Goal Setting

When James started treatment, my goal was pretty clear: I didn't want him to be allergic anymore. The allergy seemed the mountain to be conquered.

What I didn't know was how ill he had always been. Having been told, "this is normal," what I didn't hear is: "This is normal for him. This is not life threatening."

The food allergies were obviously not normal and obviously life threatening, so they became the enemy.

His health improvement was so fast and so nearly complete that it quickly became obvious that his previous struggles were not normal, not even normal for him. It became clear how completely they were affecting his daily quality of life. Since it had always been that way, none of us knew.

He had a brief, slight regression and seems to have recovered. I realized that his allergies were no longer the main mountain we were climbing.

I want to clarify our goals while seeing Dr. Li this month:

• Can he maintain his gains (or improve more)?
• Will he be able to maintain them even when eventually weaned from treatment?
• Realistically, should we be planning on food challenges or should we be focusing on getting him healthy, without attempting to introduce the foods he's allergic to?

Protocol Update:

Currently James is taking:

• Digestion Tea 2 (in tea form, not capsules. Most of the teas he takes are in capsules. There's one herb in the capsule version he cannot have, so he gets the drinkable version). We give 1/2 a packer of 6 different herbs mixed together in hot water twice a day
• Shu Chuan Tea - 6 capsules twice a day
• Shi Zhen Tea 1a - 6 capsules twice a day
• Good Mood Tea - 5 capsules twice a day
• Niu Bang Zhi (2 packets), Huang Bai (2 tsp), and Shi Zhen (1 capful) mixed together in his bath once a day
• Cream 3vb once a day

His focus in treatment has shifted to focus more on his GI problems and keeping his skin clear.

Misdiagnosis

Allergies are particularly prone to misdiagnosis but, the truth is, as you can see in the infographic below, misdiagnosis is a common problem.

Part of this, I believe, is that doctors play the game of statistics. They are looking for the ordinary, what they see most frequently. In general, they get it right (19 out of 20 times). But, what if you are that one?

James was diagnosed by his first pediatrician with lactose intolerance, based on symptoms and statistics. Once he had that diagnosis, it was used by every doctor he saw to explain his frequent diarrhea and cramping. I was obviously not being careful enough with his diet. Eventually, I couldn't stand it anymore and removed all dairy, in all forms, from his diet and discovered for myself that lactose intolerance was not the problem.

Unfortunately, his gastrointestinal problems are returning. In talking to Dr. Li, explaining to her why he was misdiagnosed for so long, she said, "But of course you were careful enough!"

And truly, I was. Not that I can't make mistakes, but I didn't make nearly a decade of mistakes. I should have advocated, both for myself and for James, to get more testing and intervention sooner.

And honestly, I need to keep this in mind, because I am not convinced we have reached the end of his diagnostic tangles.
Adventist University of Health Sciences

Raw Truth

I wrote this last week.

I'm tired. A lot has nothing to do with James's protocol, but when life wears me down, it is an added "too much."

And, I worry. I worry that his health seems to be backsliding. He has improved so much since first starting with Dr. Li, but some of the old issues are starting to resurface - GI problems, complaining about breathing, tonsil stones.

And did I mention, I'm tired.

I'm frustrated that we can't successfully remove his antihistamines even though he's been down dosing since October.

Logically, I know he has been taking antihistamines for a decade. It's not surprising it would take some time to remove them.

But, I'm tired of his body being so sensitive and I'm tired of feeling like I'm playing whack-a-mole with problems.

And, that's my raw truth.

I let it sit. Posting on a low is tougher than posting on a high.

I had my consult today. I was reminded of what I already know: he has come so far. This is not a straight line treatment. His immune system is being rebuilt. There is progress he hasn't lost. Now, his treatment needs to change direction to support his digestion.

Am I still tired? A little. Would I like an easy solution? Hell yes!

But, what I have realized with a couple steps back health wise is that the progress made is precious. Even, dare I say it, enough. This is not to stay we're stopping. We're not done yet. But, I am going to stop looking at the endpoint as passing an oral food challenge. If he could eat all his allergens, but had daily hives and diarrhea - what is point?

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!

#100daysofFunFood

Some of you may remember this post about 100 days of happiness by my friend, Stacey. (Incidentally, Stacey has her own blog now, Chew the FATT). I was invited to participate in the 100 Days challenge this year - but what to do?

A photo posted by elle luna (@elleluna) on Apr 6, 2016 at 5:22am PDT

What does every allergy mom do all the time anyway? Cooking!

I cook constantly, but honestly, I don't really enjoy it. I used to love to cook, but with a million substitutions and never knowing if something will work or not, it's a chore.

So, for 100 days, I am going to focus on fun food. For me, that means either playful or something I wouldn't normally attempt. I expect to fail, but hopefully, at the end of 100 days, I will have some new recipes and renewed enjoyment in the kitchen.

It starts next Tuesday. You can follow me on Instagram to see what I accomplish.

