Welcome to Elfie’s blog

I’m the Mama of three young kids and we live in London with my husband and two cats. I mainly blog about things that make children smile, get very excited, or find totally amazing … without taking up too much effort on your part!  I hope you enjoy …

The Sickly Child: A Review Of the York Test

I’ve been meaning to write about ‘The Sickly Child’ and our experience of the York Test for so long, but I just haven’t had the time to put it together as a proper scientific proposal to you. So, I’ve decided to just write it anyway and I hope it intrigues you enough to do you own research.

My background: Physiologist, Osteopath, Mum of a nearly 4 year-old boy with Down Syndrome

What do I mean about ‘the sickly child?’ Any of the following on a more than a one off or on an ongoing basis:

• Constant snotty nose
• Cough that won’t go away / recurrent chest infections
• Bronchiolitis / viral induced wheeze
• Croup
• Hospitalisation for respiratory infection
• Stopped or slowed growth
• Tummy pains
• Large tonsils / adenoids
• Really red cheeks
• Sticky eyes
• Red throat
• Not sleeping well
• Sleep Apnoea
• Fatigue
• Sluggishness / seems ‘flat’
• Reflux
• Glue ear /altered hearing
• Eczema
• Constipation
• Diarrhoea
• Behind on milestones / behavioural issues
• Anything that doesn’t seem right that the Doctors say ‘oh it’s because they’re a baby or child or human / have Down Syndrome / it’s winter…

My training as an Osteopath makes me ask the question ‘why?’ We always seek the cause and that’s what we treat. Just to clarify, we are very pro medicine and will always refer patients back and forth as needed.

This blog post has basically come about as a result of our boy with Down Syndrome. Thanks to him and then many discussions with Professors of Immunology, Immunology Consultants and nutritionists, I have learnt about the very real existence of (measurable) food intolerances.

If my child has a snotty nose for weeks, then I want to know why. ‘it’s because their sinuses are different.’ Well, sinuses in children with Down Syndrome are more horizontal and so that might affect the speed at which they drain but I want to know why there’s so much snot in the first place! ‘Well that’s because they have Down Syndrome.’  I couldn’t disagree more.

I can’t tell you how many times a doctor has said to me ‘oh yes your child has bronchiolitis / is on oxygen / has dreadful reflux / is so constipated that you need to use glycerol suppositories / sleeps for 5 hours in the day / has completely stopped growing / is moderately deaf / isn’t bothered with playing with toys / doesn’t sleep well / has tonsils that are almost touching / has a constant cold…..because he has Down Syndrome.’

I really wasn’t happy with this, it grated with every single ounce of my training and clinical experience. I had to know why.  What was making their little bodies react like this?  They were busy doing something but what and WHY?! Hence my research into what the cause might be of every single symptom that has afflicted any of my kids on a more than transient basis. What I do know, is that bodies are flexible and responsive and will do everything they can to heal themselves. If they perceive something as an enemy, they will react to try and get rid of it.  You get a stomach bug and you will vomit as your body tried to get rid of it, a respiratory virus and you will produce mucous, your lymphatic glands will enlarge, your eyes will water etc.  This is normal but what doesn’t appear to be normal is prolonged or a high frequency of symptoms or an overreaction – ie. croup or bronchiolitis.  I’ll come back to my last example a little later.

So, I had a sickly ‘not right’ 15 month old. He’d only just learnt to sit up by himself and who the hospital said they were expecting to see on and off in A&E for at least 4-5 years, particularly as he’d has a history of cardiac surgery. I wasn’t having this without a fight. So, off I marched to see a Nutritionist & Naturopath. That was the beginning of a rather exciting journey for the whole of our family, which then led on to lots of very interesting discussions with well respected academics and medics across London.

