Update on incorporating baked milk and baked cheese

It has been a few weeks since Drama passed the baked cheese oral food challenge. There was some resistance on his part to try new foods with cheese, just like with the baked milk. Would still love to see a paper done on the psychological effects of food allergies. It's very hard to go from life threatening food allergy to growing out of it and learning to eat it again.

He is still learning. Trust is a huge thing. He continually asks me if I'm sure he can have it. It makes my heart skip a beat to tell him yes, I am sure you can have it because what if he was to have a reaction? He would never trust me again.

So far he has had pizza, Mac and cheese, pizza rolls, and taquitos. His allergist suggested he eat baked cheese at least 3 times a week to build up his immunity. Then in September we can do another immunocap test to see if it would be safe to try uncooked milk.

It's been a long and sometimes hard journey but in the end it will be worth it to knock Milk off his food allergy list. I am hoping we can start the baked egg test in September. Then we will have another year of doing the same thing.

Keep Drama in your prayers! Thanks!

Baked Cheese Test Anxiety

Drama has an appointment Monday for his second food challenge. This time we are doing a baked cheese challenge. For this challenge I was instructed by his allergist to buy an Amy's Cheese Pizza and bake it at 425 for 13 minutes.

 

I am not sure why, but all of the food challenges I have read involve Amy's Cheese Pizza so it must be a preferred brand by allergists.

 

FEARS

 

The last food challenge started out difficult. Elijah was afraid to eat the Milk Muffin. I am scared it is going to be the same thing this time around. He still has anxiety eating things with baked milk in it. Getting him to eat baked cheese is going to be interesting. I wonder if anyone else has done a study on the psychology of introducing foods kids were once allergic to.

 

Drama has been told his whole life he can not have anything with Milk in it or he will have a bad reaction and may end up in the hospital. He even still wears a MedicAlert bracelet due to this. Now we are telling him he can have it and he can not process the fact that it's okay now. He says, "are you sure it's okay?" and he has told me "No, I can't have that it has Milk in it". He still refuses to try some new things, such as Cheez It's.

 

PRAYERS

 

I am praying that he takes one bite of this pizza and falls in love with the melty goodness that is mozzarella cheese. I want to share with him Mac -n- Cheese, Lasagna, Pizza, Quesadillas, Taquito's and everything else I can't think of right now with baked cheese. This is just one more step to being declared Milk Allergy FREE. In a few months he will have the last food challenge where he will drink a glass of milk. When he passes that test he will be able to have ice cream, chocolate, yogurt, milk, pudding, sour cream, cream cheese, cold cheese, dressing, etc.

 

I pray that this works and we can try this with Eggs next year. I know he is unlikely to ever outgrow his Nut allergy but just adding Milk and Eggs to his diet will make life a little easier for him. Having food allergies is really hard on kids. You aren't getting all the nutrition other kids are and other kids notice when you are eating something different so you get singled out and made fun of. Some kids are bullied. It takes a toll on a childs self esteem. I am asking for prayers for Drama that he passes this food challenge. I will update everyone on Monday on how the food challenge went.

 



After the Baked Milk Challenge, 2 Weeks

We have made it two weeks with ZERO issues! It is all still very new to us. Starting tomorrow he can start to have cheese crackers. Even though he is still fighting me on trying new things. I bought the Annie's Cheddar Bunnies because Goldfish have a less baked cheese coating on the outside. I will also be avoiding Dorito's or any "flavor blasted coating". I think Cheese It's would probably be okay, as long as they are the regular kind. I did a lot of research and Annie's was recommended.

Exploring New Foods

We haven't gone crazy with exploring new food, just kept it basic. Jimmy Dean's Microwaveable Sausage Biscuits are a HUGE hit. They are egg free as well so it was the first thing we tried that wasn't home baked milk. Our allergist said as long as it was baked and milk was past the third ingredient we were a go. He had Pillsbury Cinnamon Rolls for Christmas morning. Cinnamon rolls are a tradition in our house for Christmas morning breakfast so it was nice to not have to make "special" ones for him. We have also tried Goldfish original and pretzel crackers. They are also taste approved.

