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!

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. 

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 Jackson. I 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.

Where in the World is My Epi?

Kids with Food Allergies is running a year long campaign to encourage people to always have their epi-pens (or epinephrine device of choice with them). By uploading a picture with the #WhereInTheWorldIsMyEpinephrine at a platform of your choice (see details here ), you can be entered into a monthly drawing for $400 worth of products.

Here's a collection of pictures from our recent trip. Can you see his epi-pens in these pictures? They are visible, although I don't think visible enough for the contest (which is fine, James would not want them that visible).

The bottom two pictures were taken at Zion National Park. We took a shuttle on the way back and here's what we heard over the radio as we went (name and age changed for privacy because I, frankly, can't believe they gave that information out over the radio when it wasn't private):

We have a 15 year old girl, Trixie, in anaphylactic shock. Epi has been given. Coming out of the Narrows.

What did she react to?

In my head: Who the hell cares?

I don't know. She has been given an epi-pen. Her throat just started closing up. We need an ambulance.

But, was she stung by something? Did she eat something?

In my head again: Who the hell cares?

James: "Why isn't the driver calling for help?" 

Our driver had not been using the radio, this was all overheard, so we explained that he would hear what was going on throughout the park, but that others were helping.

James: "Someone needs to help her."

We're out of the Narrows now. 

Is she stable?

In my head: Finally!

Yes, she's stable. She's walking.

Ambulance and rangers are on their way.

And at this point, they pass our shuttle.

This is the Narrows.

She was smart, she carried her epi-pen. I am still thinking of her everyday and hoping she is ok.

Where in the world is your epinephrine?

Camping: Food and Medicine

When Going to the Grocery Store isn't that Helpful

Fortunately, we have an RV, so I don't have to figure out how to camp for a week with only non-perishables. That said, there is a little more prep for food when we camp. And since I spend so much time cooking regularly, I like to have as much done in advance as possible, so my vacation is actually a vacation and not time spent cooking.

For the next week when we go camping we have planned:

Breakfast:

English Muffins with Sunbutter (made the English Muffins ahead and froze)

Pancakes (made a couple batches of batter and froze)

Breakfast Burritos (made the wrappers and burritos ahead, frozen)

Eggs and Sausage

Lunches:

Lunch meat,cheese, fruit, crackers

Dinner:

Mushroom, Beef, and Potato Kebabs (made ahead)

Pasta Salad (made ahead)

Hot Dogs and Salad (cut up the salad ahead)

Fried Rice (made ahead and froze)

Bean Free Chili (made ahead and froze, recipe to follow)

Blue Cheese and Bacon Hamburgers (made ahead and froze)

Dessert/Snacks

S'Mores with homemade chocolate dipped graham crackers (recipe to follow)
No-Nut Homemade Kind™ Bars
Homemade Cocoa Mix

And in case of emergencies

Things we always consider:

• How much medicine do we need to take?
• How does it need to be stored?
• How far are we from emergency services?
• Will we ever be out of cell phone range?
• Any special precautions needed?

In this case, we know we will be taking a hike in water, so we ordered a waterproof pouch for James's epi-pens and my inhaler.

Be Prepared

 So you can then relax and enjoy your time away.