Salicylate Challenge - take 2

Oshawott (obviously not his real name for those of you that are new to iSophie) is intolerent to Salicylates.  You can read my first post about it here.

Now that you are all caught up...

In December I took Oshawott to see a Dietician, the appointment had been arranged by the Outpatient Paediatrician at the hospital.  This whole Salicylate saga has been ongoing for over a year, but had come to the forefront in August when he was hopitalised with Scarlet Fever.   We had an issue with a medication reaction, and the follow up appointments, including the skin prick test did nothing to help me figure out anything further in regard to his apparent Salicylate intolerance and constant itchy skin.

The Dietician was the next step in the process.  Unlike the Dr himself, the Dietician didn't treat me like a crazy person when I mentioned all of the trouble we have had with Salicylates.

 Playing in the waiting room.  "When balloons attack!"

We had a lovely long (and sane) chat, and I felt a glimmer of hope that finally we might actually get some support.  We left with a tube of toothpaste (completely 'safe') and a plan of action.

That plan was systematically go through the "Food Challenges" one at a time to see what reactions occur.

We started straight away.  A week on the fail safe diet, and then 7 days of eating Salicylates.  Well, that -was- the plan.  But after the first day, Oshawott woke up with a stomach ache and aching joints and was unable to go to Preschool.  I rang the Dietician and she told me to stop the Salicylate challenge, mentioning that he must be quite sensitive.   

He was feeling really unwell so Coder took him to the local GP to make sure.  She thought it was possibly Gastro (yet he did not vomit), as there had been quite a few cases showing up lately.   He told her about the challenge and she said to wait until he was all better and try it again, and that way we would know for sure.

I didn't do that straight away, it was Christmas time, I didn't want to take the chance he would feel like that.

Today, I started him on the Salicylate Challenge again.  He had unpreserved apple juice and honey, making up the required serving amount.  Tonight he suddenly had a sore throat and tummy.  He had a later bedtime so we could monitor him, and once in bed he was very sweaty (but no fever).  I have been checking on him every so often, and I will sleep next to him tonight.  (I will update this tomorrow with how he is going).

I will see how he is in the morning before I officially check that box.  And then he will go back onto the fail safe diet before we attempt the Amines Challenge next week.  


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Salicylates: DNA Hair sample results

Image: FreeDigitalPhotos.net

Enough of the happy Birthday talk, it time to bore you with some more food intolerance information.  If you want to be caught up to speed on what Salicylates are, you can read my original post, where I try to explain what  Salicylates are and how they affect us (Oshawott mainly).

A few weeks ago I relented and signed up to Twitter (you can follow me at @isophiehobart).  I was searching for things, trying to figure out just how it all ticks when I stumbled across an Australian Allergy group.  I 'tweeted' to them about Oshawott's sensitivity and received a response asking if I had gotten a DNA hair sample test done.  

After I picked up my jaw from the floor I quickly googled it.. and low and behold there really was such a thing! I was so excited that even the $150 price tag didn't make me blink an eye.  Wouldn't it be so fantastic to finally have the answers, in black and white, instead of constantly guessing.

After the payment was processed and the instructions arrived via email I couldn't get my hands on the scissors fast enough.  Slightly freaked out at first at Mummy's extreme eagerness as she approached him with the scissors, Oshawott soon understood it was for the greater good.

As part of their service you can also get up to 5 additional items tested, and while I was trying to figure out what extra items to send (vegemite being already bagged up) I had an epiphany.  Pichu had been getting recurring rashes on his cheeks (both sets!), and I had already suspected it could be dairy, but why not get him tested too!  I am brilliant let me tell you.

Unfortunately Pichu is slightly (extremely) more wary of Mummy waving scissors around his precious golden locks.  Obtaining a hair sample, as closely cut to the scalp as possible, on a resisting almost 2 year old is absolutely not fun and I do not recommend it.

All fun and games aside, the samples were then mailed to the UK where the testing takes place.

