About Me

Firstly, this post has NOTHING to do with me!

Honest!!

As our regular readers know, the main testers/tasters for the Recipe Resource have quite a few health issues as well as allergies and it can be a bit confusing for those caring for them - e.g. teachers in school.

Obviously like anyone else we have completed the medical sheets for school, and written a long page detailing diagnoses, medication etc but what staff *really* need is a quick, "go-to" sheet, preferably with a photo of the child concerned with a sentence to introduce them, then approximately ten points in the child's words to describe how their condition affects them.
This is especially valuable if there are new or supply teachers and avoids bombarding them with unnecessary medical information.

Gut Allergies - and why we NEED awareness and understanding

On the support forum I run and another I co run I am constantly writing the same replies to the same questions. Time and again the same questions come up - a child/baby with reflux who the doctors say they will "always" outgrow by 6 months fails to do so. Then 12 months comes, but weaning is problematic and the child appears to be reacting adversely to Cows Milk, Wheat and other foods. Tests are negative and parents are fobbed off and made to feel they are blowing symptoms out of proportion.

Many doctors perform allergy tests, for gut allergies which cannot be tested for, and then promptly dismiss the case because there is nothing for them to do. They may perform a pH study, previously the "Gold Standard" reflux test which cannot detect alkaline/allergic reflux or pressure changes in the bowel and possible allergic bowel inflammation is never picked up. Few hospitals can offer an impedance study, fewer still know how to interpret the results adequately. So because they don't have a clear answer many doctors are dismissive.
You would be horrified how often this happens, I hear about it all the time.

Some carry out endoscopies but stop above the stomach and the results are clear - so there must be "nothing really wrong". All too often the spotlight is then turned on the mother who "must" be neurotic, over-reporting symptoms, depressed perhaps? But lack of understanding or explanation is NEVER an excuse for being dismissive and accusatory. Ignorance does not excuse such actions - or have we not come so far from the Witch hunts of the seventeenth century? I have no explanation does not equal "someone is to blame". Even the most sympathetic doctors run out of ideas when tests come back clear.

I'm not sure what alarms me most - that there is still so little understanding amongst health professionals about gut allergies and their impact on the full length of the GI tract and elsewhere, or the stark truth that gut allergies in infants and children are occurring in epidemic proportions.

For us, we struggled for years with all of the above until we were referred to GOSH who FINALLY performed scopes below the stomach. Bingo. Serious bowel inflammation, duodenal ulcers and other damage. Everything above the stomach had looked near perfect, ph studies had been reasonably  acceptable... and skin prick tests negative for the most part. Dealing with an emergent disease like EGID, or symptoms which doctors have yet to put together and diagnose is a massively uphill slog, and unless you have the strength of Goliath, the stubbornness of Thatcher and the unwavering focus of Churchill you don't stand a chance.

But aside from all this the bigger question is being neglected - WHY are SO many children suffering severe gut allergies? Why does our youngest generation suffer food protein allergies on epidemic proportions? Because seriously, that's what we are looking at here. At the twins' school, six children have diagnoses of EGID now. SIX. And of those I have helped support on forums over the years, friends I have made, I know about 50 children with gut allergies impacting seriously on their lives. Our Consultant at GOSH asked my daughter and I to appear on TV for the 100th Anniversary of GOSH to spotlight the Gastro department and highlight the escalating number of children suffering from gut allergies. He used the word epidemic then, and it was no exaggeration.

But it seems no one is doing the Maths, taking the data and analysing it. No one is sending out the information and any new results to local hospitals, explaining how gut allergies work, sharing new knowledge. Our NHS is functioning in crisis mode and only dealing with the here and no, the in-my-face-and-un-ignorable crisis/case I have to address. But at some point, SOMEONE or some group is going to HAVE to address this massive issue and start looking at why our children cannot eat. At why their digestive systems are no longer happy in the twenty first century first-world environment we are bringing them up in.

Until then, I will continue to post the same answers, day after day, and share the information I have learned over the years, the information GOSH share through their APG Study Days for Parents and Professionals because until *everyone* understands what a gut allergy IS (and it is NOT an intolerance!!)  there is no hope of a consistent, helpful approach for parents in the nightmare that is feeding and caring for a child whose gut cannot perform the basic functions it was intended to AS it was intended to. And I, for one, cannot live without hope. My children and all the other children I know suffering with gut allergies and related diseases deserve better. FAR better.

Independence

We often discuss behaviour and allergies on here, but this is a different slant - behaviour and independence.

