First 3 days

Day 1 went well. It's just a capsule. We mixed it into our daughter special winter treat - hot cocoa. She drank it up.  I thought she didn't even notice.. boy I was wrong. She asked me later in the afternoon if I added anything into her cocoa. I told her it was "baby yogurt"... It's tough to have a 3.5 year old comply with a treatment. It's an interesting age where they are much more aware of the others than we think.  It's a vicious circle as eczema doesn't like stress and how can you eliminate stress when you know you are different. When you go to a friend's birthday party, all ate cake, you don't - even though we smooth it out as much as possible by bringing a cupcake / treat she can eat... it's not easy...

Day 2 went better than expected. She asked for the powder to be mixed into her morning smoothie.. wow, it was a relief indeed. My only worry is it won't last long as we need to up the dosage every day and soon it won't taste good.

Day 3 has been more of a challenge. Smoothie didn't do the trick today. She didn't drink it all, but at least more than half. We also had to start the creams today. That went well, once again beginners luck, and it's only to the ankle today. Fingers crossed it won't be too bad.  Bath additives were supposed to start today too, but she was too itchy to try.  We'll start tomorrow, forcing it will only backfire. One step at a time. This is not a sprint but a marathon.

New Hope

The journey continues. We've been waiting for this appointment for about six months. We were quite fortunate that our allergist has connected us with Dr. Li and she took our daughter as her patient.

This link gives some background on Dr. Li and her breakthrough allergy research:

http://asthmaallergieschildren.com/traditional-chinese-medicine/

Dr. Xiu-Min Li has been named the recipient of the 2016 Future of Health Technology Award for her research and clinical work on botanical drugs for asthma, food allergies, and other diseases of the immune system, and for her vision to make them available to patients through integrative medical practice. The award will be presented on May 2, 2016, during the 20th Anniversary Future of Health Technology Summit™ at the MIT Media Laboratory in Cambridge Massachusetts, USA.” (Previous winners include Dr. Marvin Minsky and Dr. Raymond Kurzweil)

Allergies are a mixed bag, there are always good news and bad news. Good news is that there is hope to get the Ige levels down. The bad news is it will take years. They are high and getting higher every year.

Dr. Li talked about the cell memory multiplication and the worsening of Iges due to prolonged steroid cream use to keep the eczema at bay.  So here we are committing to start a new journey. A journey where we hope to achieve the first milestone of phasing out the steroids in the next six months, before we start tackling the allergies.

It's always great to meet the other parents in the waiting room. You know it's intense, when we all exchange our total Ige levels as we connect - 3k, 5k.... odd talk to those who are not in it day in and day out, but very real for all of us.

This new journey is not going to be easy, I pray that there will be no adverse reaction to the treatment and we can actually go through with it.

It's not a walk in the park. We have a set of capsules to be taken internally, we have a set of creams, bath additives and it's not a one time thing. We drafted up a treatment schedule for full clarity of administration of these elements. This is intense, the most intense routine we have yet had to do!

Fingers crossed, it'll work!

Auvi-Q Recall

If you're one of the Auvi-Q epipen holders, please get it replaced with another product and follow instructions below to get a refund for the difference in cost.

https://www.auvi-q.com/

Replacement and Reimbursement Process:

https://www.auvi-q.com/recall-return-and-reimbursement-process

We've got replacements in and requested the return package. Hope this will be a smooth process!

Easy Allergen-Free Corn Muffins

These are our family's favorite muffins. They are super simple, everyone can eat them and you can also modify the recipe to make them into corn bread (i.e. less sugar). And the best part, they are so quick you can even make them for breakfast.

Ingredients:
1 cup of cornmeal
1 cup of all-purpose flour (you can use gluten free flour if you have a gluten allergy)
1/3 cup of sugar
2 teaspoons of baking powder
1/2 teaspoon of salt
1 egg, beaten (that is if you tolerate cooked egg, otherwise substitute with apple sauce)
1/4 cup of oil (this could be vegetable, canola, coconut)
1 cup of liquid (this could be soy milk, rice milk, e.t.c.)

Directions:
Pre-heat the oven to 400 degrees F. Oil muffin pan or line with paper muffin liners.

