Soy Challenge Success!

As I have posted everywhere now (a wee bit excited and relieved), James passed his recent soy challenge. The challenge was a different from his previous one, not only in the fact that it didn't end with epinephrine, steroids, and fear.

Disclaimer: This is a description of one experience with a food challenge. It is not meant to be a guide on how food challenges should be run, medical advice, or anything besides a personal narrative.

Skin Test First

As I've mentioned previously, getting James to the point of no antihistamines for a skin test/food challenge has been difficult. So, we combined the skin test and food challenge into one day. I wanted to get all his skin testing done but the allergist (not James's usual allergist, more on that later) didn't want to stress him out too keep things fairly calm. So, we settled on three tests: soy, wheat, and peanut.

Have you ever seen a more perfect SPT?

I've forgotten which the nurse said was wheat vs soy, but no matter. The histamine reacted, the rest did not, and that was perfect.

A Group Challenge

I knew ahead of time that James would be having a group challenge but I wasn't entirely sure what that would entail, other than there would be other people. My primary concern was if people would be challenging other foods that he is allergic to. My secondary concern was snacks; they had told us to bring snacks but I didn't want to bring something that would be a problem, allergy-wise, for someone else.

What I didn't know until we got there was that James's usual allergist would not be preforming the challenge. I did a fair amount of acting like it was no big deal (and it turned out not to be because the allergist running the challenge was excellent), James likes and trusts his allergist, not allergist's in general. I was concerned he would balk, but he did great (the entire time).

I am not sure how many offices do group challenges. Our experience was in Kaiser San Diego. I asked about the rational (mostly to make conversation because we were there for almost four hours). There is a long wait list (no kidding!). When they have one on one challenges, the primary person preforming the challenge is a nurse (this was our previous experience) and you only see the allergist if there is a problem or at the end. Kaiser is actually shorter on nurses than allergist. The allergist is able to monitor up to four patients at a time whereas the nurse can only monitor one. So, they can move the list faster by having an allergist do four challenges at once. 

I actually liked it better, because the allergist was in the room the entire time, mostly working on paperwork, but there. The allergist did say that they only schedule group challenges for the patients they are most confident will pass.

General Procedures

I believe James drank a total of eight ounces of soy milk, divided into seven different doses. He started with a drop on the tongue and ended with 4 ounces in a cup. There were 15 minutes in between each dose and an hour waiting at the end. He was allowed to drink Gatorade in between doses. Although he complained of the taste, he drank the doses quickly. Except for complaining that the soy milk was disgusting enough to make him want to vomit (quickly adding it was an opinion not a physical reaction), the challenge literally went that smoothly with no hiccups or concerning signs at all. 

Epi-Pen Information

Since we were there, I decided to ask the allergist about Kaiser's Epi-Pen policies. This is from casual conversation and not a "written in stone" policy. According to the allergist, Kaiser Southern California will not be switching to the generic Epi-Pen this year but will be staying with Mylan brand (depending on your plan, of course, but the allergist's first choice will be to write an Epi-Pen prescription). Kaiser is "not really" a commercial plan and the allergists will not be filling out vouchers for Auvi-Q. I did not push this at all, because James is comfortable with the Epi-Pen, having used it before, and I am not looking to switch. If I were, I would definitely question this decision.

Next Steps

We were advised to have James keep soy in his diet 2-4 times a week. I can tell you from his complete disgust during the challenge he won't be consuming soy milk. I'm going to try both tofu and edamame as two sources high in protein, hopefully he will like one or both of them.

James has a wheat challenge in a couple weeks, same allergist, same group challenge. I am hoping now that we have done this once, know the procedure, and he's passed, it will be emotionally easier. It will certainly taste better and so be easier in that respect. I was so proud of James, because he was (outwardly) so calm and composed about the entire challenge. It was not easy for me to stay calm so I can only imagine for him.

