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?