The first food I plan to eat when I am free

drumstick-classic-vanilla-fudge-small

When I am free of my peanut allergies, the first food I want to try are drumsticks. My parents said they grew up with them and they are a classic American treat. ¬†They do look really good and so I can’t wait to try it in a couple of months!

UPDATE: I did it, I ate one! I really wanted to have one of these first as they looked so good and my sibilings have been wanting to try them for so long. I finally had one, I really did like it, except the peanuts on top. ūüôā

I tried all kinds too- the classic, caramel, Butterfinger and they are all good, except the peanuts. ¬†I pick the peanuts off. However, my mom said I have to incorporate peanuts into my diet, so she won’t let me eat them now unless I eat them with the peanuts. ¬†I am getting more and more use to them. ¬†Eat through the peanuts fast and enjoy the rest.

drumstick-KatrinaThis was on my graduation day, January 5th, 2015!

My favorite ways to eat the peanuts and peanut flour

I wanted to share some ideas from someone who DOES NOT LIKE the taste of the peanuts to help others find creative ways of taking their peanut doses. ¬†I really do dislike the way peanuts taste. ¬†My siblings love it, but I can’t stand it and so I had to find creative ways to take them that would not make me gag.

I have met other kids in the program that also dislike the taste just as much as I do and so I thought it would be helpful to share what we did to help me get through the different stages of my treatment.  If you are one of the rare ones that like the taste of peanuts, then this may not be as big of a deal, but you will probably really enjoy these ideas anyway!

Ideas for taking the Peanut Powder:

PB &J– is peanut flour mixed in jam and then spread on a piece of bread. It was fine but it gets boring after a while.

Ice cream Р (never Oreo mint or any mint flavors РYUCK!) waffle cone, chocolate and strawberry where all very yummy for putting the powder in. You can put chocolate chips in the ice cream too, which helps mask the flavor even more.

Applesauce Рis fine, but not very good.  I really did not like to take it this way, even though this was the most recommended from the nurses.  We only did this a couple of times when we were in a bind/hurry.

Yogurt – You could try yogurt as this was another top recommendation, but I have never tried it. I personally don’t think it would taste good as that sounds like a terrible combination. So I did not try it.

In the end, mixing the powder with ice cream was the best at this stage of the treatment. 

Ideas for taking Peanuts: (I prefer the unsalted peanuts that are lighter in color after being shelled, I know, I am picky, but there is a big difference in taste between light and dark and salted and unsalted)

Chocolate РGood with chocolate, yummy when peanuts are in clusters with chocolate. My mom would actually make me peanut clusters.  It was really easy. We pretty much started doing this from the first week I had a whole peanut.  Basically, we just melted safe chocolate chips and then my mom would lay out the doses of peanuts on wax paper.  So if it was 1 peanut per dose, she would make 14 piles of one peanut (14 doses per week when you are taking them 2 times per day). Then she would melt the chocolate chips in a glass bowl and just pour a little over each dose.

We did this each week with the peanuts and chocolate increasing.  We stored them in a plastic container in the fridge and it made it very easy and convenient!

Popcorn¬†– is not very tasty but you can try it if you want. My mom thought this would be a great way to eat it, but I really didn’t care for it. However, you may like it, especially with some chocolate drizzles.

Plain M&M’s –¬†if you can’t have the peanut M&M’s. I can’t have the peanut M&M’s because they are made around Almonds, another one of my allergens. ¬†But the original M&M’s now just say “may contain peanuts.” We read online somewhere that the chocolate that is used for the M&M’s is first used to coat the peanut M&M’s and then they use the leftover chocolate to create the original M&M’s, so there is a good chance they do contain peanuts. ¬†But once you get to the point where you can have products that say “may contain peanuts” you can use these. ¬†My doctor let me eat things that said “made around peanuts” or “made in the same facility as peanuts” after I finished my 4 peanuts twice daily week. ¬†BUT… he said I could not eat anything that said “may contain peanuts” until after the treatment. So since my peanut graduation, I have been using regular M&M’s. ¬†This has been my FAVORITE way to take them so a great maintenance dose solution!

Ideas for taking Peanut Butter:

Let me talk about Peanut Butter for a minute.  My initial thoughts: worst thing in the world, never try it! 

