Friday, July 30, 2010

Peanut Butter Dreams...

So, just the other day I woke up and realized I had been dreaming about eating spoonfuls of peanut butter chocolate chip cookie dough. I know, this is my third post recently involving cookie dough. I have issues. But, in my dream I was freaking out about eating the peanut butter! I have read that if you have a food allergic child you should avoid those foods when you are pregnant with or breastfeeding subsequent children. As such, I haven't had straight up peanut butter or peanuts since sometime around last September. For the most part, that's not a problem. I don't worry about cross-contamination, etc. for myself and Max, but am avoiding the purest form of peanut products. Easter was hard with those gorgeous Reese's eggs staring a nearly 8 month pregnant lady in the face. But that's about the biggest temptation I've faced. Until my dream anyway. Wow, that was a long prelude to what is likely to be a long (and boring to most) post.

But one year ago today Luke had a peanut butter sandwich with a side of nasty hives and the rest is history. For those of you wondering, I did have to dig up the calendar from last year to find out the exact date. It's not really etched into my head - just the vague knowledge that it was the end of July.

I am so happy with the progress we have made and the things we have learned. I'm also a little disappointed with my own occasional weaknesses (aka breakdowns) as it relates to Luke and his allergies. And please please please know that I am very aware that parents deal with much scarier and more serious issues. The fact that it is "only" food allergies is not lost on me!
Progress: I can get up in the morning and not want to throw up thinking of having to feed Luke three meals and some snacks during the day. For the first week or two post diagnosis it truly made me sick to wake up and think about doing this. The key for me is that the more homemade I can make something the more I can control what's in it and reduce the risk of cross-contamination. This doesn't mean I'm a healthy cook or a good cook. But it does mean that I've learned to make homemade ice cream for birthday parties and bagel dogs that start with yeast and water and donuts fried in my own kitchen and cupcakes that don't come from a bakery. I am thankful for my bread machine and my ice cream maker. I am thankful that I am at home during the day and can spend more time cooking than I was able to when I was working outside of our home. I am thankful to have a handle on which brands label well.
What I'm learning: There are a lot of good resources on the internet. I am blessed to have a really good friend whose little boy is Seth's age and peanut allergic so she's been a great source of information! There's also someone at the church we are attending with a school aged allergic child and she has been very kind to share her knowledge as well.

There is a support group that meets on our side of town. I've only been to a few of the meetings. Honestly, most of the group members have older children and all the talk of the issues with school scare me so I don't really enjoy it too much. But there is an allergist who spoke a few months ago at a meeting I attended and it was so very interesting. I have linked to his blog in my allergy info section.

*I was really surprised to learn that the initial testing should happen a few weeks after a reaction. Any closer to a reaction and the test results are likely to be wrong - and not in a good way. Luke was tested the day of his reaction (bad!) and tested as moderate. It's likely he's more allergic than the test indicated.

*He also talked about a study, in another part of the country, where they were gradually exposing allergic children to the allergen (in a very controlled situation) and the children were able to slowly build up to tolerating small amounts of the allergen. Dave and I are split on whether we would want him to take part in something like this if it was ever an option.

I've also learned that the key is to be prepared. If we're going somewhere that there might be treats then I take my own. You can't just tell a two year old that he can't eat something. You need a substitute for what he can't have. So far, this has worked. Although admittedly we haven't been too many places that this was necessary. I imagine as he gets older and goes to birthday parties, etc. it will get much harder. But for me, I never want him to feel left out so I must be prepared.

As much as I wish I didn't have to know about it, I think it is all very interesting. I really think it would be neat to educate schools/churches/someone about allergies at some point. I certainly don't know all that I would need to know to do that, but I would be willing to learn.
Occasional meltdowns: A rash of any kind freaks me out as I assume it's hives. For one, I'm learning that Luke doesn't tolerate heat well. Or I guess I should say his skin doesn't tolerate heat well. He really doesn't seem to mind at all but gets a little rashy sometimes when he's hot. I have to get used to that and not just assume I've fed him something bad and he's breaking out.

I would like for our pantry to not have anything in it that he cannot eat. For now, I have boxes clearly labelled that he can or cannot eat. But sometimes he catches one of us eating something and to tell him he can't have it makes me crazy, even though he usually doesn't care near as much as I do.

And this one is soooooo ridiculous - but we watch a lot of cooking shows and sometimes it hits me that Luke can't really be a chef when he grows up because there's too much he can't eat/taste. And then it makes me sad that my baby is limited in the things he can do.

And Seth thinks it's cute to call Luke "Mr. Peanut." Clearly, that's just annoying. And Seth eats sunbutter and jelly sandwiches nearly every day. I have told him it's not peanut butter but he refuses to believe me and asks for peanut butter and jelly. One day Luke asked for peanut butter and I told him he couldn't have it. He sat his little body in the corner of our huge couch, slouched his shoulders, and looked down at his pitiful hands in his lap - likely just for show for me, but still.
And I worry about school but that one's a few years away.

And another tough one for me is finding a sitter or using community type daycare (at the gym or a parent's day out type of setting). I don't feel like I can just say 'here he is with his epipen' and expect everyone to know what to do (thankfully he aged out of the area at the gym - not that I've been going - where they feed the kids so that makes it much easier).


So, that's that. A year down, the rest of his life to go. Wow, if anyone is still reading, you deserve some cookie dough! I ate all of mine, so you'll have to find your own. But do reward yourself!! No, really, thanks for hanging in there. Now I'm going to go get some hugs from the cutest 2 year old I know!

3 comments:

Jill said...

Oh Cara, what a sweet post! I'm sorry that you have this to deal with, but you are so loving and gracious, that I know God picked the best mom for Luke to help him get through this. Hang in there!!

Seth calling him Mr.Peanut? Now that just made my night! That really struck my funny bone. Sorry, Luke!

And what about Monday for a visit?? Could I possibly get my hands on that sweet babe of yours?

Elizabeth, blogging for SunButter said...

Cara,
What a great post about dealing with food allergies. As a mom, I appreciate your perspective. As a blogger for SunButter, I'm learning from parents like you. Thanks for an educational post.

Marilyn said...

Love the pictures and the story of your experiences with Luke's food allergies. You have three beautiful adorable little boys and they are blessed with a greaaaaaat Mommy!