rolling with the bad and the good

Our son recently had a blood test to see where his allergies were at, the good news was that lentils have made a significant decrease, but the elusive and more valued dairy, egg and nuts have continued to be stubborn and have gotten, slightly worse.  To say I was disappointed was an understatement.

I remember asking our specialist if there was any chance we could get beyond this, that my son’s immune system could somehow press ‘factory reset’ and settle down, and she told me about a 2-year-old boy who was severely allergic to dairy at 6 months, they retested him at 2 years of age and there was no evidence of allergies to dairy.  The mother and her were a bit shocked and surprised so they did a food challenge ‘on the ward’ (for high risk challenges) at the local children’s hospital and he passed with flying colours.  Of course I had to ask what did the Mum do – did she take her child to a faith healer, did she say it was because of divine intervention, she tried a new supplement, a chiropractor anything, anyone?  But the answer was ‘no’…you know I would give any lead a try as long it was safe and not harmful in any way.  I went home a little more crushed.

The next day my close friend sent me an article from the New York Post which I am sure if you have allergies, you have read or heard about.  It’s about the story of the power of a Specialist, an individual with conviction (and know how) and a group of committed families, local action that funded this ground breaking research.  The research was risky, and my opinion scary, but we have now a new strategy for tackling severe multiple food allergies.  I don’t say this lightly but these people all of them are my heroes, because I know the risk they took to be apart of this research.  I can’t wait until it goes through Peer Review, published and the treatment more widely available.  You can read about it here.

Just today I was heartened to find out, that here in one of the most isolated parts of the planet, Perth – Western Australia, a Nobel Prize Winner, Professor Barry Marshall is looking at the role of a tiny bug called helicobacter pylori, the same bug he used in his ground breaking research into ulcers, to treat asthma, allergies and eczema, you can read about it here.

I wish we had a cure right now that wasn’t risky that was like taking an oral dose regularly, a desensitisation program, I would even consider taking a bug that is found commonly in the gut.  Bring on a cure!

In the interim, I praying for a miracle and as my Mum says ‘storming the heavens’, if you have any spare prayers I would appreciate them for all allergy sufferers.

This is about the most emotional I will get, and I promise to return to normal services very soon….just a picking myself up, dusting my self ‘off’ and ready to start all over again; as Dory in ‘Nemo’ says “just keep swimming”.

10 Comments on “rolling with the bad and the good”

  1. Kris
    May 9, 2013 at 10:00 pm #

    Having my 7.5 month old diagnosed with a severe allergy to egg yesterday it is good to know that this isn’t the end of the world (but with all of the unknowns it feels a bit like it at the moment). Thank you for this blog, I will definitely be a regular follower.
    From a fellow Perthite. x

    • intrepidallergymum
      May 22, 2013 at 10:53 am #

      Hi Kris and welcome – sorry about your news, it always comes as a shock, and I still have moments where I want to hide under my doona (to collect some courage and the right attitude).

      There is a great life without egg, we don’t have it at home – my favourite egg subsitutes are banana or pureed cooked apple and some xanthum gum.

      You have a big birthday coming – so please have a look at the birthday cake recipe on the blog (just use the search function top left hand side) – I can make most everything without egg, well maybe not meringue or pavlova : )

      Glad to hear you are a local – and please feel free to drop me a note or message me via the blog’s facebook page.

      best wishes

      Charmaine x

  2. Kris
    May 22, 2013 at 7:56 pm #

    Thanks Charmaine. Looks like we can add peanut to that list (prick test done at PMH). I had no doona to hide under but I will admit to a few tears in the immunologist’s office. I’m hoping that it stops there but with so many foods yet to try ….. I can’t help but feel that I’ve done something wrong.

    I would love to make my Mr Moo a cake for his first birthday so will definitely be looking at your recipes – thank you so much!

    Hope you and our little Bobby are well.

    Kxxx

    • intrepidallergymum
      May 22, 2013 at 8:45 pm #

      Hi Kris
      Yes Bobby and I are well, we have been doing the allergy journey for around 51/2 years now. So there have been a few (perhaps many) tears along the away (typically mine done discretely – Bobby seems to be very well adjusted to his allergies – must be doing something right!).

