Feeding Tube Awareness Week

Today marks the start of Feeding Tube Awareness Week.

There are many different reasons why children and adults need feeding tubes, not always the ones you might imagine either. There are those who can't eat, and those who can't absorb enough nutrition even though they appear to eat well. Those who won't eat, because you cannot imagine the fear involved in eating if you know swallowing could cause you pain, stop you breathing, stop bowel function - association is very powerful. There are also those who can eat and must not, for whom the switch can be painful emotional, psychologically.

If you haven't been there you shouldn't judge, shouldn't assume, but neither should you feel sorry for the person with that tube. Because feeding tubes save lives, give parents back their children, give back life to adults to spend more time with loved ones, facilitate living when barely existing is the alternative. They can restore normality and health - albeit a slightly altered version.

I was so grateful for my son's tube, it gave us our bouncy, cheeky, intelligent little boy who began to enjoy life once he was feeling better. It gave us HIM as a focus instead of how much he ate and drank. Things are still a little wobbly but for us his tube has done its job, and we are hoping 2013 is the year we bid it farewell.







Feeding tube awareness is so vital for the minority of us who have to live with them. We've had many comments over the years "Give him to me...I'll get him to eat more." "But he looks all right, my kids don't eat either." and more recently "But he eats really well, why on earth would he need a tube?"





Just like any other disability, awareness is key, because with awareness comes understanding, and with understanding comes support. Because many mothers with a tube fed child feel a sense of failure - nourishing our children is our most fundamental role. It's like a "badge" of failure at times, when in fact taking that difficult step agreeing to tube feeding can be one of the best things you do for your child.

And here he is. My Superstar :)

Happy Birthday Harry.

After a particularly traumatic time with my eldest son four years earlier I was extremely apprehensive at the thought of going through a similar thirty+ hour labour. Given the inescapable fact that I was hurtling past full term carrying what the scans testified was a baby with a large bowling ball for a head I wasn’t desperately encouraged that the obstetrician's view that “second time was usually easier” could possibly be true. 

The irony was that as a mum with a virtually inactive thyroid I was required to have frequent "growth scans" to check my new addition was growing appropriately. What the scans highlighted, but no one seemed interested in, was that my baby was growing exponentially... Forget centiles, this boy had a whole graph of his own when it came to head size and his femur wasn't so small either! Natural Labour wasn't on the cards either as allegedly thyroid disease usually puts paid to this, and certainly after 42 weeks my sense of humour was suffering a severe and potentially terminal failure. We had sold our house and finally found another (on my due date) and had approximately six weeks before relocation. Having a little time to settle in with my new son was definitely the preferred option, before packing and putting everything into storage and moving in with my parents. (Yes, we really have done that twice.)

In a last twist of fate the hospital couldn't locate my delivery notes from my first child as I had since married and changed name, and of course there was no such thing as a NoSQL database at that point to associate the data which DID match. (Clearly my husband should have got this IT project out a few years earlier...) So, the jovial Obstetric Registrar assured me a bed would "come up soon" and there was nothing to worry about and he was certain as it was a second baby all would be fine.
Someone once said to me that "God never gives you more than you can cope with". I think I laughed at that point.....

It wasn’t. Nearly three weeks overdue I was induced and my baby became very, very stuck. Like so many mothers of children with disabilities I frequently find myself wondering what, if anything might have “caused” his difficulties? What could I, should I have done differently? Because nearly losing your baby before he even makes it into the world is not a good start. Not emotionally, not physically...... For either of you. We came closer than I usually choose to remember to losing our little boy, who then valiantly recovered leaving me going through an extremely unpleasant post-heamhorragic episode. Nothing about Harry's birth was easy, or straightforward, but then I often ponder on the appropriateness of this arrival since he's not one for making a quiet entrance even now!

