Monday, March 30, 2015

Safe for Us Homemade Easter Treats

What is Safe for Us?

James is allergic to tree nuts, peanuts, wheat, soy. He can eat soy lecithin and soybean oil. He has oral allergy syndrome (OAS) to tomatoes and melon. He avoids legumes.

I avoid dairy, as I've recently discovered it affects my sinuses.


When I mention a brand, it is because I am comfortable with the allergen policy and with using that brand for my family. It is not an endorsement or a suggestion that you use the same brand without doing your own research. Everyone's allergies and comfort levels vary. That said, I have no sponsors and all my opinions are flatly my own. 

Molded Chocolate Eggs

Made from Chocoley Bada Bing Bada Boom Modeling Chocolate

Free of: peanuts, tree nuts, wheat/gluten, eggs, sesame, fish, crustaceans

Contains: Soy lecithin and dairy

You can find the allergen statement here.

I have one failed attempt at making a chocolate bunny when James was a toddler (it bloomed). Darren was interested in trying to make chocolates again and, while I was a competent aide, he was definitely the chocolatier.

Since I had a bad experience, we chose the chocolate which required no tempering. We did order samples of the gourmet couverture chocolate (free with order) to sample. Darren followed the directions on their website and, easily enough, we had chocolate eggs.

Sunbutter Eggs

Chocoley Version: Same allergy information as above

Enjoy Life Version: Free from wheat, dairy, tree nuts, peanuts, eggs, fish, and shellfish. 

Cross Contamination: Sunbutter is made on the same equipment as soy.

I love(d) peanut butter cups. And since I avoid dairy, we decided to temper Enjoy Life chocolate chips so I could have my own version. We also made a chocoley version for the dairy eaters.

We used the following method to temper the chips:

1. Heat the chips in a double boiler to 108°, stirring constantly.
2. Remove from heat and add a small handful of chips as seed crystals.
3. Continue to stir until the temperature reaches 88°.

We used the following recipe for the filling:

1/2 c Sunbutter
2 T softened Butter (Spectrum Palm Shortening for dairy free)
1/4 c + 2 T confectionery sugar
1/4 tsp salt

We were actually out of confectionery sugar and ground our own using regular sugar and cornstarch. You may need to adjust the ratios a little to get the right consistency because our sugar was coarser than usual.

We made 20 cups and used 10 ounces of chocolate for the bottom and 15 ounces for the tops. There was leftovers of the Sunbutter filling and I'm already thinking about thinning it out and using it for a chocolate Sunbutter Ice Cream (Yum).

 The Enjoy Life were definitely a darker chocolate (not that I mind at all). Both batches set up really well.

A No Fuss, Easy Treat

Free of: Peanuts, tree nuts, wheat/gluten, fish, shellfish

Cross Contamination: Soy

If you are a baker, than these are for you. I made them for James to take to a party. More confessions, it's Betty Crocker Gluten Free cake mix. The frosting (and reason why we had no confectionery sugar) is a simple buttercream:

1/3 c butter, softened
1 lb confectionery sugar
1 tsp vanilla

You may notice the yellow looks more crisp than the green . They are made with different tips but, I added milk to the green frosting, but it was hot here and so, the frosting was slightly too soft. Since I live in a warm area, I've found it works better to leave the milk out altogether and add it if needed later.

And Peeps are large decorations that cover a variety of frosting woes.

Friday, March 27, 2015

Chronic Hives

James's First Atopic Condition

As I mentioned here, James's first atopic condition was not food allergies at all, but chronic idiopathic urticaria (CU), or chronic hives, the cause was unknown. He was three at the time, and after a round of prednisone, the hives were still not well controlled. I can still remember taking him to his swim lesson, warning the instructor that he was: 1) in a very bad mood from the prednisone and 2) he may get hives during the lesson and not to worry about it. You could watch them spread over his whole body throughout the lesson and I was told, by a teenaged swim instructor, that she "really didn't think this was something not to worry about." 

After six weeks of the hives being fairly uncontrolled, we were sent to an allergist, who told me there was really nothing he could do. James would likely outgrow it. He told me to give him Claritin two times a day, twice the amount recommended for his age. And was not happy when I made him write it on a prescription pad. I was fairly certain James would overdose and we would end up in the emergency department with only my, "But the allergist told us to," as an excuse. As it turned out, he was on this dosage for three years. The only ill effect (which we didn't realize until he was off the medicine) was bedwetting. Every 6 months we would slowly take him off the medicines, only to have the hives return. 

Even when he outgrew the chronic urticaria, he still was prone to hives for other reasons: sap on his hands (making tree climbing a bummer), wet grass (I am guessing the pollen would stick to his skin, but it is only a guess), and hot water. He seemed to be outgrowing this last cause, however, this past couple of weeks it hives have recurred and so has the detective work. We are currently hoping for a virus.

