Saturday, December 29, 2012
Food Allergy (IgE) Blood Tests - Part 3
It has been a long time since I wrote the post, "In Defense of Food Allergy (IgE) Blood Tests - Part Two", and since that time, I feel I have learned a little more and changed my tune, a little bit, about blood testing for food allergies.
I still believe that blood testing for food allergies can be very predictive, for foods above certain "positive predictive values" (scroll to the bottom of that page for those values) and I believe that having my daughter tested for a peanut allergy, as part of the standard childhood panel (which tests for the Top 8 food allergens and a few environmental allergens, typically), when we only suspected a milk allergy, saved her from experiencing what might have been a severe anaphylactic reaction. We did not expect her to test positive for peanuts, but we are certainly glad we found out via the blood test and not a real-life serious reaction.
If you have a family history of seasonal allergies, asthma, eczema or any other allergic conditions, and your child starts to show any signs of issues, like eczema of their own, frequent ear infections, etc., then I still believe blood testing is warranted. Birds of an atopic feather, tend to flock together, unfortunately. (Also, even if you don't get blood testing done right away, as I mentioned in my Maternal Diet and Food Allergies post, there is a helpful article on how to introduce solids to babies at risk for food allergies.)
However, I now no longer believe that I should have tested for any food for which there was not a suspected reaction (beyond the standard panel). Take a look at this list of foods, for which my daughter has been tested, along with the most recent IgE values:
The foods highlighted in yellow are the ones that were on her very first panel at 18 months of age. They constitute the "Top 8" foods. She tested "positive" to all except for the codfish and shrimp. After all the confusion about taking it in and out of her diet, she eats soy yogurt just fine, now. As for wheat, even though we declared the wheat trial a no-go, wheat is not an anaphylaxis risk on the level of her milk and peanut allergies. She is sensitized to it, and we avoid it in her diet as strictly as we do her other allergens, as far as ingestion goes, but she plays with Play-Doh and holds regular bread to feed ducks at the park, etc. The foods highlighted in dark pink are anaphylaxis risks. (Well, she has never eaten an almond, but it is too high risk to find out the hard way, so we avoid all tree nuts. She has also never eaten a peanut, but her whole peanut IgE levels have always been very high. We have also had the uKnow component testing done for her peanut allergy and she is highly sensitized to Ara 2 h, which is linked to severe systemic (anaphylactic) reactions.)
However, from there down in the list, that is where my opinion on blood testing for allergies has changed a bit. I used to think that blood testing had a place in the arena of trying to pinpoint the cause of eczema flares. I don't mean to say that it has no place, because obviously, it's my daughter's eczema rash that started this whole journey in the first place. If your child has a persistent rash and you feel food allergies might be the cause, by all means, I still believe food allergy testing is warranted. However, if no obvious results emerge, like my daughter's milk or peanut results, for example, I'm afraid the plain, tedious truth of the matter is that you're headed for an elimination diet.
Look at all those foods I tested, trying to hunt for the culprit to my daughter's eczema triggers. Now, I will say that I tested a few for valid reasons. I tested almond, because it's another "tree nut" and the walnut value was very low and I wanted another "tree nut" value to support my case for avoiding tree nuts, along with peanuts. Some people do not avoid tree nuts when their child is only allergic to peanuts, since peanuts are legumes, but I feel there is too big a risk for cross-contamination and when nuts are chopped, you cannot tell them apart, etc., so I wanted further information on my daughter's nut allergies. Seeing that value for almonds was confirmation enough for me to fully avoid nuts of all kinds.
The testing of flax seed was also a valid use of the blood test, since she had a reaction to it and the blood test confirmed that she is, indeed, severely allergic. As for sesame, the jury's still out on that one. That value of 15.5 gives me great pause, but she has never eaten sesame, before, that I know of, and having that value makes me nervous about trying it. Sesame is believed to be cross-reactive with peanuts, but there is no guarantee that she will be allergic to that, as well, so the blood test was not completely unwarranted.