Despite such a dramatic entry into the world, Harry was by no means a sickly child. Note the “l” in that word. Very important that.... Because just like his siblings before and after he was a very *sicky* child. (No “l”). All my children have reflux, mine were the babies everyone admired from a distance, those babies that other people declined to cuddle or hold close “just in case”. Fair enough really, an effortless deluge of second hand milk is not a good look - I’ve worn it many a time and I assure you the reaction from others isn’t a good one. Sympathy, surprise, even horror sometimes because we really are not talking about possetting here. Not small amounts of baby spit, but most of the feed from a good hour before. Nonetheless I felt fairly unperturbed dealing with this, after all I had gained the proverbial T shirt over the past four years, I was an expert with experience and knowledge to boot. If only that were the only challenge my new addition was going to throw at me!

Many years on, with a collection of "diagnoses" to confound any medical student my wonderful, unique, gifted, outrageous, witty, impossible, intuitive son turns eleven tomorrow. Such an incredible journey I feel privileged to have shared. It's been a journey of such highs and lows a Hollywood blockbuster could not emulate, a journey of true discovery and education. 

Today however I know what she meant. But what she should have said is - "God never gives you more than you are capable of learning". After eleven years I am still travelling, still learning. And what an amazing journey it is.
Happy 11th Birthday Harry. xx

Christmas Thoughts!

Twas the day before Christmas, when all through the house

The children were squealing, “The cat’s caught a mouse!”...

A present for Harry, her favourite friend

She brought him the one thing a small cat would send.

The Free From mince pies were safe in the tin,

No dairy, or soy, wheat or gluten was in

Mummy had not had to bake much this year

‘cos Genius sent a large box of good cheer!

The Mulled Wine was flowing, Norad was on

The stockings were found and the chocs were all gone

Presents were wrapped, a last minute panic-

Have I remembered them all, the town must be manic!

Daddy had gone to pick up the meds

Last delivery this year, Mummy had said

The regular trips to the pharmacy gate

Collection of crate after crate after crate.......

We keep them in business, or so it must seem

To keep our kids well, it is always our dream

It seems never ending, a burden at times

Whilst onlookers claim “they always look fine”

How little they know, the long sleepless nights

Tummy aches, traumas, it’s not fair and not right

As we all keep going with loud cheery voice

It’s the right thing to do - and we don’t have much choice

There are always so many worse off than you

With loved ones in hospital, so sad but so true

People with no home on this Christmas night

We just can’t ignore them - that would not be right

So please all this Christmas with all the good cheer

Spare a thought for all those not so lucky this year

We all live in such an affluent place

Yet neglect the most needy - it’s such a disgrace

Spare a thought for the homeless, the mentally ill

The sick and the frightened - they need your Goodwill

Support those who help, who give of their time

And make a donation as you sup your mulled wine

Crisis and Shelter, Macmillan and Mind, 

So many to choose from I’m certain you’ll find

A cause with some meaning that speaks out to you

Christmas means sharing and giving it’s true.

So we wait for the man in the jolly red suit

With “Norad Tracks Santa” hot in pursuit

I’m thinking of friends, near, far and here

And sending out wishes of good Christmas Cheer

It’s been a good year with much to remember

As we come to the end of another December

We hope that the next one will turn out all right

Merry Christmas to all and to all a good night!

Seriously - VOTING for the local police commissioner?

How has it come to this?

On Thursday last week a Poll Card dropped through the letterbox. I didn't think much about it until on closer inspection I noted it was for the local Police Commissioner. Since when did the public choose such a vital local professional? We might as well shut our eyes and pin the tail on the proverbial donkey  - we would have as much chance blindfolded of picking a suitable candidate.

And what does "suitable" mean? Something different for each locality maybe, but that's something I would prefer those who know the candidates to decide. A commissioner needs gravitas, respect, authority, experience and other such attributes I could not possibly assess. Considering there has been absolutely no publicity whatsoever for this election I certainly don't feel qualified to vote - and disagree with the underlying premise that this should be an elected role.

Can you imagine the scenario - someone with some campaign experience and political knowse but little on the job training gets elected and needs to command the respect and obedience of a force responsible for enforcing local law and order. Someone the rank and file might not have picked, or someone with sufficient private resources to to further their external campaign when they would have had little success winning internal votes within the region's force. Chaos. Or at subdued rebellion ... at the very least resentment. How does that work when a united front is needed to fight crime?

