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.

Chronic Urticaria and Low Histamine

I have played with a low histamine diet for James, as it is a fairly common on-line (read: not doctor) recommendation for those with chronic urticaria. And then, last week there was this article:

"A Popular myth – low-histamine diet improves chronic spontaneous urticaria – fact or fiction?"

The points I felt most significant were:

1) they were on the diet for 3 weeks (which truly, is a very short time)
2) 75% of the participants had some improvement
3) 61% reached the endpoint goal of the study

The specific diet they used in the study is not mentioned in the abstract. I would love to see it. Part of my halfheartedness in using a low histamine diet exclusively is that there is so much on-line information, and a lot of it does not agree.

The other issue I have had in completely embracing low histamine is the mental effects. For an already food restricted teen, having to lose more food for a more nebulous health reason (that is, more nebulous than a clear food allergy) is distressing.

Here is how I have handled it:

1) No leftovers. I am trying to adhere to this as strictly as I can. I was a huge leftovers fan. With only three of us, it was easy to cook a meal and then use whatever was leftover in a meal later in the week. James had what we think was a histamine type reaction (leftover tuna, spinach, and blue cheese in a salad) and Dr. Li specifically advised against leftovers (and limiting blue cheese, which we have been fairly successful with).

2) Emphasizing the foods he can eat, trying to add in more of those foods which are low histamine rather than eliminating all the high histamine ones. My thought with this is that if he is full of low histamine foods, he will be not eat as many high histamine ones.

I have been using this list because I like how it is organized. Dr. Bowdish kindly replied on twitter with this option 

.@hollysjoy I've used a variation of this list from Allergy & Immunology Associates of Michigan https://t.co/eUufyigd6x

— Matthew Bowdish MD (@MatthewBowdish) September 17, 2016

It's one I also like because of it's clarity and limited nature (ie. not every food you eat is listed as high histamine).

These two reasonable steps are working for us. If this article had been posted when James had active and severe chronic urticaria, I would have done a stricter version, at least for three weeks to see any results.

At this point in James's life, I try to make any dietary changes or limitations part of teaching him how to eat as an adult, not that far away. In some ways, his diagnosis was the best thing that happened to him, because he had no idea one could eat without, in particular digestive, pain.  He is learning to listen to his body and eat accordingly. And this will serve him much longer in life than if I forced a certain diet.

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!

Baby Steps

"You have done wonderful work."

Typical of Dr. Li, ever modest, this was her response to James's blood test results.

As I suspected, not much has changed in every day life. James needs to be off of his Allegra to move forward, so that is the next step. Since he has a history of chronic hives and has been using a daily antihistamine for a decade, this will be a long process.

Dr. Li is also going to send herbs to help with viruses, hopefully eliminating any viral hives. When he is no longer taking Allegra, he will be able to start with his local allergist, to do skin testing, and hopefully food challenges.

While this definitely is not an exciting update, it is the behind the scenes of what happens next (for us). While we would love blood testing to be accurate enough to get results and start eating the food, that is not reality. It tests my patience, but not my thankfulness.

Stunning One Year Test Results

Yesterday, I read off James's test results, starting with the environmentals which were at the top, "Normal, normal, normal, slightly high, normal - wait a minute, these are all normal." I scrolled down to the food results, "Normal, normal normal."

Background

James, 13, starting seeing Dr. Li after multiple life threatening reactions, starting when he was 10 years old. Despite low IgEs, his allergies were progressing, including having OAS to multiple fruits and vegetables. He had had life long GI issues, chronic hives, and a cough after exercise that could lead to throwing up.

Test Results

Last years results are from July 2014, except for the tree nuts, which are from Sept. 2014.