This weekend, he will be trying fresh tomato at home (he has OAS to it, but never a severe reaction). I am supposed to contact his allergist when he, presumably, passes. He passed! At that time, I will ask to be put on the wait list for peanut, as well as ask about trying mango and watermelon at home.

The wait list is four to six months, and to be honest, I think we will be glad for the break and will try mango and watermelon at our leisure while waiting. Tree nuts would be the next step, but James is not ready to think about that at this point.

The long and winding road to a food challenge

I am aware it's been months since I have updated.

Sometimes, I nothing to say. Other days, I didn't know how to share, would I be able to convey the hope and the fear jumbled together. So, I said nothing. And focused on enjoying the moments.

Bringing you up to date:

We saw the allergist in December. Remember that James has always had low IgEs, despite his reactions. Nevertheless, for food, he only has three (barely) positive remaining: wheat 0.21, pistachio 0.18, and peanut 0.18. He also has four (barely) positive environmentals: Bermuda grass 0.28, Rye grass 0.28 (the grasses have always been his worst environmental), Russian thistle (aka tumbleweed) 0.24, and cockroach 0.14.

He has an oral food challenge scheduled for soy, then wheat two weeks later. He will have skin testing done at the soy challenge so we can inform ourselves before deciding on any other challenges.

We have successfully added legumes (except peanut and soy) to his diet.

I have permission to feed him raw tomato at home, but when he is not taking Allegra, so I plan to wait until after his soy challenge, when he will have stopped antihistamines.

He had three occasions of hives in six weeks. Dr Li adjusted his protocol and (knock on wood) he has not had any hives in four weeks.

In the near future:

As mentioned, we have a soy and wheat challenge scheduled. In order to proceed, he has to stop taking Allegra, have no hives, not be sick, and have a successful skin test. The skin test both needs to work (he has had one previously where nothing reacted, not even the histamine control, although he did complain about itchiness, so weird) and be negative.

All of them are somewhat of a concern, but right now I am feeling as confident as possible.

Additional wrinkles are that his first challenge will be a group challenge. I'm concerned if someone reacts, it will cause anxiety and make him feel he is reacting. A lesser concern is what to bring for snacks in a room where kids will be allergic, but I'm not sure to what. Feel free to comment with suggestions or hop on over to my FB page, where I'm also collecting ideas.

Is this it?

We traveled to New York last month for James's 20 month follow up with Dr. Li. I really have no new blood work results to report, because, on paper, his testing is perfect. His improvements, even from last July, when he had already made a huge number of gains, are incredible. With that in mind, my first query to Dr. Li was:

"Is this it?"

James's quality of life has improved so significantly since beginning treatment, combined with the difficulty of tapering his Allegra down further, made me think that perhaps we had reached the end point of his treatment - and I was ok with that.

Dr. Li felt he still could go farther.

Her first recommendation was to have him have a food challenge, still on Allegra, and at most half the normal dose for a food challenge, eating that amount regularly. One of the benefits of seeing Dr. Li each day was that I could relay this to James's local allergist and have a response while still in daily contact with Dr. Li. Many times I have wished I could get them both in the same room to hash things out - this was the next best thing.

James's local allergist did not outright say no, but definitely expressed concerns. His first concern was that if James was still taking Allegra, minor symptoms might be suppressed and any reaction might be more serious before noticed. To combat this, the allergist said we would have to admit James to the hospital for the challenge and have an IV put in.

The allergist's second concern was with EoE. I know this is a controversial subject. I am reporting his concerns, not adding commentary because I think the research is still out. He felt that OIT had an increased risk of EoE and not doing a full challenge was too similar to OIT. Challenging when we weren't sure that James's immune system was fully healed could put him at a higher risk.

So, ultimately, the ball was in my court. James's allergist was willing, but ... Dr. Li recommended it.

I asked Dr. Li if it was even possible for James to develop EoE; his blood work shows 0% eosinophils in his blood. She said that yes, he could. Eosinophils can be in tissue and not blood.