Hang on. That all sounds a little familiar? There is a certain theme here both in Education and Health is there not?

It's hard enough at any time, but giving those so ill informed a greater say in issues like this is the same as central government interference in local issues in my book. Two extremes which are equally inappropriate. I'm all for increased openness and accountability but by those qualified to do so. It's not "Big Society", it's passing the buck - or more precisely, passing the target. I sincerely hope these new commissioners are as good as their manifestos and that their qualifications do indeed exceed dog walking and golf.... because when things go wrong they are going to need the powers of a politician to deflect the criticism which will stream from both local and national sources. And surely, that is NOT in the job description of local Police Commissioner?

It is over-politicisation (if that is even a word) and under valuation in the extreme. But it is more than that - it is a basic avoidance by Central Government to tackle a thorny problem and avoid shouldering the criticism weighing them down since the 2011 riots. Which in my opinion is not "Big" on anything except responsibility avoidance. Using decentralisation in this way wraps everything in a political fog and undermines core values we rely on to make society work.

All about Allergies, immunity and Autoimmune Conditions

When most of us think of the word "allergy" we are thinking of a systemic immune response, or at least an immediate and visible reaction. For myself as a child, allergies meant allergic rhinitis - streaming eyes, runny nose, and atopic reactions (rashes, usually itchy) to almost everything it seemed. My bedroom floor was regularly hoovered, as were the curtains and the bedding was washed every few days. My teddy lived in the freezer during the day for some time too to help eradicate the house dust mites I was so allergic to. I was on Beconase inhalers for years and we probably should have taken out shares in Piriton... However there are different kinds of allergic responses.

IgE MEDIATED RESPONSES
The above are all IgE mediated responses. True allergies, and allergies you can test for. IgE is an immunoglobulin. An immunoglobulin is "any of a class of proteins present in the serum and cells of the immune system, that function as antibodies".  There are five subclasses of immunoglobulins, explained here far better than I could. DO read that link, it's the single best source I have found for non medics to explain your immune system and how it is classified.

IgE responses can be tested for - in Skin Prick Tests, and in RAST blood tests. The former have to be properly done to be accurate and reliable - we spent two years carting around an epipen for our second son who was allegedly allergic to peanuts - only to be retested a couple of years later (properly) and be told this was in fact rubbish. (Whilst some allergies can be outgrown, this is almost never the case with an IgE reaction to peanuts.) RAST blood tests are interesting, because they cannot in fact measure the severity of the reaction, the higher the number the higher the exposure rather than severity of response, so an older person would be expected to have a higher count.

NON IgE MEDIATED RESPONSES
You may think that a non IgE response would have to be what is termed an intolerance, but you would be wrong- along with an alarming number of health professionals I have encountered! An intolerance does not involve the immune system at all. A non IgE allergy is also known as a Type IV sensitivity, or cell mediated response. It is a local reaction and is rarely possible to test for. Gut allergies are delayed hypersensitivities, which is why food allergies are so traumatic and difficult to manage, requiring strict exclusion diets to determine responses to possible triggers. Imagine an eczema reaction in the gut - it's a localised response to an allergen (or a false allergen which the body responds inappropriately to) and causes a localised problem - no anaphylaxis, no outside response (although IgE responses are often present in addition in those with gut allergies) and is very difficult to diagnose.
Gut allergies are always responses to proteins, protein molecules are those the immune system responds to. Problems with carbohydrates/sugars such as lactose intolerance are not (as far as I know!) allergies.

GUT INFLAMMATION
Now imagine that patch of inflamed, irritated gastrointestinal tract - if your skin has a patch of eczema it is less supple, less flexible, cannot function at its best. Gut tissue is the same - it cannot function as well as it becomes inflamed. Inflammation ANYWHERE in the GI tract can cause symptoms anywhere else along its length. So, you can have reflux (which is only ever a symptom, be it from food allergy, obesity, muscle disease, ligament laxity, developmental delay etc) constipation, vomiting, diarrhoea, trapped wind, acute pain, chronic pain, bloating, wind - all from gut inflammation due to a localised allergic response. All too often I hear of children and adults with reflux symptoms, who have an upper endoscopy ("scope" where a camera is used to look down your throat as far as your stomach, and sometimes down to the small intestine below but only a small way down.) and a ph study which is negative and they are told there is no inflammation, no problem. It's happened to us too, my daughter was fobbed off for years until someone bothered to look lower and found inflammation and ulceration, causing the reflux further up. Bowel inflammation can, and does cause reflux. There are often other clues but sometimes it is that simple.