Our goal is to eat something everyday that has milk in it to keep his immunity up so he can pass the second stage of the test in February which is the baked cheese pizza test. He still says he doesn't really care if he outgrows his milk allergy and doesn't share my enthusiasm, but I know when this is all over and done with he will be a lot happier. We talked about the things he would be able to eat next Christmas. I am hoping we will be doing the baked Egg challenge by next Christmas. His test results for Egg was not ideal for the baked challenge.

All I want for my son is some sort of normalcy. He is going into middle school next year and even if he is homeschooled he will be in Youth Group and that age is all about fitting in and making lifelong friends. Having food allergies doesn't help when you are trying to fit in, especially at the awkward time when things are changing in your body. He will always have his peanut allergy but things would be so much easier for him if his egg and milk allergy go away before High School.

More foods = More chance of Anaphylaxis?

Something that has been nagging me in the back of my mind is that as his foods lists increase, so does the chance for anaphylaxis. Baked items with Milk and Egg oftentimes have nuts or are processed on lines with products containing nuts so we will have to stay vigilant and continue to read ingredient lists. Unfortunately, even though it will be a blessing for him to have chocolate, chocolate is often processed in the same factories with nuts. So at the end of our Milk Challenge when he is allowed to have chocolate we will be doing some major research on dedicated lines.

Hershey fan? Check out this blog for info on Hershey Chocolate and Nuts http://nut-freemom.blogspot.com/2010/09/nut-free-lowdown-on-hersheys-chocolates.html 

Food allergy food therapy day 1 no bueno

So yesterday Drama passed the first part of the baked milk challenge. He can now eat breads, cake, cookies, crackers and other baked breads that contain milk. So grocery shopping should have been a fun filled adventure, right? WRONG.

Can you say meltdown in aisle 1? As I am flitting around checking ingredients on delicious goodies, Drama is saying NO to everything I pick up. I am going around pointing out things that he will be able to eat in a few months and he just retreats further and further and finally has an outburst in front of the Ice cream.

"I don't want to eat new things, I don't want my milk allergy to go away", I stopped dead in my tracks. Had to lean on Ben and Jerry for support. Excuse me? Me no Comprende. Did I just hear this child right? I just assumed after ten years of living without these things he would be excited to pick out new things he has seen his friends eat. I didn't think about the psychological factor.

I continued on my way. Picking up some Pillsbury cinnamon rolls (surely those would speak to his soul, right?)  Amy's cheddar bunnies, and goldfish pretzels.

When we got home I had him eat 5 goldfish pretzels. You would have thought I was asking him to detonate a bomb. Then he had his milk muffin for the day. I am hoping this gets easier. Its not just about eating new things. Continuing the food therapy will boost his immunity to the milk protein to where if he gets a big dose of it it won't cause a reaction.

I covet your prayers!

“And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.”

2 Corinthians 12:9 KJV

Have a food allergy or a child with food allergies? Join my Facebook page http://www.facebook.com/elijahshope

NIH link about Baked Food Therapy: http://www.niaid.nih.gov/topics/foodAllergy/research/Pages/immunotherapy-food-allergy.aspx

AAAI link about baked egg and milk immunology: http://www.aaaai.org/global/latest-research-summaries/Current-JACI-Research/ingesting-baked-egg-may-help-children-outgrow-egg.aspx

Baked Milk Challenge Part 2

The day is finally here. In a few hours we will start the test at his Allergist's office. Yesterday I made the muffins for the test. I have to say it was strange making food for Drama with Milk in it, something we have diligently avoided for ten years.

We arrived at the Allergy Asthma and Sinus Center and was taken back at 8:30am. The nurse took his weight, height, and vitals. His peak flow meter score was better today than last visit.

The Allergist came in and did an exam. She cut his muffin that I baked into 4 quarters and gave him his first dose which was 1/8 of a quarter. He ate it after some persuasion on both our parts. She then set a timer for 15 minutes and told me if he started having any symptoms to come and get her.

He was very nervous and didn't like the taste either.

