Monday, July 27, 2015

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. 

Monday, July 20, 2015

Pursuit of Happiness

Thank you to my guest blogger today, Stacey Cohen Sturner. Stacey is a mom of two boys, one who has a peanut allergy and the other diagnosed with Crohn's disease. Not only does she have a real-life job working to expand opportunities for those who have developmental disabilities, but she is actively working to expand her children's health opportunities as well. If you or anyone you know is affected by Crohn's, you might be interested in attending this International Research Symposium on August 16th, which she is organizing. She also pens the blog, Curing JacksonI was fortunate to meet this dynamo through the Facebook group she started related to food allergies, Food Allergy Treatment Talk

62 Days of Happiness

Last year, there was a popular social media challenge, aptly titled “100 Happy Days.” The goal was simple – be happy 100 days in a row. We all want to be happy, right? Science isn’t so sure. It turns out that happiness takes a certain degree of effort… more for some than others. 

As part of the TODAY Show’s ongoing TV series, Summer Secrets of Happiness, reporter Maria Shriver recently asked, “Is happiness born or bred?” According to the segment, “One of the common denominators among the people they found say they CHOOSE to be happy.” The mission of the non-profit organization, Project Happiness, is aligned with this sentiment as well. It’s dedicated to empowering people with the resources to create greater happiness within themselves and the world. Reason being, happiness isn’t intrinsic to one’s welfare. It often depends on how you handle your day-to-day and what it throws at you. Relinquishing the desire to control everything and everybody. Letting life happen, the good and the bad.

I excitedly participated in the “100 Happy Days” project a year ago, almost exactly. On day one, I captured my oldest child blowing bubbles with the clever title, “Ready, Set, Blow!” On day two, my youngest child readied himself for his first day of camp ever. By day 22, our family had really embraced the idea of daily happiness and enjoyed a fun afternoon at the beach. It was truly eye opening how the act of seeking happiness brought happiness. We were happy!

It changed by day 34, the Fourth of July, which was recorded for posterity’s sake on my Facebook timeline with a photo of my little guy wearing a star cover-up and pushing a toy lawnmower (“Independence”). This was when my big boy was starting to exhibit signs of a significant medical condition. My display of photos and outward happiness naturally began to wane and felt more forced. Between days 34 and 41, he was becoming increasingly gaunt, lethargic and sickly. 

I pressed on, both publicly and privately, to prove to myself that happiness conquers all. I. Am. Happy. But the reality was quite the opposite. It became a regular struggle to project a positive outlook. Inside, I was falling apart. Even though doctors hadn’t yet put their fingers on a cause for my son’s ongoing illness, mother’s intuition had kicked into high gear and I knew that something was wrong.

Day 62, spent in San Diego for our summer vacation, was depicted by a photo of my youngest curiously watching a snail slide past him on the sidewalk (“Snail’s Pace). That day, I ultimately decided that I couldn’t carry on with the ruse any longer. It felt disingenuous. These weren’t happy days after all. Truth be told, they were among the darkest days of my life. There wasn’t a social experiment to express those feelings. So, I retreated.

Eighteen days later, my son was officially diagnosed with Crohn’s disease at age 6-1/2. No photo, no post, no positivity. However, after a lot of soul searching and time to adjust to our “new normal,” happy days did manage to return again. Because I CHOOSE to be happy.

Monday, July 13, 2015

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?

Monday, July 6, 2015

Under Pressure for the Fourth

On the CHA FB Group,there have been multiple conversations about the benefits of pressure cookers and their benefits. Dr. Li has recommended them to some patients. To be clear, she has never discussed them with me, or any particular diet at all, except for asking James to stop eating cheese and amending that to less cheese at the dismay on his face.

The benefit of pressure cookers, for those with allergies, is that the pressure makes the proteins easier to digest than other forms of cooking. This post from The Food Renegade has a nice collection of abstracts outlining the research (scroll down to "But, Doesn't Pressure Cooking Still Denature Proteins in the Food?"). Here is another example, comparing the nutritional quality of microwaved and pressure cooked legumes.

