Tuesday, September 28, 2010

Allergy is no joke!

I tend not to get caught up in the hype that is constantly aflutter surrounding food allergies. I will openly talk to anyone who broaches the topic as it is a HUGE part of my life, as my 7yr old daughter suffers Anaphylaxis.

Jessica is anaphylactic to treenuts, sesame and latex.

She is reactive to egg, potato, peanut, banana, dust, mould, animal dander, rodents, grass, pollen, and a myriad of other things. She also has severe eczema (currently 90% controlled with immunossupression therapy) and asthma. All of which interact.

Now, allergy, anaphylaxis, intolerance are definitely "buzz" words at the moment. I'm not so sure many people really understand the difference between an intolerance and anaphylaxis. Hell, Blogger is even flagging Anaphylaxis and Anaphylactic as spelling errors, so clearly not even in their dictionary!

Anaphylxis Australia describes Anaphylaxis to mean..
(source http://www.allergyfacts.org.au/whatis.html)
Anaphylaxis is the most severe form of allergic reaction and is potentially life threatening. It must be treated as a medical emergency, requiring immediate treatment and urgent medical attention.
Anaphylaxis is a generalised allergic reaction, which often involves more than one body system (e.g. skin, respiratory, gastro-intestinal, cardiovascular). A severe allergic reaction usually occurs within 20 minutes of exposure to the trigger and can rapidly become life threatening.

This is what we, the parents (and the sufferers) fail to get people to understand. 


Having a child who suffers anaphylaxis is terrifying! Here I was worried about school yard bullying, and yet the problem is SOO much bigger. In the last week, an Australian network (Channel 9) allowed a comedian onto their popular TV show entitled "The Footy Show". I am choosing not to name the comedian, link his website nor the YouTube video of his performance on the Footy Show as it will only increase his profile! So anyways, this "comedian" (trust me, I use the term lightly) decided to mock children with food allergies.

What the hell was Channel 9 thinking???

They would never have allowed a comedian on air mocking children with Cancer or other terminal illness, which in many ways, Anaphylaxis is. I was alerted to this controversial topic through my Anaphylaxis Talk forum friends as a group had been formed on Facebook. There are many furious people.

I read on the Facebook page today that The Footy Show is "considering airing an apology" on their next show. TOO LATE! 

You've just let the entire country think that food allergy is something comical, a joke, something not to take seriously! 

I have been thinking about this topic over and over for 3 days now. At first I did not join the group, though I did watch the YouTube video of the comedian's performance, I went to his website and saw he is so unoriginal that it wasn't a new skit, but something he has been using for some time. How un-funny does a person have to be to mock ill children?!?! He claimed in his skit to be a father of a 13yr old, who knows if this is true, but if it is he has clearly been blessed with healthy children. Something not all of us are so fortunate to receive.

Anaphylaxis sufferers (it annoys me when people say "food allergy sufferers" because bee stings, medicine, latex.. so many non-food items can cause the exact same responses) in Australia struggle to be recognized as having a serious medical condition. The must carry Epinephren Auto Injectors (commonly known by the brand name EpiPen) with them everywhere just in case of a reaction. To school, to lunch at the cafe, to the park and the pool. Everywhere! An autoinjector is filled with adrenalin and injected (yes, as in needle) into a persons thigh in times of severe reaction. Do you know the signs of Anaphylaxis?

From Anaphylaxis Australia
Mild to moderate allergic reaction
• Tingling of the mouth
• Hives, welts or body redness
• Swelling of the face, lips, eyes
• Vomiting, abdominal pain

Severe allergic reaction- ANAPHYLAXIS
• Difficulty and/or noisy breathing
• Swelling of the tongue
• Swelling or tightness in the throat
• Difficulty talking or hoarse voice
• Wheeze or persistent cough
• Loss of consciousness and/or collapse
• Pale and floppy (young children)

My daughter Jessica suffered an anaphylactic reaction in November last year and it was terrifying! She wears a MedicAlert bracelet always. She doesn't take it off to sleep, shower, swim.. I replace it as she grows or things change, I always include my phone number. My biggest fear is losing her. All parents could lose their children, but I know the risks are so much higher with Jessi due to the speed at which Anaphylaxis can kill. 

Did you know that the airways close, they swell shut? If a person goes without oxygen for 3 minutes they can suffer severe, irreversible brain damage. My daughter could die within minutes of ingestion or contact with one of her allergens. DIE. DEAD. Gone forever. Yes, it really IS that serious. Why is it people still think food allergy is a joke? Just people being bothersome?

