Food allergies/ autism, views anyone (coppertop/jimjams)

[louismama]

HI have posted before about growing concern about my ds, ref. development and behaviour but as im just starting out on the "listen to me we have a problem road" i suppose im still praying for a miracle, clutching at straws etc. Some days i am ok i think yep there is a problem but ill get help and well get by, other days i just want to cry and cry and wish i could turn the clock back to a happier time. Anyway sorry about the waffle what i want to ask was does anyone have experience with food allergies. My ds was only babbling etc. at 18 months but to tell you the truth i wasnt overly bothered as he was quite content but suddenly at 19/20 months someting changed, im not naive enough to think that he didnt have problems before this time but i have to say something just clicked (the wrong way) it was so sudden i had to think whats changed? The only thing i could come up with was diet after a visit with the health visitor i started giving him soley proper foods and cows milk. I had been including him in family meals when they were suitable but still also giving older baby jars at other times. The most signifact new inclusion being weetabix, pasta, breadsticks and cows milk. 5 weeks later i was really worried ds much more moaney,clingy,started spinning(although he didnt walk till 17months so maybe coincidental-bored with normal walking by this time) head shaking returned which i had only seen for a brief time at 12months, with added looking out of side of eye. Eye contact plummeted started totally ignoring dh again something that has not been a big issue since 1.The final straw was spontanious laughter during meals(scary)i read that this can be an allergic indictator in autistic kids and yet another tick went in the suspected asd box. Have stopped wheat and reintroduced formula and improvement was visable immd. less grouchy sleeping through again taking afternoon nap again no laughing for no reason. Anyone got any input or am i just desperately trying to do something positive in the interim before i get his referal? Any suggestions with odd behaviours would be good too.

There was a head shaking thread somewhere recently. Maybe someone can do a link? My DS has always been a head shaker. Its prob one of those behaviours that NT kids do but they actually stop at some point! I surmise that its a sensory thing, makes the world spin, creates intersting visual input etc.

I stand corrected - or at least am completely bowing to your better judgment, Davros. I have really very little experience with special needs, ASD or diet - I only mentioned the book as i thought it might be helpful to others - it wasn't to me particularly - and I only meant I would try anything that I thought would help if my child had ASD(the word "cure" is Karyn Seroussi's not mine. I hope I haven't caused offence.

don't worry Pages its a minefield. FWIW I think when you have a young child (say 2) who may have regressed then it is common to start out looking for a cure- people talk about recovery but really those cases are very very rare. You have to be careful about saying "suffering" as well. TBH I think many days autism does cause my son to suffer- immense frustration at the very least, but I have to be careful not to say that (maybe its the lack of language rather than the autism that causes the suffering- not allowed to say that maybe).

T he reason it causes offence is that many many high functioning autistics see it as part of who they are- and feel they wouldn't be the same without it. Not all feel like that but a lot do.

ds1 wasn't potty trained. It has to be first wee of the day and at the time he was waking up0 at 5.30. As soon as we heard him we jumped out of bed took his nappy off and followed him around until he produced something (about half an hour later) and dh caught it!.

Oh Pages, don't worry! Not offended at all and I like being told I have better judgement!! Sorry if it came across as sounding offish, I was going to put an exclamation mark or grin but thought it looked a bit flippant..... and I didn't want to offend anyone, hee hee! I think Karyn Seroussi is American and, for the land that invented PC, they sure have a lot of non-PC language and attitudes. There are two organisations there called Cure Autism Now! and Defeat Autism Now. It couldn't happen here and I think that's a good thing. Although PC language can be very silly, having commonly accepted terminology helps set some boundaries for professionals mostly. I say what i bloody like me
I vaguely remember chasing DS round with some container to get wee for a Sunerland test..... and then putting it in the freezer!!??!

YOU did the Sunderland test?? Really? I never knew that! You ark horse you. You're right about the freezer- 24 hours.

i asked h.v for collection nappy but all she had was a bag you stick to child with elasto plaster on one side then it sits inside nappy, believe it or not it worked fine and ds didnt even cry when i peeled it off(the one she gave us was supposed to be 4 a girl too)

Oh yes, we had it done twice!! Both times the results seemed to be very different although nothing had changed and I found it impenetrable. Although I think Paul Shattock and his other Paul colleague are wonderful, I couldn't understand what they were telling me..... it obviously wasn't that there was a clear problem. I couldn't understand that chart thingy and they said "its unusual isn't it?", errr dunno. Their testing equipment the first time we had it done was not very good apparently, this was in the days when they did it free, and they got better equipment which is one reason we did it again. So I just moved on. I also saw Simon Murch at the Royal Free who didn't think DS fitted the profile of a child who would benefit, music to my ears!! I used to threaten our ABA team that I would make them all do a wee at a team meeting and send it to Sunderland because, I have to say, I was rather skeptical about their results and thought they told almost everyone that they should try the diet.

Ah don't be too sceptical. They told a friend of mine it was unlikely to make much difference to her child- and it didn't.

I think there is a definite profile for the children it helps.

Have just come back from global stimulation therapist said ds was calm and concentrated he was ok at physio after and tolerated whole 1/2 hr hydro therapy normally he crys the whole way through, (but all that in one morning id normally cry too) but since coming back sleep patterns gone again and refusing pm nap ran him round beach for hour yesterday normally guarantees hell nod off but no. Maybe just the changes being away etc. we'll see. Jimjams are the nutrilink people expensive with regards to tests appointments etc?

yep - pretty expensive (well par for the course these people always are), but they understand autism- more like biochemists than most nutritionists, and they only order tests as and when they are needed and they start with the easiest interentions and cheapest tests. All consultations are by phone as well which makes life a LOT easier.

Thanks jimjams you should write a special needs encyclopedia (yeah like you have time eh!)Would pureeing the vegtables help them to be absorbed do you think, spend time trying to make nutritional meals and they come out whole.

Socci, no he wasn't potty trained and like everyone else I was chasing him around at 5.30am with sample tube in hand. Easier for boys though . I seem to remember P Shattock saying that if really necessary you could catch sample in potty and then transfer into tube.

When my ds had to give a urine sample the hospital gave me a little 'kit' which was a pad to put inside his nappy (they had to give me two in case he pooed all over the first one!)and a syringe to suck it up and tranfer it to a little pot. It was a bit time consuming but it did work.

sorry transfer