Seriously, that’s how I feel and will avoid it at all costs. However, once I got to the point in my treatment where I could use peanut butter, we did give it a try. BAD IDEA!

My family got very frustrated as I had a teaspoon of peanut butter as my dose and it took me 30 minutes to eat it. I had apples, oats and chocolate chips, but it was all a very painful process.  I did not like it.  The taste and the consistency was just terrible. I much prefer the whole peanuts.

However, you may find that you like it! I wanted to note from my own experience and from talking with other kids in the program, if you used a peanut butter alternatives like Sunbutter, Wowbutter or something similar and you actually enjoyed it, you will most likely enjoy peanut butter. If you did not like the alternatives, it has almost been a one for one and you probably then will not like real peanut butter.

We did try the flavored peanut butters like the dark chocolate peanut butter РYUCK.  Too sweet and too peanut buttery at the same time.

Finally, one of the only ways I could take peanut butter was with bananas. ¬†I didn’t terribly mind dipping the banana in my peanut butter. However, the whole peanuts with chocolate or M&M’s was my preferred way!

For those reading this that have gone through the program, what were your favorite ways to take your doses? 

An Emotional Relapse Since Katrina’s OIT Treatment Began

This is Katrina’s mom. I wanted to share a story that just happened last week. After being in the OIT treatment program now for several months, filled with hope, fears being calmed and getting glimpses of what the future will be like without dealing with deadly food allergies – we had kinda forgotten the emotional pain and turmoil Katrina has experienced in the past.

You see this past week, she had an emotional relapse. It was weird, it was foreign, but yet it was so familiar at the same time.

Katrina’s personality has massively changed over the past few months. She has gone from a quiet, shy, cautious, scared little girl to being open, honest, a bit more social and full of joy on her face instead of the look of skeptiscim everywhere she walked. It has been beautiful and refreshing to see her personality bloom and blossom and become a whole new person, even emotionally.

That’s why last week’s event was so strange. It was really more of an emotional “episode” or really a relapse into her old self, but her old self wearing her feelings and thoughts on her sleeve.

Here’s what happened.

We went to a special church event, not at our normal church, but at a church we had never been too because they had a special community event that we wanted to attend as it is always nice to visit fellow believers from different churches.

Well, we weren’t entirely sure what this event would consist of until we arrived. They had a church service first and at the beginning of the service, they announced that there would be a German-themed buffet after the service, followed by bounce houses, crafts and activities for the kids.

Immediately, Katrina turned to me and said “are we going to stay for this?” I whispered, “shhh… I don’t know right now, we will talk about it after.”

During the course of the service, Katrina referenced or quietly asked me about this probably every 5 minutes. Each time becoming more panicked! I responded the same every time! She then started telling me, “I don’t want to stay for the party – I want to leave!”

Finally the service was over, and her dad and I finally got to discuss staying for the rest of the party. We really wanted to and didn’t really see a reason not too! The other 4 kids were dying to eat and play. So we decided to stay and Alex would run to the store and grab a lunchable for Katrina.

I explained this to her.

She lost it!

She started whining and nearly in tears, pulling at me begging to leave. I said I would go talk to the kitchen. I talked to the kitchen, they were professional caterers who are normally very well aware and cautious of peanut and tree nut allergies, but because of the German-themed foods- they had purchased sausages and sauerkraut that they unpacked and threw the labeling away without even thinking to check. They basically went through the list of everything else with me and there were a fair number of items she could eat, including the kid-friendly entree’ of mac and cheese. Nothing there had any peanuts or tree nuts directly, it was only avoiding foods where there could be a question of cross-contamination.

I told Katrina what she could eat and she still wanted to leave and was really just in a panic. I said, “if you are not comfortable, just eat your lunchable.” She said, “No, I don’t want to eat a lunchable here and I want to leave now!”

I was so confused. She had not acted this way since before week #1 of her treatments. I asked her what was wrong with her and why she couldn’t just eat the lunchable.

I finally knew…….

She said, “mom, I am embarrassed to eat it here in front of other people. It makes me feel like I am different, weird or that something is wrong with me, or that I don’t like them or their food. It’s just embarrassing, ok!!”

That made sense. In fact, in that moment, many things over many years made sense.