So, I guess I just wanted to add a word of caution for those receiving food allergy testing results, to be very careful not to restrict their child's diet too much, based on the results, alone. It's a delicate balance. You want to make sure and strictly adhere to the zero-tolerance policy for your child's true anaphylaxis risks, and check every label, every time, avoid foods that have "may contain" labels (if it's a food for which they even label!), etc., and always carry your epinephrine auto-injectors (yes, carry at least 2, at all times!), but if you've already been through initial testing, and eliminated those and there's another food that you only suspect is an eczema trigger, I wouldn't recommend doing a blood test for it. In my experience, your best bet would be to do an elimination diet for it.
As the linked article states, you do NOT want to do elimination diets for any suspected anaphylaxis risks, but if this food has not caused any hives, itchy mouth/throat, difficulty breathing, stomach problems, or other signs of anaphylaxis, but is only suspected of aggravating eczema, it would be a good candidate for an elimination diet and not a good candidate for a blood test. (If the food is causing any signs that point to anaphylaxis, you will NOT want to do an elimination diet, NOR would I suggest a skin prick test and I would be back to recommending the blood test!)
Sunday, December 23, 2012
Take the Fear Out of Epinephrine - Part Two
Here's a follow-up post to my original post, to add some more points that I didn't get to make, the first time around.
Point #1: More than one dose of epinephrine might be needed to treat an allergic reaction.
Even though my daughter didn't actually need the epinephrine that she received, I did notice a couple of things. For one, despite the fact that we live literally down the street from EMS/Fire/Police, it did take them about 10-15 minutes to arrive. (Now, in their defense, I told the dispatcher that my daughter was breathing, not in great distress, etc., so they probably did not rush, as they would have if I had said she was without oxygen, so I'm not complaining, just explaining.) The other thing I noticed is that the epinephrine was metabolized pretty quickly. The rapid heartbeat she experienced subsided pretty quickly and she seemed to be "over" any of the major effects by the time EMS arrived. So, if she had been in need of that medication, she very well may have been in need of a second dose, had there been a severe allergic reaction that did not fully respond to the first dose. Since epinephrine can wear off so quickly, you need to keep monitoring the "patient", even though EMS has been called. You may administer additional epinephrine within minutes of the first injection, if necessary. This leads me to my next point...
Point #2: Always have at least TWO doses of epinephrine on hand, at all times, home or away!
Given the reasons why you may need a second dose, you should always have at least TWO doses of epinephrine on hand. This especially applies to when you are away from home. I think sometimes people feel like they just want to carry one (if they carry one, at all...*shudder*). However, when you're away from home, that is when you REALLY need to have two with you. It's like when you go on vacation and they suggest you pack extra medicine, in case your trip is delayed and you can't refill your prescription from where you are staying. Well, if you have a reaction while you're out and about and use your single dose, there's no time to run home for your second injector! Speaking of home, that reminds me of my third point...
Point #3: Always keep your anaphylaxis emergency kit in a particular place, with all the components together. Check it before you go to bed, after you brush your teeth. [or insert nightly-routine-point here.]
Even as "together" as I think I have things, I had recently done some rearranging and did not know where my daughter's rescue inhaler was, that night. I had the EpiPens in one place, the Benadryl and Allegra were in the kitchen, and it took me a bit to find her inhaler. Those items had all been together, but I had taken them out for various reasons and did not put them back in their spot, so I was scrambling around, looking for them. You don't want that in an emergency. You want everything you need, in a single location, ready to go.
Point #4: Don't let anyone make you feel foolish for having administered "unnecessary" epinephrine.
