When our son was first diagnosed with CU my immediate reaction was to move. I didn't care that we would be leaving all of our family, because our son needed to be safe. It did break my heart that we would miss the nephew's/cousins birthday parties, the kids wouldn't see their grandparents as much, we would miss more holidays than we would be able to attend, and the list could go on and on with what we would miss since all of our family lives here. At the next follow up apt. to go over all the blood work for our son his allergist told us there was a chance his CU would disappear as fast as it showed up, so my husband and I tabled the discussion. Four months later we were back in the allergists office, and our daughter was diagnosed. I again instantly jumped to moving, and again the conversation was tabled due to the fact the condition could go away. Over the last 3 years, I have prayed, hoped, and willed the condition to go away. The kids having it for the rest of their lives was never an option for me, and I never made plans or thought about their teen/adult future with the condition.
Instead of outgrowing it, our son went the opposite direction and became very severe. We dealt with 6 anaphylactic shock episodes last winter, one in temps of 50 F another in 40F. Please know, as I have recently learned, there is a big difference between an anaphylactic reaction and an anaphylactic shock reaction. Stolen from an article " Anaphylaxis refers simply to a severe allergy reaction while anaphylactic shock is the most extreme form of anaphylaxis. This type of shock will result in death in just a few moments if help is not sought right away." (Source: http://EzineArticles.com/581295). If this confuses you like it did me, I had a friend break it down for me like this, because I was confused why our son never complained of throat swelling "Anaphylaxis can lead to shock, but it is not shock. Think of an accident victim, they can be traumatized so severely that they go into shock, but don't ever have swelling of the throat. Anaphylaxis is an allergic reaction marked by swelling of the airway. Your son is showing signs of shock with the listlessness. The Mayo clinic explained it that way to us. Either way, both are treated with Epinephrine." We also received genetic test results back that show something dealing with CU, but the finding is not conclusive to definitely say what it means.
So yesterday while out with my husband we started talking, and I wondered out loud, What happens if they don't outgrow it? How will they support themselves? Am I setting them up for failure? Due to last year the temps they are not allowed out of the house has almost tripled, and I am now for the first time ever, contemplating their future with CU. Due to these restrictions, they won't be able to have a job during winter months, they will be hidden away, and life will continue without them. But where do we move to? A warmer location is better for our son, but the air conditioning would send our daughter into an anaphylactic reaction. Moving someplace a little cooler for our daughter, would cause our son an anaphylactic reaction. We've asked the Dr.'s where to move to and they are as lost as we are, it's the million dollar question. The only thing they can tell us it to take a year or two and travel. They want us to live in different areas of the world for a month or two at a time and pick the place that seems to be best for both kids. Of course this sounds like fun, but I wonder how they expect us to afford it. Last time I checked we don't have an extremely wealthy family member, and powerball isn't going in my favor.
These are questions you need to ask yourself, and get very real with the answers. Then and only then will you be able to decide where to move, or if to move at all.