I will be honest, EoE terrifies me. James has had digestive problems in the past (and to some extent, continuing) and I don't want to tip the scales. It seems the ultimate jumping out of the frying pan into
the fire.

And so, we decided to wait.

Inadvertently, we seem to have started James's Allegra taper again. Last Tues, the pills got stuck in his throat and he threw them up. This Tues, he forgot to take them. Unless I hear otherwise, I'm going to drop his Tuesday dose since he's gone two weeks without it with seemingly little effects. October will be a year since we began the taper. My goal now is to be done by next October!

Back to Camp

I had really hoped to skip camp this year. I had every reason to believe that not only would it not be necessary, but we could even stretch our visits out to a year, avoiding the expensive summer season.

Life laughs.

In addition to his atopies, James has Tourette Syndrome. It was, comparatively,  minor by the time we saw Dr. Li and had been for some months.

Since James has been reducing his medications (both Allegra and melatonin), his tics have increased exponentially. At 10 years old, his tics were bad enough that he asked to be medicated. He tried but the side effects to the medication were intolerable. His tics have increased to that point, perhaps beyond.

Dr. Li asked about increasing both Allegra and melatonin. I explained my hesitation at increasing either, but particularly Allegra. We will not e able to do any food challenges if we can't remove him from Allegra. She concurred and we met in the middle. His Allegra will remain the same, his melatonin will be increased. She is making a custom herbal formula for him. Hopefully, he will see some improvement. She asked him to try acupuncture locally, which I am in the process of arranging.

And, we are going back to camp.

Last year, I was in the position of advocated for camp and Darren and James were more reluctant. This year, they are the enthusiastic ones and I am ... worn. Darren and I spent a day re-arranging travel plans. We have a family trip scheduled, also Back East, for the week following camp. Planes needed to be changed, hotels booked, logistics figured out. But, it is done.

What I'm doing differently this year:

1. A full kitchen, not a microwave, mini-fridge, cook in the bathroom combo. I couldn't face that again this year.

2. Gulp. A red eye flight. We couldn't find anything else (using airline points). Anyone want to wager that this will be my 'never again' point next year?

3. Not make any plans of tourist things to do. What we see is fine, but, I found last year, James needs rest after acupuncture. Often, by the time he had the energy to go out and see, it was night. Not that there isn't a lot to see at night!

Summary of Our In Person Appointment with Dr. Li

We returned to New York to see Dr. Li last week. Dr. Li and I had already discussed James's one year blood results during a phone consult. There is nothing like a face-to-face appointment though, so I was truly looking forward to seeing her.

Honestly, I had one hope of the appointment (being able to re-introduce legumes, which James's allergist felt were an intolerance, not an allergy) and James had another (reducing the dreaded cream). Dr. Li wisely followed James's lead and I will have to wait.

She started by checking his skin ("beautiful") and acupuncture. Upon returning, she took history and we discussed food challenges.

• She clarified that, although Kaiser records >0.35 as an allergy, she considers anything over 0.01 possibly still allergic. I am sure James's history of having severe reactions with low IgEs plays into this (in other words, this is specific to him and not a general statement of Dr. Li's thoughts).
• James asked to reduce to doing cream one time a day. She said this was fine, but that he should step down (one day a week), particularly as he is still stepping down from his Allegra.
• She asked James what food he would like to challenge first. He replied that he wanted wheat back, but that he thought he could pass soy. She said that when we were ready (off of Allegra, SPT from allergist), he could start with wheat.
• However, for each challenge he does, she wants to challenge only 1/5th of the amount that is usually used in the challenge. Then, she wants us to control how much returns into his diet, small amounts one day a week at first, stepping up a day a week, and then portion size. Her concern is he will feel sick from adding foods he has been avoiding into his diet and wants him to go slowly. He does tend towards GI problems. I will be discussing the smaller challenge with James's allergist.
• Dr. Li was most excited that James (on his own) had turned up the water heater and had not had hives. He used to have heat intolerance. In her words, "That shows true tolerance."