She very often would throw a fit about eating out, eating at potlucks, eating at other people’s homes and we always brought her own food from home, from a safe fast-food restaurant or even lunchables to ensure her safety. She forever and always hated having to bring and eat different food – which is why she would throw a fit and make every other excuse for not going.

She would give excuses like: “I don’t feel well so I don’t want to go”, or “I don’t like going there”, or the most common was “I am too tired to go and want to stay home.”

But never did she say she was embarrassed! She never wanted to admit embarrassment about her different life than everyone else. She didn’t want to face it and this was and would have been plaguing her for the rest of her life, always and forever making every.other.excuse. to not have to deal with or think about how she really felt.

She was even embarrassed that she was embarrassed. I was shocked that in over 8 years of living this way, she never told me why she really protested everything we did outside of our home. I suspected many things, including embarrassment, but until someone point blank tells you, it’s not super clear.

In that moment, I could see the emotion, stress, feelings and weight this child carried – emotions that were as clear as ever. I looked into her sad eyes, hugged her and said….”Katrina, you are going to be fine. I understand now why you want to leave. But I am confident that you will be okay today! Calm down, you can eat these things and then you can enjoy the bounce houses and crafts after. I am not going to let you eat anything that will hurt you.”

She calmed down, hugged me back and said “ok.”

Daddy came back with the lunchables, we hid them so no one saw and she enjoyed the list of “safe” foods, including a heaping plate of mac and cheese.

Then off she ran for the next hour having the time of her life bouncing and crafting and forgetting all of her cares again.

It was beautiful to have her share and be so honest with me, then to trust me and then to truly enjoy her time. In the past, the playtime would have been just as stressful for her as she would have worried about all of the kids around her, what they ate, what they touched that she would touch…. but she let it all go and the memory of seeing her run around and play with a big smile on her face and happy as can be in a strange place around strange people and feeling more free than ever.

A Family Came From Australia To Get OIT Treatment From My Doctor, And I Live 5 Minutes Away

I wanted to share this video regarding a family that moved here temporarily to get treated by my doctor, Dr. Jones, for OIT treatment.

My dr. has treated food allergy patients from all over: Hawaii, Idaho, Wyoming, Nevada, Arizona and now Australia. They are all coming to see him as he is one of the best in this field and treatment.

I feel so blessed to have been doing this treatment at all in the first place, but so far, I am the closest patient – I only live 5 minutes away from the doctor’s office. That is yet another miracle!

I like this video as it gives me even more confidence in what Dr. Jones is doing for me.

What I thought about my first peanut

It was first peanut day! Let me tell you, I thought it would take forever to get to this point.

As this day approached, I was filled with excitement. ¬†I didn’t know what to expect, except that maybe they wouldn’t taste the greatest because I really didn’t like the powder. However, I really couldn’t wait to actually try them!

When it came to actually trying it, I must say, I was very surprised.  Not surprised by the taste, because they were disgusting like I thought they would be, but by the texture.

I really thought that they would be soft like a bean, but was very surprised to put it in my mouth and “crunch” down. It was weird!

I said to my parents, “I thought they were soft and squishy, like a bean!” I then asked my parents if all nuts were crunchy?!? I just had no idea as I had never really seen them in person, let alone touched them, let alone eat them.

But now, for the first time in my life, I can actually say I have had a peanut!

What is Oral Immunotherapy (OIT) or Oral Desensitization?

Hi There, this is Katrina’s mom. ¬†I am writing this blog post instead of Katrina dictating to me. ¬†We thought it was important to explain what Oral Immunotherapy, a.k.a OIT is. ¬†It is also known as Oral Desensitization.

In a nutshell, OIT is a method of curing food allergy patients by basically allowing their bodies to become immune to whatever food they are allergic to by feeding them very small, calculated micrograms of the food their are allergic to.

You may be thinking two things: 1. That makes sense, 2. That sounds scary and risky.

Well, these are the two things my husband and I have thought – that it makes sense, but it is just too scary to even consider. That was until recently.

You see, Katrina’s father and I have been watching the world of OIT for many years. ¬†However, it wasn’t something that we ever really thought could be possible for the anaphylictic super allergic food allergies, like peanuts. ¬†Although we had heard about this many years ago, it just never seemed like a reality – I mean¬†being cured from peanut allergies¬†would be a true¬†miracle!¬†

The world of OIT has changed, in our outlook and observation.  It was in a testing mode for a long period.  Even 2 years ago, we visited an alternative medicine practioner who claimed to be able to cure peanut allergies.  But the process did not seem safe, risky, accurate and perhaps not effective.

