Friday, October 19, 2012

Take the Fear out of Epinephrine

I have re-written this post 6 times now, but each one was two miles long and I don't want my main message to get lost in the fine details of the events of the night.  So, I'm going to try and keep this really brief.  When you see how long this post is, just imagine how long the "long post" must have been!  If anyone wants more details about any part of the story, feel free to ask.

Whenever I tell one of these tales to my friends, and luckily I haven't had to tell too many of them, I like to show a picture of my daughter, from not too long after, to show that she is OK, now:
Now that I have complete omniscience about what was happening that night, hopefully I can tell the "short version" of the tale, but keep in mind that I did not have the luxury of a crystal ball, as all of this was unfolding.

Apparently, my daughter picked up a viral illness, that starts off with a facial rash, then several hours later produces a high fever and vomiting.  Unfortunately, I did not get the memo that this illness was on its way and chose this same Sunday as the day to let my daughter try a new candy.  (Halloween is coming up and she will be turning 4 in November, so I figured it was time.)  She developed the facial rash, shortly thereafter, and that put me on alert, but we had given her Allegra and decided to watch and wait.  For the past several months, I have been sleeping with her in her Queen-size bed (it's a long story, don't judge - ha!) and at 2:00 a.m. I could hear her breathing with a slight gurgle-sound and I put my head on her back and noticed she was burning up.

I got my husband and we woke her up and she immediately complained that her throat and cheek hurt, and said she wanted (hemp) milk and then said she wanted to go to the bathroom.  All of this was causing me concern.  Even though this was several hours after the candy, she has had delayed reactions to foods, before.  The fever was not on the "usual" anaphylaxis symptoms list, but everything else was setting off bells.  I had "new candy" on my brain.  I knew an illness was a possibility, but was unaware of the virus going around town and I could not be sure of what was happening to her.  I told my husband that if any new symptoms came up, I would have no choice and that we couldn't take a chance.  Just then, our daughter was shaking, saying she was cold, and she leaned over the toilet and threw up a little.  I cleaned her little face, then I grabbed the EpiPen, pulled off the safety cap, told her that I was sorry, but I needed to give her "this" medicine (she knows what it is and how it works, we have used the trainer many times) and my husband was squatting behind her, hugging her.  I pushed it into her leg, until it clicked.  She said, "Oww!" and I counted to 10.  She stayed still, thank goodness, and then I rubbed the spot for a few seconds. (Important note:  When someone is administered epinephrine, they should lie down, with their feet slightly elevated.  I had my husband pick her up and take her to the couch, to lay her down, but I should have had her lie down, right where she was already located.  "Sitting or standing up suddenly after receiving epinephrine can lead to “empty vena cava” or “empty ventricle” syndrome and sudden death."  This important information is also covered in the Anaphylaxis First Aid Training Course provided by EpiCenter Medical.)  

She didn't seem fazed, but later described to me how the medicine went all down her leg and up to her head and it made her heart go really fast, "like [my] sewing machine on the fast speed".  (I have a Brother SE-400 with the button you can push to make it sew really fast!)  She also said it was beating both slow, then fast, like on the "broidery" setting, so I guess her heartbeat was changing speeds at times.  I asked her if the shot hurt like the ones she gets at the doctor and she said the ones at the doctor's office hurt more and that confirms what I have read, about the needle being smaller than those used for vaccines.  She said the needle didn't hurt, going into her leg.  She described it going in as "smooth", which I thought was interesting.  It turns out that it was actually the amount of pressure I put on the EpiPen housing and not the needle, itself, that made her say "Ow".   

After administering the epinephrine, I called 911, as we're supposed to, and they came to check her out.  They told us about the virus going around, and I also later found out about two other little girls who had the exact same symptoms, who don't have my daughter's food allergy history.  The EMS team was very nice and said there was no charge for their visit and since we "refused transport" we didn't have a charge for that, either.  They said we could call any time, though we certainly hope we don't need their services, again, but it's good to know, nonetheless.  (Edited to add: I wanted to add a note about the fact that we "refused transport".  EMS said they were perfectly fine with that, as I told them I was concerned that she would pick up more germs in the ER, given all that was going around, and they agreed and said she would be fine.  The mandatory observation period is typically to monitor for biphasic anaphylactic reactions, but she did not have an anaphylactic reaction, so there was nothing to monitor for, and the EMS personnel said to just follow up with her pediatrician the next day.  I just didn't want anyone to be concerned that we "refused transport" against EMS' recommendation, or something.

It was a stressful night, but once it was all done, all of that built up anxiety and fear over administering the epinephrine was gone.  I am no longer afraid of it.  After seeing my daughter talk about it like it was not that big of a deal, I'm hoping she is not afraid of it, either.  I have talked to her a few times about it, since, and she does not seem bothered by it, at all.  That is the main point I want to get across.  What used to be "A-pin-I-fear-in" is now my "Epineph-Friend".  (If you aren't familiar with Kyle Dine's music for children, you really need to go to his website!  He has a song called, "My Epineph-Friend" from the album "Food Allergies Rock!"