I feel like I was met with some second-guessing by one of the pediatricians when I took my daughter in for her follow-up visit. I got the impression that she felt I overreacted in administering epinephrine. I can see how she might think that, in the daylight hours, with the benefit of hindsight, after seeing a steady stream of sick kids march in and out, etc. However, given what studies are showing about how ER doctors and EMS personnel are failing to properly treat anaphylaxis (this linked article requires a free Medscape account), I did not appreciate her looking at me sideways over having made the call to administer the epinephrine to my daughter, and I don't want anyone else to be dissuaded, either. I'm not saying we should administer it whenever we feel like, on a whim, but if we truly feel that it is warranted and there are valid symptoms from the "anaphylaxis playbook" presenting themselves, then we do not need to have disapproving people's faces in our heads, making us pause and second-guess ourselves at that critical juncture. I would much rather have appreciated a "better safe than sorry", as we know all too often the case is usually that someone did not administer epinephrine when it was needed and not the other way around. I'd rather there be stacks of stories of people administering epinephrine and finding out it wasn't needed, after all, than to read one more story about someone who did not administer it, with tragic consequences. If anyone gives you any flack, send them to me!
Point #1: More than one dose of epinephrine might be needed to treat an allergic reaction.
Even though my daughter didn't actually need the epinephrine that she received, I did notice a couple of things. For one, despite the fact that we live literally down the street from EMS/Fire/Police, it did take them about 10-15 minutes to arrive. (Now, in their defense, I told the dispatcher that my daughter was breathing, not in great distress, etc., so they probably did not rush, as they would have if I had said she was without oxygen, so I'm not complaining, just explaining.) The other thing I noticed is that the epinephrine was metabolized pretty quickly. The rapid heartbeat she experienced subsided pretty quickly and she seemed to be "over" any of the major effects by the time EMS arrived. So, if she had been in need of that medication, she very well may have been in need of a second dose, had there been a severe allergic reaction that did not fully respond to the first dose. Since epinephrine can wear off so quickly, you need to keep monitoring the "patient", even though EMS has been called. You may administer additional epinephrine within minutes of the first injection, if necessary. This leads me to my next point...
Point #2: Always have at least TWO doses of epinephrine on hand, at all times, home or away!
Given the reasons why you may need a second dose, you should always have at least TWO doses of epinephrine on hand. This especially applies to when you are away from home. I think sometimes people feel like they just want to carry one (if they carry one, at all...*shudder*). However, when you're away from home, that is when you REALLY need to have two with you. It's like when you go on vacation and they suggest you pack extra medicine, in case your trip is delayed and you can't refill your prescription from where you are staying. Well, if you have a reaction while you're out and about and use your single dose, there's no time to run home for your second injector! Speaking of home, that reminds me of my third point...
Point #3: Always keep your anaphylaxis emergency kit in a particular place, with all the components together. Check it before you go to bed, after you brush your teeth. [or insert nightly-routine-point here.]
Even as "together" as I think I have things, I had recently done some rearranging and did not know where my daughter's rescue inhaler was, that night. I had the EpiPens in one place, the Benadryl and Allegra were in the kitchen, and it took me a bit to find her inhaler. Those items had all been together, but I had taken them out for various reasons and did not put them back in their spot, so I was scrambling around, looking for them. You don't want that in an emergency. You want everything you need, in a single location, ready to go.
Point #4: Don't let anyone make you feel foolish for having administered "unnecessary" epinephrine.
I feel like I was met with some second-guessing by one of the pediatricians when I took my daughter in for her follow-up visit. I got the impression that she felt I overreacted in administering epinephrine. I can see how she might think that, in the daylight hours, with the benefit of hindsight, after seeing a steady stream of sick kids march in and out, etc. However, given what studies are showing about how ER doctors and EMS personnel are failing to properly treat anaphylaxis (this linked article requires a free Medscape account), I did not appreciate her looking at me sideways over having made the call to administer the epinephrine to my daughter, and I don't want anyone else to be dissuaded, either. I'm not saying we should administer it whenever we feel like, on a whim, but if we truly feel that it is warranted and there are valid symptoms from the "anaphylaxis playbook" presenting themselves, then we do not need to have disapproving people's faces in our heads, making us pause and second-guess ourselves at that critical juncture. I would much rather have appreciated a "better safe than sorry", as we know all too often the case is usually that someone did not administer epinephrine when it was needed and not the other way around. I'd rather there be stacks of stories of people administering epinephrine and finding out it wasn't needed, after all, than to read one more story about someone who did not administer it, with tragic consequences. If anyone gives you any flack, send them to me!