The biggest benefit of being in person was that Dr. Li was able to talk to James and let him guide the appointment. I always ask before any phone consult if he has anything he would like to add or ask, but the answer is always no. Being in person, her questions could be addressed directly to him. Dr. Li gives him flexibility, respect, and some control and he is more motivated to do what is required.

Where's the Easy Button?

Recently, I wrote how James had an accidental ingestion of soy. James's local allergist, Dr. L, had suggested both a soy and a wheat challenge last year, just prior to our first visit to Dr. Li. She requested we wait. At this seemingly successful tolerance, Dr. Li agreed that he could proceed with the soy challenge.

Not so fast, mom!

Dr. L, rightly, had lots of questions regarding James's ingestion. And two were particularly relevant to whether the challenge should go ahead or not in this case.

1. Any delayed reactions? Although I hadn't considered it at the time, James did complain the next day of shortness of breath, similar to (in his words) "when he has an OAS reaction." Since we were walking and in NYC, I chalked it up to humidity and pollen. 

Dr. L also did not seem concerned with this, but it did put the thought in the back of my mind.

2. What form of soy did he ingest? As it was soy flour, it turns out that this is not the most allergenic form of soy. Much like baked egg or milk, soy proteins change in a baked form from that of raw soy, as one would find in soy milk or tofu, which is used for a challenge.

So, while it was a good sign he had not reacted to the flour, it was not a clear ingestion either.

But wait! there's more (stumbling blocks)

Dr. L requested that James be weaned off his Allegra - and stay hive free - before undertaking any blood work even to see if he would be ready for a challenge (see information on OFC and CU here). Dr. Li, the day before, had specifically told me not to adjust James's Allegra schedule, until he had been hive free for six months. Then, she would work with us to wean him from his Allegra.

This is one of those cases - neither doctor is wrong, both have solid reasoning for their orders behind them, and if they were both in a room, I have no doubt they would discuss it and decide the best course of action. But they aren't. So, it's up to me to play a stressful game of telephone. And it's up to me to make the final call.

After talking it out with an amazing support system, I realized that our long term goal is health and healing. Ultimately, do we want to challenge foods, successfully? Of course, but we don't want to rush and possibly set back his current gains.

And so, we wait. Soy will still be there in 6 months, when hopefully, he is even healthier and hive free without antihistamines.

TCM Camp

For a week, we have made a hotel room our home - cooking in the bathroom, bruising our shins on the platform beds, and asking housekeeping always for more coffee. A month ago, when I told Darren that Dr. Li had asked that we come to New York for a week so James could participate in her yearly TCM camp, he was bit skeptical: "A week of acupuncture and a consult, couldn't we do that here?" But, always supportive, we went, and we are all glad we did.

Here's a peek into our week:

Day 1:

We called ahead to check if Dr. Li is running on time. Our appointment was at 11:00 am, we were told to arrive at 11:30, but still waited some in the waiting room. The waiting room is not very big and your hotel, or in our case lobby, as we hadn't checked in yet, will be more comfortable.

This ended up being our consult day (when they made the appointments initially, they weren't sure what day would be the consult. I think Dr. Li wanted the consult prior to beginning treatment this week). Having his improvements summarized was gratifying - no severe reactions since beginning in October (three severe reactions in the two years prior), one minor reaction since beginning (20+ prior). Those are for food allergy reactions, not for environmental. He still has hives 5 out of 7 days (cause is suspected to be environmental by our local allergist), unknown frequency prior because they were (are really) so common I did not track them until Dr. Li asked me to. James still is not reporting them to me reliably so that number is based on his estimate.

I should have had James's IgEs taken. This is not his one year point (that will be October) so I didn't (I'm quite the rule follower). That does not always work in my advantage. It was fine, but she did want to know (me too!).