After several weeks the results were emailed and the list was extensive, for both boys.

Oshawott had a few surprising results, like dairy was no longer an intolerance!  Whoa!  

But. Pichu IS intolerant to dairy.  Of course. 

Oshawott can have honey and bananas!  (when we guessed before that he couldn't)  His squeals of delight the morning I told him he could have bananas were pure gold, even loud enough to wake Coder up from his weekend sleep in.
Pichu can NOT have honey.

Oshawott should avoid rice flour (I had relied on him being able to have rice crackers as most of the other snack biscuits are laced with artificial flavourings and preservatives which are high in Salicylates).  Opps.  Rice flour is also the main ingredient in gluten free products.  He should avoid rye bread, oat flour, peas and egg white protein (just to name a few).

Pichu is intolerant to Casein, which is the main protein in dairy and gluten products.  He is also intolerant to beef, potatoes, wheat bread and eggs.

Those are just a few of the major ones that could cause -me- pain in figuring out a balanced diet for them both.  

Eggs!  C'mon!  I relied on omelets and scrambled eggs fairly often, thinking it was a safe option for Oshawott.  
  


Oshawott's results

Food items that showed an intolerance.

• Almond
• Apple
• Basil
• Bread - Rye
• Cayenne
• Cherry
• Cod
• Eel
• Fennel Fresh
• Gum Arabic Additive E414. Used in printing, paint production, glue, viscosity control in inks.  It is main ingredient in soft drinks, "hard" gummy candies such as gumdrops, marshmallows and M & M's.
• Mixed Fish (F3,Rf205,Rf206,Rf254)
• Cod, Herring, Mackerel, Plaice
• Mutton
• Nettle
• Oat flour
• Orange
• Oregano
• Ovalbumin. Egg white protein
• Parsley
• Pea
• Rice Flour.  Some dishes like rice noodles are made with rice flour, it is used as a thickening agent for some desserts.  It is also the main flour used to make gluten free items.
• Scallop
• Snail
• Sunflower Seed
• Turmeric

Non Food items

• Birch Pollen
• Candida Albicans. This indicates a yeast imbalance in the body.
• Common Silver Birch
• English Plantain
• Goat Epithelium. Epithelium is skin or cells
• Marguerite
• Meadow Fescue. A grass found in the UK
• Micropolyspora Faeni. A spore found in mouldy crops
• Mixed Grass Pollens (g1,5,6,12,13). Sweet vernal, Rye grass, Timothy, Cultivated rye, Velvet grass.
• Mixed Rodents (e6,82,84,87,88). Guinea pig, Rabbit, Hamster, Rat, Mouse
• Mixed Tree Pollens (t9,12,16,18,19,21).Olive, Willow, White pine, Gum tree, 
• Acacia, Melaleuca, Cajeput tree
• Paper Wasps. Nest around dead wood
• Pityrosporum Orbiculare. Is a yeast fungus that causes skin problems, can cause cradle cap.
• Protamine. Used in medications – please check ingredients before taking any medication.
• Rabbit Urine Proteins. From contact with the animal
• Rhizopus Nigricans. Mould that grows on bread
• Sheep Epithelium. Epithelium is skin or cells
• Sweet Vernal Grass
• Thermoactinomyces Vulgaris. A fungus that can cause lung and breathing problems.
• Trimellitic Anhydride. A highly reactive chemical used commonly in the production of paints and plastics. It is also used in the production of dyes, insecticides and polyester resin.
• Turkey Feathers
• White Pine

Pichu's results

Food items that showed an intolerance

• Beef
• Bread - Wheat
• Casein Biggest protein in cow's milk and cheese, similar to gluten
• Cayenne
• Egg Yolk and White
• Grapefruit
• Hake
• Hazel Nut
• Honey
• Lettuce - Frisee
• Mandarin Tangerine, Clementine, Satsuma
• Octopus
• Paprika
• Potato
• Rose Hip Tea
• Sheep's Milk
• Tapioca

