He is – well he has been on everything but hes 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….

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 oclock 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 Im 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 oclock at night, you know you are going to have trouble shifting him in the morning.

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.

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 hed 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.

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.

Theres… 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.

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?

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 elses 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 elses 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

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 weve just tried to follow a normal healthy eating pattern.

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.

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.

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.