Tuesday, March 14, 2017

Questions & Comments You May Here If Someone In Your House Has A Food Allergy

The food allergy world is so different from the world people live in that have never had to deal with a food allergy in their home. It's actually really shocking how uneducated the general population is when it comes to food allergies and food knowledge in general. You must be on your A-game at all times with food allergies, your super hero cape can never go to the dry cleaners because you have to be aware at all times, or it could be deadly. We have had food restrictions in our house for a very long time now, but once Squeak was born things changed even more. Due to her severe dairy allergy, I feel like we are in detective mode 24/7. She actually had many food allergies, but slowly has been out growing them and passing her food challenges at the allergy clinic. We are now down to dairy with her, but its still severe and won't know for sure if she will out grow it or not. We have learned how to keep her safe, and educate others around us. 

She starts preschool this coming fall and its actually pretty terrifying for us. She is contact reactive, that means if someone touches dairy and then touches her, she could have a reaction. Snack time at preschool is something we are going to have to discuss with the staff members in length. Right now she is in ECFE and snack is at the very end of class. Thankfully the children wash hands before snack and Squeak has a little table pushed up to the large table and she sits at the very end so she is far away from the other snacks and children. It works for now but things could change. Right now we leave right after snack, I don't have to worry about the other children not washing hands after snack and then playing with toys with dairy on their hands. If Squeak touched that toy, she could have a reaction. Preschool is a different set up and snack is typically in the middle and not the end of class. Dairy is in so many foods its ridiculous. And of course what are the common toddler snack foods- cheese sticks, gold fish crackers, most things containing dairy. Its everywhere. Those dang orange gold fish haunt me. 

Anyways I wanted to give a little background to our lives and still add a little humor to this post. I know allergies aren't funny, but sometimes you just have to laugh at life to keep your sanity. Seriously, its amazing how uneducated people are. 