One email I received from a Professor of Respiratory Immunology in London stated:

“There have been many studies recently showing how the gut environment shapes immune responses – particularly in early life. This is mostly relating to the gut microbiota (the commensal bacteria that we live with all the time) however it seems that diet affects the balance of these bugs and that in turn affects how we respond to viruses and bacteria. Although most of the work is in mouse models and in looking at how gut microbiota affects gut immune health there is increasing evidence that pulmonary immune responses are also affected by the gut microbiota. All of this work is experimental but it seems to me that you can see a pattern after food. Although studies are looking at the balance of “good” (i.e. commensal) versus “bad” (i.e. Pathogenic) bacteria there is also evidence that our diet affects this balance – particularly the fact that high fat/low fibre diets are not good for promoting a good balance of healthy bacteria in the gut.”

So, what you eat and how your body responds to what you eat seems to matter. In an informal chat with this professor, I was told that it was entirely feasible that the immune system could ‘overreact to a common virus if it was already ‘spiked’ by foods one was eating.’

To give you the shortened version of events that occurred over a period of about a year, the whole of our family has food intolerances. These are not the same as allergies. Allergic reactions involve the IgE mediated immune response (to give you the science), things like coeliac disease involve the IgA part of the immune system but some food intolerance tests use the IgG immune response to determine whether or not your body is happy with something.

Anyway – as soon as I removed the foods from all the kid’s diets (mostly different for each of us! Argh!) that were supposedly triggering our immune systems into red alert…

The following. Just. Stopped…

  • No more snotty noses (we now get 1-2 tiny watery noses / winter lasting 12-24 hrs)
  • No more croup
  • No more bronchiolitis
  • No more hospitalisation
  • No more oxygen
  • No more sticky eyes
  • No more 5 day long fevers occurring every 3 weeks from Nov to Mar
  • No more constipation
  • No more fatigue
  • No more deafness (normal hearing 1 month after diet exclusion after 12 months of consistently testing as moderately deaf). That was 18 months ago.
  • No more enlarged tonsils
  • No more disturbed sleep
  • No more red dry cheeks
  • No more reflux
  • No more lethargy

Instead of ‘The Sickly Child’, we have a whole family of healthy, active, growing, curious, pleasantly energetic, ‘reasonably ill’, developing smalls (and bigs). Actually all of my symptoms went – I had breathlessness, nausea, bloating, debilitating fatigue, ongoing cold symptoms and I felt hormonal all the time. All gone.

Up to last winter (2013/4), our then 5 year old (the middle boy) was off sick about 6 times per winter with croup so badly he would need steroids (which we keep at home) and adrenaline.  Our youngest (the one the hospital were most concerned about and who was on the full exclusion diet at the time) would just get a tiny cold lasting a day or so.  This winter, all the kids have been ill but just for 24 hours, not miserably so and with no breathing problems at all.

The most common culprit for us has been cows milk – not lactose intolerance but casein, the protein and eggs. I suppose it makes sense really. We’re the only species that drinks milk after weaning, let alone the milk of another species. As far as I know anyway!

There’s also quite a lot of evidence to suggest that children with Down Syndrome benefit from being on a gluten free diet generally.  I think their bodies are generally more reactive and gluten is a difficult protein to digest.  There is also an increasingly strong association of children with Down Syndrome and coeliac disease, which can be detected with a simple blood test (+/- a bowel biopsy) and casein (the protein in cows milk) is very similar to gluten and can be seen by the body as the same thing.

We are now at the stage of trying to introduce foods that we’d excluded back into our diets. Some we will be successful with and others we may not.

Now – I’m not saying that this will be true for your child too but if you recognise any ongoing symptoms from the list at the beginning of this post even if they have Down Syndrome(!) and the doctors aren’t interested, then please please consider looking into it.