Thursday, December 13, 2012
Milk Protein in Asthma Medications
I took my daughter to the allergist to find out about a daily asthma medication, because she is at the point of coughing every time she laughs too much, cries more than a little, or runs a few laps around the living room. This is not good. For a child at risk for anaphylaxis, she cannot afford to have her "baseline breathing" compromised. If she were to have an accidental exposure/anaphylactic reaction, she would literally have less "breathing room".
The allergist prescribed a combined treatment plan of Flovent, Xopenex HFA (rescue) and Veramyst (nasal spray for allergic rhinitis).
The only problem was, I opened the pharmacy bag with the Flovent Diskus box in it and right on the front of the package reads, "WITH LACTOSE"! Um, excuse me?! I open up the patient insert and it reads,
Now, the seed was planted in my brain to look out for this, because I had read a Facebook post from a fellow blogger (please forgive me, as I cannot recall who it was - Allergic Child? The Eczema Company?) about unexpected sources of allergens in medications, so I can't say I was entirely surprised that an asthma medication contained lactose/milk ingredients, but I was flabbergasted that it had been prescribed to my milk allergic daughter!
I called the office back and told them that I could not use this medication and asked if they could find another one that did not contain lactose or any milk ingredients. They told me they found one, but when I went to pick it up, it was a version of Pulmicort that also had lactose, so I sat in the waiting room and they brought me a sample of a medication called Qvar to take home and try. The insert reads that it's for children ages 5 and up, and my daughter is only 4 years old, so my search is still underway for an appropriate medication.
(Update: I spoke with both a friend who is a respiratory therapist and my daughter's pediatrician, and they both agree that Qvar would be safe and effective, even for a 4-year-old.)
Back to the milk protein issue, though. Why would an allergist prescribe the Flovent Diskus to a milk allergic patient? I went to do some research, and though I have not spoken directly with the allergist about this, it might be because she was convinced that it was not a great risk. I must disagree, however. My entire reason for going on this medication, was to strengthen my daughter's lungs, just in case she were to come in contact with a trace of her anaphylaxis risks (like, hmm, milk!). It makes absolutely no sense to spin a dangerous "Wheel of Chance" every morning and every evening, with my daughter taking a puff of an inhaler filled with powder, laced with lactose, that just might possibly have enough milk protein (since the puffs are not uniform) to cause a reaction.
Here's a page from the American Academy of Allergy, Asthma & Immunology that I found on the subject:
http://www.aaaai.org/ask-the-expert/Lactose-in-asthma-inhalers.aspx
It's a long article, and at first it seems like they are downplaying the risks, but here is what I believe to be the pertinent part for those with severe milk allergies: (my yellow highlights are added for emphasis)
The allergist prescribed a combined treatment plan of Flovent, Xopenex HFA (rescue) and Veramyst (nasal spray for allergic rhinitis).
The only problem was, I opened the pharmacy bag with the Flovent Diskus box in it and right on the front of the package reads, "WITH LACTOSE"! Um, excuse me?! I open up the patient insert and it reads,
------------------------------ CONTRAINDICATIONS -----------------------...and further down...
•Primary treatment of status asthmaticus or acute episodes of asthma requiring intensive measures. (4)
•Severe hypersensitivity to milk proteins. (4)
5.6 Hypersensitivity Reactions, Including Anaphylaxis
Hypersensitivity reactions, including anaphylaxis, angioedema, urticaria, and bronchospasm, may occur after administration of FLOVENT DISKUS. There have been reports of anaphylactic reactions in patients with severe milk protein allergy; therefore, patients with severe milk protein allergy should not take FLOVENT DISKUS [see Contraindications (4)].
