Tag Archives: Helpful Links

EpiPens in Maine

Lawmakers in Maine are considering a bill all states should pass: “to allow pharmacists to prescribe and dispense EpiPens at no cost to the patient.”

See the article here:

MAINE LAWMAKER’S PROPOSAL TO MAKE EPIPEN MORE ACCESSIBLE

Every six months we have to shell out sooooo much money to purchase two sets of the generic version. (4 sets total: 2 for each child – one for school and one for home) While we feel thankful to be reimbursed for more than 3/4th of each set, that’s still a ridiculous amount of money!

Whenever I pick them up at the pharmacy, I always think about how many people… kids… babies don’t have the necessary protection that these devices bring because of the insanely high, immoral cost!

But like always, we must reflect on how blessed we are…

on how much TJ has improved since his first anaphylactic reaction …

and how we truly believe his body as well as Madi’s will be restored from all of these allergies.

But in the meantime, we stay prepared, always with two sets on hand.

Go Maine, let’s get more states on board!

Store Bought Favorites

Oh how busy life gets! There is always something to prep, cook or bake for, but not always the time to do so. Since TJ’s diagnosis, more and more great companies have been creating delicious treats... aka tasty time savers.

*Of course, always make sure to check ingredients and labels every time to ensure it is also safe for you and your family. Check labels with each purchase as companies do change the recipe here and there. Better safe than sorry … so cliche but true.*

Here are some of our favorite go-tos.

1) Mo’Pweeze Cupcakes: Mo/Pweeze Bakery

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2) Abe’s Crumb cake: https://www.abesmuffins.com/the-muffins

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3) Abe’s Muffins: https://www.abesmuffins.com/the-muffins

4) Azure’s Bagels: Cinnamon Raisin Bagels

 

While TJ’s teachers always have a box of Oreos as his special treat in case we don’t know about a party or event at school, we ask for a monthly schedule at the start of each month to try to prevent that.  Therefore, during the crazy weeks where dinner time is late and bedtime is even later, we are blessed to have found such amazing products and trustworthy businesses.

Allergy Levels

Until recently, I have obsessed about TJ’s blood tested allergy levels. When his dairy level came back so high in April, we, or rather I, panicked.  I just kept asking myself how his dairy allergy could have gotten so much higher when we both were not consuming any dairy at all.  I drove myself nuts wondering…

Was it cross contamination?

Was it exposure at day care?

Was it from the Puffs that were produced on equipment that handle dairy despite them following cleaning codes?

The questions and obsessive thoughts just kept coming and no matter how many emails I sent or phone calls I made about the issue, no answer was in sight.  However, what I should have done back then was listen to our allergist.  In a weird way, I don’t think I was ready to just give in to the thought that I had no control over much of this.

Anyways, TJ’s main allergist as always explained to us that the numbers only show the likelihood of a reaction, not severity. They can change from day to day and aren’t even super reliable.  You can have false positives which is why in-office food challenges are the only true way to know if one if allergic to a food.

The following site explains this further…

https://labtestsonline.org/understanding/analytes/allergy/tab/test/#what

TJ’S LEVELS IN DECEMBER AND APRIL

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Notes: Peas and Soy were both either false positives or outgrown.  In my heart, I believe they were false positives.  Coconut is a true allergy that caused mild vomiting despite being so low in numbers.

Donating Breastmilk

While I am still going to give it a few more days, I have started to research how to donate breast milk.   I have 228 ounces still in my freezer pumped between May 20-June 12. TJ’s skin is on day 4 of being so much better and much less itchy.   It has also been 4 mornings in a row that I did not give a bottle of breast milk.   I still find it so crazy that such a small amount of coconut could be affecting his skin.   And by small amount I mean that I only used a serving of coconut creamer in my morning cup of coffee.   It amazes me that even after my body metabolizes it, it can still be irritating his skin through my breast milk.   Coconut was considered his lowest allergy and thought to not even be a true allergy by both allergists before his food challenge of it.   In fact, Allergist #2 told us that we could try coconut at home without a doctor.