If you’re interested in reading any other of my ‘health’ blog posts, you can find them here:
Sensory Processing and our boy with Down Syndrome
Encouraging your Child with Down Syndrome to Crawl

I’d love to hear from you so please do leave any comments you may have below. About Us

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23 comments

  • nisha patel
    April 27, 2016 AT 11:59 AM

    This is a brilliant and really important post. You are a true scientist, exploring the symptoms and getting to the bottom of them, instead of accepting answers given to you. I try to do the same in my work, always encouraging my patients to figure out the cause of recurrent symptoms. This is the work I’m most passionate about. Unfortunately, It’s difficult to go through detailed history working as a pharmacist because of time constraints, but I aways tried to encourage patients to go off and do their own research and get to bottom of what could be causing the issue, whilst giving as much lifestyle advice as possible. I completely agree that medicine is really important but sometimes is over relied on. We must acknowledge and look more deeply into any symptoms that need our attention, especially if we’re not satisfied with the answers we’re given. Thanks for writing such a fab post.

    • International Elf Service
      April 27, 2016 AT 12:11 PM

      Thank you so much for your kind comments Nisha – it’s often so difficult to do but I do find that when you really delve into something, patterns start to emerge, which then give you clues of where to start looking and who to start talking to. The human body is an incredible machine and very complicated as you know!

  • 8 Things Parents of Kids with Allergies Wish You Knew
    October 19, 2015 AT 11:30 PM

    […] International Elf Service Emily is a registered Osteopath and mum of three children. Her youngest child has Down’s Syndrome, and various health and sensory issues. Her blog is a goldmine of useful and interesting information, including recipes for those with intolerances and allergies. I Say Nomato  Cristina’s husband has food intolerances to the ‘nightshades’, a family of New World plants such as potato and tomato.  She records their journey to create delicious food that they can both enjoy on her blog I Say Nomato (and don’t you just love the play on words there!) […]

  • Laura
    August 6, 2015 AT 2:35 PM

    Thanks! What sort of testing did you do? We have done regular allergy testing & came up with absolutely no allergies for my younger two girls which I find hard to believe.
    Thanks
    Laura
    http://downsyndromeupupupandaway.blogspot.ca/

    • International Elf Service
      August 6, 2015 AT 8:53 PM

      They wouldn’t do allergy testing for us as there was no anaphylaxis (thankfully), so I looked into IgG food intolerance testing and that’s what worked for us.

  • Dayna
    May 15, 2015 AT 3:21 PM

    I love this. While my son is not Down Syndrome we spent his third year of life in emergency rooms with him not breathing and covered in hives. it took ONE year, tears, research, RISK and determination to get the doctors to even AGREE to test him for allergies. It was only my mothers instinct that told me their ‘he has asthma’ responses were WRONG. Finally got an allergist and he explained it almost just as you said – that he had become almost toxic in his body from his food intolerances that small environmental triggers (in his case grass, cats and dogs) would trigger HUGE responses. Scary responses. Almost deathly responses. We have a list of 25+ items (food, spices and environmental) that his litlte body can not process. I hope that with diligence he will one day be able to introduce these foods again. SInce his diagnosis in Spetember last year we have only had one emergency room visit (versus 6 in his 3rd year). Thanks again for the post. You put into words what I try to do so often for people. 🙂

    • International Elf Service
      May 15, 2015 AT 8:19 PM

      Hi Dayna – that’s so interesting and a massive well done for persisting. You were absolutely right! Did you feed the info back to the GP so they could learn and know for another child? I’m also really interested to know who tested and how did they identify his list of intolerances? xxx

  • Mel
    May 12, 2015 AT 6:41 AM

    Sounds like you have been on a really similar journey to us! I notice you’ve also written posts on sensory issues too! I can see I’m going to be spending lots of time here!