      I know you haven’t done anything wrong, its just the way it is – it is taken me a long time to accept this. I wrote a blog post here

      (http://intrepidallergymum.com/2012/02/05/my-top-5-things-i-would-have-liked-to-have-known-when-my-son-was-diagnosed-with-allergies/)-

      which you might find amusing and hopefully helpful – because you have to maintain a sense of humour, whilst wielding new recipes, advocating for your child, reading all the ingredients on thousands of packets of pre packaged goods in the supermarket, making sure you have your medical kit on you at all times and importantly cooking up a storm – because a boy has got to eat!!

      I know of another Mum who is linked to the facebook page that found an excellent day care centre for her 6 month old (egg and dairy allergies) here in Perth – she is north of the river – so if you would like to find out more – just give me a shout.

      Finally meditationoasis.com is a great website – where you can listen to some great podcasts and if nothing else it reminds you to breathe.

      I am here for you and so are the very lovely vegans – they have great recipes – just google any recipe with vegan in front like – vegan pastry for example (I do have a recipe for this too – on the blog).

      Hang in there and just start googling some recipe books my favourite is” Baby Cakes New York”.

      xx

      • Kris
        May 24, 2013 at 9:46 pm #

        Thanks so much Charmaine. I’ve just sent you an email via your FB page.

  3. Ruth Tinley
    August 2, 2013 at 2:07 pm #

    I had my 9 month old diagnosed with severe allergy (anaphylaxis) to egg after he experienced a full body reaction (hives all over body, facial swelling and wheezing) after eating his first boiled egg.

    When we went back to the allergy specialist at 2 years old and had all the tests done, he didn’t react to egg at all. We went to hospital for the egg challenge and he ended up eating egg with no reaction!! Amazing.

    I don’t know why it happened… we didn’t do anything except avoid all eggs during that period, but she (the allergy specialist) said that it’s not really possible to go from such a severe reaction to being completely allergy free in such a small space of time, so maybe he was never allergic to egg in the first place?

    • intrepidallergymum
      August 6, 2013 at 10:31 am #

      Hi Ruth
      Wow – what an amazing story. It is my dream scenario – overcoming such a severe allergy so quickly.

      I have heard this happening before – so maybe he was allergic to egg, and just his immune system matured up.

      Thank you for sharing your story, it gives us all some hope.

      Best wishes

      Charmaine

  4. Jodhi
    August 6, 2013 at 8:16 pm #

    Thank you for sharing your experiences so honestly. My beautiful girl is about to turn two and we will be celebrating egg and peanut free to keep her safe. Living with allergies was not one of the challenges I anticipated as a mum, the road is often lonely and frightening. Only another allergy mum can know the fears, tears and simple joy in finding delicious safe recipes that everyone can enjoy. Jodhi

    • intrepidallergymum
      August 7, 2013 at 6:04 pm #

      Hi Jodhi
      Thanks for stopping by and your kind words and comments. It is such a shock to receive the news your child has allergies – our son is the only one with such severe allergies in a rather large extended family. So education began with us and moved out to all members of the family and our friends…there were some interesting moments but I have to say that they have all been on board and so supportive.

      I am glad you said you were celebrating egg and peanut free – you don’t need certain foods to have a memorable and fun time. There are so many great things out there that you can buy and mostly make. I always smile to myself when my friends say “I can’t believe this doesn’t have dairy or egg in it”.

      I don’t know about you but I don’t have nuts or eggs in the house and I don’t miss them. I rarely use egg replacer I get by with apple sauce, banana and xanthum gum – quite nicely.

      It has been a rocky journey but my boy is more resilient then most and he is optimistic too – so whilst it has been tough there has been some upside.
      I have taken a break from the blog but will be coming back shortly with some recipes so hope you can stop by.

      Best wishes

      Charmaine

  5. Grace
    August 13, 2013 at 9:19 pm #

    Hi there, I saw that you have not baked an egg free meringue… I thought this would be impossible too, but here’s a link to a recipe. I’ve gone out and bought the Orgran egg replacer, so once the kiddies have recovered from our winter blues, it’ll be on my agenda! I can’t wait to have a taste too, since i’m on a wretched egg free diet too. Happy reading! http://veganfeastkitchen.blogspot.com.au/2009/06/vegan-lemon-meringue-pie.html

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