Non food items

• Aureobasidium Pullulans. A fungus usually found on plants but can be found in air conditioning, dehumidifiers etc. causes’ chest problems
• Bermuda Grass
• Bumblebee
• Common Reed A tall grass found in reed beds
• Ethylene Oxide. Ethylene oxide is a chemical used mainly in detergents, plasticizers, fumigants, inks, cosmetics and brake fluid. Ingestion and other exposures to the chemical can cause various symptoms. It is a very common product in the UK.
• False Ragweed A herb, the plant (mainly found in Canada) is a known cause of dermatitis
• Green Nimitti fly. Known as midges in the UK
• House Dust. A common cause of allergies. Mites, moulds, epithelium, insects, textiles.
• Maleic Anhydride. Used in animal feeds
• Mealworm
• Methyltetrahydrophthalic Anhydride. Is used in the production and reconditioning of electrical items.
• Mixed Grass Pollens (g1,5,6,12,13). Sweet vernal, Rye grass, Timothy, Cultivated rye, Velvet grass
• Mixed Tree Pollens (t2,3,4,7,12). Grey alder, Common silver birch, Hazel, Oak, Willow.
• Mixed Weed Pollens (w1,6,9,10,11). Common ragweed, Mugwort, Plantain, Ribwort, Goosefoot, Lamb’s quarter, Saltwort
• Mixed Weed Pollens (w6,9,10,12,20). Mugwort, Plantain, Ribwort, Goosefoot, Lamb’s quarter, Golden Rod, Nettle
• Moth
• Mouse Epithelium. Epithelium is skin or cells
• Ovalbumin. Egg white protein
• Rabbit Epithelium. Epithelium is skin or cells
• Silk
• Storage Mite. Linked to house dust mite normally found in more agricultural surroundings
• Trichophyton. A fungus found in athletes foot etc.
• Virginia Live Oak. A tree

Thankfully these are not allergies, just intolerance's.  And the level of intolerance would vary for each item.  Basically we eliminate all of them from their respective diets and add small amounts one at a time, to see just how much can be tolerated.

A very big question mark for Oshawott is still the preservative, flavouring and additive issue, as these aren't tested for specifically.  I am waiting to hear back from the website's dietitian to get a better understanding of where we go next.

Although we still have questions, the results certainly guide me in reintroducing many fruits and vegetables that we previously avoided.

And what am I going to do about this intolerance to egg business?  Can you make omelettes without eggs?  


UPDATE: November 2012
Actually, now I am unsure of it's accuracy.  I have spoken to 2 Paediatrician's since and they have said that unless they have taken the DNA from the hair follicle (and in my boys case particularly it wasn't, I followed their instructions and cut as close to the scalp as I could.  One Dr had his 'team' research it and didn't find any value in it as a diagnostic procedure. 

So I am really unsure.  We don't avoid all of these things, but I guess I have it as a reference.

I still keep the 4 year old on a low Salicylate diet, but don't cut it out altogether.  As he may grow out of it, and the levels of things that he can tolerate vary from someone else that is intolerant.   As long as his symptoms are mostly harmless the Drs told me it was good to keep exposing him to it.  




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Let's talk about Salicylates. Excuse me, what?

Most people don't even know what salicylates are, let alone be able to pronounce it. 

Sall as in sally - i as in ink - sill as in silly – ates as in dates.

They do not know what a big deal it can be if you are intolerant to them. Which Oshawott is, along with amines and dairy. This was not something easily diagnosed. In fact, it hasn't been officially diagnosed. I actually don't think there is a test for it, its mostly related to diet, but can be in many products also, like Asprin.

Salicylates are chemicals that occur naturally in many plants, including many fruits vegetables, and herbs. Salicylates in plants act as a natural immune hormone and preservative, protecting the plants against diseases, insects, fungi, and harmful bacteria. Salicylates are also created synthetically and can be found in many medicines, perfumes and preservatives.

