Son has probable asd

raq

Stressed_Out wrote: »

It now looks like my DS won't be attending School Nursery in September as I've been told a statement can take 6 months or so therefore he won't have 1:1 in a School Nursery setting there's no way he'd be able to cope without support or the Teachers with him.

Also does anyone elses child suffer from constipation? Ive been back to the Doctors yet again today with him. He's on lactulose all I've been told to do is up the dose so now he's on the max amount allowed. He's hasn't been for almost a week & suffering :-(

yes both my boys does. We have boxes full of movicol in the cupboard. great stuff. My youngest who is ( asd ) suffers from time to time

mummyroysof3

ok today is the day he is moving from cot to bottom bunk..any tips to help this go well? i have wine for me

daska

Have you rung PP, IPSEA etc?

Stressed_Out

daska wrote: »

Have you rung PP, IPSEA etc?

I have an appointment next week arranged with PP so will view my concerns then.

Thanks.

carerof3

shegirl wrote: »

As for constipation,with ds it's the opposite which can be a nightmare (he's on the severe end and at 13 has only been out of nappies just under a year -you can imagine the fun of changing them:eek::rotfl: wouldn't wish that on anyone ).Bowel problems appear quite common in ASD kids so you will likely find several other parents with either the same issue or the opposite,so may be able to get some advice.Ask about it on the health board too as many people will suffer,and also talk more with your GP or paediatrician regarding it.Investigations were made into ds problems but no cause ever found.

My sons went on a Gluten Free diet, when aged about 6 & 8 years old. They had the urine test that was being done at the time by Sunderland University, which showed a 'peak' for gluten intollerance. They both suffered from a lot of diarrhea and 'food craving' especially for gluten based products e.g. bread. For example, I would come into the kitchen to find a loaf of bread with only the crust shell, all the middle had been taken out and eaten by one child. Lots of people try cassein free (this is in milk) as well, I tried that first, but it didn't make much difference. Gluten free stopped the diarrhea for both, and the worst of my youngest son's behaviour problems. After a few years gluten free, the older now has gluten again, but can't tolerate whole-wheat, which makes him spend hours in the bathroom! The youngest is still gluten free. If he has gluten, it effects his brain and he will attack someone.

I have found a link with some more information, which is where the people previously at the University of Sunderland seemed to have moved to:
http://www.espa-research.org.uk//onlineresearch.html

GP's tend to 'poo poo' the gluten free diet as an intervention for autism, but mine was supportive and prescribed gluten free food when I wanted to give it a try ( this was 1998). I would give anything a try, if not too expensive! If there is no difference within a month, then the diet will be unlikely to work, so you can stop it and try something else. After 3 weeks my son (youngest) stopped food craving and attacking to the same extent, I still got the odd pinch or bite, but not an exteem attack. His residential school put him back on 'normal food' as he didn't test positive for coeliac and the GP stopped prescribing, and regretted it!

Omega 3 oils are also helpful, and my sons take zinc citrate which improves their socialbility - they started the zinc as teenagers. It was prescribed by a homeopath as a good remedy for 'teenage years', but they still take it now in their twenties. I can only really tell the difference in my eldest, as the other is in care, but he is more 'eager to please' and wanting to join in with things when he has his zinc. On the occasions when we run out, and have to wait for another order to come, he is much less willing to do things. It's good to have a break occasionally to see if something is still working, otherwise the expense isn't worth it.

I'm writing a book about my own & my son's lives with aspergers & autism, and am writing a chapter about at the moment. If you do decide to give 'gluten free' a try, start in the summer holidays when you will have control over everything he eats (as no school) and 'cut down' on gluten for a bit first. If you 'cold turkey' (sudden withdrawal) as I had to do to get my youngest back gluten free, after the school messed him up, the behaviour will be very extreem - which actually shows it is working, but is hard to deal with at the time.

I'm really sorry for families with children like mine, when I read things like this on forums. I used to run a charity for children with special needs and when I started, about half the children who came (in 2000) were gluten and/or cassein free - we had entirely GFCF food at parties etc, and all swapped recipes!