I've been thinking about the concept of independence quite a lot recently. With H about to set off to High School in September, learning to walk to school safely by himself and (attempt to) pack his own bag each day it was bound to be playing on my mind. However, I'm actually referring to independence in the context of his younger siblings - because H IS actually gaining independence, and in a terrifying-but-oh-so-liberating way I am watching him grow and mature with a smile on my face day by day. In fact that smile is fairly smug if the truth be told, since we have come within a hair's breadth of total exclusion, Special Needs placement, PRU and respite care more times than I care to remember over the past years. But there he is, eleven and a half - going on 15 in oh so many ways and yet still emotionally so very young. Yes, I'm pretty smug about that.

But the twins are a different "kettle of fish" entirely. A in particular hangs on to me, paws at me, "needs" me in a way his older brothers never did. You might say this is not that surprising given that he has complex health issues - but so does H, and so do an awful lot of other children I know who do not have this strong immature attachment at seven and a half.

I've pondered this at great length, with a large dose of self blame and not a great deal of clarity or insight. But today, whilst baking their "free from" sausage rolls, the penny dropped. Or more precisely, H's cat decided to steal one when my back was turned - and the complete over-reaction this precipitated and the depths of despair I felt caused the "penny" to sink firmly and completely at last.

Babies and young children depend so completely on their mothers for food and care (well, usually their mothers - let's not get caught up in a circular politically correct argument) and the umbilical cord of pregnancy in fact continues metaphorically well into childhood. There are many papers and books written about children's development and their growing independence - how they learn to loosen the ties sufficiently to promote healthy independence. (This isn't an essay requiring careful annotation and quite honestly I would rather get my point across but you can of course google.) I do remember reading such a book when J was small, how it depicted a child's mother at the centre of a number of concentric circles. Each circle represented the distance a child of a particular age would stray from its mother, with each circle's radius growing as the child grew older. I remember we considered this a completely crazy idea at the time, since J would enjoy wandering and never once look back - secure in the knowledge that his Mum would never be far behind him!

Which is, in a convoluted way, my point. You need that security, that certainty for independence. And it is an interesting fact that children who are pushed away too fast often end up being more clingy or withdrawn, because they lack that secure foundation. Any child with additional issues to cope with, be they health or social, economic or political will probably (and I am no sociologist or psychologist) take longer to develop that natural and increasing independence from their parents as they grow up to be their own person and make their way in the world.

So yes, you could argue that the twins have had a lot to deal with and it is understandable that they might be a bit clingy. But there is something more. That metaphorical umbilical cord - it's all about feeding and sustenance. To be independent you need your basic needs met and you need them to be second nature, 100% reliable. Children on medically restricted diets all too often lack that basic security for several reasons.

With my two, I am the only person in their world who can safely feed them. Now aside from the fact that that is a huge burden for me - it's a MASSIVE restriction for them. Socially of course - at parties, school lunches, holidays, eating out - I have to provide their food at virtually all these occasions. But emotionally the knowledge that they could not feed themselves, that there is only ONE person who is fully familiar with their needs and medications, allergies and restrictions is one Hell of a restriction and a major impediment to independence.

You might challenge that and ask what is so odd about children relying on their mother for their food - but they are 7. And a half. (Very important that half when you are 7!) They cannot eat anything without thinking, checking and having it confirmed as safe. Throw in a generous dollop of fear that they might become unwell if the food giver gets it wrong, and you begin to realise their level of dependency.

They are the ones who hang back at cake sales, or open their "safe" cake from home. They are the children who have a biscuit from their teacher, which was sent from home when the school have a "French Cafe" to experience other cultures. They will be the ones unable to fully participate in the "Bushcraft" trips in Key Stage 2 because it is absolutely NOT the idea for me to tag along, and how would that promote the independence such an event is held for the purpose of encouraging?

Children on exclusion diets (or those tube fed) are held back in SO many ways, denied their natural right to independent life. Later on, they will learn to read packets and navigate their own way through the minefield that is food labelling. But for now, that's my job. I'm sure there is the inevitable dose of bad parenting, with not a little over-protection at the more daunting times which I won't apologise for. I'm human like the rest and we muddle through. But I can at last understand one of the reasons why they are perhaps in some ways overly dependent.



So, given that the penny has well and truly landed........ what now? What can I do to help tackle this? Firstly, I think I need to really focus on the one thing I have avoided - for good reason. I've tried to limit their knowledge and the time they see me spend thinking about food and ingredients, because they are children. We crave normality and my version of Healthy Eating is that food is fuel, and that we shouldn't dwell too much on unhealthy concerns about eating or try to demonise certain foods. (Healthy Eating Blog post here) But I think we are now moving into "Health Development" and "Healthy LIVING", where knowledge can indeed by power and might release the twins a little from their dependency. For them, "Healthy" is to feel secure that their fuel source is secure and safe, and that THEY are involved.

So this summer, whilst we will be enjoying a lot of time together, I will be working on loosening those ties a little and preparing the ground for passing on that baton of self care. With a good few cookery sessions thrown in too hopefully I can empower them and build some confidence to take those baby steps to greater independence. Power to the Little People.