What you might hear others say to you when you have food allergies in your family:
  • "So she can't have eggs?" (Eggs come from chickens, not cows!!)
  • Asking a waiter to help you find something on the menu that doesn't contain dairy and they refer you to the gluten free menu. So, apparently dairy= wheat, barley and rye now!
  • "Thank god she can still have cheese!!" (Seriously?) 
  • "But butter is ok, right?" (Um, no! Butter comes from cows too! Butter is literally milk churned)
  • "Oh, just buy lactose free milk," (Lactose free milk removes the lactose, NOT the dairy)
  • "So she can just eat the dark chocolate." (Most dark chocolates also contain dairy)
  • "Oh the home made pudding is safe, I made it with semi sweet chocolate chips." (If it doesn't say dairy free right on it, it is not indeed dairy free)
  • "Oh my gosh what do you eat?"
  • "A little bit isn't going to hurt them." (Very false)
  • "What is an epipen and what does it do?"
  • "Well, feel lucky it isn't life threatening like a peanut allergy." (This is a huge misconception. ANY food allergy can be life threatening, it doesn't matter what the actual food item is. If someone is allergic, it can be life threatening)
  • "Milk is good for you, how could this be?"
  • At a coffee shop- "Do you want whip cream with that?" Um, no!
  • "Yes, this item is safe, it says gluten free." (Insert eye roll)
  • "Oh, so she has an intolerance?" (No, an intolerance can cause stomach trouble and bathroom issues. An allergy can be life threatening)
  • "Can't she just pick the cheese off?" (No, if any dairy at all was touching the food, it is not safe)
  • "You can have a milk shake, its dairy free." (Um, what?)
  • "He can have those cookies, there is no milk, just lots and lots of butter." (Apparently that cow the butter came from was a special breed of dairy free)
  • "Oh no, what will you do for calcium?" (Calcium is in so many other foods)
  • "He wouldn't have had that dairy allergy if you would have breast fed him." (Very false)
  • "You probably caused her to have a dairy allergy because you were dairy free when breast feeding." (Also, very false)
  • "He would outgrow that if you just used essential oils." (False, oils can not fix a food allergy)
  • "No, he can't take a bite off of your plate, you have unsafe food on the same plate. But I licked off my fork really well so it should be safe." (Nope, it doesn't work that way)
  • "Is there any dairy in that? No, I used yogurt as a substitute." (Yogurt is dairy)
  • "My child outgrew her dairy intolerance before she was 1, why hasn't he?" (An intolerance isn't the same thing as dairy. Also, some people out grow their food allergies and some don't. There is no rhyme or reason, it is just different for everyone)
  • "So dairy allergy is probably the easiest to manage right? You just don't drink milk." (A dairy allergy is actually considered the hardest food allergy to manage because dairy is in SO many foods)
  • "Oh my gosh, our family would never be able to live with out dairy." 
  • "Yes, I have that too, lactose intolerant is no joke." (Insert eye roll again)
  • "I bet raw local honey would help."
  • "Have you tried organic milk?" (Organic won't matter in a true allergy)
  • "Wow, he is like the boy in a bubble." 
  • Oh god, I hope she will out grow this so she can drink milk some day."
  • "You mean she can't have anything in that ice cream shop?" (No, it is unsafe)
  • "Oh, its just a little butter in a really large pot of soup, I am sure she will be fine." (ANY amount of dairy is unsafe with a dairy allergy)
  • "But he will outgrow it right?" (You never know from person to person)
  • "If you cant make your own cake you can just pick up something from the bakery." (Unfortunately that isn't safe)
  • "Well I don't trust your allergist is correct."
  • "You are just an over protective parent."
  • "She can't have a reaction just from being touched." (There is something called contact reactive, if someone touches dairy and then touches the person allergic, that's all it takes for a reaction. There is also some that react to it being in the air too)
  • "She can have things like goldfish because those aren't dairy." (Um, what?)
  • "Oh my gosh, he can't even eat ice cream?"
  • "If we give him benedryl can he eat it?" (That is a big no and extremely dangerous) 
  • "You can't watch their every move, just them him be a kid."
  • "I don't know why we all have to go allergy free here just for one person."
  • "You carry an epi pen right? So he will be fine if someone forgets." (That's not how it works, its a life saving device, you don't just carry it around so someone can be complacent because they don't feel like caring)
  • "Why does my child have to suffer during the class party and not get certain foods just because your child has a food allergy?" (I can't even nicely comment on that one, just wow!)
  •  "Well back when we were growing up, we weren't allowed to be picky like your kids." (Another WOW)
  • "Well can't he just stay in one room at the party so the rest of us can eat what we want?" (Yes, because he is a small dog we can kennel, really?!)
  • "Well what the heck does she drink if she cant drink milk?" (There is almond milk, flax milk, coconut milk, cashew milk, rice milk, oat milk, hemp milk, water, juice, smoothies. The options are endless)
  • "What are your allergies? Wow, that must be why they tell you not to stand in front of a microwave when pregnant."

Wednesday, March 1, 2017

Easy Homemade Dairy & Gluten Free Yogurt Drops

The girls and I thought we would try and make home made dairy free and gluten free yogurt drops! It was super easy and the kids inhaled them. Piglet likes yogurt that has been frozen better than the soft form from the fridge, so she loved these. Kite Hill brand is an almond base yogurt and our favorite safe yogurt. In all the years we have been dairy free I haven't found a yogurt that is comparable to dairy containing yogurt. Kite Hill is the winner by far, I can finally eat yogurt again, it's so good!!!! Here is what you need-

