Sunday, June 28, 2015

A New Diagnosis...and Having Food Allergies

A couple of weeks ago, Bubs returned home from summer camp and was complaining of being very tired.  I blamed it on a week away at camp.  A few days later he had some puffiness in his face, which I attributed to seasonal allergies and had him resume taking Claritin.  He continued with other complaints including difficulty catching his breath, decreased appetite, nausea, headaches, and ongoing fatigue.  I thought, dehydration, seasonal allergies, too busy with activities, etc.  I also noticed that his torso was getting thicker, for lack of better words.  But I thought this 10 year old boy may be in the beginning stages of puberty.  I even joked with him about becoming a man.  

 

I tend to be on the "we don't need to go to the doctor until an arm is falling off" end of the spectrum.  But when there was notable swelling in his entire body, I decided I should take him in.  

We went to our office's walk-in clinic the next morning.  When they weighed him, we found that he has gained 13 pounds in the last 4 months.  That is a ton of weight for this skinny kid.  We saw a nurse practitioner who spent a lot of time with us.  I could tell she was concerned and didn't really know what to think.  His physical exam seemed normal.  Heart and lungs sounded good.  Eyes, ears, nose, and throat looked clear.  No tenderness to palpation in his tummy.  She decided to order some labs to see if anything was off with his bloodwork.

This kid dreads anything with a needle.  He calls anything involving a needle a shot, whether it is a vaccination or a blood draw.  He loathes going to the allergist because he knows he will have to get a "shot."  So now, on top of all of his other symptoms, he was experiencing anxiety too.  

We were supposed to get the results the following morning, but I received no phone call that morning.  Bubs' face and body looked even worse.  I called and left messages asking for a phone call back.  My mind was spinning thinking of all the different things that could be wrong.  Heart failure, kidney failure, liver failure, cancer.  If he had to be hospitalized, would they be able to feed him, or would I be able to bring in safe food for him?  I was thinking they weren't calling me back because something was so skewed that they had to look further into what was going on.  If everything had been normal, they would have called right away when they said they wouldFinally, at the end of the day, the phone rang.  (The delayed phone call had been because an additional test had been ordered to check for mono, which apparently takes longer than the standard testing they were doing.)  

Diagnosis: Hypothyroidism.  While this isn't a wonderful thing to have, I am so greatful it is something that is managebale with meds.  We can handle this.  Except the sample pills they gave us contain.....you guessed it.....MILK.  

I always check for lactose monohydrate on pill bottles because this is commonly an inactive ingredient.  I didn't know what to do.  It was now after hours, and I wanted to start this medicine first thing in the morning as Bubs continued to swell up.  I called the on-call nurse practitioner asking for a liquid form of Synthroid.  She called around to several pharmacies, but none of them were able to make that compound.  The pharmacy that she knew of that could make it was already closed for the evening.  We just had to wait another day.  I gave Bubs an ibuprofen hoping it would help with the inflammation, which it did.  He looked better within an hour.  

The following day the nurse practioner called me back saying they had decided to start Bubs on a gel capsule of levothyroxine called Tirosint.  I was happy with this as I had been inundated with support and suggestions after posting a comment on Facebook asking for help from the food allergy community.  Tirosint was a drug that several people had suggested as hypoallergenic, and it does not contain any milk.

He began the gel tabs two days ago.  Now we wait to meet with an endocrinologist in a month.  I told Bubs that he will get used to needles as he will have many blood draws in the near future.  

Dealing with food allergies is something I have become accustomed to.  But now having to navigate our way through a new chronic disease that involves daily meds which we have to check for his allergens is new territory.  We will get through this together.  

Sunday, June 14, 2015

Overnight Summer Camp....With Food Allergies



One of my favorite childhood memories was going away to a week long overnight summer camp.  We got to swim, do archery, sing songs, camp under the stars, make new friends, etc.  This is something I have always wanted my kids to experience too.

Most typical activities are more challenging when food allergies are involved.  This is compounded when the plan is for these kids to be away from home for five days without a parent around.  Luckily, there was a parent from our church who would be at camp with my kids for the whole week (our church sent a small group of kids to this camp).  She knew some general info about my kids' food allergies, but she needed to know more  She willingly met with me prior to leaving for camp so I could really give her the low down.

