Friday, January 24, 2014

What it's like to be an "allergy mom" -by Carissa K. (with a few of my own edits)

"What it's Like to Be an Allergy-Mom"

1. As the parent of a child with food allergies, it makes us crazy when people make any sort of assumption about food allergies other than this one assumption -- a food allergy is a life-threatening condition that causes children to stop. breathing. immediately. It's very real... and it's very scary.

2. As the parent of a child with food allergies we want you to know that this is not a lifestyle choice. While it's admirable that some people choose to eat healthy and be aware of the ingredients in their food, we aren't standing in the grocery store aisle reading the label on everything that goes into our cart as a hobby. We're studying those ingredients to make sure there's not an obscure ingredient that could kill our children. (Did you know that caramel coloring is made out of dairy? Are you familiar with the difference between sodium lactate and potassium lactate?  Did you know that gummy worms can contain peanuts?)

3. As the parent of a child with food allergies there is not a play-date or school activity that our child will attend without us having a discussion with the hosting parent, event chaperon or teacher first. Every event my child has ever participated in (ever!) from t-ball to school to summer camps has always been preempted with a medical conversation first. We know we're perceived as high-maintenance parents. And we feel badly about that because the level of diligence we're forced to have about the subject of food allergies may not be consistent with the level of diligence our personalities would normally reflect.

4. As the parent of a child with food allergies we have laid awake at night, wondering if we'll be able to spot the signs of our child's throat closing. We've been told that anaphylaxis can happen in less than two minutes, so not only do we wonder if we'll be able to identify this emergency, we wonder if our child's teacher, babysitter, grandparent, recess monitor, friend or coach will know when our child can't breathe.

5. As a parent of a child with food allergies we have laid awake at night, wondering if our child will ever be able to attend a party in college or share a random kiss. And if she does, who will carry her epi-pen?

6. Speaking of which, as the parent of a child with food allergies we leave the house remembering the basics like phone, wallets, keys -- Benedryl and epi-pens. We know not to leave them in a car that is too hot or too cold and we always carry at least two, if not seven. Even with insurance, they are $100 a pop, so we treat them with the utmost respect for the year that we have them before they expire. But that's all ok, because those little devices carrying a shot of adrenaline could save our child, or at least sustain them, until the ambulance arrives.

7. As the parent of a child with food allergies, we sit outside every birthday party or sports practice while other parents leave. 

8. As the parent of a child with food allergies, we balance the emotional impact of being a helicopter parent against the medical threat of having our child go into anaphylaxis when we're not around. We feel guilty and scared of both.

9. As the parent of a child with food allergies, we have never relaxed, sat back and actually enjoyed or tasted a meal in a restaurant. Never. You see, we spend those meals playing and replaying the emergency plan in our head while quietly observing our child's breathing as she enjoys her meal.

10. As the parent of a child with food allergies, we regularly attend medical appointments in big time children's hospitals where we can't help but see other patients and deeply suffering families. And upon this realization, we are humbled and grateful and reminded of just how fortunate we are that we are the parents of a child with only food allergies. While our child has a life-threatening medical condition, it is manageable. And as long as we have help from you and others in managing it, our child is alive -- and that's really something!

Thursday, January 23, 2014

250 mgms, 300 mgms

B successfully up-dosed to 250 mgms 2 weeks ago, and has up-dosed to 300 mgms as of yesterday. The doc says 300mgms is equivalent to ONE peanut!  Usually, when we arrive in Raleigh, we have about 2 hours to kill before B's appointment time.  We normally use that time to get lunch and stop at Pet-Co or PetsMart. B loves all animals and she especially enjoys visiting the kittens.  However, yesterday when we arrived I asked B if she wanted to go to the pet store and she said that she didn't.  That answer really surprised me, and when I inquired as to why not, she said that she wanted to hurry up and get to the doctor's office.  She said that she was so excited and that she couldn't wait to eat one peanut!  Needless to say, my heart soared.  My fearful, anxious little girl was so excited because she knew that she had reached an incredible milestone.

B ate her one peanut dose with a smile on her face and joy in her heart, then proceeded to wait out her 2 hour watch period without any problems.  She will be on this dose for the next two weeks, and then she will up dose to 400mgms.  The journey that B is on is an amazing one.  Seeing her confidence renewed and her anxiety slowly subsiding, brings joy to my own heart.  Our decision to start our daughter in OIT has been validated in so many different ways, B's excitement and joy is just one of them.