We walked out saying “no way” and never looked back.

But the medical field and some very caring doctors have been studying this for quite some time and studied under close research and development. This is a rare, but becoming increasingly popular treatment everyday under the guidance and aid of a medical doctor.  But it is not mainstream and only a few doctors practice this sort of treatment.

Again, the practice and idea itself has been around a long while, but the fact that it has hit mainstream allergy doctors who use a tried, effective, precise and calculated treatment plan is rare and hard to find.

How does OIT work exactly?

I wanted to share the information from the website of one of these rare mainstream medical doctors that practices OIT Treatment.

“We are one of the rare practices in the country that offers a breakthrough treatment program for people with food allergies. ¬†This treatment provides a long-term solution for milk, egg, peanut, and wheat allergic patients. ¬†It usually takes less than six months, and at the end of the program, most patients are able to consume the foods that once threatened their health with no allergic reaction. The treatment works by introducing minute doses of wheat, peanut, egg or milk in solution form for about 6 months, the time varying according to individual differences. The program progresses to small doses of the whole food for a number of months, allowing the patient to eat these foods. The treatment allows the vast majority of patients to overcome their wheat, milk, egg and peanut allergies.”

Basically, the patient is becoming desensitized to the food allergen with small, calculated doses of the food twice daily. ¬†This concept has been around for a very long time, it’s similar to allergy shots, only quicker when dealing with foods.

Here’s an article talking about the experience and testimony of an adult that went through OIT for peanut allergies.

One good and simplified explanation is actually from Princess Bride.  When we went to the first informational seminar about OIT, this video was played because it is a very good description of what OIT does.  Food is the poison for these food allergy patients. Minute 4:57 Р5:08 is a simple 10-second explanation!

Well, we found one of these rare doctor’s doing this treatment! And it is literally at our back door!

There are currently just a handful of allergy practitioner’s that are conducting OIT treatments in different parts of the United States. But it is becoming increasingly popular and we think that very soon, this miracle treatment will be hitting mainstream and close to many nationwide. ¬†But if you can’t wait for a doctor to come to your area, you wouldn’t be alone.

This is such an incredible opportunity for so many in the world, that there are people moving here for 6 months from all over the world to be treated. ¬†So that is an option too. ūüôā

My OIT Consultation

I met with Dr. Jones in May of 2014. ¬†It was my consultation. ¬†I still hadn’t decided if I wanted to do this. ¬†We met Dr. Jones and he tried to shake my hand, but I didn’t shake anybody’s hand. ¬†My mom said it would be fine to shake his hand as he is probably safer than anyone. ¬†But I still didn’t and he said, “That’s ok, she will shake my hand soon.”

Then we talked about the OIT treatment to the doctor. We asked tons of questions.

The more I heard about it, the more I listened about it, the more comfortable I got about it.  My parents asked tons of questions.  I was too shy to ask any, but the questions they asked helped me to feel more comfortable.

The waiting room was different than I thought.

I got a skin allergy test for environmental allergies. ¬†The skin allergy test is very uncomfortable. It’s so itchy and I hate when I have to do them. ¬† The doctor said he had to do the skin allergy test for environmental allergies so that he could see if there were any other allergies that we needed to get under control before I¬†started the OIT treatment for peanuts.

That test results were really disappointing and almost caused me to not want to continue. ¬†I knew that I had extreme dog and cat allergies from previous tests, but what I didn’t know was that the worst environmental allergy I have is to horses. ¬† I had never been tested for them before and they were my highest environmental allergen. ¬†The doctor came back in and said I would need to do my best to avoid these top environmental allergens during my treatment.

I looked at my mom after he left and said that if I have to stay away from horses for a year, I don’t know if I want to do this. ¬†But she said, “Katrina, you only have to avoid them for a year, then after that, your life opens up!” And then the doctor also told me that after my food allergies were cured, he could help me with my horse allergies too.

