So I’m frustrated and I just don’t know where to start. I’m overwhelmed and with no answers, it is scary.
It’s scary not knowing what my daughter can or can’t eat. Or if she will go into anaphylactic shock for eating something she shouldn’t.
I think The biggest thing is the unknown. Everything is just so new and only 2 doctors are really studying what she has, so it is scary.
One minute she was enjoying hotdogs & hamburgers the next we found out they were making her sick. So that’s another I struggle I deal with. I was feeding my child something that was hurting her, without even knowing.
How can something so tiny cause that much trouble? Some say the government trials, others say it’s been around but no one knew about it. All I know is it is now a part of my family’s life. We have to make life changes which can be very trying!
Sometimes we have to cook two different meals, while others we try new things. I have to not only watch but teach her what to watch for. We have to make sure she doesn’t feel left out and provide education to her school, friends, and other family.
This is a life altering & can be life threatening diagnosis. There is currently no cure and it can get worse over time. So all I can do is learn as much as possible, ask lots of questions, and most of all, provide support for her.
Life changes, we just have to gain more knowledge and move on.