Now, the seed was planted in my brain to look out for this, because I had read a Facebook post from a fellow blogger (please forgive me, as I cannot recall who it was - Allergic Child? The Eczema Company?) about unexpected sources of allergens in medications, so I can't say I was entirely surprised that an asthma medication contained lactose/milk ingredients, but I was flabbergasted that it had been prescribed to my milk allergic daughter!
I called the office back and told them that I could not use this medication and asked if they could find another one that did not contain lactose or any milk ingredients. They told me they found one, but when I went to pick it up, it was a version of Pulmicort that also had lactose, so I sat in the waiting room and they brought me a sample of a medication called Qvar to take home and try. The insert reads that it's for children ages 5 and up, and my daughter is only 4 years old, so my search is still underway for an appropriate medication.
(Update: I spoke with both a friend who is a respiratory therapist and my daughter's pediatrician, and they both agree that Qvar would be safe and effective, even for a 4-year-old.)
Back to the milk protein issue, though. Why would an allergist prescribe the Flovent Diskus to a milk allergic patient? I went to do some research, and though I have not spoken directly with the allergist about this, it might be because she was convinced that it was not a great risk. I must disagree, however. My entire reason for going on this medication, was to strengthen my daughter's lungs, just in case she were to come in contact with a trace of her anaphylaxis risks (like, hmm, milk!). It makes absolutely no sense to spin a dangerous "Wheel of Chance" every morning and every evening, with my daughter taking a puff of an inhaler filled with powder, laced with lactose, that just might possibly have enough milk protein (since the puffs are not uniform) to cause a reaction.
Here's a page from the American Academy of Allergy, Asthma & Immunology that I found on the subject:
http://www.aaaai.org/ask-the-expert/Lactose-in-asthma-inhalers.aspx
It's a long article, and at first it seems like they are downplaying the risks, but here is what I believe to be the pertinent part for those with severe milk allergies: (my yellow highlights are added for emphasis)
Q: Some inhaled asthma medications (Pulmicort, Advair) contain small amounts of lactose and possibly small amounts of milk proteins. Is there a real danger here for milk-allergic patients, or does it seem to be more of a theoretical concern? Thank you very much.
...
For many years we had advised patients that "pharmaceutical grade" lactose was devoid of milk proteins. In retrospect, perhaps no one was looking because patients had not been reporting reactions. However, occasional reactions have been noted, for example in a severely milk-allergic asthmatic patient of the late Gail Shapiro, MD who used a dry powder inhaler containing lactose. Testing of various lactose-containing DPIs (Nowak-Wegrzyn et al JACI 2004) indeed disclosed presence of trace quantities of milk protein. The exact amount was not determined, but there is a notion that lot to lot variability exists. Additionally, the amount of lactose delivered varies by device (e.g., some routinely deliver more of the lactose carrier per inhalation). The package inserts of the DPIs are now typically commenting upon their containing milk protein (associated with the lactose carrier). The product insert I viewed online for the type mentioned here (Flexhaler) did mention milk protein in a parenthetical statement associated with "lactose". Of note, the allergic response would be directed to residual milk proteins (the lactose is derived from skim milk) and not to the milk sugar itself.
As with any food allergy, individuals may have a particular reaction threshold (for example, not everyone reacts to trace amounts). It is probably the case that the trace amount in the inhaler would not trigger a noticeable reaction for most with a milk allergy. However, it has been hypothesized that inhalation of a trace amount may be more likely to cause some reaction (e.g., the respiratory mucosal route having a more direct response and leading to asthma reactions) than if the same amount were eaten (affected by digestion).
We do not have a strong understanding of the extent of contamination in various lactose containing products. There is a study of a lactose containing soy formula where no milk-allergic children reacted and the investigators could not detect residual milk proteins (Fiocchi et al Pediatrics 2003).
As an aside, about 75% of children like the one described here tolerate a small amount of milk baked into a bakery product (e.g., cookies) even though they do not tolerate whole milk proteins (e.g., cheese, milk, yogurt) presumably because the bakery product has less protein and the heating in a airy environment further alters the allergens. Unfortunately, there is no easy way to know who may have this level of tolerance (no accurate skin or serum tests) and we have seen children have anaphylaxis to milk in baked goods.