In a large bowl, mix together corn meal, flour, sugar, baking powder and salt. In a separate bowl mix egg, oil, and liquid. Gently stir in the liquids into the solids.

Spoon batter into prepared muffin cups. Sprinkle coarse brown sugar on top.

Bake at 400 degrees F for 15-20 minutes or until a toothpick inserted into a muffin comes out clean.

Enjoy!

Back to School Tips

This is a great article published by The Allergic Living magazine.

http://allergicliving.com/2014/08/21/managing-dairy-allergy-at-school-steps-to-success/

It reminds us that our children are covered by the disability act, so that we can be armed with it to help us ensure their safety in school. Sending an allergic child, particularly a really young one who is not necessarily able to speak for themselves, is heart wrenching. I'm still dreading this in anticipation. One more year to go before my daughter starts pre-K. I know I'm not alone.

Our allergist always says, "if people don't think that you're being difficult, you're not doing your job".

Wishing all kids a healthy and emergency-room free school year!

Who is the real bully for an allergic child?

Perhaps it's the caretakers that are more potent to your allergic child than other children.  I was on the playground with my daughter the other day and we were playing in the sandbox.  I noticed an older woman in that same sandbox with us with two children. Who knows, she may have been either their grandmother or a nanny.  She took hard boiled eggs out and was feeding the younger child the eggs right in the sand pit. Him being a toddler he kept running away from her and she walked around chasing him.

First of all, you don't feed a kid in the sandpit, just a matter of courtesy to keep the sand clean. Secondly, when I saw that she was feeding him an egg, my "internal alarm" went off. Even though my daughter is allergic to egg white, she has no issues with egg white contact when it is fully cooked. She can also consume small traces of it as long as it is baked.  She is lucky in that respect, however, not all children are. Some children have issues with contact and consumption of both raw and cooked egg.

So I politely reached out to the woman and said that perhaps it is best for her to feed her child outside the sandbox, perhaps on the bench since there are children with severe egg allergies.  Her response: "children let's go, don't play with that little girl over there". She said it loud enough for my daughter to hear. How poisonous is that comment. As they say, don't exclude the child, exclude the food and I'd add out of the sandpit. Especially that my daughter has to deal with a lot of "no we can't eat this" all the time already and now she hears another adult telling her children "don't play with her".  My blood boiled hearing this, but I just rolled my eyes, I didn't think it was worth giving this woman a lecture on child psychology or dive into the fact that I was more concerned of other children in this case, not necessarily my own, e.t.c. she was probably a bully herself when she was a young kid....I'm just disturbed by the lack of sensitivity coming from a grown up and the example she's setting for the kids she raises. Of course, the older girl was completely confused why her caretaker told her not to play with my daughter. So not to make the situation more awkward I got my daughter to go with me and dig for some treasures with other kids in the sandpit.

Children imitate what they see, let us try to live up to the expectations we set for them....

The Silver Lining of Anaphylaxis

Is it fun to have allergies that are severe enough to cause anaphylaxis - no. Is it fun to read all of the food labels and lug a bag full of food that is safe to eat with you all the time and ask the waiter in the restaurant to speak to the chef and go over the food preparation procedure - no. But there is definitely a silver lining there also... and here are some perks:

1. You always know what you are eating, down to every ingredient. This makes you very conscious about your food intake and therefore leads you to eat healthier.
2. You mostly eat home-made food, the food you prepare yourself or the food your loved one prepares for you.  Hence it is made of fresh ingredients and always tastes better.
3. You don't eat food that is canned / preserved e.t.c. So you're not exposing your body to all of those toxins but mostly consume food that is made out of fresh raw and unprocessed ingredients.
4. You eat fresher ingredients even when you go out to eat.  Even if you get something less healthy such as fried fish or say chicken or another fried item, the chef starts a new batch of oil for you as the existing oil is contaminated.
5. You get creative with your food.

Basically you eat cleaner, fresher, more wholesome ingredients. Yes, it takes you longer to get to a meal and it consumes more time and effort, but it may all be worth it and lead to a healthier life.

But best of all, you are reminded of the fragility of life and what a gift it is and therefore cherish every moment and celebrate life! If you're a parent of a child with life-threatening allergies, you feel blessed having this child in your life every single moment even when they are having a meltdown.

There is always an upside!