There really is no reason to be afraid of using this medicine.  That is how we need to see it.  It's just another medicine.  I know this might sound a little bad, but it was a really easy process for me.  All I felt was a little click, and the needle is always completely out of sight.  There is a long, plastic cover that comes out over the needle and I never saw it.  It seemed just as "fake" as using the trainer, aside from my little Sweetie's "Oww!" , which gave me a little pain in my stomach.  It didn't give me the sense that I had just injected my child with a long needle, though.  I say this to hopefully put others' minds at ease, if you're worried about how it might feel to administer the medicine.  If you have used the trainer, it is pretty much just like that.

Another point I want to make is that we shouldn't be discouraged from making the call to administer epinephrine, even if it looks "iffy" and might be a viral illness.  (Plus, check out my other post on anaphylaxis posing as asthma, as well.)  As I said before, we do not have a crystal ball and have no way of knowing the future.  We could have a set of symptoms that turns out to be anaphylaxis where epinephrine was needed and the same symptoms may end up being a viral illness where epinephrine was unnecessary, as was the case with my daughter.  Which would we prefer, to have not needed it and administered it, or to have needed it and not have administered it?  The tricky thing is we have no way of knowing ahead of time, which scenario we're experiencing and by a certain point in one scenario, it would be too late.

I know that first-hand experience is always more powerful, but I'm hoping those of you reading will take my words to heart and believe me when I say that it's really nothing to fear.  We need everyone to carry their epinephrine at all times, and most importantly, use it!  

Look back at my smiling Sweetie at the top.  If she can handle it, you can, too!

I've written a follow-up post, which you can see here.

Thursday, October 18, 2012

Top 25 Food Allergy Mom Blogs 2012!

Hooray! Voting has finally concluded and Amazing and Atopic made the list at #7!  I am so very grateful to all who voted, especially those who took the time to vote on a daily basis.  The whole point of my spending time on this blog is to share information...information that I feel I didn't have when my daughter was first diagnosed.  Not every single post is pure gold, but usually when I take the time to post something, it is because I really feel that it something that needs to be shared with others...some insight that I have discovered along the way.  I know I'm not the first one to think these thoughts or connect these dots, but we need to put these revelations out there, everywhere we can, because you never know where someone is looking, or who you might reach.  

I have several posts queued up in my head, but it can be hard to find the time.   (I am a stay-at-home mom, but also a work-at-home mom on certain days of the week.)  I am currently working on a post about my daughter's first experience with epinephrine, which just happened this week, as a matter of fact.  It's a really long story, and I'm working on shortening it, because I want people to actually read it and get my main points. :)

In the meantime, if you're new here, please have a look at some of my favorite posts.  Also, if you scroll down, you will see some of my more recent posts.

Also, be sure to check out the other great bloggers on the list, including Itchy Little World, The Allergist Mom, The Nut-Free Mom, Food Allergy Mom Doc, etc.  So much to read, so little time!

Friday, October 12, 2012

The Best Gluten Free Flour Mix!

My daughter's birthday is coming up, next month, and I have been trying to find THE cupcake recipe for her party.  I've been fine with the ones I've made in the past, but they do end up a bit dense as time passes and the next day, after being in the fridge, they are definitely thick and chewy, etc.

I had ordered some Authentic Foods Gluten Free Flour Mix a long, long time ago, back when I bought Cybele Pascal's book, The Allergen Free Baker's Handbook, and I had made some sugar cookies with it and they came out good, but it was back when I first started baking allergen-friendly treats, so that was about all I made with it.  The flour seemed a little pricey to me and the shipping cost was almost as much as an extra bag of flour, so I didn't order more for a long time.  

I got busy, kept on buying King Arthur Mill's flour at the store, but I decided to place another order from Authentic Foods and try some cupcakes, using Cybele Pascal's Easter Cupcake Recipe.  I also ordered some of Authentic Food's Vanilla Powder, which you can use in the place of vanilla extract.

The new flour came in the mail, and I made a batch of cupcakes for my daughter to take to a friend's birthday party.  When the cupcakes were baking, she came into the kitchen and said, "I smell something yummy!"  When I took them out of the oven, they looked promising...When they cooled a bit and I opened one up to check the texture, I wanted to weep tears of joy!  They were SO FLUFFY!!  (Cue the image of the little girl from "Despicable Me"...)  We tasted a piece and it was SOOOO GOOD!  This was hands-down, THE BEST gluten-free/wheat-free, egg-free, milk-free, nut-free, probably-pretty-close-to-corn-free cupcake I had ever made!  Now, I am not the world's best baker, so I know this might not be saying much, but it was really good.  My daughter was really excited and told me, "Mommy, I want you to buy this flour EVERY TIME!"