Though this child described may qualify as one unlikely to react to the trace (if any) residual milk protein in the DPI (basing this assumption on the observation that he tolerated milk in baked goods), and certainly risk/benefit plays a part in decision-making, it seems reasonable to use an equally effective treatment without this additional concern. I am not aware of a DPI that has lactose and has been proven NOT to have potential milk contamination.
Scott H. Sicherer, MD
Associate Professor of Pediatrics
Jaffe Food Allergy Institute
Mount Sinai School of Medicine
Now, I must add that the decision to completely avoid lactose-containing asthma medications is based on my daughter's specific level of milk allergy. She has a history of reactions to baked milk, so she's not one of those with a "mild milk allergy". I understand that her anaphylaxis risk lies in the milk protein and not in the lactose, but they cannot guarantee me that there will not be traces and it would be too great a risk for her to possibly inhale a trace of one of her top allergens straight into her lungs. The thought of it makes me dizzy.
Sometimes, I think they don't pay as much attention, because it's a milk protein. Imagine if a doctor prescribed an asthma inhaler that doesn't contain peanuts, but is made with an ingredient that just might contain trace amounts of peanut dust/protein. Would they better understand my apprehension, then? Would they see why I don't want my daughter taking her chances morning and night, breathing that in?
The bottom line is that you need to be ever-vigilant, even when something is prescribed to you by a physician. Read every label on everything...check, check, and check, again. We have to stay on top of things, because doctors are so busy these days and are many seem to be on auto-pilot, prescribing the same medications day-in, and day-out, without deep thought put into the fine details of the patient's history. We are the ones who know our children's history best.
As always, I share this information to help you in making your own decisions, but hey, don't even trust me! You will always have to do your own research and look into yours/your child's specific medical needs and consult with a physician and use every resource you can gather to hopefully come up with just the right plan to keep everyone healthy and happy. :)
Edited to add: Here is a story shared on Allergic Living's Facebook page, about peanut oil in ear drops.
Edited to add: Here is a story shared on Allergic Living's Facebook page, about peanut oil in ear drops.
Wednesday, December 12, 2012
3D Gingerbread House Cookie Cutter by Good Cook
I am so excited about this cookie cutter I found at the grocery store, yesterday! It's the 3D Gingerbread Cookie Cutter by Good Cook. It cuts out cookie pieces that can be assembled into miniature gingerbread houses. :)
I have been seeing all these posts about gingerbread houses, but I've been...
(Updated to add: The assembled houses end up being a little over 2" tall and about 2" deep and 1.5" wide.)
I had to tweak the recipe on the back, of course, even down to the spices. My daughter tested negative to cinnamon, but it seems to make her sneezy, sometimes. I decided to make them with a lot of vanilla powder, instead. (You can get vanilla powder at Whole Foods, but we got ours from Authentic Foods, when we ordered our GF flour. 1/4 tsp. vanilla powder = 1 tsp. vanilla extract)
Here is my allergy-friendly tweaked recipe for a half batch: (It made enough dough for 4 mini-houses and two big fish-shaped cookies (per my daughter's request - ha!)
- trying to think of how I'm going to cut the right size "walls"...
- trying to find the right "icing/cement" that is egg-free, yet strong enough to hold up the large house walls...
- trying to think of safe candy for decorating...(I have other foods that have priority for trialing ahead of candy, etc.)
(Updated to add: The assembled houses end up being a little over 2" tall and about 2" deep and 1.5" wide.)
I had to tweak the recipe on the back, of course, even down to the spices. My daughter tested negative to cinnamon, but it seems to make her sneezy, sometimes. I decided to make them with a lot of vanilla powder, instead. (You can get vanilla powder at Whole Foods, but we got ours from Authentic Foods, when we ordered our GF flour. 1/4 tsp. vanilla powder = 1 tsp. vanilla extract)
Here is my allergy-friendly tweaked recipe for a half batch: (It made enough dough for 4 mini-houses and two big fish-shaped cookies (per my daughter's request - ha!)