In Bunbury hospital after suffering Anaphylaxis
in Nov 2009
I will never know for certain that being without the EpiPen that day would have been the difference between life and death. I will always remember the fear I felt at knowing how violently ill she was, vomiting all through the car, crying, complaining of an itchy throat, hacking coughs, face so blotchy, red and swollen, getting weak and my own anxiety at knowing I would have to jam that damn needle into her tiny little leg and wait. Just wait and see what happened. Calling 000, trying to direct an ambulance to our location in a town I didn't know. Hearing the ambulance drive by us, cos let's face it, my directions stank! Having to let my baby girl get in that ambulance on her own so I could follow in my own car. That was THE hardest thing I have ever had to do as a parent.  I'm crying now as I write this, reliving those feelings. At the hospital they went straight into panic mode. An EpiPen is a temporary solution. Time enough to find help. Said to last about 20mins. At the hospital she was in Emergency right by the nurses station, I had to explain the whole latex allergy in a mad hurry so they could treat her. The put an IV into her arm and drew up adrenalin into a needle and it sat on a trolley RIGHT beside her. Just waiting for that moment it all started over again. Thank goodness it didn't. We had to stay at the hospital, in emergency with that needle full of adrenalin taunting me for over 4hrs. They had to wait for her facial swelling to subside, for her to be able to eat, and to be absolutely certain she wouldn't re-react. 

Jessica's IV after Anaphylaxis
As scary as that entire ordeal was, I will also never forget how quickly the EpiPen worked. I was on the phone to 000 when I administered it. Jessi was SCREAMING "mummy no!" over and over and over, my own resolve was gone and I was crying and telling the 000 operator I didn't want to do it. She reassured me she would talk me through it, and I recall feeling like an idiot because I knew my daughter needed the help and I have been trained and know exactly what to do. But oh the feelings you experience when you're actually faced with it! That EpiPen.. my oh my! Within 30seconds she was looking better, the redness and most of the swelling simply vanished and she was still crying but not looking so sick. When the ambulance arrived she was doing ok. She was 6 years old.

The guilt still sits deep within me, knowing I gave her 2 squares of a chocolate that I didn't realize contained hazelnuts. Just 4% hazelnuts (as stated on the pack) and only 2 squares, and that's what my daughters body did to her. That's what I did to her.

Jessica will never play with a basketball, never enjoy the freedoms of eating out and eating anything on the menu. As she gets older boys will be a huge issue for her as she can't just kiss some random guy, what if he's just eaten nuts? Not to mention the latex allergy causing issues for contraception and womens toiletries. 

80% of kids with egg allergy "outgrow" their allergy, just 20% of kids with nut allergies will outgrow their allergy. That is a huge, HUGE 80% who don't. And sadly, latex allergy will never go away and will only increase in seriousness with more contact. Sesame is on the Australian list of top 10 food allergens, but not the American. It's interesting how those top 10 lists differ in other parts of the world.

I wish Anaphylaxis would get more coverage, more understanding. By telling your child they should "wipe peanut butter along the corridors" may seem harmless and funny to you, but how about I tell my daughter to walk those same corridors carrying a gun? Yes, your harmless peanut butter is like a loaded gun to children with food allergies. It, like the gun, will kill. You have the comfort of knowing your child will safely eat that peanut butter, or clean it away and laugh at it's sticky, gooey texture while the anaphylactic child is huddling in a corner from fear.

Monday, September 27, 2010

So begins a new chapter

I took this photo of Jessica this morning. My goodness is she growing so fast!! This will be the last gorgeous photo for a while, both her top front teeth are wobbly at the moment. (it looked really washed out so I used "auto correct" in Photoshop Elements and now it looks really odd).

So, I quit my job. It was a decision I didn't want to have to make. It also took me a long time to make it. I realised when the problem person left work, the problems weren't going to go away. My employers refused to recognise the mistreatment and bullying (among other things) that were occurring. It came down to one meeting where, when I got very upset and frustrated and asked to call the meeting short as I could no longer concentrate or put together words, and they said no. I left that meeting and promptly wrote my resignation letter. 

I was due to go to Perth for a week of work conferences just days after I handed in the resignation. Conferences I was REALLY looking forward too and had tried holding out for. As it was, I went to Perth to have a bit of a break and spent some time with my sister, a few nights with my best friend on her 158acre property where we shared breakfast on the porch with the horse, then nanna and Jessi took the train to Perth to meet me as Jessi was due to see her dermatologists.

The dermatology appointment went really well! Her dermatologist delcared her an "Imuran success story". Imuran is the immunosuppressant (azathioprine) Jessica's been on for, well, maybe 18mth-2yrs now. Basically her skin is looking fabulous and it seems the drugs are working!! She does still get boil like sores on her calves and for the first time in 3yrs we were actually able to show these to the dermatologist. She is now back on antibiotics to try get rid of these. It seems she is still carrying a lot of MRSA and it feels like we'll never escape that damn infection.

There is so much I want to say, so many things I want to share. Maybe now I am not working I will be a better behaved blogger and post more often? Who am I kidding! I know my track record ;) I am hoping to start making some items to sell, I have been drafting out patterns (sadly not my own or I'd happily share), cutting out fabric ready to have a big stitching day, and seriously contemplating where my life is headed. I still haven't worked that one out, but for now I am going to enjoy being a stay at home mum once more.