Food

Wheat: 1.61 to 0.18 

Soy: 1.27 to 0.15

Lentil: 0.50 to <0.10

Peanut: 1.50 to 0.30

Walnut: 0.31 to <0.10

Hazelnut: 0.46 to <0.10

Pistachio: 0.97 to 0.24

Almond: 0.64 to <0.10

Environmentals

Bermuda Grass: 2.36 to 0.24

Rye Grass: 3.28 to 0.37

Mugwort: 1.23 to <0.10

Russian Thistle: 2.87 to 0.44

Elm: 2.27 to 0.18

Cockroach: 1.54 to 0.27

Juniper: 1.24 to 0.18

Cedar: 0.63 to <0.10

Total IgE: 65.7 to 30.1

Questions

Where do we go from here?

I'm not really sure. I am waiting for the official report to come in the mail and then I will send them to Dr. Li. My first priority is to be able to reduce James's Allegra, because he cannot have any food challenges if he still is taking it. In a twist (because nothing is every simple), he had minor hives twice last week. I believe he had a virus which caused them, but it's not perfectly clear that was the case. So, I was supposed to start reducing his Allegra and didn't. Hopefully, by the time of our next consult, he will still be hive free and we can begin that process.

What did you do?

I've blogged on here a few times about James's protocol: here, here, and here. This relates our experience at "TCM camp" this summer.

His protocol has changed more often than I have blogged. His current protocol is:

Mei Huang 5 Tea: 5 capsules 2 times a day

Mu Lian Tea: 5 pills 2 times a day

Good Mood Tea: 5 pills 2 times a day

Shi Zhen Tea 1A: 8 capsules 2 times a day

Shu Chuan Tea: 6 capsules 2 times a day

Cream 3VB: 2 times a day application, after bath and shower

Huang Lian: 2 tsp in bath once a day

Niu Bang Zi: 2 packets in bath once a day

Remember however that Dr. Li's protocols are personalized so these are only examples of James's protocols, not prescriptions that can be generalized.

Other than doing our best to eat healthy (and he eats plenty of junk - don't get the wrong idea), we don't do anything else: no probiotics, no cranberry juice, nothing supplementation wise. I am not saying there aren't benefits. This was just our choice.

My Own Thoughts

Having his blood work done was scary. There was a real chance that we wouldn't see progress in the first year and I know I would have been disheartened. The treatment is, as I have always tried to relay, intense. It has taken a lot of dedication and money.

I was hoping for improvement, but never expected such complete, positive results. I have some speculation as to why, but it is complete speculation.

1. His IgEs were low to being with, even though those low numbers had resulted in anaphylaxis. Basically, he didn't have as far to go.

2. Even though he was older, his immune system was obviously in flux, in the wrong way, when we began. Maybe it was "open" to being shifted in the other direction.

In Between Here and There

We are kind of in a weird place right now - in the best possible way. I am going to FABlogcon this weekend, and is James even really allergic anymore? I am not complaining. I plan to enjoy myself. But, like always, I would love to be at the end. I have already allowed myself daydreams of wheat bread and dim sum. I will keep posting at times and hopefully will be able to share successful food challenges in the not too distant future, but I hopefully soon, I will be wrapping things up here.

I would be happy to answer anyone's questions. 

Results

But not what you think ...

October 23rd, James had a cyst removed from his forehead. I went in thinking it was no big deal, right up until the dermatologist said, "You'll have the biopsy results in two weeks," - not the words you want to hear.

I kept this mostly under my hat, but Wednesday, the dermatologist called with the results - benign. Everything else I'm sharing had paled in comparison to having that behind us.

Hives

They're back. The disappointment is huge. We are not talking about a serious case - a few on his lower leg that resolved on their own. But, the implications are vast. I never did get to try to reduce his Allegra - that would have been this Saturday. No food challenges will be possible until he has no hives without Allegra. I'm grateful we will be returning to see Dr. Li in December.

Blood test

It's drawn, this Monday. I am hoping to be able to report some good progress, whether or not we are able to challenge. Hopefully, next Monday we will have results. I had a hard time deciding what to test for this round. James has some allergens tested that are possibly false positives and I questioned whether or not to include them. 

As it turned out, I had an (insurance) limit of 25 allergens. It sounds like (is) a lot, but included environmental. He has nine environmentals tested, peanut, wheat, soy, lentils (that's 13). Running a tree nut panel (minus Brazil nut because that would be one too many) fills up the 25 limit. I excluded melon and mango (OAS related) and pea and white bean. James's allergist feels the legumes are likely false positives. I included lentil as a representative of the class as it is the one he has had GI problems with the longest (his whole life).