    • International Elf Service
      May 12, 2015 AT 9:24 AM

      I thought that when I popped in to your lovely blog too 🙂

  • Kimberly Temple
    February 23, 2015 AT 10:23 AM

    Really interesting read! I have been feeling quite lethargic and seem to have caught every cold going this winter and my children have too. H has eczema and I have been to the doctor five times for different creams etc, I keep asking if it could be a food intolerance, but they won’t consider it. I will do a bit more research now though! Thanks for the great post and all of the info #brilliantblogposts

    • International Elf Service
      February 23, 2015 AT 12:58 PM

      Thank you so much for commenting and I can’t stress enough how much I think it’s worth looking in to. Let me know if I can help at all with any questions… Emily x

  • Rachel Manley
    February 19, 2015 AT 8:32 AM

    I have to say I’m instinctively sceptical when people start talking about removing things like dairy and wheat from their diet, but your blog post is so well written that it does seem to make sense. Also, I think that once you’re on a restricted diet, you’re forced to cook from scratch and really think carefully about how to have a balanced diet, which can only help too. #brillblogposts

    • International Elf Service
      February 19, 2015 AT 11:57 AM

      Hi Rachel, yes I completely agree with you about cooking from fresh and also there’s absolutely no point removing food groups for the sake of it. It may just be one food causing the problem, or more, so it’s important to have a targetted approach to get proper results. Thank you so much for popping in and commenting 🙂

  • The Reading Residence
    February 19, 2015 AT 8:26 AM

    This is really interesting. I think I’m going to start keeping a food diary, as I wouldn’t know where to begin otherwise.

    • International Elf Service
      February 19, 2015 AT 11:58 AM

      Hello – thank you so much for popping by. I found that a food diary helped a bit but it wasn’t until we did the blood tests and picked up things that I wouldn’t have guessed (e.g. garlic, chicken, cranberries), that we got the full results. Do let me know if I can help in any way with any questions. Emily x

  • John Adams
    February 19, 2015 AT 5:39 AM

    Wow, well done you for experimenting with food in such a way. What an amazing result. I would never have assumed food could have such an effect on the immune system. #BrilliantBlogPosts

    • International Elf Service
      February 19, 2015 AT 12:02 PM

      Hi John, Thank you for commenting and no it’s not the most obvious thing is it? As parents we just assume they have lots of colds / reflux and that’s ‘just normal’. Our kids had enough going on to make me curious (both my nature and my training), which is why I ended up looking into it all. So fascinating and obvious once you have more information…

  • Emma
    February 2, 2015 AT 7:59 PM

    What an interesting article. Our son has lots of ige allergies but is also ‘sickly’. I have been sure other foods are bothering him but haven’t been able to find any clear patterns even with diaries. I’ve never tried cutting out gluten as I am wary of restricting his diet any further.

    • International Elf Service
      February 2, 2015 AT 10:05 PM

      Hi Emma, I totally understand what you’re saying and gluten may or may not be the issue with him. Has he ever been tested for coeliac disease? It would be good to get that ruled out before progressing further and doing any further food intolerance tests if that’s what you might be considering.

  • HonestMum
    February 2, 2015 AT 11:43 AM

    Fascinating post and amazing you’re an osteopath. We stopped cow’s dairy (have a little goats) and gluten and all our health has improved 10 fold, Oliver suffers from glue ear, Xander from tonsillitis and both have improved hugely. I read Wheat, Belly, Eat Pretty and various other books and they’ve honestly changed our lives. The boys eat good quality eat but my husband and I only eat fish. Thanks so much for sharing this post x

    • International Elf Service
      February 2, 2015 AT 1:44 PM

      Hi Vicki, That’s so interesting and I’m not in the least bit surprised! Part of the food intolerance testing we did was the York Test, which I now offer through my practice but you can get it on-line. It detected odd things that I wouldn’t have discovered naturally because of the way I cook – garlic, chicken, lentils, brazils, cranberries and salmon! Removing those from the diet(s) seemed to be the last piece of the puzzle for the little one. Obviously different foods for different people. I think some people are just much more sensitive than others. I find it all terribly fascinating. Thank you so much for your comments x

  • cherie
    February 2, 2015 AT 12:24 AM

    Brilliant blog totally agree with you on food being the culprit. Have you ever tried NAET therapy.

    • International Elf Service
      February 2, 2015 AT 1:38 PM

      Hi Cherie, thank you so much for taking the time to comment and no I haven’t! Do you have experience of this?

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