Wednesday, September 25, 2013

Mom to Mom

The other day I was sitting around with a group of ladies and one of them started talking about her son, who is suffering from severe eczema.  Of course my ears perked up.  I started a sentence with, "Have you..." and in the second I paused, she answered, "Yes."  Oh, how I know that feeling.  When everyone around you is offering their advice and what helped their child, or their friend's child, or some random thing they read online that one time.  All well-meaing, all just trying to show support and care.  But, yeah, we've tried it all.  I wasn't even going to ask, "Have you tried.. (fill in the blank)."  I actually wanted to know if she'd been able to pin-point his triggers.  And as I remembered answering myself at one point, "It's everything" was her answer.

I will not ever call myself an eczema expert.  Eczema is a tricky little disease that presents itself differently in everyone.  So I know that what helped Rapunzel, may not help another child.  And I know how completely overwhelming any information can be when you're in the thick of the journey.  But I also know how badly I want to help them in any way that I can.

So, I told her I wouldn't offer up any advice, because I know she's tried everything.  But that I've been there.  I'm still there.  Just because Rapunzel's eczema is clear for the moment, all it can take is a small backslide and we could be right back in the middle of it again.  And that if she had any questions or just needed someone to talk to, I'm here.  She's doing an amazing job!

Saturday, September 21, 2013

About So Much More Than Gymnastics

We spent all of last year trying to figure out Rapunzel's eczema and how to get it and keep it under control.  I feel like since summer, we've finally gotten a handle on it.  We've figured out several of her triggers, implemented and sustained a helpful skincare regimen, and now her skin is clear and she's feeling good almost all the time!  It's been a long road, and I know we'll still have set backs, but I'm so glad that we've finally gotten to where we are.

One of the things we did last year in an attempt to help her skin, was to limit her extra curriculars.  Because her skin was so bad, there were many days when she had to stay covered, and even wrapped in bandages.  Being outside longer than a few minutes caused her to become itchy.  So there wasn't much as far as sports that she could take part in.  She couldn't even attend Belle's soccer games, so Eric and I had to take turns keeping her home, or finding a friend to watch her during games.

I was so pleased to see how much her skin healed over the summer, and how other than a few small flares, it's stayed healthy as we're coming up on fall.  So around the time we started school this year, we let her choose a sport/activity.  We did specify that it needed to be something indoors, as she gets overheated easily, and it stays hot here into November.  She chose gymnastics.

She had her first class competition today and I wasn't sure how she'd do.  She's only been in the class for a few weeks, and she still deals with a little bit of anxiety (although that has gotten SO MUCH BETTER since her skin has cleared up).  But, the girl did awesome.  There were only a few who earned a 1st place ribbon in all 4 events, and she was one of them.  She totally rocked it!

I was in tears as she stood on the podium and accepted her medal and ribbons.  I just think back to this time last year.  I was in tears as I watched her skin weep and bleed.  I was in tears as she was scared to even take a bath because the water burned her skin.  I was in tears as I applied medicine and bandages to her raw wounds.  I was in tears to the doctors, as I begged and pleaded with them to figure out why it was so bad.  I spent much of this past year in tears.  Wanting to help her but not knowing how.  And now, after pouring our hearts and souls into this journey, I'm in tears over how far she's come.  How far we've all come.

Saturday, September 14, 2013

Real Food

When I started removing known allergens from Rapunzel's diet, and therefore from my menu plans, I started just looking for anything that fit the bill. Even if it wasn't the healthiest, as long as it didn't contain her allergens. A lot of changes were healthier. No corn syrup meant somewhat healthier alternatives. But now that we've been avoiding corn (and the others) for over a year, I've begun to realize that I can still do better. So, I've been incorporating more real food meals. I'm not a 100% stickler, but its a change in the right direction. So, with that, I thought I'd share our menu plan for this week:

I still let the kids pick what they want for breakfast from our usual suspects:
Plain yogurt w/ a splash of vanilla and pure maple syrup, sometimes with granola on top
Plain oatmeal with maple syrup
Whole wheat toast with natural jelly or butter
Whole foods cereals
bagels with cream cheese

I don't usually eat the same things as the kids anymore. I will usually eat leftovers from dinner, or make a salad of some sort, sometimes a sandwich on whole wheat bread. You can see more of what I eat by following me on instagram @amberloveseric
But for the kids -
Egg salad, triscuits, cheese stick, raspberries, pineapple, cucumbers
Waffle/cream cheese sandwich, ants on a log, pear
Sliced apple and sunbutter sandwich, hummus and pita chips, carrots
Hummus, cheese, cucumber pita pocket, applesauce, grape tomatoes
Raspberry whole wheat muffins, smoothie pop, plain popcorn (popped sorghum for Rapunzel)

Teriyaki pork tenderloin, sesame noodles, green beans
Taco soup, salad
Stuffed peppers (stuffed with beef, quinoa, beans, veggies)
chicken pesto pasta, black bean soup
Sweet n sour chicken, brown rice, broccoli

Those menus don't really look all that different from past menus. The difference is the ingredients I use.  Real ingredients. Real food.  

Thursday, September 5, 2013

Immunologist Appt #3

We made a day trip to Houston yesterday for another appointment with Rapunzel's immunologist at Texas Children's. We left at 7am and got to the hospital at 11:30. Just enough time to scarf down some lunch and make our 12:00 appt.

I knew there would be a lot of waiting, so we came prepared with some schoolwork.  Love her "I don't want you to take my picture" face. 

The doctor came in and let us know that we'd first be doing a scratch test with extracts and actual foods for: corn, peas, and oranges.  

They brought in someone from Child Life to help her during the test. She did great!

This is after only a couple of minutes.  I didn't get another picture afterward because she was getting uncomfortable, so I got up to hold her hand. 

After the test was over, the doctor returned to go over the results.  They did scratches for pea extract, fresh pea, orange extract, fresh orange, corn extract, fresh corn, and boiled corn.

To Erica's chagrin, she is still allergic to peas. Big time. In the doctor's words, "quite possibly anaphylactic to them.". Both the extract and the fresh pea scratches swelled up substantially. Got it.  No peas. She didn't need to tell me twice!

Orange was inconclusive. The extract reaction was just ever so slightly positive, but the fresh orange was negative. She said if we wanted to attempt a food challenge on our own at home, she would be ok with that. We're thinking about it, but still avoiding orange for now. 

Corn was baffling. Of the 3 scratches for corn, one reaction was very large, one was borderline (but still positive) and one was negative.  Not enough evidence to rule out the corn allergy. And because there was a positive, we couldn't attempt the food challenge today. So, next time we come in, we'll be focusing on this.  We'll do another scratch test for corn - this time with corn on the cob and corn syrup. And possibly the food challenge. 

I was very confused about her testing positive on the skin tests, yet her blood tests coming back mostly normal. The doctor explained that we can't rely on one test over the other. Instead, we use all the results to paint a bigger picture of her allergies.  She also explained that just because her numbers do not indicate a possible anaphylactic response, does not mean that it's not a true allergy. Rapunzel has not experienced an anaphylactic reaction before, but her extensive stomach aches and general unwell feeling after ingesting an allergen are still definitely signs of an allergy, and are even sometimes referred to as slow anaphylaxis. 

I will admit that I became a little lax about what Rapunzel ate when we ate out this summer after her last appt, but my eyes have been reopened and I will continue to be diligent about what she eats!