Hopefully, early next week I will be able to come back with positive results!

Making Progress

The Good News

James is still free of hives. If he continues hive-free this month, Dr. Li will have us begin to lessen his antihistamine dosage.

We have now "graduated" to every other month phone consults. My excitement is not at less contact with Dr. Li, but at the knowledge that she feels James has made enough progress to need less contact.

Dr. Li has switched from Mei Huang 4 to Mei Huang 5. James has used varying doses of Mei Huang 4 (and 3). At his highest dose, he was taking 20 pills two times a day. With Mei Huang 5, his ultimate dose will be only five pills two times a day. Currently, he is taking three because he felt nauseous with the higher dose. This has happened with his pills before and as he becomes accustomed, he is able to take more. So, while the dosage will increase slightly, few pills has meant a lower cost. We have gone from $1200 a month to $900 a month.

The Bad News

James had a minor reaction this week. I am not sure to what. He complained of throat itchiness and knew it was a reaction. It resolved with Benadryl.

All he had had was chicken and OJ. At first I thought perhaps his OAS now included oranges (although juices usually are pasteurized).  The pollen family his other OAS foods fall under is grass and orange is commonly listed in the cross reactivity lists. However, he has since had the same juice with no problems.

So, I turn to the chicken, which was a Costco rotisserie chicken. We picked it up on the way home from a museum and not from our normal Costco. It leads me to wonder if this Costco was not careful in preparing it, leading to cross contact with nuts from their bakery department. If this is the case, it was a very minor reaction and shows a lot of improvement from his previous cross contact reactions. And I will be more careful in the future questioning the stores before buying a rotisserie chicken.

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.

One Month Post-Camp

What are the long term expected outcomes expected from TCM camp?

I had this excellent question posed to me shortly after I posted our experience, and the truth was, other than giving Dr. Li a better sense of James and his condition (in many ways, huge), I wasn't sure what, if any, the long term physical outcomes would be. We are only a month out, but I feel confident enough to give an update.

Hives

He simply hasn't had any. His last set of hives was at my mom's right before we went to see Dr. Li and, for a month, he has been hive free. This may seem like a small milestone but, considering he had his first hives at three years old, and now at 13, he has never been hive free for an entire month unless specifically medicated. After the first three years, most of his hive episodes were mild and self-resolving, but relentless. Once or twice a year, he would have head to toe hives that took a week to a month to resolve, with varying degrees of medications.

Our last day with Dr. Li, we told her, a bit shocked, that James hadn't had hives for the entire week. Dr. Li suggested that, based on other patients, this might be the starting point for being hive free for a month.

"Well," I said, "I'll take it a week at a time. Actually, I'll take it a day at a time."

That we are here, at the end of the month, with no hives, is astounding to me.

Sleep

Acupuncture made James tired and more calm, so sleep was not a problem in New York. Usually, he takes a melatonin at night to help him sleep. I had made it a goal this summer to eliminate any melatonin, slowly over the summer. We realized returning from New York, that he had not taken any melatonin while we were there. So, taking advantage of a two week break, an established sleep pattern, and the time change, we continued not giving it to him.

This has been a moderate success. He has had some days he has taken melatonin; he couldn't get to sleep as he's gotten used to the time difference. This has happened maybe once a week. He's had other days he's stayed up later than I would like, however, that was the case with melatonin. 

He has used melatonin for years, so being able to sleep regularly and without drama is huge progress.

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. 

Three's a Crowd?

Balancing Between a Research Allergist and a Local Allergist

Dr. Li does not replace your local allergist and, in fact, on her website under the FAQs, she outlines why she likes to work with local physicians and why they will need to do your blood work. Still, almost from the beginning, I have struggled to decide what issues are a local allergist issue and what are ones for Dr. Li.

