A-Z

Parents of children on the Autism Spectrum

Medical and dietary interventions

In addition to discussing different therapies and behavioural interventions (see ‘Therapies’) parents also talked about different medical and dietary interventions. Sometimes parents we interviewed found that a particular intervention had helped their children, however in presenting the experiences of the parents we spoke to, we are in no way advocating any type of treatment. We would recommend Research Autism (see 'resources') where scientifically-valid information is provided about different interventions.

Medical interventions
Some children had been prescribed medication for depression, sleeping problems, epilepsy or hyperactivity. Those children who had epilepsy were taking long-term medication to control seizures. The medication parents talked about included Ritalin, haloperidol, Diazepam, and Vallergan. For some parents, medication had helped their children cope better. Getting children to sleep was a major problem in some families, and a few parents felt that medication, such as melatonin, helped alleviate sleep problems (see ‘Eating and sleeping). Other children were prescribed medication to help calm down the symptoms of ADHD. As one mother said:

“Now the ADHD is a little bit under control with medication… there is no medication that will make him a perfect child but it has kept him a little bit more concentrated, so now, he is able to do one or two of the things that he really enjoys doing and actually give it his all.”
 

Liz found medicating her child difficult until a psychiatrist asked her if she would feel guilty...

Liz found medicating her child difficult until a psychiatrist asked her if she would feel guilty...

Age at interview: 45
Sex: Female
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He is – well he has been on everything but he’s been Strattera, Ritalin. Also they use the Epilim for the epilepsy, they also use some of that for the ADHD because it can control. And now he is on Imipramine which is three tablets taken at night time and basically what the Imipramine does is it helps him concentrate a little bit better but it mainly helps him to sleep and if he doesn’t take them he is awake because that was the other thing, that the first six, seven years, he would be up at three, up at four, up at two in the morning, you know completely wide awake. So you know it was affecting all our sleep patterns.
 
Then having another baby was like the baby waking up every hour and a half plus the child waking up as well, plus my husband having to wake up at 5.30 to go to work. So it was very, very intensive in that respect. We were all very tired. So I felt that although it doesn’t control his behaviour as much as probably I would like to, I think the fact that he is sleeping has got to be better, so that is why with the psychiatrist we are trying to stay on that at the moment, because I think if he has a good night’s sleep then you are able to cope with things better during the day, but I think during the day, he could do with having another one, but it is just the fact that it affects, it has other side effects. It could affect his heart beat, so that is other thing, is that you know you give them medication on one hand, and it helps with certain things but it could aggravate others and one of the things that the medication can aggravate as well is the epilepsy, so you are forever having to juggle this decisions and medication is a very complex subject as well.
 
A lot of parents don’t want to medicate but if you don’t medicate when they get to be teenagers all the problems are a lot worse. So it is a very fine line, it is a very, very difficult one, and one that we feel guilty about as well. Until my psychiatrist said, “Would you feel guilty of giving insulin to a diabetic child?” This medication for the brain is for the chemical reaction in the brain so we mustn’t feel guilty. But you know you are always still borderline with that. So yes….
 

Alison and Tony discuss the use of Vallergan to help their son sleep.

Alison and Tony discuss the use of Vallergan to help their son sleep.