APPROPRIATE CARE
What is so concerning is the difficulty so many parents are having in getting appropriate care for children with clear reactions to food. Any parent with a child suffering from food allergies will tell you how their child reacts - yet if skin prick tests and RAST tests are negative many doctors come to the conclusion there cannot possibly be an immune response. Some doctors prescribe patch testing, which does indeed show delayed responses, but only on the skin. If it is only your gut tissues which is reacting, they are not going to be particularly helpful.

Another useful test is an serum IgA blood test. Immunoglobulin A is the major antibody found in the membranes of the respiratory and gastrointestinal tract. The second most common immunoglobulin in the human body, IgA can also be found in tears, saliva, mucus, and colostrums. IgA is one of the most important immonoglobulins in local immunity. Interestingly those with gut allergies often have low IgA levels, and in those who outgrow their gut allergies their IgA levels often rise approximately 6 months before such improvement become obvious when closely monitored. This is another reason why the antibiotic Azithromycin is so successful as an anti inflammatory agent in the gut, because of its role in the absence of IgA.

REFLUX and GUT INFLAMMATION
There is a huge surge in babies with reflux in the West, which is often due to gut allergies such as Cows Milk Protein allergy or reactions to other food proteins. It is often outgrown by the age of one but in those whom it persists into childhood underlying causes need to be investigated - any paediatrician should tell you that. The gold standard test for reflux used to be a ph study, measuring the ph at the top of the stomach. However, reflux caused by bowel inflammation is unlikely to be acidic unless the stomach contents at that time are acidic! Reflux caused by bowel inflammation is more likely to be alkaline, and shows up best using an impedance study or pressure test, used in conjunction with a ph probe. Gut inflammation will reduce gut functionality and therefore cause pressure changes along the GI tract.

No one is exactly sure why there is almost an epidemic of gut inflammation in the West. Many will tell you it is the overuse of antibiotics, the increasing prevalence of GM foods, over production , pesticides, chemicals etc but the truth is we just don't know. One thing is certain though that gut allergies are on the rise. In America there has been a surge in the number of diagnosed Coeliac Disease cases - interestingly Coeliac is another delayed hypersensitivity, as is Chrohn's Disease. Eosinophilic Disease is also thought to fit into this category which makes it so very difficult to treat and manage.

FOOD ALLERGIES AND BEHAVIOUR
Until quite recently there was little understanding of the way gut allergies worked. Recent research at Great Ormond Street has shown how neurotransmitters in the gut sit next to mast cells which are responsible for these local gut reactions. As these mast cells degranulate they release huge quantities of toxins which cause a local pain feedback cycle. They are also soaked up by the neurotransmitters and enter the central nervous system. This is thought to be how food allergic reactions cause the behavioural issues we often see in children with food allergies and could also explain why the casein and gluten free diet for Autism might just work for some children, who in fact display ASD type behaviours due to delayed gut hypersensitivities.

VACCINATIONS
Local gut reactions also cause an increase in histamine levels which make the gut wall more permeable. Anyone heard of Leaky Gut Syndrome? Something I thought highly "alternative" and improbable until I was immersed unwillingly into the world of gut allergies. What is more concerning is recent GOS research which is supporting the theory that the blood brain barrier is permeable (as is the gut) when local immune activity is present. Teething can also precipitate this permeability by raising histamine levels. There is in fact current speculation as to whether a highly allergic child - whether IgE or non IgE  - and/or one who is actively teething should have their vaccines postponed/delayed. This is similar to the theory postulated by Andrew Wakefield, whose totally flawed study left him hung out to dry but which buried the real message that timing is actually important with vaccination and that the links between the gut, Autism and vaccination might well have more to do with histamine and gut permeability than multiple vaccination programmes.