An example that worked well

In March, James had hives for about three weeks. When they first began, we treated them ourselves and thought I would mention them to Dr. Li during our regular consult. Hives are not unusual for James.

As the week progressed and they were not under control, it became obvious that they worsened during bath and shower (likely from the hot water). I contacted Dr. Li by e-mail to see if we could eliminate one to reduce his water time. She responded quickly and told us to stop his bath until further notice.

By the beginning of the next week, we still didn't have his hives under control, so I e-mailed his allergist for advice on a protocol to help control the hives. It took a couple of weeks and a few e-mails to get a protocol to begin to work. The hives were improved but he still had daily breakthrough hives. 

During that time, we also had our regular phone consult with Dr. Li. She adjusted her protocol as well. Two days after her changes, the hives stopped and I started reducing his western medicines. It took about a week to return to his previous levels and, although he continues to have mild hives occasionally, for the most part, the issue is resolved.

An example I'm less comfortable with

Dr. Li had casually mentioned mast cells to me a couple times (note to self: Dr. Li doesn't casually mention. If she says something, it is not in passing.). After the second time, I e-mailed James's local allergist asking if Mast Cell Activation Syndrome* was a possibility for James. And he replied yes, but he also sees people that it could be a possibility for that don't have it. So, we agreed to wait until James already needed blood work and run a tryptase* test.

Which we did and the results were normal. And now Dr. Li says not so casually that she is concerned about his mast cells and she wants him tested, but she wants a Prostglandin D2* test. And this puts me in the somewhat awkward position of returning to our local allergist, 'Thanks for the first test. Yes, I know it was normal. Hmm. I would really like this second test, supposed to be better. I hear. Carry on."

This is not a matter of not trusting James's local allergist, because I do, this is a matter of Dr. Li having a more complete picture of James's health. Although we don't talk long, we have had ten consults between October and now (nine planned and one in between). I have attempted to document for her each symptom and improvement. His local allergist has had one consult and a handful of e-mails.

I should add that our local allergist is really supportive of our seeing Dr. Li and told us she was "brilliant." So, this is more about communication and using each of their time and resources wisely.

Have you had any issues balancing doctors? How do you handle it?

*  Definitions available on the Glossary page

The Roller Coaster Ride

The Ups

Is he ok?

Yeah, he coughs like that when he runs or exercises. I told his pediatrician. She says it's normal.

That is not normal. Tell her again.

A conversation I had with a friend of mine, a nurse, last August. James was coughing, bringing up mucous, like he always did after he ran or played with his friends for any period of time outside. He often would cough so hard he would throw up, He often would not participate or take frequent breaks so he wouldn't end up doubled up, coughing helplessly.

Then, in April, he met his friend at the park, and as we were leaving he said, "You know what was weird, mom? I could run as much as I wanted and I never had to cough."

His friends wanted him to take a soccer class with them and, with reservations, I signed him up. He went on Monday, and never coughed. An hour of running, kicking, playing - freedom - and not a cough. He did say he had a slight burning in his lungs after, but no coughing.

For him to be able to play and breathe without worry is a priceless gift.

The Downs

The very next day, James had a patch of hives on his arm after being hive free for nearly a month. I was hoping for bug bites, but as we watched, the changed shape, came and went and came again - not bug bites. It was a small patch and didn't spread. The next day, he had no more hives and so far, has been hive free again.

My Thoughts

James has severe problems with environmental allergies. His cough never occurred when he played hockey, inside. So, the lack of a cough is a sigh that his environmental allergies are improving and I'm so thankful.

His hives are also likely caused by environmental allergies. Although he hasn't had an episode as long lasting as he did this Spring, he has had hives every Spring for the past three years. And the hives on his arm the day after soccer could have been cause by his exposure to pollen while at soccer (and actually, we spent the entire day outside for a field trip).

And here is my dilemma. By not limiting his exposure to pollen, I am causing his body to constantly react, to reinforce his allergic response. But, I do not want to rob him of his present in order to prefect his future. And being active and being outside is extremely important to him.

So, those of you with children with extreme environmental allergies who are in treatment, how do you balance this?

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.