Age at interview: 36
Sex: Male
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Tony' One good thing that they gave us from the hospital was they put him on a prescription to help him sleep as well so they gave him some Vallergan which is …
Alison' To help him get to sleep at night.
Tony' Just sort of calms him down a bit an hour before bedtime.
Alison' Well we give it to him on school nights. I don’t give it to him on a Friday or a Saturday.
Tony' No.
Alison' I don’t like to give it to him all the time.
Tony' No. We give vodka on a Friday and Saturday [laughs]. I can’t deny …
Alison' No I don’t give it to him on a Friday or Saturday or usually during the holidays because I don’t like to give it to him all the time.
Tony' No we don’t want him to become dependent on it. Or we don’t want to become dependent on using it as a …
Alison' If I don’t give it to him. If I don’t give him this medicine he can be up till midnight. But then that is okay. He is in bedroom but he is awake.
Tony' He is not a pain. He is not creating havoc.
Alison' But if he doesn’t have it, I can’t get him up in the morning.
Tony' That is the trouble yes.
Alison' If he doesn’t go to sleep at night he won’t get up in the morning that is why I have to give it to him otherwise he would never get up in the morning.
Tony' And for a child that didn’t use to sleep when you try and get him up in the morning, this kid is out for the count. He is unconscious. His head back, mouth open, snoring like a little, like a pig isn’t he and you can’t move him. Honestly [laughs]. 8 o’clock in the morning you can wring a flannel out on his face and he just sleeps through it [snores]. Yes, just lying there snoring and grunting.
Alison' And I’m like “get up!”
Tony' Yes right. What is it dad.
Alison' He is just a grumpy kid. I used to be a right old grump in the morning. And he is just the same. He doesn’t like getting up in the morning.
Tony' None of us like getting up in the morning particularly.
Alison' His sister is the same. She is even worse.
Tony' Yes she does take some shifting. But... yes. So if you can’t get him to sleep by 9 o’clock at night, you know you are going to have trouble shifting him in the morning.
 

John and Lynne describe how Gavin is on a carefully controlled low dose of medication to help him...

John and Lynne describe how Gavin is on a carefully controlled low dose of medication to help him...

Age at interview: 60
Sex: Male
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John' But there has also been, problems we haven’t really mentioned with Gavin, which started really about the age of 15,16, adolescence I guess.
Lynne' Sooner than that, it was much sooner than that.
John' Was it, well okay, but it was a tendency, and I was much more conscious at that sort of time, a kind of self, self harming tendency. And he … I suppose the worst and probably the most obvious model was smashing his head against the wall in sort of his room that he, his bedroom, there were dents all over the wall in the plaster work where he had hit it so hard.
Lynne' And the glass as well. He smashed the glass.
John' Yes. And it seemed, I don’t know, it seemed to be associated with some kind of frustration.
Lynne' Or anxiety.
John' Anxiety, frustration.
Lynne' I don’t know.
John' It was brought under control by medication. He is still on medication on what we are told is a very low dose and just enough to enough to put him on the borderline, more would make him more zombyish, less and then he would be more likely to explode. He still occasionally, can, very occasionally, can move towards sort of banging his head. Very, very occasionally, but you know, more, more frequently, you know, he will get agitated [makes rapping noise]. Rapping on something, you know, banging, banging, on any kind of surface, banging on any kind of surface and so it’s a sort of minor form. Okay so he has balanced on this kind of knife edge, you know, by the low, the exact low dose, carefully controlled low dose of medication that he is on. The… but there was, especially kind of the adolescence time, there was a time when he had some of his aggression was directed towards others, and I experienced some of it at that kind of stage.
John' It wasn’t a period that seemed to last that long but, you know, it was particularly worrying why it happened and, and he would, you know, he would sort of hammer his fists on my chest. I mean he had no skill about the way he was hitting me and so it was, in those days I was, you know, a fair bit heavier then him, so it was no physical problem, but you recognize the potential that, you know, if this sort of thing was going to continue in the future as he grew bigger and older, this could be a real danger problem. Fortunately it seemed to subside, you know, after adolescence.
Lynne' I still feel, you know, he is pretty unpredictable and he has had such a good day today it is very easy to sort of lull yourself into a false sense of, you know, security because tomorrow morning he could get up and be banging and, you know, could be very, very anxious and I might have a totally, totally different day tomorrow.
Some parents found it difficult to get their children to take the medication , particularly when it needed to be taken during school time and the parents were not there to supervise.

Other parents found that medication did not help their children. One mother, for example, found that her son had such a deep sleep when he took melatonin that he woke at midnight feeling refreshed and ready for the day.
 

Rosie’s son became happier when he was taken off Ritalin.

Rosie’s son became happier when he was taken off Ritalin.