James was not able to tolerate acupressure. He's very ticklish. So, he again had two needles, one in each of his arms, but found the leg needle painful so she removed it. Dr. Li applied acupressure to his leg, observed it was "jiggly", and asked what trauma he had had in his life. For those who have experienced toddler adoption following abandonment and/or orphanage care, you will know there was trauma. I don't understand acupuncture at all, and so that she can know from his skin sensitivity that he had trauma, was a little spooky (what is the saying? We fear what we don't understand).

Day 2:

A much faster day, James had acupuncture while we spoke to Dr. Li. We were told to make no changes and emphasize the positive things, such as his ability to handle things, a healing of the heart as well as the body.

James was exhausted when we got back to the hotel. I was going stir crazy.

Day 3:

Four needles, two in each arm for 15 minutes, very efficient.

We went out afterwards, to MOMA and then to Nintendo World, probably James's favorite New York place. He was exhausted though, a frequent theme after acupuncture. To my delight, there is a Farmer's Market in front of Rockefeller Center (Wed-Fri). If, like us, you don't eat our much, and like us, your hotel only had a mini-fridge, by this point you might be getting dangerously low on fresh fruits and veggies. Honest joy for fresh produce for me and some raw cheese for James.

Temporary Iwata shrine at Nintendo World memorializing the recent passing of the President of Nintendo, Japan.

Day 4:

Dr. Li spent a long time doing acupressure before acupuncture. The difference in the amount of touch James was able to tolerate from Day 1 to today was amazing. We sit quietly, but at one point, I wanted to shout out, "I can't believe she's touching his feet!" He often says to me, "I've heard you can't tickle yourself, but I can." He's the most ticklish person I know.

All of these appointments have been tiring. James always asks to do something afterwards, but usually changes his mind. Yesterday was the only day we have followed through so far, and that was leaving the office directly. It resulted in him being overtired and crabby. He usually has a lot of energy. However, the acupuncture is supposed to be relaxing and our diet has not been as healthy as at home. It takes it's toll.

Day 5:

Another day of acupressure and acupuncture, although not quite as long as the day before. Today, Dr. Li had a young patient helper with her, who handed her the needles as she prepped James's skin. One of the real highlights of the trip has been meeting other families going through the process and even one who is in the biomarker study (so incredible to see that real and beginning!). I am not particularly gregarious in person (perhaps an understatement) but luckily I had a friend from the Midwest I met at the beginning the week who was outgoing enough for us both. And truly, I met many lovely families this week.

Dr. Li was particularly talkative today, which surprised us. Usually, when we come in, our directions are to be quiet, so that James can relax, so when she was asking us questions and conversing, we were a little hesitant at first to reply, kind of like talking out of turn in class.

After acupuncture, we met some friends for ice cream at A La Mode and we even got burgers from Bare Burger  for dinner. Two places out in one day might be a record for us. James declared the Bare Burger to be "the best he's ever had." He's had a fair number of burgers. And they were very careful, noting the allergies and reviewing their ingredients with Darren (who did the ordering and went to pick them up) despite how busy they were.

Day 6:

We were all relieved to make it to our last day. James was more antsy during acupuncture than he had been since the first day, so Dr. Li dropped his time down to 5 min., but within a minute of having the needles in, you could visibly see his body relax. I actually thought he was asleep on the table, he was lying so still.

We had a wrap-up chat. She wants his cream dosage increased ("we all have to do things we don't like") and we will be back in 6 months.

Why It Was Worth It:

1. He had no hives all week. Enough said.

2. Traveling is enormously stressful for him. Prior to this, the longest trip we've done is 10 days (before we were in NYC, we visited my mom for a week, so we've been gone 2 weeks now). He remembers loving trips when we return, but during the trip, he's generally miserable, physically and emotionally. But, this trip, he felt some 'I'm ready to go home,' as did I, but it wasn't the extreme feelings he usually experiences. No increase in tics, no emotional outbursts, no physical ramifications.