AUTOIMMUNE DISEASES
Lastly what i find particularly interesting coming from an EGID perspective is that several Autoimmune diseases are also Type IV hypersensitivites. Hashimoto's Thyroid Disease (which I suffer from) Diabetes Type 1, Arthritis... all the same type of reaction by the body. There are extremely strong links between gut allergies, immune profiles and autoimmune diseases. My children also have low IgM and IgG levels - again, common in those with autoimmune disease, but also caused by gut inflammatory conditions!

So despite being non-IgE, impossible to test for allergies, the immune profile of these localised, delayed hypersensitivities is perhaps more profound than the more obvious, recognisable IgE responses we are all more familiar with. I think it's about time the medical profession sat up and took notice of the autoimmune time bomb in the West and the surge in gut allergies - REAL food allergies so many people (and particularly so many children) suffer from ARE relevant, and health professionals in the twenty first century have a responsibility to take them very seriously indeed.


DISCLAIMER - I am not a doctor, the information above I have ben told, read and learned over the years. The opinions are not only my own, but it must be stressed that this is a Blog not a medical document and whilst knowledge and opinion is useful you must follow the advice of your/your child's doctor. By all means discuss the above, I have carefully referenced the information but I am not medically trained. I support and endorse vaccination programmes - having children with reduced immunity I know the importance of herd immunity and prevention of disease. I always endeavour to research issues affecting our family however and take each intervention as an individual case. 

The Bigger Picture

Well, as predicted we have a double dip recession. No one should really feign surprise given the turbulent world economy and the complete failure to date of the Eurozone to make decisive and effective plans for their intra economy. How we dig ourselves out of this mess is becoming more urgent an issue which is going to require action rather than merely babysitting the economy until it gets stronger.

I'm no economist, and thankfully no politician either, but I suspect it's going to take a situation more desperate to precipitate the necessary action for recovery, whatever that may be. Far reaching, bold decisions which focus on the "bigger picture" are rarely popular, neglect the individual and compromise the many "smaller pictures" of which they are composed. Who is to say which is right, let alone preferable, but changing direction with a heavy load in tow - be it massive debt, unemployment, social deprivation or all of the above - is never easy.

Whilst I admire those who take such bold and frankly terrifying decisions I'm not sure I could ever ignore the individual to such an extent. Sir Winston Churchill made a first class leader during wartime Britain because he possessed this attribute - yet not so many years later Britain's electorate was quick to dismiss an apparently uncaring politician. But tough times call for tough measures - the Battle of Britain would never have been won if Churchill and his government had allowed themselves to focus on the individual pilots, giving way to misty eyed sentimentality would have cost us the War - and the future of millions. But how you justify the decisions taken on such a large scale when those very decisions cause the suffering of many individuals is a dilemma as old as time.

Take the Greek debt - the country's people suffer now, will suffer far more if the debt is to be paid off anytime soon but without paying that debt off, at least in part, the future of Greece economically, socially and politically is extremely fragile. Yet who is going to take tough decisions for the many at the expense of the few?

I think the crucial point is support and endorsement. If, as in Britain in 1940 there is a clear and definite threat, an almost certain future which is far less attractive, or more terrifying than any short term or individual sacrifice then there is invariably popular support for decisions aimed at a larger purpose which neglect the individual. But the current economic situation - whilst in desperate need of some far reaching, bold and decisive big plan lacks the social and political support it would need for any hope of success.

History used to be the "History of Great Men", the storytelling Whig History of the nineteenth century. Men like Macaulay and Trevelyan allowed for sweeping generalisations to facilitate their seemingly impossible task of chronicling History to portray the bigger picture. As an historian myself I abhorred the obvious neglect of the less important individual, of social and economic trends and the use of the past to justify the present but undoubtedly without their brave attempts to achieve so much we would have been deprived of the fascinating stories which contributed so much to the understanding and appreciation of our shared past.