About two months before the camp began, I spoke with the camp director on the phone, and he told me that I could provide all of my kids' food.  He told me that I would get the menu about a week ahead of time so I could prepare similar food.  He also told me that they wouldn't offer peanut products the week we would be there.  He couldn't guarantee that everything would be "peanut-free" since they may use some products that may have been processed with peanuts.  But they would do their best to eliminate straight peanut products.    

With this knowledge and knowing that an educated adult would be there, I eagerly signed the kids up.  For the next two months, I kept telling the kids how much fun they would have at this camp.  But deep down, I was having anxiety about their food.  New experiences are difficult, especially if I can't be there.

The weekend before they left, I spent lots of time in the kitchen preparing a week's worth of food, packaged and labeled for easy reheating and serving.  I did my best to make it easy by labeling each container with which food it contained for which day/meal and for which kid.  I had bags of dry food, each labeled in the same fashion.  I felt confidant as we headed down the road to camp on Monday morning.

Drop off was at the Dining Hall.  There were camp counselors and nurses there.  As soon as I said our name, the nurses knew right who we were.  She took our EpiPens and inhalers and told us she would escort me to the kitchen once I got the kids settled in their cabins.

After giving my kids a big hug and kiss goodbye, I found the nurse and we headed to the kitchen.  This is where I got nervous.  It didn't seem as if these three ladies (working in the kitchen) were expecting me.  Also, the first meal was supposed to be tacos, but they were making grilled ham and cheese.  When I asked about it, they simply said they had to switch around a few meals.  I got flustered because I had labeled everything by day and meal to match their menu.  I was trying to make it easy, and now things wouldn't line up right.  The adult from our church was with me and said, "It will all work out.  I'll help them get it straight."  I was thankful for that voice of reason.

During my explanation of all the food stuff to the kitchen staff, I also mentioned that they need to wash their hands before handling my kids' food because of cross-contamination.  I got lots of blank looks while I was talking to these ladies.  My anxiety grew as I continued to talk.  One of the gals said that they have a peanut butter bar at each meal.  Before she could say anymore, I said that the camp director had told me that this week would be "peanut-free."  She said that was fine, and she would wipe down the counter where they usually have that set up.

It seemed to me that there was a breakdown in communication somewhere.  If it weren't for this parent volunteer, I would have been a wreck and spent a lot more time there talking to all the staff.  But she kept me calm and told me she would look out for my kids.

I left the camp, feeling very uncomfortable.  The parent volunteer told me she would text updates to me each night so I would know everything was OK.  She texted me later that day saying that following lunch (their first meal), she met with the camp director and nurse, and they decided to move all of my kids' food to the staff fridge, and she would be in charge of reheating and serving my kids' food.  This would completely eliminate having to rely on the kitchen staff .  They also decided that all the kids at camp would wash their hands after each meal to help prevent a reaction.  :)

What a huge relief that was!  After receiving that text, I didn't worry a second more!  I enjoyed my week home with my little girls while the big kids had a blast at camp.  And they created all sorts of wonderful new memories that will last a lifetime!

I'm so glad I took the leap to send my kids with food allergies away to summer camp.  It's scary for all of us, but so worth the experience!  They can't wait to go back next year!

Scalloped Potatoes (Gluten and Top 8 Free)

 Allergy friendly Scalloped potatoes are perfect for any party or dinner.

One of the menu items for my kids at summer camp this year was scalloped potatoes.  I had never made these before, so I thought I'd give it a try.  They were quite easy to make, and they turned out delicious and creamy!

Scalloped Potatoes
5 lb bag of potatoes, peeled and sliced
11 oz container So Delicious Culinary Milk
1 pkg Daiya cheddar cheese
2-3 tsp dairy-free butter (I use Earth Balance soy free)
1 tsp onion powder (or real chopped onions)
1 tsp garlic powder
1/2 tsp black pepper

Preheat oven to 425ยบ.  In a medium saucepan, melt over medium heat milk, cheese, butter, onions, garlic powder, and pepper, stirring frequently.  Spray 9x13 dish with cooking spray, then place sliced potatoes in dish.  Once sauce is completely melted, pour over  potatoes and bake for 30-45 minutes (until potatoes are soft).  It's really that simple!      

Allergy friendly Scalloped potatoes are perfect for any party or dinner.
Allergy friendly Scalloped potatoes are perfect for any party or dinner.
Before baking