I would really like to continue acupuncture with him at home, but with all things for him, Dr. Li urged us to go slow. If he requests it, then it's okay. If not, leave it be for now.

Practical Considerations:

We stayed at a Hilton Garden Inn because of having points. In retrospect, not having a full sized refrigerator was a big deal and I would make that more of a priority in future trips. We are used to eating fresh and this limited our options to a lot of packaged foods. The Dumont is also very close to the office, does have full kitchens and larger suites - something to consider for the next time.

Minute Rice Microwaveable Cups - terrible, you are not that hungry.

Hormel pre-cooked bacon - doesn't require refrigeration, but you might as well eat salt and call it a day.

The best part of the Hilton Garden Inn Midtown/Park Ave is its location, literally around the block from Dr. Li's office. 

Bring two pairs of comfortable shoes. You will regret bringing only one.

My experience, (yours may vary) is to plan on this being a medical visit, not a tourist one. Anything you may get to do or see is bonus, but don't plan on a lot. James, as I mentioned, was often worn out, and not up for any sightseeing. In the evening, he would have more energy and want to just take walks, which was fine. 

Food Fear Factor

"He's just anxious."

How many of us know someone who has the flu and afterwards, for a time, avoids the food they ate  before the flu started? Logically, they know that pasta dinner did not cause the flu, but physiologically, their stomach turns every time they look at a plate of pasta.

Now imagine that instead of throwing up, that plate of pasta made it difficult to breathe, caused you to be rushed to the emergency room, ended with shots, and tests, and medications, and more tests. Is it surprising that a child looks at everything on the table that night and says, "I don't want to eat that."?

Allergic Living recently published an article, "5 Reasons Patients Shun Critical Food Allergy Testing." Number three on the list was fear of the oral test.

Allergists have (among other things) the job of determining what is safe to eat.  Lives and, depending on the circumstances, nutrition, can be improved by broadening the diet. But, allergists can also undermine the confidence of patients by dismissing fear as "just anxiety."

Our Experience:

James does not test allergic to apple. It was one of the foods he was tested for OAS for. In fact, it was the food that caused a reaction that made the allergist think he had OAS, yet the testing was negative. Since the testing was negative and OAS generally results in minor reactions, the allergist recommended we test apple at home. We haven't. James has no interest in eating apple (he does eat cooked apple). I don't care. He eats plenty of fruits. If he never eats another apple, he is not missing out nutritionally.

Last October, right before our first appointment with Dr. Li, James's allergist recommended a food challenge for soy and wheat. Dr. Li suggested we wait. James implemented a two allergist agreement rule for any food challenge so we are waiting. We would have waited on Dr. Li's request anyway. The time of waiting has been good for James. It has given him time to think about adding in the food, about what a challenge would be like, pass or fail. There are times when anticipation increases anxiety, but this has been about working towards a goal, with each swallowed pills and slather of cream, he takes back some control.

So, if all the tests look good in October, then those are food challenges he will complete. Soy and wheat, unlike apple, would make a huge difference in all of our lives. And, I expect, when the time comes, we will all be a little anxious. But, having taken time and allowed confidence to re-grow, I don't think it will be unmanageable.

Advice to Parents

You know your child. You need to make a careful consideration of all the factors and come to a decision. It's not a time to allow outside pressure from anyone - allergist, family members, strangers writing blogs - influence you, however well meaning they are.

1. Take your time. 

2. Work with your allergist.

3. Don't be afraid of taking your child to a therapist if needed. According to this toolkit from the National Eating Disorders Association, presence of a food allergy is a risk factor for an eating disorder. Obviously, most people with food allergies do not develop an eating disorder, however, if you notice that your child has developed extreme fear or avoidance behavior, professional intervention may be needed.

4. Celebrate your successes. I find this can be a one step forward, two steps back process, so we celebrate every step forward.

Has your child had and food based fear? What have you found helps?