People with salicylate intolerance are unable to handle more than a certain amount of salicylates at a time. The tolerated amount and items vary slightly from person to person. Salicylates also have a cumulative effect in the body and build up over time, this means that a salicylate sensitive person may be able to tolerate a small amount of salicylates but will experience symptoms after excessive exposure.

It's been a long process, looking back I can see it all started when he began eating solid foods. His first food was avocado, he vomited that back up, accompanied by some lovely big red hives on his mouth. Back then, I just assumed he was allergic and avoided it.

Not long after he started eating more solids, he developed a rash on his cheeks, sometimes it was red raw and would bleed. Because this was also on his legs, I (and doctors) assumed it was eczema. We had a few creams we cycled through, and along with changing the bathing conditions, we managed to keep it under control.

Low/Medium intensity breakout.

It was when he was in hospital with pneumonia (the first time) that I started to unravel the real problem. Because he was sedated, and obviously not eating anything (his milk was syringed into his stomach through a tube), his rash was clearing up. There was no cracking, and no bleeding. His bumpy little face was starting to clear up. At this time I thought it was just banana, or more specially, latex, so it included avocado, kiwi fruit and others.

None of my boys are good eaters, they eat, but not massive quantities. Legoman is a very healthy eater, Voltorb wont eat most vegetables, Oshawott would eat so much more variety, if he could. So because of Voltorb I blend up all veggies before adding them to dinners, so the best things for that are Bolognese, lasagna, quiche, meatloaf, meatballs and risotto. I have also gone as far as to make a carrot and mushroom puree for a pizza base sauce, and our pancakes always have sweet potato in them.

But back on topic. When Oshawott started to have cows milk at 12 months old, he started having restless nights, alot of wind and very messy nappies.  So I trialed a non-dairy option, soy.  Worked wonders!  

I figured that was the end of it.  Easy enough, we avoid dairy and foods that have latex.  This was a bit of a pain because he did (still does) love bananas.

But we managed.  

Then Pichu came along, and was extremely reluctant to eat solids.  He just didn't want to even put toys in his mouth, no way would he put food in it! I became paranoid and arranged for them both to have allergy testing, once and for all I wanted some answers.

Allergy testing wasn't easy on an almost 3 year old and a 10 month old.

The tests showed that neither of the boys was allergic to anything (that they tested for anyway).  The doctor talked about intolerance's and suggested a book, compiled by the Royal Prince Alfred Hospital in Sydney.  Conveniently, he had them for sale... 


Turned out to be a very good purchase.  It was using that book that I first discovered Salicylates and Amines.  I had no idea, I also didn't clue in straight away that this was part of the problem.  It was a light bulb moment, an actual light bulb appeared above my head, I'm certain of it. 


It was around the time of the two little boy's Birthdays, actually around this time last year.  My parents were visiting for our August/Sept Birthday season. One night we discovered Oshawott liked pumpkin, he ate a whole bowl of it.    A little while after the pumpkin, his mouth became covered in hives.  Alarmed, I had a quick search of the 'book' and sure enough pumpkin was the culprit!  Salicylates build up in your body if you aren't able to process them normally, over time, the "bucket" fills up with salicylates and starts to overflow and along come the symptoms.  If you don't cut Salicylates out of your diet to let the "bucket" empty the symptoms just get worse.  


So then a few days later we had a BBQ for Pichu's birthday.  Oshawott had a sausage covered in tomato sauce, and half a cucumber.  More reactions, and even on the parts of his face where he had so carefully (not) eaten his sausage.  I referred to the book again.  Processed meats, tomatoes and cucumbers are a no no!  Opps.  I felt terrible.  

So Oshawott can't have most vegetables, including tomato, and some of the ones he can eat have to be double peeled. He can't have most fruits, actually.. he can only have pears, or the delicious variety of apples double peeled. Preservatives are out, as are any artificial flavouring like MSG (or 'flavour enhancer' as they like to disguise it on packets).  


