Category 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:


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!

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…



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.

What’s On the Menu- TJ’s Food

Mealtimes are becoming better and better.   However, for awhile there, they were so stressful.  While we are very limited in what we give TJ, there are great resources out there for babies/toddlers and eating.  Here is one of my favorites.

1) – TJ loves the meatball recipe especially.   We just modify it, replacing some of the ingredients with ones that he can have such as buck wheat.

2) Also, the following site was extra helpful with how to add more iron into TJ’s diet. Fingers crossed that his levels went up when he is retested in two weeks.

3)This third site is a great resource that I do plan to use when I am ready.  (As of now, I am not quite there yet.  Keeping things simple and as they are for the next two weeks until this next round of blood work is done. Why add more foods when TJ has been really doing so well with his current diet? At least for now…)

4) The following is the chart that we try to use to ensure that TJ is receiving well-balanced meals.  Grains are most difficult for us due to being limited with wheat, oat, and barley allergies.   Also, egg is present in most breads and baked products which makes it even more difficult. IMG_0772(1)

“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.

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….

The Confusing World of Food Allergies (Reposted from May 18-19)

May 18

We went to a nutritionist and allergist #2 at Mount Sinai.   Since we were there already for the nutritionist, we decided to review TJ’s latest blood work with her. It was an all afternoon visit, getting there around 2 and not getting home until after 7.   However, we got a lot of promising, encouraging advice and guidance.

1) To start,  the next step was to ask our Allergist #1 to do a soy milk challenge instead of coconut milk challenge on this Wednesday (TOMORROW!!!! ugh!!!)  This was because Allergist #2 is 99.9% sure he will tolerate soy which will open up his diet a lot!  Soy was a 1.1 (level 2 allergy) and coconut milk was a 0.6 on allergy scale (level 1 allergy). However, she said kids pass the soy milk challenge with a higher number than 1.1 which means they can drink and eat soy products.

2) Allergist #2 also said that it is a great sign peanuts, soy, and sesame all went down.  Once again she thinks wheat and oat ( gluten ) may not be a true allergies and instead TJ may tolerate them. After a soy challenge, she suggests we line up a coconut milk challenge and wheat one. Then if he passes the wheat, she advised to set up a baked egg one. (Egg is his second highest allergy.)

3) She wants me to continue to add wheat to diet since all I have added back since December is regular wheat pizza from our favorite pizzeria nearby and I only eat this once a week. She also told me to add soy back to diet.

4)  Milk/dairy allergy is bad. =(  She doesn’t really think it’s due to contact or exposure since we are both strictly avoiding. Instead, she thinks the increase from about 17 (level 3) to 53 (level 5) has more to do with it being his greatest allergy. Since TJ has grown a lot since December, his body is producing more ige antibodies for it. We need to be careful with dairy/milk residue and products touching his skin at day care or even kisses because if he gets hives from it it can cause more of an increase. Also he should avoid places like Starbucks and pizzerias that have steamed or airborne dairy.However, she also was very positive when she stated that he will probably outgrow dairy because most people do but it will probably take longer like maybe not until he is older than five. There are many studies too like a milk patch one that if need be, he can participate in to decrease allergy when he is a bit older.

5) In meantime, the Mount Sinai nutritionist does suggest we use an iron supplement for now even though the anemia is minor and retest iron in three months. This is not what we had planned to do with pediatrician’s help.

6) The nutritionist also provided many good brands and products for allergy free products like pancakes and waffles, etc …Some of these include Orgra Crispi Rice bread, Authentic Foods Rice and Corn Flour, Arrowhead Mills Buckwheat Flour, King Arthur, Brothers All Natural and Cherrybrook Kitchen.  I will post more about these products once we purchase and try them out.

7) The next time we get blood work will probably be in October/November to test levels.  Allergist #2 gave specifics of what to test for like peanut components, casein, and whey proteins. These will give a better understanding of his peanut and dairy allergy and they will be able to better predict his chance of outgrowing. A casein allergy takes longer than a whey protein allergy to outgrow.

8) We will also give Culturelle probiotics twice a day instead of once and follow up with both of them in four months

This sounded great until we reached out to Allergist #1 and our pediatrician about all of this.   Here is where it all becomes a tough call…We have two conflicts.


– When we asked Allergist #1 about switching, he said, ” I estimate 50/50 chance of passing soy.   We can certainly try it this week.   If there is a reaction, I may need to give him an injection of Benadryl or epinephrine. It is not necessarily dangerous, but I just wanted you guys to be mentally prepared for the potential risks.”

– That is much different that Allergist #2′s outlook of 99.9% chance of passing with his level.


– Our pediatrician who we LOOOOVE does not agree with an iron supplement.   Since his level is only 9.9 and he is not symptomatic, she suggests rechecking in a month or two and agree to an iron supplement if he is lower then.  She explained that iron is absorbed much better with foods rather than a supplement.  She even discussed it with her colleague and he agreed with her.

– The nutritionist provided this though.

It is 7:30 on the night before TJ’s 8:30 am food challenge and we have no clue what to do. I just pray that the right choices are made clear to us.


When I informed TJ’s teachers that he was going to be out tomorrow due to his first food challenge of coconut milk or soy milk. One of TJ’s teachers asked me, “Oh he can’t have cow’s milk ?”

Mind you, this is after I have been constantly keeping the teachers and office staff informed and updated about TJ’s allergies and levels.   I have spoken to each teacher individually in the past.  In addition, I recently explained to them the severity of the dairy allergy.  I also gave the office staff a print out about the signs of and steps to take with anaphylaxis, asking them to hang it in his classroom.   It is still not hung…I will be adamant about this once we are back at work and day care on Thursday. I will be “that mom” because if I’m not, who else will have his back.

Praying for answers as I struggle to smile on but I know that I have to for my little guy who still smiles on and on even when stuck in city traffic …

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

2) All egg products

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

4) All tree nut products

5) All peanut products

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.

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.

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.)

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?”