Gluten-Free/Wheat-Free/Egg-Free/Milk-Free/Nut-Free Not-Quite-"Ginger"bread House Cookie Recipe
- 1/3 c. light brown sugar (Domino brand is made with pure sugar, no added caramel color...)
- 1/3 c. brown rice syrup (Lundberg's is gluten-free)...I did not have molasses on hand...
- 1 tsp. vanilla powder (or 1/4 tsp. vanilla extract, though I'm not sure how the change would affect it.)
- 1/2 c. Spectrum shortening
- 1 tsp. baking soda
- 3/4 tsp. Ener-G egg replacer mixed with 1 T. hot water (makes 1/2 an "egg")
- 1/4 tsp. salt
- 2 c. GF flour mix (I used Authentic Flour GF Classical Blend)
I am not, nor have ever claimed to be a master chef, and once again, I made a boo-boo when making this recipe, but it worked out, so I'm writing down what I actually did when making these cookies and not what I was *supposed* to do. The cookies tasted good, to me, though... :)
- Preheat the oven to 325°F.
- In a medium saucepan, combine sugar, brown rice syrup, vanilla powder and baking soda. (See, I was supposed to bring that all to a boil, THEN add the baking soda. I added it all at the same time, but it seemed to work out just fine. Feel free to follow the directions on the back of the cookie cutter, of course!)
- Remove from heat and stir in Spectrum, a little bit at a time, to thoroughly mix it in.
- Add in the egg replacer and salt.
- Pour the mixture into a mixing bowl and slowly add in the gluten-free flour, stirring to combine.
- (The instructions say to knead until no longer sticky, but I found I almost had too much flour, so I don't think that will be an issue.) Knead the dough, and split into two balls.
- Place the dough between two pieces of parchment paper and roll it out to 1/8"-inch thick. (I think I made mine too thin and that's why I ended up with extra dough for the "fish cookies"...)
- Place house pieces on a cookie sheet lined with parchment paper and bake until edges are slightly browned, which is approximately 10 minutes. Completely cool before decorating.
Cut... |
Bake... |
Assemble & Decorate! |
Labels:
cookie,
egg-free,
gluten-free,
holiday,
Milk-Free,
nut-free,
recipes,
Wheat-Free
Friday, December 7, 2012
Coconut Trial - Follow Up
As I mentioned in my original post, I feel I need to explain a little more of the situation, because some expressed concern over the fact that I did this food trial at home. I know this is my fault, because I didn't fully explain the back-story, and somehow was assuming that (1) you could all read my mind (silly me!) and (2) you had been following my blog from the beginning. I apologize for that, because I should know better and new readers (hopefully) come along, every day. I was caught up in the excitement of having a new food available for my daughter and wanted to share that news, and forgot about the greater scope of things, for a moment. For that I am sorry, but I am here to fill in the gaps. It is also my fault, because I wrote:
So, after having the allergist tell me, again, at my daughter's 4-year appointment, to go ahead and try coconut or sesame, at home (which I still find surprising, but OK!), I decided to try coconut.There's me saying, right there, that even I think I should not be doing this trial at home! I left out so much of the story, and it wasn't until I saw my post through someone else's eyes that I realized that. The part I was surprised about, mostly, was that she wanted me to test sesame at home, because her blood test value was 15.5, which was a little too high for my comfort level. Here is some of the information that I left out of the story, from the decision-making process:
- Please note, this was a food trial and not a food challenge. What's the difference? Well, to me, a food trial is when you try a new food, that you've never eaten before, that you have no real expectation of an anaphylactic reaction. (The most I expected was a delayed eczema rash, which is why I was avoiding quite a few of these foods, all along, in the first place.) A food challenge is when you have a documented food allergy, say a history of anaphylactic reactions, either with or without skin/blood test confirmation, and you are seeking to challenge that allergy with the food, to see if the allergy still exists. Now, I understand that a food challenge is also done when you have just a blood test result and you want to add the confirmation of the oral food challenge to bring the 2 pieces together to form a true food allergy diagnosis. However, usually someone would have tested for the food item based upon an initial suspicion, based upon an observed past reaction. I made the mistake (yes, I will have yet another post spinning off from this, where I now feel that some of the blood testing I did was a mistake) of testing foods that I had no need to be testing. I tested foods my daughter had never eaten, and I had no reason to suspect an anaphylactic reaction. So, I really should not even have a blood test value for coconut in my hands.
