Tuesday, 14 February 2012

ADD or Allergic Diet Difficulty?

I'm working on a post about our family's story in which I will introduce Tom to you more fully, so you won't know it yet, but Tom can certainly be described as full of energy! Clearly his restricted diet is not getting in the way of his ability to burn calories - and talk. He is full of character and at times fizzes like a noisy bath bomb (but without the nice smell!).

Tom loves his sports. He has had a hectic schedule of activity inside and outside school. In my view this has been essential for Tom, who otherwise struggles to settle to his academic work. If he has had a good run around in the morning, he has a good day at school. He's always been like this.

Then recently, as he turned ten, he moved up a year at school, started working a longer school day, got more homework and we had a change round at home (of that, more to follow later). Suddenly he was exhausted and didn't have enough time to do his school work as well as all the sports. Within two weeks he dropped all his out-of-school and after school clubs to release more time. Now he had more time for his schoolwork, but still seemed to struggle to get it done. He found it really hard to concentrate, to remember what to do, to plan and complete big projects. He started getting into trouble for misbehaving in class - shouting out, not waiting his turn, not sitting still, not concentrating - and into a whole lot more trouble at home for not thinking of others, not doing his daily tasks, basically what seems like persistently not thinking, listening and/or concentrating.

We struggled with this for about four months. It caused a lot of strain in the family. Then finally we decided it was time to act. We began exploring whether Tom might have some sort of hyperactivity disorder.

I started by speaking to his (luckily very experienced, male) teacher. I was both relieved and surprised by what he said - "Tom's behaviour doesn't strike me as extreme enough to be a hyperactivity disorder, but it is typical of what I would expect of a severely allergic child". He should know. Not only has he taught quite a number in his career, he has two severely allergic children of his own.

That comment stuck in my head, mostly because I didn't know what he meant. Nobody had ever told me that it might be possible for Tom's allergies to affect his behaviour. And that's despite previously having asked various doctors and specialists whether it was possible his medication was making him over-active. I guess they'd all assumed I'd been told, or they didn't have enough evidence to prove whether or not it might be true. Of course, I'd read about artificial colourings and flavourings and the effects they can have on some children, but Tom's diet already excluded them...

We started seeing a family counsellor. It goes without saying, of course, that not all of our problems stem from Tom's behaviour. We all play our role in the stresses of family life. But there is something about Tom that I can't quite put my finger on. I've had a long time worrying about such things in the past. Quite often they have turned out to be important.

So yesterday I had a bit of spare time sitting around, waiting (I've been obliged to act as a Juror for the next couple of weeks and I was waiting for the trial to start). I had taken an intersting looking book out of the library - "Raising a Son" by Don and Jeanne Elium (3rd Edition, First Celestial Arts publ., 2004) - partly because I saw it had a chapter on Attention Deficit Disorder. I guess I wanted to learn more about ADD and ADHD, and to check whether Tom's behaviour was in any similar to what they described.

Suddenly, there it was again "The first step is to discuss (your) son's problematic behaviour with the family doctor. He or she will want to rule out other possible causes, such as .... allergies...". It was one of those electric lightbulb moments.

So today (during another quiet moment) I was revved up to see if I could find out more. Googling on my i-phone I got straight to some illuminating articles, including this particularly intersting quote from  and an article entitled "Understanding Food Allergies" - "As many as .... in three (adults and children) with behavioural problems react allergically to common foods such as milk, wheat, yeast and eggs. The knowledge that allergy to foods and chemicals can adversely affect moods and behaviour in children has been known, and ignored, for a very long time."

And what surprised me most of all, was my reaction - a Positive Reaction - a combination of discovery, revelation, understanding and relief. At last, here is a plausible reason why Tom might be more active than other children which did not involve him having another new label, another biological condition to be managed, or even just underlying early adolescent attitude problems! It just might be a previously unknown (to me) side effect of his allergic condition.

And so begins another new leg in our journey of living with food allergies!