Every fifteen minutes the nurse took vitals and the Allergist gave him an increased dose the first two doses were an 1/8 of a quarter then he had 1/2 of a quarter, a whole quarter, then quarter and a half for the last dose.

I asked his Allergist if he could have his allergy shots today and she said No because if he had a reaction we wouldn't know if it was from the shots or the muffin. So we will get our shots in a couple of days.

HE PASSED THE TEST!!!

He made it through the test just fine. I brought books and his iPad to keep him occupied. For now he can have home baked goods. In two weeks we can try store items like cheese crackers, cinnamon rolls, etc. He is still allergic to milk, he can just tolerate baked milk and eating it will boost his immunity to where we can try cheese pizza in two months and after incorporating baked cheese for a while he can try drinking a glass of milk.

It will definitely open up some food options for him, but he will still be limited since most things that have milk in them also have eggs and he is still too allergic to egg to try the baked egg challenge.

Need more food allergy info and tips? Like my FB page www.facebook.com/elijahshope 

DO NOT TRY THIS FOOD CHALLENGE AT HOME AND ALWAYS CONSULT A BOARD CERTIFIED ALLERGIST

If you are looking for an Allergist, we absolutely love ours. www.allergyasc.com
(Not a sponsor)

Helpful reading:

https://www.niaid.nih.gov/topics/foodAllergy/research/Pages/bakedMilk.aspx

http://www.gratefulfoodie.com/allergies-life-after-baked-milk-challenge/

http://www.healinghacker.com/baked-milk-challenge/

Baked Milk Oral Challenge Part 1

Drama has life threatening food allergies to Milk, Eggs, Peanuts, and Treenuts. Recently I took him to children's to have his blood drawn for an Immunocap test for Milk and Egg. An Immunocap test will tell you the severity of the allergy. Both his tests came back moderate, meaning he is still at risk of anaphylaxis but his allergist gave the go ahead to try the baked milk oral challenge. For this challenge Drama has to be off all antihistamines for 7 days and we will start early in the morning at 8 am. Protocol for the oral food challenges is for the parent to bring in the food for the challenge. 

The muffin recipe our allergist gave us is as follows:

1 cup milk

2tbs Canola Oil

1tsp Vanilla

1 1/2 tsp EnerG Egg Replacer

1 1/2 cups of flour

1/2 cup of Sugar

1/4 cup Salt

2 tsp Baking Powder

Mix all dry ingredients together, then add wet ingredients. Bake at 350 degrees for 30-35 minutes. Each muffin will equal 1.3 grams of cows milk.

This is all new to me but it seems the temperature and length of time the item is baked is key. The allergist called to make sure I understood everything. She said they would feed him the muffin a quarter at a time and checks vitals, if he passed the test he would be able to eat cookies, cake, bread, and crackers with milk in them. Eating these things will build his immunity and we will be able to move on to the next phase.  After a couple of months we would move on to baked cheese. All of the blogs I've researched online mention Amy's cheese pizza. I haven't looked to see if it has eggs. If he passes the baked cheese test he will eat things with baked cheese for a few months then he will be able to try drinking milk.

It's so nerve racking to do an oral challenge. You are giving your child food that you have been telling them it could kill them. Combine that with a child who has Aspergers and is a stickler on rules and regulations (unless I set them) and it's double drama. He isn't thrilled about the test and could care less if this means he can eat more things. He doesn't like the risk. Which I can understand. If he has a reaction it will be the end of our oral food challenges. There's no way I will be able to talk him into it again.

I am praying everything goes smoothly and he will pass and a whole new world will open up for him. He won't have to stare longingly at his friends foods and won't be embarrassed to have to eat his "safe snack" in front of all his friends who are eating the same thing. We take eating for granted. Because most baked items containing milk also contain egg which he is still too allergic to, to even try the baked challenge, he will still be a little limited as to what he can eat. Will update as soon as we have the test Monday.

Parenting a special child

I love my son. He is my reason for breathing. That does not mean that everything is puppy dogs and rainbows. Drama has Aspergers and Life Threatening Food Allergies. Being a single parent is HARD. Being a single parent of a special needs child is even harder. 