Age at interview: 53
Sex: Female
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So … and he would sit still, he would sit still for hours. He will watch a film from beginning to end and it is just at school really he is hyperactive, but there is so much going on at school and so we went to the clinic and they wanted to put him on Ritalin. Oh I have forgotten all that, yes. So and we didn’t really want him to go on Ritalin but we thought well if it would benefit Sam it would help him access education more. We thought ‘oh well, we will give it a try’ and so he went on it for six months as a trial but it was just horrendous. He was alright at school but it was at home. It was just awful. It completely changed Sam as a person. There were lots of things. He used to cry. Sam is not a child for crying. He is always very happy. And sometimes at night he would cry at bedtime and say he couldn’t stop seeing things in his head and he wouldn’t go to sleep. He would rock. Go like this in his bed and that distressed him because being a child that would normally just go to bed, have a story and go to bed and he would be awake for hours. He would be up and down, up and down, and then he started having physical…. I don’t know whether it was the Ritalin but it is to do with his continence.
 
Sam was very good. He was very good in the daytime with his continence. He would always go to the loo but at night he would wet his bed quite a lot. So I don’t think that was the Ritalin but he’d have pull ups. But when he was on the Ritalin for a while, he would start like messing his pants at night. Not in the day time, just at night and we just couldn’t figure out why he would start doing that and he would wake up… he wouldn’t wake up once he was asleep. He would stay in bed, but in the morning you would find that he had smeared faeces everywhere, all over his bed, all over his sheets, on the wall. And it was really... he got really upset about it. He would hate it. He would cry about it. And we got really upset about it because it was just so unusual and we didn’t know why. The consultant at the hospital wondered whether it was the Ritalin because we didn’t associated with the Ritalin but he did. He said he wondered whether it was because of that and there were lots of side effects to Ritalin.
 
Although we kept a journal for the other doctor and so we went back to the ADHD clinic and said that we weren’t happy. We were going to stop him taking it. And so they didn’t, there wasn’t any improvement at school so much to her distress - she didn’t want Sam to stop taking it - we just stopped him having it and he just went back to his normal self. He became much happier.  He stopped doing any of that with the faeces at night. It just stopped so obviously we decided that that was the cause of that.
Some parents were determined not to go down the medication path, while others felt they had to in order to make their children’s and their own lives easier. One mother did not want to “chemically straitjacket” her son to make him perform better at school and another mother described saying no to Ritalin for her son because he had a communication problem rather than a mental health condition.

Dietary interventions
There has been considerable interest by researchers and parents in the effect of diet and vitamins on the treatment of autism, however, there is very little evidence to suggest any clear links. Several children were on gluten and dairy-free diets and some parents felt these had helped improve their children’s behaviour, digestive system, concentration or bowel movements. Some parents were able to get gluten and dairy free products on prescription from their GP while others had to pay for them.

Changing their children’s diet was sometimes an outcome of the results of urine testing which suggested that the children had urinary peptide abormalities.  One parent raised the issue that there was no subsequent testing for children once they had changed their diets so it is difficult to monitor effectively.
 

Jane has managed to get a prescription for some gluten- and dairy-free products.

Jane has managed to get a prescription for some gluten- and dairy-free products.

Age at interview: 47
Sex: Female
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The other challenges are to do with the diet. He is gluten free and milk free because of the links with autism and I researched that and sent his urine off to the University of [city] which came up positive. That has been a significant support because he feels better. He doesn’t have the headaches, he doesn’t have the highs and lows associated with the absorption of those but it is prohibitively expensive. A French loaf of bread, half a French loaf, a baguette costs £1.32, £1.99. In two different shops and an ordinary white baguette costs 16p and he will eat two baguettes a day. I haven’t yet learnt the art of making decent gluten free bread. I have got two children who are gluten-free.
 