What I've learned about Hives

As any parent whose child is James's age will tell you, the internet has changed radically the amount of information available for those suffering from a chronic illness (or, I would imagine any illness). When James first suffered from CU, there was a yahoo group, but valid information was sparse and access to research practically non-existent.

To begin with, 20% of people will suffer from hives in their life, and there's a variety of causes. People tend to assume an allergy (like food) when they see hives, but this is often not the case. As I mentioned earlier, viruses can cause hives (and it is, in my house, a hoped for cause). Allergic hives generally (not always) appear quickly from their trigger and so can be clearly identified.

There are various causes for chronic hives (beyond idiopathic). These include:
  • Pressure/Scratching (dermographism)
  • Cold urticaria - caused by a low temperatures
  • Cholinergic urticaria - caused by a higher body temperature, from hot water, anxiety, exercise, even sweating
  • Solar urticaria - caused by exposure to the sun
  • And rarely, aquagenic urticaria, hives caused by water or any temperature. This is skin only. People who have this can consume water without any issue.
There are also more treatments. James is currently taking not only two adult Allegras but 2 Zantacs a day (Allegra is known as an H1 antihistamine and Zantac is known as an H2). He worked his way up until the hives were (mostly) controlled. He still has very minor breakthrough hives directly before he is to take his next dose. If someone is not controlled with these medicines, Zolair has begun to be used in some cases.

Link to Other Diseases

There has also been research linking CU to other autoimmune diseases. Thyroid disease is the most common autoimmune problem linked to CU, in some studies up to 40%. It's not something I worry too much for James, as he has no symptoms that are concerning. Somewhat more concerning is the link to celiac. James tests positive in his RAST to wheat and negative on his skin test. His current allergist feels his symptoms are more indicative of celiac than an allergy. However, gluten has to be in your diet for a celiac test. So, until he is cleared for a wheat challenge (we will re-visit the idea of a challenge in Oct after his 1 year blood test with Dr. Li), this will be an unanswerable question.

Emotional Toll

I have a true visceral response to hives. The way that James feels, and reacts, to any of his food allergens is how I feel about hives. It's not logical or reasonable. The hives can be controlled well with medications. James is not bothered by them, except if I make a fuss. And, he scratches his skin off. But, I remember. I remember the stares as the hives covered him and I did nothing. The judgement. The sitting with him in my lap with a phone in my hand trying to decide how bad things had to get before it became an 9-1-1 type emergency.

I'm an old pro at hives now. And all of it bothers me a lot less, except for the pit of my stomach that remembers. And does not want to go back.

Monday, March 23, 2015

What We Did Wrong Our First Visit with Dr Li

A Red Eye Flight

In an effort to save money, I booked a red eye from southern California to New York. We had a history of taking red eyes and James has always slept through them. What I didn't factor in was his size. As a small child, he could easily cuddle up in the airplane seat and sleep. As  a young man my height, airline seats are no longer cuddle-able. We were all awake the entire flight, landed at 6 am, and not able to check in until the afternoon,

About that hotel ...

We took the train and then subway into the city. Our plan was to drop off our bags and then do some sightseeing. Only, our hotel appeared not to exist. We had booked through JetBlue (flight and hotel) and we could not find the hotel address. We asked on the street by the name and got directed many blocks in the wrong direction, returned, asked again, and got some helpful suggestions, but no one had any real idea. Finally, the mailman delivered and we showed him the address. No such address.

So, Darren got on the phone with JetBlue and we decided to walk to NintendoWorld so at least we could get off the street for a while. After a couple hours on the phone (literally), they directed us back to the same spot, based on photos on their website. Let it be said, there was a lot of back and forth. JetBlue contracts out to outside companies for their hotel packages. They got a hold of someone at the "hotel" and it was more or less a (nasty looking) Air BNB. And, we would need to take a taxi to get the keys. I found another hotel through and JetBlue refunded us our money plus a $25 ticket voucher each. We came out ahead except for the entire day spent deal with the issue.

James was amazingly behaved throughout. 

So the morning of our appointment

We were all exhausted and not the slightest bit relaxed. All we could really do is be passive receivers of information. Instead of focusing on the information at hand, we were focusing on holding it together, making sure James was holding it together, and if we were ever going to get some down time to enjoy ourselves.

I hadn't written down questions I had (something I usually do when visiting doctors) because I had been waiting to see Dr.Li for months. I assumed I would have them on instant recall when I saw her. Instead, I did my best to keep up.