Now I have to find out more, understand more, work out what it means, and hopefully identify some changes we might be able to make that will help Tom to improve his behaviour without giving this so much focus that our other, non-allergic kids become jealous or develop their own behavioural challenges through lack of attention to them. Hopefully it might mean changing his diet. After all, we have plenty of practice at doing THAT!

Can you help?

If you know any useful, reliable, authoritative sources of information about understanding and managing hyperactive behaviour in children with food allergies, please let me know - and I will keep you up to date with our journey and what I learn along the way. And if you have a similar story to Tom's, I'd also love to hear from you!

Your Feedback

In response to my tweet asking "Have your child's food allergies affected their behaviour?" I received a number of positive replies, including the following

"Yes, yes and yes! My own difficult child became calm and cheerful once gluten-free" (with thanks to @GlutenFreeUAE)

"Definite brain / gut connection!" (with thanks to @GailLummis)

Sunday, 5 February 2012

How many times have you read that "Eating out can be a challenge"? The more I look at allergy advice websites, guides and blogs, the more I see it. Whether it's "advice" on "living" with life-threatening food allergies, food intolerance or coeliac disease, it keeps popping up.

But I'm not so sure that's the right way to look at it. Not once the journey of living with allergies is properly under way. Let me explain - and I hope show you how it is possible to react more positively to a life with allergies.

The first part of the journey of living with food allergies (as the person-who-also-happens-to-have-allergies, or as their parent, friend or sibling) can certainly be "challenging" in its own right, as you learn to take nothing for granted about food, how to deal with allergic reactions, how to look for hidden ingredients, how to prevent cross-contamination in the kitchen, and so on. And during that phase, there is no doubt that eating out can be "challenging". There are countless places on the Internet providing advice on how to eat out safely with food allergies - contact the restaurant beforehand, talk to the Chef, communicate your "challenge" clearly with the waiting staff when you arrive, be assertive, if you're not sure then leave, always carry your emergency medicines.... all true, all good stuff.

And I'm not saying that's not important - it is, even when the journey is well under way - but it misses one very important point - the reasons we often choose to eat out in the first place! Eating out can be fun, relaxing, time off from preparing meals, meeting friends, laughing, talking, experiencing something new, enjoying the theatre, sharing in the buzz of life, the throng of people and conversation, staying out late....

It seems to me the advice that's missing is how to manage the health risk of eating out (and the anxiety that brings for many of us) while also sharing as much as possible in joy taking part.

So here's my thought for us all to remember, so that we can be free to think positively about eating out

There is more to eating out
than simply consuming food

What does that mean? Here are some positive suggestions for how to think about eating out with food allergies, intolerance and coeliac disease:

Eat before going out. If the person with food allergies eats before going out, then, if there is any doubt about how safe the food is, or if there is nothing suitable on the menu, there doesn't have to be a big scene. In my experience, when the party has to get up and leave and find another venue it doesn't make the person with food allergies feel good, socially. It could even become a hidden social pressure not to speak out if they are unhappy about the way they are being treated, expecially in a big group. If there is good food, they can eat. If not, the person with food allergies can choose not to order anything - but they can drink, chat with everyone, enjoy the atmosphere, enjoy the event without any fear of their food allergy embarassing them socially.

Take your own food along. The person with food allergy can take their own food, plated up, as many courses as they want. No restaurant has ever refused to allow this for our family once we have explained the reasons. And when we've asked, none of them ever refused to serve it up as if they had made it, either (plain white crockery usually fits in). Not perfect, I know, but at least everyone can relax and enjoy the occasion, and it can avoid any social embarassment. And if, as seems to happen more and more often these days as the industry starts to understand and gear up to meet the needs of people with food allergy, there IS something on the menu that you are confident about, for any course, then the prepared food can be ditched and the person with food allergies can join in all the fun with everyone else.

Check ahead. The person with food allergies (or the person who cares for them) can get ahead of the game by checking the menu and food preparation precautions in advance (online, and if necessary by phone), without others in the party knowing. They could even place a special order in advance. That way, when the time comes and you're all there, none of the other people in the party need necessaily know anything.

Maybe you have more suggestions? Please let me know if you do....

