michbooth

Hi, I also detest mornings. My son AS/ADHD aged nearly 8 refuses to eat or drink and I have to practically forcefeed him, he has to be dressed also. Every morning for the last few weeks he has run off on the walk to school. When we eventually arrive at school he refuses to go in and again runs off. It takes the teacher and myself to carry him in. I was dripping in sweat this morning as I had run around after him so much. When we have managed to get him in I am gibbering wreck and my nerves are in shreds. When I tried to drive him to school the other day he tried to jump out of the car!! Lucky I was only doing about 15 miles an hour. He also refuses to go out at all at the weekend so I feel like a hermit. I have got to the stage where I start having a panic attack on waking at the mere thought of the stress ahead I can totally sympathise with you all. Michelle <'> <'> <'> <'>

Hi I have just done the test (I think it is the one you are referring to)and scored 45. Average score for NT is 16.4. I have thought recently that I may have autistic tendencies - obviously my suspicions are correct! I have 8 year old boy AS/ADHD. I also think my mum & late grandfather showed signs of autism, though this was never diagnosed. I don't think I will do anything else about getting it properly confirmed as I seem to have managed reasonably well in life so far. I just always thought I was a bit different to others and have been more bothered by noise/temperatures than others and have found social situations difficult. People have also told me I am very blunt and repetitive. My husband says I am like a dog with a bone, once I get something into my head. I guess he has learned to live with it as we have been together a very long time. Michelle

We have been going to Ruda holiday park for about 10 years now (Parkdean own it, as well as a lot of other sites ) Ruda is in a lovely little village called Croyde, North Devon and is about 5 miles from Woolacombe, which is also a great place to visit with a lovely beach. Ruda is right next to Croyde beach, which is a popular surfing location. Ruda has lodges or caravans (lodges are a bit pricey, though not compared to Center Parcs) There are some nice places to visit nearby and my 3 boys love it there, 1 son NT aged 14, 1 son aged 8 AS/Adhd and 1 son NT aged 4. I think the familiarity of going to North Devon suits Callum AS/ADHD. We have visited other sites in Woolacombe - Golden Coast Holiday Village & Twitchen Parc & Woolacombe bay holiday village (all of these 3 sites are linked and provide a regular brightly coloured open-top double decker bus down to the beach, which the kids love. Anyway we are off to North Devon again this year - it works for us! Michelle

Hi, I know exactly where you are coming from. I went shopping with Callum (AS/ADHD) last week (I knew it would be awful but I just had to go) He punched me all the time I was in Tesco's as I refused to buy something that wasn't suitable for his diet (he is on gf/cf diet). He then proceeded to open a pack of 16 toilet rolls and throw them everywhere in the entrance to Tesco's. I was trying to pick them all up but he was faster than me and he kept on throwing them, hitting people with them. It was so bad and I got so many disapproving glances that I ended up laughing hysterically - I'm sure the white van will take me away one day!! He then kept smashing the trolley into the car. He has refused to go to school twice this week and will not leave the house any other time. He even tried to jump out of the car as I was driving along and was hitting me as I was driving. Anyway enough moaning from me! I totally sympathise with you and have frequently felt at rock bottom too. I'm sure I would run away if I didn't feel like everyone relied on me so much. I think the fact that we get no family help whatsover and that hubby works away doesn't help. I think that this forum is absolutely great for making you realise you are not alone and that everyone on here can empathise with each other even if it doesn't actually change your circumstances. It really is a case of taking each day as it comes, hope you are feeling better. Michelle

Hi, Thanks for the suggestions. I didn't even know that you could calcium in drops. It will certainly make life easier for Callum (and me!) Yorktest did the additional testing. It was a blood test that you send back by mail, featured in several books (Patrick Holford - Optimum nutrition for the mind - he also did a feature on Tonight with Trevor Macdonald - regarding children suffering with ADHD (Callum has AS and mild ADHD) The children on the TV programme were tested at Yorktest and after removal of things they were intolerant to there was a big improvement in their behaviour. The cost is ?250 which covers 113 different foods. Callum's dietician is very sceptical about the tests, though Yorktest do have a very good reputation. Will now do my order for Almond milk and calcium supps. Thanks again Michelle

Hi My son Callum has been on gf/cf diet for a year now. After 6 months we saw no improvement so had him fully tested for intolerances against all foods (we initially had the urine test done at Sunderland and he was intolerant to both gluten and casein) After replacing the cows milk with soya and we were using sunflower spread/oil we found out in September that he was highly intolerant to these too. After excluding these we have seen an improvement since but after 5 months his dietician advised trying to reintroduce soya and sunflower as Callum was very short of calcium and other nutrients (he refused to take supplements) He has been back on it for 2 weeks and his behaviour has rapidly declined and he has had red hot ears. The dietician said that a lot of tests for intolerances gave false positives and that the only way to check was to reintroduce them into the diet. Needless to say we will be removing them again after this bad reaction. My experience over the last year says that there must be definitely something in the diet, especially seeing the reaction to the soya/sunflower over the last couple of weeks. It is very hard to find substitutes for the foods as he is also intolerant to eggs, which makes baking difficult. Also soya and sunflower are added to so many foods. We have found the best/cheapest approach is to serve Meat/rice/fruit/veg/potatoes with some homebaking. We use grapeseed oil/coconut oil for cooking and making him chips. The biggest problem is the calcium shortage! Even provamel rice milk has added sunflower oil. If anyone knows of a substitute for milk without soya/sunflower/casein with added calcium I would love to hear about it. Good luck with the diet if you go ahead with it again Michelle