There’s... I have been to the GP. I have managed to get…. With all the test results and the diagnoses and I have managed to get a small prescription for bread and spaghetti. That was a major convincing negotiation, because the GP said, “No”, he is not licensed to deliver, to prescribe bread unless you are coeliac. Gluten free products that is, unless you are coeliac. And I said, “That is not true. You are licensed to prescribe whatever you think is clinically relevant. Please look at these results and accept that this is clinically relevant.” And in the end he did. So it is just another example of knowing what the doctors limits are to be able to negotiate. But you have to be so persistent. You have to be very determined.
 

Jacqui’s family has a history of severe food allergies so she put her children on gluten- and...

Jacqui’s family has a history of severe food allergies so she put her children on gluten- and...

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But if you look back in my family history my sister has multiple food allergies, very, very severe food allergies, some with an anaphylactic reaction. Some… she had coeliac disease. My mum has coeliac disease and all of these things most of them are lactose intolerant but yet all I were doing was tube feeding Joe, rusk and dairy produce constantly and of course it was coming out both ends and as soon as it was changed and he went onto soya milk and he cut gluten out of his diet it changed, you know, and he started putting on weight and he kind of came to.
 
I tried all sorts of the biological things from different laboratories in America and they are on the gluten and casein free diets which has made a massive difference, it really has made a different to their lives. They are still on that and you can see the difference when, when they come off the diets. They change their behaviour. They change the bowels problems or you know, the behaviours everything changes quite drastically.
 
Joe is the hardest to please for that one because short of chaining him to me and gagging him. I can’t ever control what he is eating. I mean Joe is bigger than me now, now he is fourteen and he takes a size eight shoe. But he has still got a dummy and he is still now where near capable of going out playing on his own or anything. But send him off to school and he can go and swap bags of whatever and going to be an entrepreneur I think. His skills or, he took a packet of cigarettes from someone and sold them for 50p each at school and then bought himself all this food that he wasn’t allowed [laughs]. They can always find a way somehow can’t they?
 

Clare removed milk from her son's diet after peptides were detected in his urine.

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Clare removed milk from her son's diet after peptides were detected in his urine.

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Looking back I almost suspect he might have had some sort of intolerance right from birth but what triggered it off was just after he was one, he had a really bad stomach bug, like sickness diarrhoea and one of the things, they sort of say stop giving them the milk. So we stopped his milk and every time we tried to re-introduce the milk, the diarrhoea came back. So we switched then to soya milk and removed all the other diary components from his diet, which, worked well most of the time, but we still had these old episodes where he would have, you know, horrible nappies, we were lucky in a sense he was still in nappies. It would have been horrendous if he wasn’t. But because he was young, he was still in the nappies and didn’t really think too much more about it. It seemed to occur a lot more when we were on holiday but couldn’t really put a finger on anything and then once we got this autism diagnosis we heard about this theory that there can be these peptides that can go through a leaky gut and that you could send a urine sample away.
 
So we did that. We sent it off to Sunderland University and it was analysed and as I say they found the bad peptides from gluten as well. So our paediatrician was very supportive of us then taking the gluten out of the diet as well so we did that and that made all the difference. All these occasional bad episodes stopped and when I was thinking about it, when we were on holiday we have more sort of picnics so he has having a lot more bread and a lot more of things with gluten in then he would have normally had when he was at home. So I think probably may be he can take a little bit of gluten but then when it goes up that was just triggering him. You know his gut would get upset again.
 
So he is still on this gluten free and dairy free diet. I have got... my GP’s let me have the bread and the milk on prescription which is very helpful. And I mean that is a challenge really because not that he is going to go into cafes anyway, but even if he was, you can’t just say, oh yes, let’s just pop in here have … you know have a snack.
 

Kirsten encountered some difficulties initially when she put her family on gluten and dairy free...

Kirsten encountered some difficulties initially when she put her family on gluten and dairy free...

