would like to give him Omega 3 but haven't yet found a way to smuggle the stuff into him. He can sense it if it's in the room, like a jedi.

I thought I'd ressurect this, to give an update on dd1.

It is now just about 2 months that we have been giving dd1 supplements.

The results, although not exactly miracles are nonetheless measurable and remarkable.

Drinking: dd1 now drinks (she never used to. at all). Today, she has had 300+ml of pear/pinapple juice, 1/2 an ellas house smoothie, and some chocolate rice milk. For her to be drinking the pear/pineapple juice is staggering, but for her to ask for (and then drink) other drinks is just amazing.

Eating: dd1 has made some good progress with eating. She is still quite restrictive with her main meals, but she is more and more willing to eat snacky type foods, so will now eat crackers (and for the first time today ate a cracker with a tiny smear of coconut butter on it), nuts (hazelnuts are her favourite) and rice cakes seem to be back on the agenda. Still working on sandwiches, but you can't have everyhting, I suppose

General personality: dd1 is expressing herself more and more at pre-school. She is joining in more activities, and following more instructions. all her workers are very pleased with her, and last week she walked over to a member of staff whowas bouncing a ball, grinned, and pinched the ball off her. Then played throwing/rolling games for a good while with the staff member . She has twice gone to wash her hands all by herself when she has finished painting (she is normally extremely passive and totally prompt dependent)

speech: is getting ever more clear. she ahs, in the past week said to me "want to play ball", and just yesterday said "I'd like a hug". She usually only uses echolalic language, so would normally have said "let's play ball" or "come and have a hug"

All in all, she is doing brilliantly, and she even asks to have her vitamins which I though would be one of the tricky aspects(in fact, she is pestering me for them now so I'd better go lol)