Thanks all for your replies, I have had a meeting this week with a lady from the parent partnership who was really helpful. She is going to arrange a meeting at school which we will both attend. She has also looked at Callum's IEP and she said it was pretty useless. (He is on school action plus) We have also been refused a Statutory Assessment as they say school are "meeting his needs" I have decided to re-apply in six months after I have gathered sufficient evidence, as we are still awaiting some Occupational Therapy reports and a meeting with the Educational Pyschologist . If they don't agree again I will definitely appeal. I have spoken to Callum about why he doesn't eat and he says that he is not hungry and that the noises/smells in the Dinner Hall upset him. I have asked him if he wants me to try and get a quiet area for him to eat in and he said definitely no because he would feel like the odd one out and would be very embarrassed. Anyway I will keep on at the school until they do listen to me. I feel happier knowing that he is not the only one with these problems. Cheers Michelle

Thanks to all, I have looked at the other thread and it is very useful. Callum does attend mainstream school and is on medication (strattera) which does reduce appetite. He is also very bothered by smells/noise/germs... I really think I need to kick up more of a fuss with the school, as since he started Junior school in Sept 2005 they have been pretty useless really. Anyway it has made me feel better to know that others have had similar circumstances and that I am not being neurotic. Thanks Michelle

Hi, My son, Callum (7) who is autistic/ADHD comes home every day with a full lunch box. I have asked the teacher if someone can check he eats something but they just don't seemed bothered or can't persuade him. Callum will refuse to eat if anyone so much as breathes near his food as he thinks it will get contaminated. He is on GF/CF diet so is already limited in what he can eat. His behaviour is awful after school and I think it must be made much worse by lack of food during the day. Does anyone else have this problem as I am thinking that the only way round it is to pick him up each lunch time and take him home for dinner (which would be very difficult) I just feel so frustrated at the lack of school concern/action. Callum also regularly forgets to put on his coat on a very cold day at playtime and other children say that they have seen him wandering around freezing in just a polo shirt and with almost blue lips. He forgets to drink some days too. I am so concerned but wonder what else I can say to school as I have already been in several times about all of these issues. If anyone else has similar issues I would love to hear from you. Michelle

Hi Thanks for your suggestions and I was LOL at baddad post. It helps keep you sane. I will look into the diet and I am frantically looking at labels on everything, like someone who has lost the plot. My son says I am trying to ruin his life, poor thing. Anyway I am sure we will get by when I have got used to it all! Thanks again Michelle

Hi, My AS/ADHD son has been on the GF/CF diet for 6 months following the urine test at Autism research centre at Sunderland. We have since had him tested against 113 foods at YORKTEST lab as he has eczema and they have advised that he is very intolerant to cows milk, gluten, soya and sunflower seeds, as well as eggs, fish and peanuts/cashew nuts. Does anyone know of a spread that does not include any of these as I have looked everywhere and cannot find one. Also does anyone know of a suitable milk substitute as rice milks that I have looked at contain sunflower oil. Yours in desperation, Michelle

Well, reading about your problems has sort of made me feel better about things as I realise that I am not alone. I also have no extended family help at all and my husband is away a lot of the time. I have found the holidays so far an absolute ordeal!! My AS/ADHD 7 year old son has been his worst ever. I have been unable to go out with him at all as when I did try he was extremely ragey and agressive. I would consider him to be a danger to others when he is in that state and I am reduced to a snivelling wreck. When we are at home he is no better and is very hyperactive and constantly demanding things. Having tried the GF/CF diet and fish oils and recently took him to a chiropractor to see if that helped I am now thinking that he may need medication. We await a further report from the Psychiatrist. He is due to start Junior school in September so I am a bag of nerves worrying about how this will affect him. Well, enough of my moaning - it does do you good sometimes though. Just to let you all know that I totally sympathise with you and your circumstances. BIG hug to everyone <'> Michelle

Hi Thanks for the suggestions. I have actually noticed that since the weather has been sunnier, Callum's eczema has improved a bit. I am due to see a dietician again shortly for some advice. When I last saw her she said not to remove anything else from the gf/cf diet as he was already coping with enough change. She did also agree that it could be toxins coming out. Callum has been on the gf/cf diet now for 4 months but we have seen no improvement as yet. We will keep at it though as I know it can take 8 months for all the toxins to come out. If all else fails we will have to push the doc again for allergy testing. Thanks again Mich

Hi I am new to this forum. I have an AS son who has been on GFCF diet for 7 weeks and has developed severe eczema, even though he hadn't had it much before and he hasn't had any new foods. I have asked others and they say it could be toxins coming out. Has anyone else had a similar reaction to the diet? I have tried hemp oil and coconut oil but it just seems to be getting worse. The dietician said not to worry too much but I just need to know that I am doing all that I can to help my son. Thanks, Michelle