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My Top 5 ; things I would have liked to have known when my son was diagnosed with Allergies

I love getting feedback on the blog, and a little while ago, Alicia asked some questions that I thought I’d cover in more detail in this post.  Alicia wanted to know “what were the top 5 things I would have liked to have known/asked when my son was diagnosed with allergies.”    A good question, but tough to answer!

Tiffany’s cartoon  above, really highlights one of the key things I wanted to know – why did my son develop allergies?  Many people asked me the same question, was it: something I might have done /or didn’t do  – whilst I was pregnant, was my house too clean, should I have kept a pet, was my diet poor (!).  I wish I could answer this question, I hope and pray that medical researchers find the answer soon, like tomorrow!

But in the interim, I am going to try to identify the top 5 things that would have helped/ or has helped me stay calm and sane, when we first got the diagnosis:

1.  Find a good counsellor – I am proud to say – that I got some help!

After 18 months of living with life threatening allergies and asthma, trips via ambulance, hospitalisation and a short stay in ICU for my son, I was feeling like a nervous wreck!  A friend of mine gently encouraged me to see her counsellor; the best thing I ever did!  In this supportive and objective space I was able to discuss all my issues in relation to illness, fear and anxiety.   Not only did I start to feel more in control, I also learned something valuable; the concept of ‘itchy’ and how to keep my son safe.  Just a note on this if you need to talk or download some stress, there is always Lifeline – open 24/7 based in Australia. If you are overseas I am sure there must be a free support service via phone or internet, find it – it is always good to have a safety valve, keep the number handy in case you need to download.

2.  “Itchy” a great term to get your child aware of allergies

How do you explain to your child that they have allergies in a way they understand, my counsellor suggested using the word “itchy”; children understand words that they can relate to, they can feel, allergy doesn’t mean much to an 18 month old.  So at a very early age I would explain to my son about “itchy” food.  To this day he still describes foods he can’t have as being “itchy for him”.  So far he has never tried to put any ‘itchy’ food in his mouth or food I haven’t prepared for him.

3. When you are in the ER or Accident and Emergency Room in the Hospital you are a critical part of the care team; speak up!

Having made many visits to the Children’s Hospital Emergency Room, my husband and I realised that we had to advocate for our child; that we are part of the care team and that our concerns needed to be taken into consideration.  I am not saying that we have sub-standard medical care here, on the contrary we are fortunate to have a world-class, leading children’s hospital – virtually on our door step!  We have excellent medical support, but no one knows our child like we do, when the Emergency Room is rushed and staff are under pressure, you need to assert any concerns you may have about the treatment or discharge plan for your child; ask questions, advocate for your child, you are also part of the care team, not just the Doctors & Nurses.

4.  Regular exposure to foods.

My child had food allergies at a young age, however he was able to eat fish – often a high allergy, food protein.  What I didn’t know was that stopping fish for a period of about 4 weeks and then re-introducing it, can create a future allergic response..  There was no real reason I stopped giving him fish when he was about 12 months of age, but when I re-introduced it he developed hives all around his face and started throwing up; very scary, we gave him anti-histamine straight away, washed him down and ended up in an ambulance and in hospital (he was discharged a few hours later).   I do beat myself up about this, but I didn’t know that you need to give these type of foods regularly, about once per week.  You make mistakes, you learn and (for peace of mind)  you have to move on; another one of my (many) mantras.  So now he has an allergy to a certain type of fish it’s called Snapper.  A skin prick test and food challenge last year demonstrated he could safely consume Salmon, Whiting and Tuna, and he now gets that every second, or third day, on a regular basis.

5.  Find a good Medical Team to support you

I guess I am very lucky that we have a wonderful family Doctor, Doctor Deb, I have been seeing her for years, she has been a great support on this journey.  In fact my husband and I joke that we must have funded several of her  Christmas holidays, given the many visits we made to her practice during the first four years of our son’s life.

Through Dr Deb we were referred to a Pediatric Allergist, Dr A.  Dr A is a wonderful specialist, not only does she get the stress of being a parent of an allergic child, she is not pushy with the treatment plan (for food challenges); my son was scheduled for an almond food challenge at the start of this year, but I postponed it because I was feeling a bit stressed about him starting school, she understood.  Dr A is contactable by email, so that means if you have any queries out of your review appointments you can get in touch with her directly; a specialist that has embraced technology and understands the stress of being a parent of an allergic child – double gold!