Next was an asthma test. I have to do this every week I go in for escalation. ¬†I really don’t like this test. Very annoying. I have to blow as hard as I can into this tube and keep blowing for several seconds. It nearly takes my breath away until I have no more air in my body. I have to do it three times in a row to make sure that my asthma is under control before my escalation and during my consultation¬†to make sure I would be able to do this without asthma complications. ¬†So far, every time, I have passed the asthma test with no problems. Not all kids have to do this, just ones with asthma issues.

And then to end the consultation, I got my blood drawn. ¬†It didn’t hurt. It felt like you were getting a small pinch. ¬†It was really the easiest part of the appointment. The blood draw was to find out the exact levels of my peanut allergy and the tree nut allergies too.

After my consultation and Dr. Jones said I would be “good to go” I still needed a bit more time to make up my mind (a few weeks).

The Fears I had with OIT Treatment

I really did not know if I wanted to do OIT treatment. It scared me.

I didn’t know if everything was exact (it’s exact), ¬†I thought they moved really quickly through it (they move slowly), I just wasn’t very comfortable with it at first. I didn’t know what I was going to expect.

It was hard to think that I could be treated of my peanut and tree nut allergies. ¬†I couldn’t believe it.

It scared me to even think about me eating any amount of peanut.

I was also scared of becoming a different person.  Part of who I was was having an allergy.  I had become comfortable in my allergy as far as who I was (not safety wise, just in who I was).

 

What Being Cured From Peanut and Tree Nut Allergies Means To Me

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Did you hear that there is hope for a second chance at a full life for those of us that suffer from deadly food allergies.  It is called OIT РOral Immunotherapy Treatment.

I didn’t use to have hope. Then when I first heard about OIT, I had an eency weency bit of hope. ¬†Then when I started, I had a little more and the further I got into my treatment, I had more and more hope. And now I have lots of hope.

What does this new hopeful freedom means to me

It means a lot.

It means traveling to places without worries – like the world.

It means going to more restaurants.

It means going to stores without checking everything – literally.

It means not having to worry every time I am at somebody else’s house.

It means not having to miss out on anything.

It means FREEDOM!

How My Allergies Have Affected My Life

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You may not know me, but if you have met me in real life or meet me one day, I might not act like a normal person would. ¬†I’m shy, I’m a homebody, I’m skeptical and most of all, I am afraid of you.

I am afraid of you the first time I meet you, the second time I meet you and probably every time I see you. ¬†Why? Because you could put me in anaphylactic shock without even meaning it. ¬†You could send me to the hospital without intending it or, you could put me into life-threatening anaphylactic shock. ¬†That’s what is going through my head everyday, every time I walk out my front door, every time I meet someone new – and even old. ¬†That’s why I am afraid of you.

I may be standing there looking at you, keeping my distance, folding my arms, not being social and perhaps coming off as rude or even snotty. At least I would appear to be stuck-up, but trust me, I am not. ¬†I just don’t want to risk my life.

As I am standing their with this appearance I am thinking, “what if they have any peanut or tree nut residue on their hand?”, “what if they just ate peanuts or tree nuts?,” what if they have dust from the shells on their clothing…. any of those things that can hurt me.

I don’t talk to you because I don’t care, I am just trying to save my own life. ¬†No one understands the thoughts, pain, concern and cares that I carry.

Not only does my thoughts and cares take over my life, but life itself does too.

Life is not fun. ¬†I have these thoughts towards you, but I also have the same thoughts towards life: “what if someone touched that door that was eating peanuts, what if that playground has kids eating peanut butter and jelly sandwiches, what if that restaurant really doesn’t understand allergies even though they say they do.”

When we go to birthday parties, I can’t have the birthay cake, I can’t eat any of the food. I bring my own food and dessert. ¬†I eat standing up at a park and refuse to sit at the table. ¬†Even if my family wipes it and covers it. ¬†I am scared. ¬†I would rather eat standing up.

I haven’t been to a sleep-over ever, I haven’t even been to a friend’s house to play without my parents. I can’t enjoy the movie theaters as I don’t know what the last person ate that was sitting in this chair, I don’t like festivals, carnivals, fairs, circuses, events..all of which have people walking around eating specialty nuts and I can smell it in the air. ¬†I hate going on trips because the further from home I get, the more afraid I become.

I don’t open doors in public, I don’t pick things up off the ground if I drop them, even going to church is hard because of the snacks, treats and potlucks.

The most famous question I ask is “is this safe?”