Protocol Update

Disclaimer: As always, this is one experience with Dr. Li's protocol. Each protocol is personalized. No generalizations to your own situation should be made. Thank you.

I have tried all sorts of options to organize James's protocol. So, I thought I would give you a glimpse into my fancy system as it stands now.

Eat your heart out, Martha Stewart!

I have been through several different pill sorting boxes and have outgrown them all. I have finally take to saving pill bottles and cream jars, labeling, and filling them. This box has a weeks worth of sorted pills and any open pill bottles. It lives on a shelf in the bathroom so James can help himself.

This is in my closet and is the unopened pills for two months. Our expenses are currently about $1000 a month.

This is a nightly pill container. I can tell it is for night time because of the Allegra poking out. His protocol from Dr. Li does not change pill wise from morning to night.

He is currently taking:

8 Mei Huang tea 5 Tea capsules 2 times a day
8 Shi Zhen Tea 1a Tea capsules 2 times a day
6 Shu Chuan Tea capsules 2 times a day
5 Mu Lian pills 2 times a day
5 Good Mood Tea capsules 2 times a day
1/2 an allegra once a day
2 tsp of Huang Lian in the bath, once a day
2 packets of Niu Bang Zi in the bath, once a day
Cream IIIVB, full body application, once a day

For James, the most exciting change has been dropping the cream from twice a day to once. I cannot describe how much he hates the cream.

For me, it has been inching closer to being able to remove Allegra entirely from his protocol. This month, Dr. Li asked us to hold steady at half a pill for a month (we had been dropping half a pill every other week). I have noticed that when he reduces the amount, he has seasonal allergy symptoms for a day or two after. This week was particularly bad and he was unable to sleep for a night. However, they resolve fairly quickly so I have to guess that it is his body adjusting to the lower dose of antihistamine. Assuming all goes well, he will no longer use antihistamines in the beginning of June and we will be able to schedule skin testing.

If you had told me when we got his blood test results  that it would be at least 7 months until he was able to have skin testing, I would have thought you were crazy. And, I am not going to lie and say that the waiting is easy. Every year between March and June, James has had a major flair of his hives. If he can get through this season successfully while reducing his antihistamines, it will be a huge victory.

So, we wait.

Tregs for the Rest of Us: Part 2 Vitamin A & D

Both Vit A and D are involved in the regulation of the immune system and inflammation of tissue. In order to be used by the body, they need to be modified by enzymes.

There are many different kinds of Tregs. for simplicity, I have not specified the types in this review.

Vit A Derivatives and Treg Function

For reference, a derivative is an analogous compound to the vitamin. A metabolite is a compound created in vivo. When I say Vit A (or D3) given to a patient, I am referring to derivatives. I specifically note when I am discussing metabolites.

Vit A can be a problem unless there is the proper level; both too much and too little is problematic.. A deficiency can cause a Treg imbalance (too much Th1 and not enough Th2). A different study showed that too much Vit A in vitro causes development of Th2 cells.

A metabolite of Vit A (ATRA) converts one type of T-cells into Treg cells (again, in vitro). The resulting Treg cells suppressed effector Tcells, particularly in intestinal epithelial cells.  ATRA is also able to prevent the conversion of Treg cells into inflammatory TH17 cells. This provided some protection in a colitis model. There is some evidence that probiotic bacteria and Omega-3 fatty acids affects the functioning of ATRA in the body.

Vitamin D3 Derivatives and Treg Function

UVB exposure as well as a topical Vit D3 treatment can lead to creation of Tregs on the skin. Supplementation has also shown to have a positive effect with brain inflammation and diabetes (in terms of increasing Tregs).

MS patients have lower levels of Vit D3 metabolites, suggesting that the Vit D3 metabolites have a role in controlling inflammation and Treg formation. There is a possibility as well that Vit D3 metabolites affect the stability of Tregs in diabetic patients, but more studies are need to clarify any role they have.

Vit A and Vit D Crosstalk to Maintain Immune Homeostasis

Vit Aand  Vit D's signaling receptors are interconnected. There are two cell signaling pathways which are the same for Vit A and D. These pathways use different macromolecules to signal for either Vit D or Vit A. This leads to the hypothesis that they are both involved in maintaining a healthy balance in the immune system.

My Thoughts

Although it is not uncommon to have Vit D levels checked in a person with allergies, I have not done so for James. We live in an area with a lot of sun and he is outside without sunscreen each day. I have not heard of people testing Vit A levels, although they might. He is offered (but doesn't always eat) a wide variety of fruits and vegetables. I do not give him a multivitamin.

Since too little Vit A skews to too much much Th1 and not enough Th2, one might think that a deficiency would be good for those with allergies. However, I, personally, would not withhold a vitamin in the hopes that it changes the immune system. Vitamins have other functions besides affecting the immune system and if you over-activate the Th1 arm, there are also serious consequences (pot meet fire).

If his levels are low, I would suspect an underlying issue (he can't process Vit D for some reason, not that he doesn't get enough). It is another thing that I may address when he is done with treatment.

Part One