Age at interview: 34
Sex: Female
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Okay. Andrew is now gluten free, casein free, sugar free and yeast free. But at first it was the gluten and casein which we cut out which looking back Andrew had always craved food and he was always eating loads and loads of crackers all at once or loads of rolls and he would steal food out of the cupboards, even as a tiny tot, he was in the cupboards raiding it for food. So it was hard at first to change, but then on the other hand, I’d had allergies for years. I’d had allergies myself so I was still looking at ingredients and making things at things at home anyway. When we cut out the dairy free. Andrew’s wee sister (who was covered in eczema when she was born), her skin cleared up, so she would never go back on dairy. So we made a decision that we would all go on the diet. My husband was very resistant to that. He thought that was unfair. He wanted to eat all his food but having allergies myself I know what it is like if you are at someone else’s house or you are out somewhere and they are eating something and you want it and you can’t have it, it is like torture seeing something on somebody else’s plate that you can’t have so I was determined I wouldn’t do that to him. Plus the practicality of trying to keep it away from him because he leans over and takes food off our plates still so we just cut it all out.
 
Was that really difficult?
 
No. Time consuming because I have to bake everything but Andrew now bakes his own bread and rolls and cakes. He loves baking. The girls bake as well. They know the recipes. It was difficult to find ingredients up here though, that was hard because it is just a wee tiny health shop in [town]. It is not easy to get things. So actually I order a lot from down south and get deliveries.
 
Have you had help from the doctor with that?
 
We did get a gluten free prescription but it was very limited what you could have. Some of the gluten free breads contain milk which Andrew can’t have. They contain yeast, they contain sugar, they contain lots of other additives and they are like cardboard [laughs]. So we used a prescription at first for maybe about a year and we haven’t, simply because we didn’t really like most of the things that were available on it. And there was also the hassle of then having to go and collect it from the chemist. We couldn’t get it from the chemist in the town here because it is a wee place, it had to be a chemist in [town]. So that just wasn’t worth the hassle.
 
And do you think it has had an effect on his behaviour?
 
Yes. Within I would say two or three weeks of being on the diet, Andrew ran into a table and felt pain for the first time. He was howling, absolutely howling because he had banged his face and crying and so distraught and we were all cheering because he actually felt that something was sore because before he had no sense of pain. So he had no sense of danger, he was into fires, he was into gas cookers, so the fact that he felt pain was good, you know for his own safety [laughs].
 
And he has always had digestive problems, right from a tiny tot. So that began to ease. He still has digestive problems, it is still not fully sorted, but it is definitely less pain. When he was in nappies he was so distraught sometimes, and like doubled up and definitely in pain. So the diet has definitely made a difference. He once accidentally got, something with milk in it, canned fish, and I had bought a different brand and I didn’t realise. The supermarkets don’t all, they declare the ingredients in the tin, but not how they prepared it, so this company actually cooked their fish in milk, so he had had sardines and
Other parents thought about changing their children’s diets but decided not to go down that path or tried a diet but gave up quite quickly. One reason for avoiding special diets was that it could make it harder for parents to get the child to eat. Others thought that altering their diet would be too expensive, difficult to monitor and put too much strain on the family. One mother described how “To keep my state of mind, I cannot go into that unless he would really, really benefit from it”.
 

Joy decided that her family would follow a ‘normal healthy eating pattern’.

Joy decided that her family would follow a ‘normal healthy eating pattern’.

Age at interview: 48
Sex: Female
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Did you try any sort of interventions? Like change his diet or anything like that?
 
I read one or two things about diet and along the way, and I didn’t ever do that. Principally because he didn’t have any, well as far as I was aware, he never complained of any abdominal or bowel problems or there was never any evidence of diarrhoea or constipation, the things that you read about that the people that have gone along the gluten casein free road. So I sort of thought well unless I see some evidence that he needs that I really don’t know whether I had the energy any way [laugh] to sort take on something like that because the more you read about it, it just looks like quite a difficult thing to do. I mean I did at one point think should I have his urine tested by [name] at Sunderland University and then I just, I thought no, I just don’t think, for him it will make a big difference, because like I say there wasn’t any real gastrointestinal difficulties that I knew about and also some people talking about when their children get from hyper, you know like people who, that when they are allergic to E numbers and stuff and I didn’t really, I don’t think, apart from the occasional sugar rush ever see much evidence of that. So I sort of read a little bit and then thought, no I don’t think that is for us.
 
