Questions About the Future

The other night I laid in bed thinking about the future for my son. We've actually been managing pretty well. I did however recently decide to join American Partnership for Eosinophilic Disorders (APFED) in hopes of meeting other parents and families dealing with similar issues. I also signed up with another group of people dealing with EE and other eosinophilic disorders. What I got was overwhelmed. What I read about was all the issues other people were dealing with and the questions they had that didn't have answers, and the lack of expertise with these conditions. I was doing OK, and now I have a lot more questions, or rather concerns about what the future holds.

• Will my son's condition get better, worse, or stay the same?
• The disease has only been diagnosed, treated and studied for the past 10 years.
• No one is certain of the pronosis long term.
• There is no cure at this time.
• Treatment is pretty experimental with drugs or extreme in that some children are taken off of all foods and fed a special formula, some through a feeding tube and if they're lucky, they can resume eating a handful of foods as they try each one and see how their body responds.
• No one knows why it happens in the first place. How much research is actually going on about this?
• Many medical professionals have never even heard of these eosinophilic disorders. I've read about how some parents are told they have no idea what they're talking about or laughed at by doctors when they do what they can to fight with not much more to go on than their gut instinct. Why aren't medical professionals updated on these illnesses?
• How will my son manage his treatment once he starts school? Will he somehow be pegged as different because of it?
• I read so many people talk about their teenager being diagnosed, or their second child being diagnosed later in life than their first child, or whatever the scenario. So, just because my daughter seems to be perfectly healthy now and has zero symptoms of this condition, it doesn't mean that she won't still come down with it in the future??? There is apparently a 50/50 chance she could also have it.

There are just so many unknowns about all of this. It can keep a person up at night wondering and worrying. I truly hope that more people become aware of these eosinophilic conditions, that funding is given to better study them, that treatments that work can be found, and that doctors all get educated appropriately so as to help those of us who look to them for answers.