The things that he can't have are so many, it's just too many to list here.  A few of the most annoying ones are gravy, sauce, most stocks, yeast extracts, honey, jams, alot of herbs/spices, vegemite!  And then of course the artificial flavours and colouring. But if you want more information, this site is great.  


It's not just the Salicylates though, that would be much easier, he would be able to have banana's for example.  They have no Salicylates at all, but they have Amines.  So even if a food is low in Salicylates, I have to then check the list for the Amine levels. 


And of course there is the dairy aspect.  He has a soy/rice milk mix as a substitute for cows milk, soy yoghurt, soy ice cream.  We are able to manage his dairy intolerance by just changing those things, allowing him to still have butter, cheese and sometimes cream.


The symptom list is also extensive, but luckily for us, so far, he only suffers from a handful of them, depending how much Salicylates sneak through into his diet.


Here are some of the more common symptoms.  The green ones are the symptoms Oshawott suffers from.  It's not constant, only appearing if i've let something unknowingly slip through, or sometimes letting him have things like his brothers, that he loves and is hard to see him always missing out. He also doesn't get them all at once, often one or two at a time.

Physical Symptoms:

• Itchy skin, hives or rashes 
• Stomach pain/upset stomach 
• Asthma 
• Headaches 
• Swelling of hands and feet 
• Breathing difficulties 
• Bed Wetting 
• Mouth Ulcers or raw hot red rash around mouth 
• Persistent cough 
• Frequent need to urinate/urgency to pass water 
• Wheezing 
• Changes in skin color/skin discoloration 
• Swelling of eyelids, face and lips 
• Fatigue 
• Sore, itchy, puffy or burning eyes 
• Watering eyes
• Anaphylaxis (this is very rare, but deadly)
• Sinusitis
• Diarrhea
• Nausea
• Chronic sweating or no sweating
• Aching Muscles and joints
• Congestion
• Nasal polyps

One example of a reaction was during our holiday to Coolum over Christmas. We were going to Sea World!  It was a very exciting day for everyone, actually no, it was very exciting for the children.  Well, 6 out of 8 of them.  Pichu couldn't care less where he goes as long as Mummy is with him, and Oshawott was having a bad reaction to something he ate.  I think it was a sausage the night before, if it had sauce on it (which I couldn't remember) it would have definitely been the culprit.  It was probably a few other factors, possibly icy poles (he can't have citrus or food colouring), or if he slipped a few cheesy goodness chips from his brother. 


We had just arrived, after getting stuck in Surfer's Paradise traffic for an hour, it was 11am.  The kids were pumped.  What to do first!?  But not Oshawott, he complained of being tired and needed to get into the pram.  He was very lethargic, his eyes were red, swollen and he basically couldn't keep them open.  So within 10 minutes of arriving, he was asleep in the pram.  He ended up spending most of the day in there and didn't go on a single ride, and saw only a handful of animals.


But thanks to torrential rain starting an hour after we arrived and not letting up all day, no one else had much fun either. 


I can mostly keep it under control now, at worst he will get red lips, swollen eyes, go off his food and sometimes get achy joints that disturb his sleep.  But luckily, discovering this when he was 3 is going to make such a big difference to his life, and not having to go through so much more pain before getting any answers.


He is going to learn to manage it himself as he gets older.  He already does ask me if he can eat things if he is unsure.  He also knows he can always have a taste of something the boys have by giving me his puppy dog eyes and saying "Just one Mummy, just one?".


Today I took this picture of his mouth.  This was all because I put a little bit of bolognese sauce on his gnocchi last night.  We had friends over for dinner and I just wanted him to feel like he could have the same as everyone else.  Next time I will know better, and I should have known better.  But on another day a little bit of bolognese might be ok, it all just depends on that "bucket" of salicylates in his body.  

Part 2: DNA hair testing for intolerances.