"That's No Ordinary Rabbit"

We are in Food Allergy Awareness Week. Technically, rabbits are food. However, I will not be speaking of them in that context.

Two weeks ago, a dear friend's husband had a life-threatening reaction to their pet rabbit. He had been having asthma problems which were related to the rabbit for some time. The rabbit had been relegated to the garage. Even so, this day, when he went into the garage, he had trouble breathing, used his asthma medication, found no relief, and eventually, was taken to the hospital. He was given epinephrine, Benadryl, and steroids. He left with a prescription for Epi-pens, steroids, and a refill for his inhaler, but, as is so familiar, very little instructions or directions on what to do next.

Here is my advice, having been down a similar path, somewhat generalized, for those who may walk this path again:

Avoid your Allergen

This is an emotional blow, different when you are talking about a beloved pet versus a food, but either way, those words, which seem simple on the face, are actually quite difficult. Quoting Dr. Dave Stukus, "Families told to get rid of their pets by their allergists find themselves a new allergist, not a new pet." And I know when James got his test results back, my second thought (after looking at the food) was to be relieved that he was not allergic to the dogs and cats.

Epi-Pens: Carry Them, Keep them Together

Obviously, a rabbit being easier to avoid than most allergens, it may seem like you don't need them with you always. There's a few reasons I would argue that with even a seemingly easy to avoid allergy, you always need your epi-pens with you:

1. It can take months for your environment to be fully clean of the proteins from pet, even with thorough cleaning. Regarding mammalian proteins in an article about anaphylaxis from a horse allergy: "It is necessary to remember that the allergen levels decrease slowly over several months after pet removal." Gao et al, Wao Journal, Aug. 2009
2. Other people own pets and allergic proteins are clingy. I, myself, have experienced going to the Urgent Care (not allergy related) only to be treated from the door way because the doctor's pet allergies were too severe to treat me. Note to self: Use tape roller before heading to Urgent Care?
3. There is always the possibility that instead of the rabbit, the reaction was caused by the hay the rabbit was being fed. Grass (hay being a form of grass) is actually a more common allergy than rabbit. And a more common trigger.

Here is a link for a co-pay coupon for the Epi-pen.

See a Board-Certified Allergist

An allergist will be able to sort through the history and do the testing to determine what the allergy actually is. He will also be able to give an emergency action plan, clear for the entire family.

Rodent Allergies

This is information I found specific to rodent allergies.

What information would you share for someone newly diagnosed?

 

Preparing for a Monthly Consult

Each month, we have a monthly phone consult with Dr. Li, to update her on how James is doing and for any alterations in his protocol. I have struggled on how to best make use of this time. The first month, I pretty much only talked about the medicines, 'Yes he was taking them, no he hadn't had any problems with them.' Eventually, I realized that she was looking for more information than this, but how much information was enough, how much was too much, and how to be efficient - it's a balance I'm still working on. After all, Dr. Li not only sees patients, but conducts research, and as far as I can tell, rarely takes a day off. The time should be used efficiently.

The people on the Chinese Herbs for Allergies Facebook group (a wonderful resource that I highly recommend if you are interested in TCM treatment) have been helpful in guiding me in my latest attempt to be more efficient.

1. Throughout the month, I note any incidents of consequence in my google calendar. I've chosen bright red for the color so it stands out, although I would of course filter the calendar to show only allergy events.
2. At the end of the month, I turn those events into a bulleted list in an e-mail.
3. At the beginning of the e-mail, I re-cap James's current protocol, if there's been any deviation, and how much we currently have left of the herbs.
4. This month, James had a (brief) message of his own that I added at the end. There is a portion of his protocol (a bath) he had to stop due to his hives. Hot water frequently makes hives worse and this was the case for him. He's eager to restart the bath because he feels that doing the full protocol will be the most effective.

I'm always open for suggestions on how to use this time most efficiently. I only wish we lived close enough to see Dr. Li in person.