Unless there was something else in my milk that I had been eating that he is allergic to that wasn’t tested.  I don’t even know what that would or could be… cinnamon? tomato? Regardless, I will probably be donating these 228 ounces of milk soon so I looked up some organizations and Facebook pages. If TJ can’t use this, then I definitely want another baby to be able to so we smile on..  

Two of the websites I found are:

http://www.hm4hb.net/

http://www.nationalmilkbank.org/

“Manufactured on Dairy Equipment” – (Reposted from May 22)

Today, I woke up feeling even more confident and positive about the introduction of soy to TJ’s diet.  The plan was to add 1 ounce of Nature One’s Baby’s Only Organic Soy Formula for toddlers to his 11:30 am bottle.   Then, tomorrow, we would add 2 ounces and so on until this bottle is solely the soy formula.   However, as I prepped his lunch, I noticed the label of the formula stated “U – Pareve Ingredients – Manufactured on Dairy Equipment.”  WHAT!?!?!?!

From everything that I have been told, foods with this label are not safe for people with food allergies.   Since TJ is allergic to dairy, a label like this means cross-contamination is possible.   However, why did both an allergist and a nutritionist tell us to use this formula? I sent the information to my husband who then emailed both allergists, the nutritionist, and our pediatrician.

While we wait to hear back from all of them, we used organic soy milk instead.   I mixed 1.5 ounces with 4 ounces of breast milk in a bottle.   However, he only drank about 3 ounces because he has been eating a lot of food today! Yay!!!

  • Breakfast – a banana and jar of apples mixed with a lot of buck wheat
  • Lunch – a turkey meatball (that we now make with buck wheat, sweet potatoes, and canola oil and TJ seems to enjoy much more)- squash and sweet potatoes and then some blueberries with apples and buck wheat

It is a great relief that he is starting to eat more solids and his chewing has also improved a lot in the past week. Hoping that this will all help to increase his hemoglobin/iron levels.

Earlier in the week, I had left a message with a representative at Organics Happy Family about their products.   I had found the following link that lists the allergies present in each of their products.   However, I also saw that on their rice cakes, it mentioned that it was “produced on equipment that also handles soy and milk.” I noticed this as TJ ate one of the rice cakes and loved it! I wanted to check to see if this is the same with their puffs that he loves and eats daily. There was nothing on the label but I wanted to double check.   According to this chart, both puffs and the rice cakes we purchased contain none of the top allergens which includes dairy.

http://happyfamilybrands.com/world-of-happy/nutritional-resources/allergy-chart/

Right after I discovered the formula label, a representative from Happy Family called and said that all of their products including the puffs are manufactured on equipment that also handles dairy and other allergens.   However, they don’t put that on their labels because it is not required by law.   (Only in Europe where the rice cakes are produced is that required by law.) However, they follow strict cleaning and testing codes before packaging products to make sure that they are free of the allergens that they have listed on the chart above. Why is this all so complicated!?!

So now, we will just smile and laugh on at how confusing the world of food allergies is as we wait to hear back from our doctors….

Elimination Diet – What the Heck Did I Eat? (Reposted from March 2015)

So like I posted earlier, after a few weeks of feeling as though I was losing my mind, no joke, I finally figured out some meals and products that worked for us.  These are all products and foods that work with my son’s allergies.  These may vary based on the child and allergies. Based on our blood work, my son is not allergic to rice, corn, buckwheat, sunflower oil, potatoes, sweet potatoes, peaches, pears, apples, avocado, bananas, string beans, carrots, squash, chicken, turkey, and beef.   Although sometimes, bananas and avocados irritate his eczema a bit. During those times, I limit his intake.

As far as amount and calories, I found that my body was metabolizing all of these foods much quicker.   Since I was starting to lose weight, I needed to increase my overall daily intake by doing the following:

1) Eating a whole avocado every day

2) Adding a protein shake most days

3) Snacking more often

4) Adding more protein to diet (chick peas and more chicken/turkey) – Be careful with chick peas though as some babies may have a reaction to them.   My son did not.

5) I also added more sugar to my diet.   It seemed to help with my random dizziness at the start of this diet.   Since my blood work came back normal, I think anxiety and lack of sugar caused it.

6) I started to also watch “empty” calories, those calories that really did not add nutritional value.