Yogurt of your choice
A ziplock bag or a frosting tube/bag
Scissors to cut the corner of ziplock
Cookie sheet
Parchment paper or wax paper
Line a cookie sheet with the parchment paper or wax paper and set aside. Fill your ziplock bag or frosting tube with your yogurt. We decided to use a little frosting tube we had on hand. We thought maybe it would make a fun little swirl design but since yogurt is so soft you cant really see the design. 
You don't have to squeeze very hard or you are going to have a giant yogurt blob on your cookie sheet. Apply gentle pressure in the form of little dots and line them all up on your cookie sheet. 
When you are done, pop the cookie sheet in the freezer for a couple hours and your healthy and fun snack is ready! 
You can take them off the paper and put them in a container to store in the freezer! Or if you are like my kids, you will eat them all up before you can even attempt that step! The girls loved them and they were gone in no time. I am going to have to do this with a bunch of yogurt so we have this fun snack ready and waiting for us in the freezer. Frozen almond yogurt dots taste just like frozen yogurt from the store. It was a great snack! 

Tuesday, February 28, 2017

Rare Disease Day

February 28th is Rare Disease Day. This means there are some of us that can help spread awareness and educate about certain disease and disorders that effect our family.  There are a few in our family, apparently our genes don't like us. Today I am going to talk about Piglet and her MCADD. MCADD stands for Medium chain acyl-CoA dehydrogenase deficiency. If you would like to read Piglet's story click HERE. Here are some facts about MCADD:

  • MCADD is a metabolic disorder. MCADD is a disorder in which your body is unable to break down fats for energy. Normally, fat is broken down into energy by "enzymes." This energy keeps your body running whenever it runs out of its main source of energy, a sugar called glucose. In MCADD,  a very important enzyme for breaking down fat, the medium chain acyl coA dehydrogenase enzyme is missing or doesn't work correctly. This means that people with MCADD can't break down fat for energy when they run out of glucose. 
  • Before Newborn Screening started to screen for MCADD a lot of babies died of "SIDS." We are forever grateful for Newborn Screening saving Piglet's life. And all it is, is a little heel prick at 24 hours old. What a difference a little blood draw can make
  • Since MCADD was discovered the percentage of SIDS babies has dropped DRASTICALLY! As much as 85-90%
  • Most people with MCADD should not go more than 4 hours during the day without fuel, aka food and drink
  • Babies with MCADD are not allowed to sleep through the night like an average baby. They must eat more often, depending on the age most get woken up to eat every 2-4 hours. Once they turn 1, many of the MCADD specialists have the baby add corn starch to their bedtime bottle which allows them to sleep longer stretches. The cornstarch is a slow release sugar so keep the baby's fuel going longer
  • Peope with MCADD have a low fat, high carb diet. Carbohydrates give the body many types of sugar that can be used as energy
  • Since people with MCADD are missing the medium chain enzyme, they cannot break down medium chain fats
  • If people with MCADD eat too much fat in their diet or eat medium chain fats, it can start to collect on their organs and over time it can it can cause fatty organs or organ failure 
  • Many with MCADD take L-carnitine daily. This is a safe and natural substance that helps body cells make energy. It also helps the body get rid of harmful wastes
  • About one in every 15,000 babies in the United States is born with MCADD
  • It is common for MCADD children to have a lot of leg pain once they are old enough to be more active. Once Piglet was old enough to talk she would tell us her legs hurt behind her knees. Its always been behind the knees for her but with others it can be general leg pain. Sometimes its also before they get sick, for her its just when she is active. In the winter its usually once a week, in the summer when she is extra active its every day
  • MCADD can cause a metabolic crisis. A metabolic crisis may start with symptoms of fever, diarrhea, and vomiting. This is usually followed by low blood sugar. If a metabolic crisis is not treated, it can lead to breathing problems, coma, or death. Treatment is going to the ER/Hospital for a D10 IV until the sickness has passed and the person is able to eat and drink enough again 
  •  Sometimes a child will become very moody or throw tantrums when they are in need of fuel. Thankfully people that are educated about MCADD know to feed the child and get some fuel in them. 
  • Most people with MCADD are like the average person as long as they eat and drink regularly and go into the hospital for their D10 IV when they become sick