Thursday, July 10, 2008

Good News...Worse News

After months of wait and worry we finally had Ben's allergy/asthma specialist appointment at Mac Master yesterday. Three hours, 26 allergy tests, an incompetent resident and a results reading with a specialist later the verdict is in. The good news is that Ben's allergies are far less extensive then we initially though. He tested negative for mold, dust, dander, pollen, animal hair etc. We got the go ahead to try lots of new foods that at worst will likely only manifest a sensitivity with eczema.

The very bad news is that Ben tested at the highest level of anaphlactic to all nuts and eggs. He is growing INTO the allergy and so his level of sensitivity may worsen. Right now it seems he reacts when it is ingested but in the next ten minutes of the the next ten months it could be triggered by one air born particle. Scary...terrifying.

He has some statistics for us...
1.7% of the Canadian population has what Ben has.
2% chance he will grow out of it.

No one knows why this happens or what we can do to prevent this condition with future children.

The Doctor gave us an introduction to life with anaphalaxis package. In it we receive a trainer EPI pen to train those who are with Ben, a subscription to "Allergic Living" an online question and tip site with allergy related products such as special epi pen belts, signs for the front door of our house and a medic alert pamphlet.

I read some interesting quotes from others living with this or have children with this. The biggest fear is that others don't understand that within 5 minutes of exposure you can die. That is crazy I know...but unfortunately the reality of it.

Trace Atkins, the country western singer who is an advocate of allergic children as his daughter suffers from multiple life threatening allergies has a good quote.

"I'm sorry it's an inconvenience but what gives you the right to kill my kid?" - Trace Atkins to a mother who brought a peanut butter sandwich to school.

We are joining a support group in order to learn how to not raise him to be afraid of everything and yet understand how serious one slip up can be. One tip I received from another parent with less severe allergies said from a young age she trained her daughter and son to only take food from their parents or their lunch bag that went anywhere they did pre packed. If anyone offered them food they could by the time they were 2 say "I have allergies".

It is hard for people to understand as well that Ben can be so vulnerable to something so simple because he looks so healthy.

It is going to be a different way of life. Nothing is so simple anymore, resturaunts, friends' homes, parks, school trips everything has to be checked first. I called airline for our trip east next week to have them right a note on our manifest. I also will ask the flight attendent to make an anoucement (if they won't I will!) about food that others have brought themselves on board. With recirculated air that can be dangerous". It doesn't mean that we DON'T do these just will mean we do them differently. I also don't mind being seen as the ultra over protective mother who won't leave her 2nd grader alone at a birthday party and won't let you into her home without washing your hands. I have to be that mother, it's that simple.

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