Food Allergy Testing: Down the Rabbit Hole

“Have you guessed the riddle yet?” the Hatter said, turning to Alice again.“No, I give it up,” Alice replied: “What’s the answer?”“I haven’t the slightest idea,” said the Hatter” 

Usually, when we go to the doctor, have a blood test, roughly a week later, we receive the results and there's a diagnosis: your cholesterol is high, you have anemia, etc. These are screening tests.

Food allergy tests, both skin and blood, are not screening tests. A positive test does not mean you are allergic. In fact, both skin and blood tests are wrong about 40-60% of the time (called a false positive). False negatives are less likely, although possible, in both tests.

The only time food allergy tests should be performed is when you are having a reaction to a food. And the only way they can be interpreted properly is in the context of your history.

“That's the reason they're called lessons," the Gryphon remarked: "because they lessen from day to day.” 

So, now you have your results, and you have been given numbers, classes, wheal sizes, and the larger then numbers the more severe the allergy, right? Of course not. But, here is where the blood test numbers can come in useful (and you can eliminate some of the false positive concerns), the larger the numbers, the more likely the test is accurate. That is, the more likely you are to truly react. The likelihood that one will react is called the positive predictive value. This is from medscape here:

• Egg: In children > 2 years of age, IgE level 7 kU/L (98% PPV); in infants ≤ 2 years, IgE level 2 kU/L (95% PPV)
• Milk: IgE level 15 kU/L (95% PPV)
• Peanut:IgE level 14 kU/L (95% PPV)
• Fish: IgE level 20 kU/L (95% PPV)
• Tree nuts: IgE level 15 kU/L (95% PPV)
• Soy: IgE level 30 kU/L (73% PPV)
• Wheat: IgE level 26 kU/L (74% PPV)

As you may remember, James failed his oral food challenge to hazelnuts and his Ige is 0.46 (depending on what standard you follow, positive is either >0.35 or >0.01. Our lab says above 0.35, so he is barely positive).


And, here is the lesson, barely positive can mean an anaphylactic reaction. Negative can even result in an anaphylactic reaction (rarely). The test is meant to guide the allergist with your history in diagnosis. It is not diagnostic in an of itself.

“Why, sometimes I've believed as many as six impossible things before breakfast.” 

What about IgG testing? IgG has no place in testing for allergies or intolerances. Some researchers and OIT doctors have actually begun measuring it (research wise) as a good measure, as in, as IgG rises,  your ability to tolerate the food. IgG shows that you have been exposed to the food. There have been studies showing that children who out grown their milk allergies have higher IgG milk levels and that IgG levels rise throughout OIT. 

“Would you tell me, please, which way I ought to go from here?""That depends a good deal on where you want to get to."

We seem to be on the cusp of the future as far as testing goes.

At Stanford, there has been news of two new tests in development. The link can explain it better than I can, but one uses a heel prick to test for 90 allergens using white blood cells. The other looks at DNA. Used together, they can also be used to determine the severity of an allergy. Now, of course, families are told to treat every allergy as potentially life threatening.

At UConn, they are also developing a food allergy test, specifically for peanut, interestingly in addition to being a food allergy test, the researchers are hoping to use the test to get a better look into the biology of a reaction.

Of course, my personal favorite, Dr. Li is developing the Basophil Activation Test (BAT). Because James's IgEs are all low, an alternate test for him, for people like him, is necessary. The idea of him undergoing another food challenge relying on a test that is, quite frankly, inadequate, is terrifying.

That said, parents are fundraising for a clinical study to help move forward Dr. Li's work on the BAT. The total is not completely updated on the page; we need slightly less than $5,000 more. If you are able to contribute anything, it would be greatly appreciated. We are trying to get the last bit raised by the end of this month.

Great news from this afternoon (April 27th) that the study has been fully funded! Thank you to everyone who has contributed and everyone who supports those with food allergies in any way.

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 hotels.com 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.