Wednesday, October 27, 2010

Coconut & My First Public Complaint

So...one question I had with the new coconut allergy was if palm oil is included in that, and how is coconut oil processed & is it safe? I didn't find any answers to those questions online, mostly because people that have a coconut allergy have a topical allergy. Which never occurred to me. Obviously she hasn't had any skin reactions, so should I not worry or is it one of those things you want to avoid just so she doesn't have constant exposure to it? Because honestly, it is in EVERYTHING. Soaps, toothpaste, lotions, etc. Here is a list of coconut product derivatives:

1,2 Octanediol
2 Phenoxyethanol
Ammonium Lauryl Sulphate
Capryl Glycol
Caprylic Acid
Caprylic Glycol
Caprylic/Capric
Caprylyl Glycol
Ceteareth-20
Cetearyl Alcohol
Cetearyl Glucoside
Ceteth-20 Phosphate
Cetyl Alcohol
Cetyl Esters
Cocamide MEA
Cocamidopropyl Betaine
Cococaprylate/Caprate
Cocomide DEA
Coconut Oil
Disodium Cocamphodiprop
Emusifying Wax
Glyceryl Caprylate
Hexyl Laurate
Isopropyl Myristate
Laureth-3
Olefin Sulfonate
Organic Sodium Cocoate
PEG - 7 Glyceryl Cocoate
PEG -100
Phenoxyethanol
Polysorbate 20
Sodium Cocoate
Sodium Cocoyl Isethionate
Sucrose Stearate
Sodium Laureth Sulfate
Sodium Lauroyl Sarcosinat
Sodium Lauryl Sulfate
Sodium Stearate
Sorbitan Stearate
Stearyl Alcohol
Vegetable Cetearyl Glucos
Vegetable Glycerine

Yeah, good luck memorizing that one! I looked at all the soaps, shampoos, toothpastes, etc. that we use and they ALL have some sort of coconut derivative! Basically you have to find a list of products that is known to NOT have coconut in it and go with that. So I'll call the allergist with my above questions. Sheesh, I sure hope I don't have to cut out topicals.

My other item is I am going to have to post a complaint in our neighborhood newsletter. Somebody has been smearing some unknown substance on our jungle gyms at our neighborhood park. From what I can tell, it is chocolate icing...but a lot of icing has eggs. What if she touched it and had a severe reaction? I also know people in our neighborhood put out whole peanuts for the wildlife. Which means animals drag peanut shells all over the place. Luckily we don't have to worry about that but I have a friend who is moving into our neighborhood who does! People just need to be more aware of the consequences to actions like this. Unfortunately, there is still a population out there that thinks this food allergy stuff is all bogus and we are neurotic mothers getting our panties in a twist over nothing. Maybe I'll send them the hospital bill if we ever have to go to the ER! :-)

Catch up!

Holy Moly! I've never been able to keep a journal for more than a week or two in my entire life. Apparently that applies to blogs as well. But I'm going to keep trying!

What has happened in the past several months?

The Sniffles: The allergist was very interested in her constant sniffling. We had to endure two different nasal swabs, a sinus x-ray, and 3 different medications. The third medication did the trick and no more sniffles - although it REALLY affected her behavior so fingers crossed we don't have to go through that again! Who knows what the cause was, but we'll keep an eye on it.

Food changes: As I am learning, food allergies are an ever changing and evolving entity as you discover what does and doesn't work. We noticed Bethany's behavior was still being affected by something but we weren't sure what. One theory I had was she was sensitive to annatto - which is used as a food coloring but is derived from a seed. With her watermelon weird thing and the questionable latex issues, we went back in July for more testing. What we learned: watermelon is ok. Annatto is ok. Latex is ok. Cumin is not. So not only seeds but spices that are made from seeds are out. But what is still affecting her behavior?

Food trials: we successfully added peanuts back into her diet. The first day I gave her peanut butter she wanted to put it on everything! We also successfully got wheat back in her diet again. That is a huge relief: things like mac & cheese, chicken nuggets, etc. were added back in. I am still holding off on annatto because I'm not 100% convinced but we'll add it back in eventually. We are currently adding green peas back in her diet (she is SO excited to eat them again, atta girl!) and so far, so good. It looks like all of the things in the "low" category may be just fine. Fingers crossed.

There were still some behavior issues - usually after snack products like chips or popcorn - so on a whim I tried eliminating seed oils. Within a couple of days her behavior improved. So...even though the doc says they should be fine, I'm going without for now.

We had another big reaction to a dessert I made the other night - fresh peach pie with local peaches with coconut ice cream (since I am dairy intolerant). Big reaction for her - no epi pen needed, but it was out and ready to go! The Benadryl luckily did the trick. But back we go for more testing. It was the coconut (not the peaches, cinnamon, or nutmeg) - HUGE reaction to coconut and coconut milk!

I also asked about the seed oils, and the doctor said if it is a major company, it should be ok because they have to pasteurize the giant vats of oil. If it's a more "natural" product, it may have expeller pressed or cold-pressed seed oils which means the protein allergen is still in the oil. I can't believe the learning curve for all of this! So for now we will be trying one product at a time to see if it elicits any behavior issues.

Looking back on my old posts, I do have to say we've come a long way! Bethany is more likely to try new things than she ever has in the past - although it's taking me a while to catch up to this idea...I still assume anything new on her plate will constitute a global meltdown. She is much more likely to eat what I put in front of her instead of having me cajole her into eating through the entire meal. Her behavior is also much more predictable and what you would expect from her age. Life seems much more "normal" with her now!

She also started pre-K in September. I take a snack for her everyday instead of her eating what is supplied. Bless her heart - even if the teacher offers her what the other kids are having, like apples, Bethany tells her she has to eat HER snack because the other things might have eggs in them. :-) Also, the class moms know to call me if there is going to be any sort of special snack for birthdays or holidays. I want her to have as normal as a childhood as possible, and I can just see it now, "Mom! All the kids had cupcakes and I had to eat carrots!"

Again, I am so lucky that she is not as sensitive to some of these foods as other kids are that you hear about in the news and such. It means she can be around these other foods without too much fear of a major reaction.

That's all my brain can regurgitate for now from the past few months. I'm off to see if I can figure out how to make "sticky" posts so I can make one that keeps her allergy list current...