A few things we did right

I spent a lot of time before visiting preparing James's test results and a medical history. I didn't have to remember what age he was when he had various reactions or tests because it was all written down. Bullet points worked well for me, organized by year, but James is 12 and so the amount of information to be condensed needs to be presented differently than maybe a 2 year old. 

We came prepared to wait in the waiting room. Because I was so tired, I lost track of time, both how long we waited and how long our appointment was. My husband said our appointment was about 90 minutes. I know we waited for some time in the waiting room. We brought stuff to do. Because James is older and because I knew people would becoming who had various allergies, we didn't eat anything. This might be harder with younger kids.

Lastly, we had an open mind. Dr. Li wanted to do acupuncture on James, which none of us were expecting. He was not interested,but was willing to let her put in one needle if she agreed to stop if he asked. He ended up being fine, except that it was hard to sit still.

Why our mistakes didn't matter

We have a monthly phone consult with Dr. Li. I am, still, always jotting down notes of questions to ask, but I have a chance to clarify things once an month. And there are rarely things that can't wait until that appointment. In those cases, I can e-mail and get a response quickly.

The Best Take Away

We hadn't traveled much since James was diagnosed, and then mostly to see my (amazing) family, who always did tons of prep before we came, or to camp. Traveling and staying in a hotel was empowering. I cooked full breakfasts and dinners on a hot plate, with no overhead fan, without setting off the fire alarm and causing the entire hotel to be evacuated. We flew, took trains, subways, and walked through a city where roasted nuts appeared to be on every corner (places still do this?!) and had no issues. Traveling was different, but it was possible. And next time, maybe we'll have fun.

Friday, March 20, 2015

Why Traditional Chinese Medicine for Food Allergy Treatment

Why seek treatment at all

For a year after James's diagnosis, we followed the allergist's advice, which was to avoid his allergens, carry an epi-pen and come back in a year for a food challenge. When he failed a food challenge at the first dose, requiring epinephrine, I began to go into research overdrive. And, I was convinced that he should seek treatment.

James, on the other hand, wanted no part of it. And, age 11 at the time, I respected that he needed to want treatment. I won't say I dropped it, but we weren't going to enroll him in something against his wishes.

June 30, 2014 

James had a two system reaction to a new food (it turned out to be honeydew melon, although it was diagnosed by Urgent Care as mango - always seek treatment from a Board Certified Allergist!). We did not have an action plan from the first allergist we saw. However, having done tons of research by this point, I knew enough that James need to use an epi-pen, which he administered himself. Being diagnosed with a new food (ultimately two, honeydew and tomatoes, although OAS, rarely anaphylactic, 1-2%. James tends to get GI symptoms in addition to throat tightness so we avoid raw forms strictly), convinced James that he was ready to seek treatment. At this point, it took a few weeks and a therapy visit for him to convince me, because I did not want him to decide under the stress of a reaction.

Why Traditional Chinese Medicine (and Dr. Li)

James has a complex allergic history

July 4th, 2004, 3 days after he turned 3, we brought James in after watching fireworks and soon he was covered in head to toe hives the size of my husband's palm. They lasted (controlled by medication) for the next 3 years. This condition is know as chronic idiopathic urticaria (chronic hives, cause unknown). Even when he outgrew it, he still does occasionally get hives from overheating or from the wrong environmental allergen.

The goal of TCM is to heal the immune system. Although there is no correlation between having chronic urticaria and food allergies, in one person, it indicates to me a  basic issue with his immune system. It's the underlying healing that I am focused on.

James does not want to ingest his allergens

Ultimately, that is the goal. However, with OIT, you ingest them while still allergic. There seems to be debate about how common reactions are during OIT. It is generally agreed that most reactions are not severe. For the purpose of this post, I'm going to use this quote: "Wasserman (a private OIT doctor) says that about 15 percent of his patients drop out of OIT for reasons including severe reactions; stomachaches or vomiting hours after dosing; an aversion to the foods to which they are allergic; and anxiety." 

Whatever the rate and whomever you believe, I believe James would have been one of the percentage to drop out, for the anxiety if not the actual reactions. His journey with TCM has not been completely reaction free (GI upset and shortness of breath) but he is able to both tolerate it and work past it, which I don't think he could have done eating his allergens.

Dr. Li

Dr. Li is the only TCM practitioner/researcher/western Dr. in the U.S. that is researching the effects of TCM on allergic conditions. In addition, all of her herbs are tested for safety, both by a WHO lab in China and her lab at Mt. Sinai. You quite simply won't find another Dr. like her.

For more information on TCM and Dr. Li, please read Henry Ehrlich's book (affiliate link)

And more

While there are many more differences between the multiple treatment options, our decision boiled down to those two main factors. The following chart includes some of the factors I considered. You might read the evidence and come to entirely different conclusions, so please understand the chart is based on my opinion, not meant to replace your own research!