I had doubts about what kind of difference a flour mix could make, since I had individually mixed flours, before, but this flour is just amazing.  It comes in a gold bag for a reason - because it's worth its weight in gold!  OK, I'm gushing, I know, but I think those of you who bake gluten-free, frequently, might understand the trials and tribulations one goes through in trying to find THE flour and THE recipe that actually tastes good enough that you don't feel bad subjecting all of your child's friends to it, at their birthday party. ;)  

For Cybele's recipe, I did make the following substitutions:
  • For the vegan yogurt, I used plain soy yogurt (that's what I had on hand)
  • For the cider vinegar, I used rice vinegar
  • Instead of granulated sugar, I used caster sugar (it's a very fine sugar, usually in a small bag)
  • Instead of vanilla extract, I used vanilla powder - no alcohol aftertaste!
The next day, I used the AF mix to make the Cake Pops/Cake Balls recipe and that came out even MORE delicious than the cupcakes and I was over the moon!  Have a look at this fluffy deliciousness:
I didn't even frost them, or anything...we were just eating them straight out of the machine (after they cooled enough, of course) and they were yummy!  The next day, my daughter did say, "They're different, but still good!" and I know that GF baked goods are just not as good once they have been refrigerated, but these were still so much tastier than the other things I have made in the past, that ended up a bit dense and chewy, after refrigeration.  

Oh, and it gets even better...I went to Google to search for more flour, since I knew I would need more for my daughter's birthday and I saw that it is now available through Amazon and even via Amazon Prime!    

Do you all already use this wonderful stuff?  Am I the last one to the delicious party?  What do you all think of it?  Send me some recipes! :)

P.S.  If you are ordering directly from Authentic Foods' website, the gentleman I spoke to from Customer Service said to enter "Priority Rate Flat Box" in the shipping instructions, at Checkout, and that might save a bit on the shipping cost.  They don't charge your credit card until they ship your order, so it might be less than what you see when you check out.  Amazon does not carry their entire product line, so if you want additional items, like their Vanilla Powder, you will have to go straight to their site.


P.P.S. I also wanted that I love how well it works, for being so simple.  My daughter has so many restrictions and I like to stick to tried-and-true ingredients and all this has is superfine brown rice flour, potato starch and tapioca flour.  So simple, yet so good.

Tuesday, October 2, 2012

GMO Hypoallergenic Milk Looks HYPERallergenic to Me!

I just saw this article posted by the Facebook pages of both Allergic Child and A Gift of Miles:

Here is a quote from the article: (my emphasis added in bold)

This special calf, conceived through genetic modification and cloning, produces milk that contains no detectable levels of beta-lactoglobulin (BLG), the protein that is believed to trigger allergic reactions.

What's more, the hypoallergenic milk from this calf appears to be even more nutritious than regular cow's milk, as it contains double the amount of the healthy milk proteins known as caseins.
(Updated 10/3 after my head cleared a bit from the initial shock.  Thanks to the author of  the blog End Eczema for reminding me that BLG is the main protein in whey.)
This looks like sheer madness to me.  They mention the protein (BLG) that they "believe" triggers allergic reactions.  (BLG is the main protein in whey.)  Well, we KNOW that CASEIN causes allergic reactions!!  So, why in the world would you go and DOUBLE the amount of the deadly protein (to those with milk protein allergies) in your new, supposedly "hypoallergenic" new milk?  I am completely flabbergasted.

Allow me to share my daughter's blood test results from the component testing I had done.  On the List of Allergies page, I have the following:

Alpha-lactalbumin: 1.55 kUA/L
Beta-lactoglobulin: 6.48 kUA/L
Casein:                59.10 kUA/L

Cheddar Cheese:  18.50 kUA/L
Whey:                  18.20 kUA/L

The PPV for milk is 15, not that we need that, since we have various confirmed reactions, including a trip to the ER to confirm that allergy.
So, there you can see the IgE values for the BLG, which is only 6.48 versus the 59.10 for casein.  Which one do you think concerns me more?  To me, that new "hypoallergenic" milk might as well be napalm, if it has twice the amount of casein proteins in it.

Though I appreciate the intent, in trying to produce a "safe" cow's milk, it appears that they have, instead, reduced the protein that I was less concerned about and doubled the one most dangerous to my daughter.  Thanks, but no thanks.  I don't want that kind of milk out in the world, making every other milk-containing product that much more dangerous for my daughter to be around.

I would love for an allergist's opinion on this subject.  How can they reduce one allergen, while doubling another that is already known to cause anaphylaxis?  I just don't see how that is supposed to help.

Edited to Add: Here is another link, shared by The Eczema Company, on this developing story: 

The more I read, the less I like...Also, this second article mentions that we don't even need do this kind of thing to remove BLG from milk.  I once had a notion in my mind that perhaps GMOs might serve a good purpose for helping those of us in the allergy community, but this is not a good example.  That poor cow has no tail and they don't know why!