I have found however, that I'm often 'shouted down' when I mention gluten free diets and suppliments. I have had to change a user name in the past due to this. I would really like to help people, so I'm happy to give more advice off-list, if anyone would like it.

shegirl

carerof3 wrote: »

My sons went on a Gluten Free diet, when aged about 6 & 8 years old. They had the urine test that was being done at the time by Sunderland University, which showed a 'peak' for gluten intollerance. They both suffered from a lot of diarrhea and 'food craving' especially for gluten based products e.g. bread. For example, I would come into the kitchen to find a loaf of bread with only the crust shell, all the middle had been taken out and eaten by one child. Lots of people try cassein free (this is in milk) as well, I tried that first, but it didn't make much difference. Gluten free stopped the diarrhea for both, and the worst of my youngest son's behaviour problems. After a few years gluten free, the older now has gluten again, but can't tolerate whole-wheat, which makes him spend hours in the bathroom! The youngest is still gluten free. If he has gluten, it effects his brain and he will attack someone.

I have found a link with some more information, which is where the people previously at the University of Sunderland seemed to have moved to:
http://www.espa-research.org.uk//onlineresearch.html

GP's tend to 'poo poo' the gluten free diet as an intervention for autism, but mine was supportive and prescribed gluten free food when I wanted to give it a try ( this was 1998). I would give anything a try, if not too expensive! If there is no difference within a month, then the diet will be unlikely to work, so you can stop it and try something else. After 3 weeks my son (youngest) stopped food craving and attacking to the same extent, I still got the odd pinch or bite, but not an exteem attack. His residential school put him back on 'normal food' as he didn't test positive for coeliac and the GP stopped prescribing, and regretted it!

Omega 3 oils are also helpful, and my sons take zinc citrate which improves their socialbility - they started the zinc as teenagers. It was prescribed by a homeopath as a good remedy for 'teenage years', but they still take it now in their twenties. I can only really tell the difference in my eldest, as the other is in care, but he is more 'eager to please' and wanting to join in with things when he has his zinc. On the occasions when we run out, and have to wait for another order to come, he is much less willing to do things. It's good to have a break occasionally to see if something is still working, otherwise the expense isn't worth it.

I'm writing a book about my own & my son's lives with aspergers & autism, and am writing a chapter about at the moment. If you do decide to give 'gluten free' a try, start in the summer holidays when you will have control over everything he eats (as no school) and 'cut down' on gluten for a bit first. If you 'cold turkey' (sudden withdrawal) as I had to do to get my youngest back gluten free, after the school messed him up, the behaviour will be very extreem - which actually shows it is working, but is hard to deal with at the time.

I'm really sorry for families with children like mine, when I read things like this on forums. I used to run a charity for children with special needs and when I started, about half the children who came (in 2000) were gluten and/or cassein free - we had entirely GFCF food at parties etc, and all swapped recipes!

I have found however, that I'm often 'shouted down' when I mention gluten free diets and suppliments. I have had to change a user name in the past due to this. I would really like to help people, so I'm happy to give more advice off-list, if anyone would like it.

Gluten free does make a bowel change for many and for some behaviour too.Niether for ds.

As for supplements I'll have to :silenced: Sorry!

mummyroysof3

thought i would come back and update this thread. son has fragile x syndrome and has been attending nursery for 6 weeks. getting very mixed signals from different members of staff there as to how it is going.any advice from people with children in mainstream school with special needs?

daska

I would suggest asking for a meeting with the Nursery staff to find out their 'official' stance. Is he getting 1:1 support? Did he get, are you in the process of applying for a statement?

mummyroysof3

he has 1:1 support but as this is her first time doing it im worried that she is out of her depth tbh..maybe she needs more time but seems to struggle at times. his support, the SENCO and his nursery teacher seem to say some positive things as well as negative but the school head doesnt seem happy with how its going

mummyroysof3

oh and we are starting the statementing process incase we choose to move him school after nursery