- However, given that I did have a blood test value for coconut, I compared it against the thresholds for the likelihood of a true allergy. Her value was 5.89 and the cutoff for egg is 7, 14 for peanut and 15 for milk. Given that my daughter's confirmed allergies, for which we've been to the ER, have values of 28 and 50+, a value of 5.89 did not seem that high. Lately, I have been dealing with excessive fears, and have been working on overcoming them. I feel I have become too restrictive in limiting her diet. I believe that I am absolutely appropriate with the level of vigilance I have around her peanut, egg, milk, flax and mustard allergies, because I have seen their effects (or have state-of-the-art component testing results for her peanut allergy), but for those with low test values, I am finding they are not anaphylaxis risks, and I need to loosen up on those, because she is restricted enough, as it is.
- Also, a research study showed "there is no evidence of increased coconut allergy in children allergic to tree nuts or peanuts."
- This is a paraphrasing of a conversation I had with the allergist:
- Me: I want to trial coconut, oats, sesame...
- Allergist: Looking at her blood test values, I think you can do these, safely, at home.
- Me: Are you sure? That makes me nervous. I mean, the coconut and oats don't, but what about sesame? Don't you think 15.5 is a little high?
- Allergist: This is why we don't like for people to test a wide assortment of foods [I had tested these with another allergist], because you can test a long list of foods and get positive results that don't mean anything. You could have a moderately positive value and eat the food just fine.
- Me: Yes, but conversely, you could have a low test value and still have a reaction.
- Allergist: True, but then you're never going to know with any food and the truth is you are just going to have to try new foods with her some day, that is just the way it is, and if you want to trial every single food, here in the office, you will be in here every day. I think the risk is low, but if for some reason something happens, you know what to do. You know the treatment protocol, how to administer epinephrine, you are prepared to deal with it.
- At first, I thought that was pretty crazy, but after I thought about it some more, I figured she was right. I am on my own on a daily basis. I cannot run down to the allergist's office every time I want to try a new food. For example, I wanted to try cauliflower. Was I supposed to run out and get a blood test, first? No, I just had to give it a try. I tried broccoli, first, and it gave her an eczema flare, later that night. Trial and error. I am not new to this and need to stop worrying like this is the great unknown. Not every food is as volatile as a peanut. These foods (though I will probably still ask to do sesame in her office - it's a seed and the value is over 15) are not high risk and I am just as prepared to deal with the fallout as the doctor's office. I have 5 EpiPens in this house, antihistamines, asthma medications, etc. I am down the street from Fire/Police/EMS. I also truly was not expecting a major reaction, though my irrational nerves sure like to shake as if it was a possibility. The rational part of me knew this was a safe and reasonable trial, otherwise I would not have been proceeding.
- I think I just got so used to dealing with peanuts, eggs, milk, etc., and I lost sight of the fact that not every new food is dangerous. Even though I know full well that any person can have an anaphylactic allergy to any food, even rice, I don't need to start out with the expectation that every new food is a high anaphylaxis risk. I need to be prepared for reactions, of course, at all times, but I still need to keep introducing foods, otherwise her nutritional options will remain very limited.
- So, I just wanted to explain that a lot of thought, analysis, research and consultation went into this decision and this was not a "food challenge" of an existing food allergy done at home, which should never be attempted. If your child has a peanut allergy, for example, don't try giving them a tiny piece of peanut to "see if they still have a peanut allergy". This scenario was nothing like that and I apologize if there was any confusion. If you have any questions or concerns, consult a board certified allergist.
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