Before I get started I want to acknowledge that I am fully aware that there are kids worse off than Drama. I know it could be a worse situation. That doesn't make what we go through on a daily basis any easier.

Something happened when this child hit 10. He got a lot more harder to control. He started being a lot more moody. I blame this on the start of puberty. It seems to have made his Asperger symptoms magnified. It's also made him ashamed of his food allergies.

He knows he is different. He sees when kids don't want to play with him. When they make rude comments about him being weird, he hears that and it hurts him like it would anyone. He has said he doesn't know why God "did this to him". He has been depressed. His therapist told me that kids like him are at risk for suicide. I don't have to only worry that food is going to kill my child, now I have to worry about him harming himself.

All he talks about are video games. This is pretty normal for a child with Aspergers who has this niche. I think it is extremely annoying. I try so very hard to listen as much as my ear drums can handle and then I simply tell him that he has reached his limit on video game talk for the day. Sometimes I'm not so nice about it if he continues. 

I try to explain to him that not everyone wants to hear about video games, but he continues to talk to anyone who will listen and mostly at the most inopportune times. For instance to a waitress who is taking our order, during Sunday school, random passers by. I'm serious. It's a major problem. Sometimes I take him to gamestop just so he has someone to talk to.

 He labeled this pic as "Deal with it"

Lately he has been so ashamed of his food allergies. Take for instance last nights Trunk or Treat at church. He said it was embarrassing that he couldn't eat the food they had. He didn't even want to go because half the candy he is allergic to. I told him he didn't have to say anything and we would seperate it out when we got home. He refuses to wear any kind of food allergy awareness apparel. My involvement in the food allergy community has dwindled because it embarrasses him so much. He hates being different. This is very scary to me. I worry that when he is older he may not tell someone he has allergies and he could die if he eats anything with nuts in it. A lot of food allergy deaths happened with teenagers. That's when over protective moms aren't hovering to make sure their kids food is safe. Teens may be more unlikely to ask if something is safe for them to eat or check ingredients because they don't want to be made fun of. They want to belong.

          Trunk or treat at church

Drama is getting to where he is a lot stronger than me. If he has a bad meltdown it is almost impossible to put him in a therapeutic hold. He could definitely hurt me if he tried. 

I would do anything to take this all away from him. He feels so defeated having food allergies and autism. He wants to be normal. He longs to have a Dad. Having a Dad who was in the picture would definitely make our lives easier. I think 50% of the stress would be gone. It's hard being the only one who makes the decisions about your child's health. If something happened to me, I'm not confident anyone could do what I am currently doing for him.

What people don't see is the schooling he does. He does his school online because it's so much easier than putting him in a school where he is at risk of an allergic reaction and having to deal with bullies. He thrives better being homeschooled. People say, what about socialization? I invite those people to observe him around other children at church. Kids know when someone is different. Not that many kids choose to play with him. When he was in public school his teachers said he stayed with the teachers talking their ears off or he played by himself. I've overheard kids saying "we don't want to play with him". It's hard for a mom to hear. There are a couple of sweet kids who do play with him and when that happens my hearts bursts with happiness.

I'm hoping with more therapy he will do better socially. 

He has great strengths. I believe he will do something great in the field of technology. It's going to take a lot of sacrifice but one day everyone will want to know him. He is the smartest person I know. He knows more about computers and gaming consoles than I could ever know. He mourned the loss of Nintendo's President. There were tears. He is fully invested in becoming the first American President of Nintendo. I would love to take him to a gaming convention. I feel like he would meet so many people he could relate to and feel like he belonged. He has begged me to take him to MineCon but it was in the UK this year and flying is definitely not happening any time soon. Hopefully next year it will be in Florida. 

     Future President of Nintendo

Drama is unique. I would not trade him for anything in the world. This is my purpose in life. To raise this brilliant child and to help him achieve greatness. It's been a long hard road and I am sure we have a lot more to overcome but by the Grace of God we will make it. We are all given our paths for a reason. I'm glad God chose this as my path.