The benefit of pressure cooking for legumes with it's fast cooking is pretty obvious, but we don't eat legumes. I still use the pressure cooker multiple times a week and recently got a question as to how I used it. It turned out that our July 4th meal was a great example, although we don't usually use it so much for a single meal.

Please note that the times listed are for the cooking times, not for the time it takes to come to pressure. I haven't timed that, but I think add approximately 10 minutes to come to pressure.

Also, I have an electric pressure cooker, which will affect times. If you have a manual, please adjust accordingly.

The Night Before

Potato Salad

I have included the recipe I used below, but you can use any recipe.

Peel and cube the potatoes.

The potatoes and the eggs can both be added to the pressure cooker, the eggs nestled on top of the potatoes, on top of or in whatever steamer basket/trivet your pressure cooker came with. Add 1/2 cup of water. Cook on high for 4 minutes. Release the pressure and put the potatoes and eggs in a waiting ice bath. Allow to cool, peel your eggs and proceed.

I have found that eggs are easier to peel out of the pressure cooker. No promises.

The recipe I used was adapted from Hellman's Original Mayonnaise Potato Salad Recipe :

4 lbs potatoes
4 eggs
1 cup sliced celery
1 cup sliced green onion
1 c mayonnaise
2 T prepared mustard
Salt and pepper to taste

To make the dressing, combine the cooked egg yolks, mayonnaise, and mustard until smooth. Mix together the potatoes, cooked egg whites, celery, and green onion. Add salt and pepper to taste.

The Day Of


I like falling off the bone ribs, whereas my husband and James likes ones with a little more pull to them. The pressure cooker makes the ribs fall off the bone tender like I like. Since we had a crowd coming over, I made some in the pressure cooker and my husband smoked some outside and everyone was happy.

For the record, the score at the party was nearly split, with the smoked ribs coming out slightly ahead of the pressure cooked ones.

I hope that he will adapt some Chinese style steamed rib recipes to the pressure cooker at some point, because the texture at the end is perfect.

That said, for BBQ style ribs, here is how we cook them:

1. Cut the ribs into 3-4 ribs sections. Our pressure cooker is 6 quarts and can hold about 2 lbs of ribs at a time.
2. Season the ribs with whatever spices you like.
3. Place the ribs in the pressure cooker and just cover with water.
4. Cook at high pressure for 18-22 min (I split the difference and use 20 min).
5. Release the pressure and allow to sit for 10 min.
6. Pull the ribs out of the water and let sit for 5-10 min.
7. Use a BBQ sauce of your preference on the rib and grill for 5 min per side.

I was doing 2 racks of ribs. The pressure cooker needs time to sit and cook in between uses, so I let both the ribs and the pressure cooker sit for 5-10 min. Then, I repeated the steps.

Corn on the Cob

For the party, I cut the corn in half, but you can leave it whole. The directions don't change. Put in the steaming basket or trivet. Add water. Amounts depend on how much corn. I used ten 1/2 ears and 1 1/2 cups of water. The timing won't change - 2 minutes at high pressure and then release the pressure.

Final thoughts

I love the pressure cooker, the way some people love their slow cooker. James would never eat any food out of a slow cooker because of the texture, but there's never any complaints about the pressure cooker.

Things I love:

1. It uses little energy.
2. It doesn't heat up the house.
3. It's fast.
4. It's easy.

On a usual basis, I use it at least a couple times a week. It has replaced our rice cooker. In the "not quite so hot months," (some places refer to them as winter), I make stock and soup. James will eat pretty much any vegetable in a soup, but the soups he loves are canned soups, with their ultra-soft vegetables. Pressure cooking soups gives you ultra soft vegetables. When I have stock, it is simple to make soup at lunch in 6 minutes for a healthier lunch than he otherwise would have.

I have this 6 qt Cuisnart Pressure Cooker   (affiliate link) 
If you are not as much of a wimp as I am, stove top pressure cookers can be very inexpensive. I understand they are very safe but I like the easy button.