So I have got some scars from this journey, it has been tough.  But coming into 2012, I know a lot more than I did before. I am learning to release my anxiety, stress and the unrealistic expectations that I should be a Doctor, Allergist, Nurse, Dietitian/Nutritionist and a Chef, (NOT!),  My focus now is just being a centered and grounded person which will hopefully translate into a being a good (less paranoid and over protective) Mum to my son.

Thank you Alicia for asking the question, writing this has been cathartic and I hope it helps you and anyone else facing the same issues.

Would love to hear your comments, what are your top 5?  What activities help you download your stress?

8 comments on “My Top 5 ; things I would have liked to have known when my son was diagnosed with Allergies

  1. Alicia
    February 5, 2012 at 12:47 pm #

    Thanks Charmaine, this is solid, easy to digest tips (no food pun intended!).

    I’m also going to print it off for a relative and a work friend, both of whom have young children with allergies.

    I especially like that you empower parents – they’re absolutely a pivotal part of the care team, and following your experiences, they’ll be less likely to cave in to “white coat syndrome”, where people just nod at anything the Dr says.

    I agree that a counsellor can make all the difference, with impartial advice and support to help navigate strategies and options.

    Thanks,
    Alicia

    • intrepidallergymum
      February 5, 2012 at 12:49 pm #

      Thanks for asking the question Alicia, I hope it helps. Gone through a few tissues writing it – but better out than in (another mantra) !!

  2. Whyalla Accommodation
    February 7, 2012 at 6:03 am #

    You have uploaded a fantastic resource.

  3. intrepidallergymum
    February 17, 2012 at 11:19 am #

    Thank you for dropping by and your feedback!
    Best wishes
    Charmaine

  4. Po' Girl Shines
    July 11, 2012 at 11:59 pm #

    Good luck and God Bless! My youngest son was allergic to everything when he was born over 30 years ago. He did not have life theatening effects with food, thank heavens. My son mostly had topical problems, but initially could not even hold down breast milk. He had all kinds of skin rashes, swellings. He had a reaction to the drops they placed in his eyes after he was born and the Dr’s told me if he was not as big a weight baby as he was, he would have had to remain in the hospital when I checked out as a maternity patient. They gave him all kinds of immunity tests later, but none were positive so they told me that know he has some kind of an immune disorder, but not one with a name.
    I cannot imagine having to be so vigilant with regards to food that way because they hide ingredients and there are so many things added that you would not think would be there. Do you think that it is odd that so many people born now have allergies to food that should not create a reaction such as this? People never used to experience this. I try to think if is because of all the added pesticides and all the pollution we now have that has also increased asthma in children. Us older folks have immunities to some of this, but the tender babies and children do not. Sorry so long!

    • intrepidallergymum
      July 12, 2012 at 7:45 am #

      Hi, thank you for your comment. Yes it is a long road with allergies and you have had your own personal experience. There are many ideas as to why, but I try and focus on the every day otherwise sometimes it can get too daunting. My son is a healthy boy, he has never had crisps or biscuits from the store, so he does happily miss out on those preservatives and nasty hidden extras. But I sometimes wonder what sort of food I would give him if he didn’t have the allergies! I am confident he will grow out of his allergies. Thank you for the God Bless, I know faith and hope is vital as I navigate the sometimes rocky road of life, and I am sending a big God bless back to you : )

      • Alicia Young
        July 12, 2012 at 11:24 am #

        Very interesting – and sobering – to read Po Girl Shines post about what she and her child endured. We’re so fortunate today, with the information available, the lobby groups – and the forums like this to promote discussion and share ideas. Keep it up, Intrepid Allergy Mum, you’re providing a valuable service.

      • intrepidallergymum
        July 12, 2012 at 1:42 pm #

        Hi Alicia, thanks for stopping by and your comment, yes it can be overwhelming and Po is shining example that kids grow up and go on to become adults, hopefully with less allergies! It is very intense when you are dealing with it on a daily basis, and I hope one day I can look back like Po and be supportive to others who will walk this road. I think the blog is inspiring me to be more adventurous and try some new recipes so it has a multiplier effect, I hope that my posts in a small way encourage Mum’s to have a go and see that there are other alternatives to the norm, lots of wonderful allergy free recipes out there and so little time!

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