I did when the work came out about the fish oils look at that a bit and I knew that I would never get him to swallow the medicine but when they became available in a chewy capsule I gave them to him for a while because he doesn’t eat that sort of fish anyway, but he wasn’t very keen and he kept telling me it wasn’t affecting his brain at all [laughs]. So we’ve just tried to follow a normal healthy eating pattern.
 

Sandy could have made a house from her gluten free loaves which tasted 'horrible'.

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Sandy could have made a house from her gluten free loaves which tasted 'horrible'.

Age at interview: 38
Sex: Female
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Well we were advised to put on a gluten free and dairy free diet to see if that would control the autism a bit.
 
Have they both been on it?
 
Yes. They both did it. We did actually find it very restrictive with this sort of food that we could find for them to eat. Things like just a nice gluten free loaf of bread is virtually impossible. We tried everything. We tried different brands, we tried making it ourselves. I have got a bread maker and well I could have made a house from the bricks that came out of that. They were quite foul and to be honest I thought, “I am not going to eat that, it is horrible.” So eventually we decided that we would just get… because of the things it restricted, the sort foodstuffs that were restricted in their diet we decided to take them off it, but the soya milk is the one thing left over that Adam hasn’t been able to give up.
 
But he always used to eat a really well balanced diet. He used to eat… I have got a picture of him when he was a year old tucking into a Christmas dinner, an absolutely huge plateful. And yet since he has been on the diet the only things he will eat is virtually sort of things like chicken nuggets, fish fingers and chips. And that is it. So consequently he had chicken nuggets and chips for Christmas dinner this year. But he always has his ketchup. But I find with sweets and chocolates I have to be very careful with the amount they eat. If I give them white chocolate they both go a bit, well nuts really and it takes them a while to come down, especially Adam. Also the aspartame in drinks I am very wary of aspartame in drinks because it seems to send them through the roof and they can be up there for days before they come back down.
 
But the trouble it is Joseph is quite big weight-wise and the problem I have got is that if I can get him diet drinks, no added sugar, squash and things like that, because he is not over keen on drinking water, but then it has got aspartame in it which sends him through the roof. So I am sort of stuck between a rock and a hard place there.
 

Jane does not want to change her son's diet because of the cost and the lack of research...

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Jane does not want to change her son's diet because of the cost and the lack of research...

Age at interview: 26
Sex: Male
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Have you tried any other interventions like dietary interventions or anything like that …?
 
Jane' No. We are going we think Name has got Coeliac’s disease as well so we are going for some more testing on that and hopefully next year, we are going to give it a year to try the dietary interventions. But I am very sceptical about it for the pure thing of there is not research there to support it, and the cost of it because the cost is astronomical and it is like £2,000 for a whole year of the dietary intervention and it puts a lot of strain on us, because we think we should be doing it and we, you know, we should provide the best for our kid, and, but we have to take it in our stride and we don’t want to introduce too many changes to Name’s life. So, and I can’t cope with too much change with dealing with him, so we are just taking it one step at a time and possibly next year, we will possibly look down the line of doing something like that.
Supplements and complementary treatments
Several parents discussed giving their children fish oils in the form of omega 3 tablets and cod liver oil and herbal or homeopathic remedies such as Cognis, an Australian Bush Flower Remedy.
 

Rachel thinks that cod liver oil has improved her boys’ concentration.

Rachel thinks that cod liver oil has improved her boys’ concentration.

Age at interview: 42
Sex: Female
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Have you tried anything with their diets?
 