7) I continue to take my prenatal vitamins that I took all throughout pregnancy and breastfeeding as well.

– Rainbow Light Prenatal One Just Once Food Based Multivitamin – http://www.amazon.com/dp/B007CYYC92/ref=sr_ph?ie=UTF8&qid=1425564912&sr=1&keywords=prenatal

-Nordic Naturals – Prenatal DHA – http://www.amazon.com/s/ref=sr_nr_p_89_4?fst=as%3Aoff&rh=i%3Aaps%2Ck%3Aprenatal+dha&keywords=prenatal+dha&ie=UTF8&qid=1425565060

BREAKFAST FOODS

MID-MORNING SNACK

LUNCH FOODS ( I either eat a salad or eat a sandwich for lunch.)

1) Salad: grilled chicken, blueberries or pineapples, spinach, tomatoes, chick peas, avocado, sometimes shredded “cheese”, croutons, a little bit of dressing or lime juice with salt and pepper

2) SunButter and Banana Sandwich –  I love peanut butter and banana sandwiches.   Since I can’t have peanut butter, I have started to eat sun butter.   It is amazing!

MID AFTERNOON SNACKS

DINNER FOODS

I usually eat the following four dinners.

1) Turkey burgers mixed and cooked with crushed croutons (loaded with avocado, tomatoes, daiya shredded cheese, and on the brown rice bread listed above)

2) Chicken Stir Fry or Wraps(grilled chicken, onions, peppers, pineapples, fennel, garlic with brown rice and cooked in a marinade that contains ketchup, pineapple juice and a gluten and soy free marinade)

3) Homemade pizza (loaded with grilled chicken, roasted red peppers, onions and pizza sauce)

4) Steak wit asparagus and roasted potatoes

DESSERT

1) Cereal or granola

2) Ice cream was my go-to snack before I learned of my son’s coconut allergy.   So Delicious Dairy-free Coconut Milk Cookie Dough ice cream was my favorite! http://sodeliciousdairyfree.com/products/coconut-milk-frozen-desserts/cookie-dough

Elimination Diet – What I Cut Out? (December 2014-June 2015)

On December 24, 2014, I started to follow a strict elimination diet.   I eliminated the following ingredients from my diet. Then, in January, I also cut out soy and sesame. I also provided the website resources that I used to determine what was safe and what was unsafe. I did this diet for six months so that I could continue breastfeeding my son and had no negative side effects when I added everything back in June.

1) All dairy products

http://www.foodallergy.org/allergens/milk-allergy

2) All egg products

https://www.foodallergy.org/allergens/egg-allergy

3) All wheat products (Be careful of certain salad dressings and marinades.)

https://www.foodallergy.org/allergens/wheat-allergy

4) All tree nut products

https://www.foodallergy.org/allergens/tree-nut-allergy

5) All peanut products

https://www.foodallergy.org/allergens/peanut-allergy

6) All oat products (Be careful of products that contain oat.   For example, we were using Aveeno’s Baby Eczema Lotion and Bath wash for months for my son’s eczema.   However, it contains oat.

http://www.aveeno.com/category/our+ingredients/oat.do?c=100681.100685&sortby=ourPicks&pp=18&page=all

7) All barley products I am not sure that I was actually eating any.

8. All soy products

From Allergist #1: “I would have him avoid all soy and sesame. HOWEVER, soybean oil, soy lecithin are okay to consume. He should avoid all soy flour or soy protein ingredients.” Therefore, I did this in my diet as well.

https://www.foodallergy.org/allergens/soy-allergy

9) All sesame products (Since my son is not allergic to sunflower seed, I only look for sesame oil and seed in products to avoid.)

https://www.foodallergy.org/allergens/other-allergens#seed

10) Most coconut products (All but my coffee creamer.)- Allergist #1 said that this was okay since his allergy is low, a 0.6.  Now, looking back at this, I should have cut out coconut too.

I was someone who ate Honey Bunch of Oats almost every single morning and loved pizza on weekends.   While I admit, I cried at first and thought it was impossible.   Nothing is impossible!

“It doesn’t matter what you’ve heard. Impossible is not a word” – Kutless

I found some great substitutes.   I shared these in my post.  “What the Heck Did I Eat?”