There is one more important message I want to share with you which goes to the heart of this blog

Social needs are sometimes
more important than medical needs

It is very easy to feel isolated, apart, different from everyone else when you have food allergy, food intolerance or coeliac disease. And though you might wish that problem to go away, to deny it, to pretend it isn't real, sooner or later we all have to accept it is part of our life now (and the sooner that happens, the sooner we can get on with living a happier life embracing what is for us, the "new normal"). This feeling of isolation can make us turn down time with friends, opportunities to go out, for fear that our health issue might become a more obvious social issue, might set us even further apart, especially if it's a meal out.

That's the time to be positive. Social contact - chatting with friends, enjoying life - it makes you feel good, it makes you feel loved and valued as a person, no matter what ailments and maladies you might have.

Maybe one of the ideas above could help you deal with the eating out "challenges", to get socialising again? You just might discover that your friends and family are far more important to you now, in improving your wellbeing, your social confidence, than any amount of medical or food advice. So lighten up on yourself a little. Just this once, don't sweat about the food - do what every other person does, food allergic or otherwise - focus on who to see, what to wear, what to talk about, what news to share, what to drink, where to go. Focus on having fun, focus on living. Get in there and enjoy it. And when you feel great about life and living, it will be that much easier to deal with your allergies too!

One final anecdote, which just goes to prove that if you put yourself in the way of opportunity, you never know what might happen.

On a recent meal out we took the "take-your-own-plated-food" idea above. We'd been to Pizza Express before, but this time we tried a new branch a bit further away. When we got there, we had an excellent, caring, attentive and thoughful waitress. She made some enquiries and pretty soon we discovered not only that Tom could have the dough balls with garlic oil for starter, but also they could make him a tomato and ham pizza. They even had an egg-, dairy- and nut-free sorbet for dessert. Tom was elated! It was his first, full, proper meal out. I have rarely seen him smile so much over one meal - it was a great evening out for all the members of the family - happy, relaxing, chatty, fun, theatrical, lively. Just what a good meal should be, don't you think? Of course, we could have stayed at home to avoid the "challenge" of eating out. Thankfully we didn't!

Wednesday, 25 January 2012

Tom inspired me to start writing this blog. I'd like to introduce you to him. He is my son.

Tom is ten years old. Although he is below average height, he makes up for it in energy and character! He loves swimming, dinosaurs, school, mountains, jokes, Wii, Majorca, running, performing on stage, birthdays, his family, lego and his big blue dressing gown. He loves to make other people laugh. When he grows up he wants to be either a superhero or an underwater paeleontologist. He is quite cool because he managed to break both arms in one fall. He is a child. He plays. He only thinks about today. And he has life threatening allergies.

And that's going to be the point of this blog.

For too long I have allowed myself to be preoccupied with the medical necessitites of managing Tom's health, while ignoring the potential downside effects on his mental health and self-image. I have allowed myself and others to see Tom as a victim, an allergy "sufferer", to allow his allergies to define him, to dominate our thoughts, to dominate the choices we make. OK, maybe that has kept him alive so far, but like all children, Tom is an emotional sponge. He picks up on all our anxieties, our negative feelings, our hesitations. He takes them in and gradually they have taken hold of him, changed him, twisting his attitude to life and living. I can see now, he is beginning to see himself as a sufferer, a victim.

This blog aims to stop that negative reaction. Instead I want to create a positive reaction. I don't just want Tom to be alive, I want him to live. Life is more than an unbroken sequence of breaths. We are so much more than our suffering, our diseases, our misfortunes. Life goes on. It's up to us what we make of it. And believe it or not, adversities build within us the potential to achieve so much more than we ever thought was possible.

To be able to live, Tom, like all the other people-who-also-have-allergies, needs to believe in himself and the power he can exert over his own life, his own ability to control and shape his future. He needs to think and act positively. Yes, he must respect and manage his allergies, he must survive, but to really live and make the most of his life, he must also thrive.

So, from this point onwards, first and foremost, Tom is a person - a whole, wonderful, growing, complicated person. He has his whole life before him, a world of possibilities to explore, fields to roam, maybe sadness to endure, but also fun to share, a life to live.