Sir Herbert Butterfield pioneered a more rigorous and philosophical approach to History which continues to this day, and my subject has become more vibrant and far reaching as a result, but as it seems with every strand of life political correctness has stifled and devalued any recent attempts to focus on bold and revolutionary strategies to see themes and to "bravely go where no man has gone before"visualising the bigger picture.

What the present economic situation makes abundantly clear however is that we are a society of individuals, with overlapping, similar yet fundamentally different needs, desires and aspirations. Obtaining political consensus today is far more of a challenge than it ever was in the past, yet I shudder to think the desperate situation that might be needed to precipitate the necessary agreement for moving forwards. The bigger picture will eventually take primary importance and must do so if we are to escape the current recession - but I sincerely hope we don't neglect too many individuals in the process.

If this is making you think of the current political situation in the USA, you're not wrong. The Presidential campaign in America makes this clear as the two candidates attempt to bring millions of people together in their support, people from such different states as California and the Carolinas, Kentucky and New York. The bigger picture is at the heart of American politics, as candidates cleverly (or deviously!) hide their bigger goals with heart string twanging slogans to pile everyone on the political bandwagon. For me this is a clear warning of how focussing on the bigger picture must not disenfranchise swathes of people, of individuals in the process. It would take a dire situation indeed to legitimise such a process in the UK and we need to hang on to this thought as we seek a bold and daring strategy to escape our own economic turmoil that does remembers we are not, at least not yet, facing a situation as desperate as that of 1940. Business undoubtedly needs tax breaks, we need to stimulate growth without further burdening the country with debt and spending cuts from the heady days of Labour spending may well be necessary. But when I see those cuts falling disproportionately on the most disadvantaged in society I believe there has to be a better way. I'm all for bold, for brave, for aspiration and growth, for the bigger picture, for progress........ but it does not have to impact unfairly on those least able to speak up. Facebook is awash with comments about Romney's archaic posturing, but we need to stop and think before we do something similar here too.

Rose amongst thorns

It's Wine O'Clock on a Friday night and I am sitting here proud as punch of my youngest child. I say "youngest" because those ten minutes count for something in the sibling pecking order, and can frequently be used against you by an over-controlling elder brother with zero empathy. (See "Sibling Rivalry" )

Being the only girl in a family with three boys can be tough. Initially held in awe and wonder by two adoring older brothers when she was a baby, the novelty wore off once her desire to take on the role as "Mummy's Deputy" kicked in. With one incredibly disorganised brother and two who try hard but often need a little help the temptation was too much to resist. K used to even dress her twin brother on occasion, and has been known to wash his hair and clean his teeth even recently. She is naturally maternal and caring and has a large family of dolls on whom she lavishes her affections, and I still receive daily drawings of cute puppies to try and break down my refusal to allow her one. But this care and concern for her brothers incited huge resentment from H. Being autistic he struggled to relate to twins, needing to "divide and conquer" to have any chance of social success with either. And what is easier than to ally yourself with the sibling you have more in common with? So for years K has endured daily ridicule and a verbal onslaught from H which we have tried to limit and control.

Added to this she has had to cope with her twin excelling in pretty much everything he tries, particularly in the classroom. But the situation is changing, and I couldn't be more pleased. Our little Rose (and that is her middle name too) is showing herself to be quite the artist, more precise and particular than her twin brother who loves making and is extremely good at construction, but she has a real eye for colour, detail and the ability to visualise from 2D to 3D with ease. She also dances beautifully and can sing in tune - which her brothers find more difficult. But none of this impresses H who is far more concerned with Minecraft, Java and the last episode of Tracy Beaker, and has continued to put her down relentlessly.

But today she earned his respect. H has always loved swimming and is pretty good in the water, and although he is perhaps overly optimistic he has aspirations to be the next Michael Phelps. So on learning that in today's Year 1 swimming gala K helped her class win (over the parallel class favourites) as one of the fastest swimmers H stopped in his tracks.

"Really? But you're so little!" he exclaimed.
and then the best bit......

"That's amazing. Wow - you must be really good. Like me! Respect. Much respect."

Indeed. Much respect, and much happiness on hearing her older brother consider and value her achievement. Happy day.