No, because they never had… Well they are funny about their eating but we have never had a problem with them having anything that is going to affect them. So we have never had that. We do give them cod liver oil because I do think that helps with their concentration and they have that regularly. Apart from the you know, odd fads, like one won’t eat potatoes in any form, and one won’t at the moment eat anything solid. They have their funny little ways. One will eat one thing, one won’t eat something else unless … you can’t have anything touching. Matthew has to have everything on the side with sauce on the side. Tom will only have certain kind of sauces with all food and so they have their funny little ways, but they never have had food that affects them food physically like that.
 
Tom used to have that with Coco Cola, not that he has Coke very often, but when he used to have full on Coke, I used to give them caffeine free, my dad used to give them normal Coke, and we would have a running dervish round the room. But that doesn’t happen any more and we have been lucky when it comes to food and they have been fine.
 

Paula gives her children various homeopathic remedies but does not do anything to “change their...

Paula gives her children various homeopathic remedies but does not do anything to “change their...

Age at interview: 40
Sex: Female
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What they need to be doing is they need to be managing David better because I can manage him. So … and I have him all the time. But he does have… they both have Cognis which is a herbal remedy, like a flower remedy, they have Autism Combo which again is made up by the homeopath. They take, oh all sorts of different things, they take Chlorum which because they both swim for a club, they are in the Sprint League as well, so they are forever sort of breathing in the chlorine when they are sort of come up and they are breathing.
 
What else do they have? All sorts of homeopathic remedies. They don’t the Omega 3, 6, and 9 any more but we do have organic fish and things like that. I don’t like them having the Omega although it probably does improve their concentration. It also means in a roundabout way, sorry, this is taking so long to answer. They – when their food intolerances were done they both ingested mercury. Now whether that was from the inoculations that they had both had or whether that is from mercury that is in the fish oil, from where the fish are in horrible bits of sea where there is so many toxins anyway. So I immediately put a stop to that and when we had them tested again the mercury had lowered. So yes, we do have, all sorts of remedies here, but we don’t do anything that is chemically going to change their neurotransmitters because they are who they are.
Some parents also removed food and drink containing additives and E numbers from their children’s diets and noticed that their children were calmer and less hyperactive as a result.
 

Helen and Jason’s son has learnt to say no to fizzy drinks and sweets.

Helen and Jason’s son has learnt to say no to fizzy drinks and sweets.

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Helen' We still run an E number free diet. We all live it don’t we, really and truly?
Jason' Yes.
Helen' It is a whole lot easier to run the whole family on it. There is no Coke in the house and we have only just introduced orange squash back into the house. And it goes over the bottom of the glass and he feels there is some in the glass but believe me there probably isn’t [laughs]. Flavoured crisps are out, of course Smarties, Skittles, anything like that. They don’t even exist and he has been taught that he doesn’t accept sweets from children. I know usually you don’t accept sweets from strangers, but you don’t accept sweets from even your friends and now he will stand in a shop and say, “I can’t have those can I mummy? There is E numbers in them” and he knows what he can and can’t eat which works for us but is another form of independence and has gone against us when it comes to help.
 
Yes, no, the diet thing. We have run the diet thing. That was our main change and it did make a big difference, taking the E numbers out. He eats a lot of fresh fruit and vegetables, most meat, hates cheese, won’t drink milk, but that is nothing out the ordinary, kids all go through that I think. So we get there one way or the other, don’t we? He has got a good diet actually. Having spoken to a lot of other parents where the kids eat cold baked beans and a banana or whatever and they seem amazed by what we get past him, but if you don’t eat it at our table you don’t get anything else and I don’t back down. So that seems to have worked but he is coming against somebody that is as pig-headed as he is. It is perfectly healthy food, you will eat it or you go hungry and it just gets put back in front of you, again, again and again, which I know sounds horrible but it seems to have worked and now he does eat apart from brussel sprouts which is nothing.
Overall, it was clear that parents had mixed experiences in trying different therapies, medical interventions and dietary changes. Some things worked for some children while other parents had tried interventions unsuccessfully and sometimes at a high cost. It is important to find out as much information as possible about a particular approach before deciding whether or not it is best suited to the child and their families individual circumstances.


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Last reviewed July 2017.
Last updated November 2012.
 
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