Friday, April 27, 2012

Oral Challlenge

  Last Monday, my mother and I took Ty back to Duke for his oral "baked egg" challenge that we scheduled last year.  The reason why they wanted to do the oral baked egg challenge was that even though his IgE levels to egg were high, his IgE levels for baked egg were 0. If he tolerated this challenge, then he would be required to eat something containing egg baked at 350 or higher to build an immunity to egg and hopefully outgrow his whole egg allergy sooner.  So they, and myself were pretty certain there would not be a reaction. Ty was so scared that he might have a reaction, I literally told him "mommy has such a peace about this, I'm SURE YOU WILL NOT HAVE A REACTION!" HORRIBLE MOM!!!!! But its true, I really didn't think he would react.
  The way it works is every ten minutes Ty has to eat a bite of a sponge cake that my mom made and every ten minutes, the bite gets bigger until he has ingested at least 1/8th of the cake.  Sounds pretty big but to anyone else, its a normal size piece of cake.  
  The first few bites went ok. We gave him a coke to choke it down with since he is not used to this taste or texture. As the bites got bigger, he started to get less compliant. He started off just wanting to lay in my lap (a sign of not feeling well) then after about the fourth or fifth bite, he was scratching violently at his ears and saying he was full. He was refusing to eat it and I was still oblivious. Then after I threaten his life b/c he was pitching the worst fit ever-I realized, oh wait, something might be going on here. Then he started getting the hives on the face and one on his back. So we quickly called it off. Even after then, I questioned whether we did the right thing and were the hives just from crying so much? Then the sneezing and vomiting came and I found some sort of relief in that b/c it was our affirmation that this truly was a reaction. Luckily it was not anaphylactic and Benadryl was all he needed.

  
 
   But for me, this was so disheartening b/c this was the one allergen he tested negative to where as the milk, nut, and regular egg were still so high. So to think something he technically should have been able to handle, he couldn't-was a hard pill to swallow. But at the end of the day, nothing changes and I'm ok with that. I really want to try to Praise God even if He decides not to take all this away. I really have a peace about that and I'm excited to see what God is gonna do with Ty regardless. Does that make sense?
  I try to picture myself actually face to face with my "Heavenly Father" and asking him for a car.  He looks at me and smiles and says "maybe."  Then I become selfish and say "my dad promises to get me and car and I hope its a corvette."  Then, I turn 16 and suddenly I am mad at my "Father" because not only did he not get me a shiny new corvette, he didn't even get me a car!  Then I go back to the initial conversation and realize, he never promised me a car-much less a corvette!!!! But during all this, he has gotten me from point A to point B with no problem.  And for that I AM GRATEFUL!!!!  I know God can take all of this away and heal Ty immediately if that is His will; HOWEVER, I am grateful even if He doesn't take this away.  God has always protected Ty and the end result has always been positive.  I do not want to be a "brat" to my "Heavenly Father".  I will praise His name no matter what.  And I pray that He will use our situation to greater His name and purpose.  But I know we will still have challenges and not sure how we are going to get through them, but God will continue to get us from point A to point B and I find so much relief in that promise.
  On a different note, calling all teacher friends!!!!  We have officially started the process of dealing with the public school system.  His information and medical records have been submitted and the initial conversation was less than pleasant.  From an insider, we have been informed that "the school legally does not have to do anything until they are in first grade because legally they don't have to go to school until then." WHAT?????  I hope this was just an uninformed, ignorant statement but whether it is on the record or off, it seems wrong to me.  But I promise I will let you guys know what is going on every step of the way.  Ty has a right to be taught and taught safely.  Whether this happens at school or at home, we pay taxes like everyone else and I would at least like to be treated as if we matter.  Oh, I hope this doesn't turn into a harry mess......

Thursday, September 15, 2011

Ty's Test Results from Duke

Ok so i am officially the worst blogger ever but the point is to tell everyone updates when i get them, not to fill you with pointless day to day info.  As most of you know the upstate allergists sent us to Duke Med for some more extensive tests to be done on Ty to see if we can clarify some things.  All in all it was a decent trip, Ty did amazing and I'm glad we went (will sing a different tune as soon as the bills come in I'm sure).  At first it was just a lot of talking (four hours worth) about everything that has happened in Ty's life.  We spoke in depth about all five anaphylaxis and literally every medical event in between and you can tell they are a research facility because they heard every word and caught it if we skipped a beat.  Long story short, they did all of the routine food allergy testing and then they tested for a few things that other allergists don't do.  Everything on the prick test was as it has always been, severly allergic to milk, nuts, and eggs.  Before they checked his IgE levels (remember his allergies are immune system based, not digestive) they told us he will outgrow milk and egg probably in the next few years and would most likely never outgrow nuts.  That statement was the best news I had ever heard at this point.  Every other doctor has told us he would never outgrow milk and that he was the worst they had ever seen.  Although I was excited, I knew in the back of my mind that they would change their tune once the blood tests were in. They sent us home and said they would contact us with the results and more instructions.
Yesterday I got the call.  The good news is that they tested for raw egg and baked egg (has to be baked in a mix at 350degrees or higher) and although his raw egg was still very high, his baked egg was in the 50/50 range.  That being said, he wants us to come back in January and do a food challenge in the office.  He said it could not be done locally because they have a special way to handle and monitor kids like Ty and there was still a good likelihood that he could have an anaphlactic reaction from the challenge.  The good news is this means he might be able to get the flu shot now :)  The other thing he said is that Ty's IgE levels were off the charts for milk :(  Although not many, they have had other kids like Ty.  He said it is likely he will never outgrow them and if he does, it will probably be after college.  I felt like I had been hit by a ton of bricks.  I could care less about baked egg.  I mean if he is severely allergic to raw egg, the last thing I want to do is bake with it and be scared remnants were left on the bowl or spoon, or sponge etc.  And what if my oven didn't work properly and it didn't reach 350?  Anyway, I know it could be worse, I know the diagnosis is better than so many others but at the end of the day it still SUCKS!!!!  God can do anything but I'm not sure that I am equipped to.  The "bubble" that we are forced to live in gets a little cramped sometimes and homeschooling is fine but I would love for Ty to have a "normal" life full of birthday parties, friends, sleepovers, restaurants, school etc.  So for now, nothing changed.  On the flip side, at least it didn't get worse right?  We have the best of the best doctors working with him and at the end of the day if I put my faith in them, I will be let down.  So my faith is in God and I pray He uses us to testify for Him (just go easy on the little man will ya?)

Sunday, July 17, 2011

Update on Ty

It always takes me a while to post because I honestly have so many emotions that it takes time to literally sort through them all. Last week we touched based with our allergist and talked about our upcoming appointment at Duke for the end of August. While Ty was in the hospital and the doctor was reading over some of Ty's lab results he told us "Ty's milk allergy is so bad, science says he will NEVER outgrown this." That stung a lot!!!! The doctor said that he got together with all of Ty's previous allergists from two other practices and decided that Ty was the "gold star" of Greenville and they all agreed that a case like his needed to be seen by the "experts." The doctor really liked a practice in Cincinnati but that is too far for us to travel with Ty and our limitations so Duke is best suited for us. He is not sure what is going to happen at this appointment because he is too young to be included in any of the trials and tests but the doctors there really need to meet Ty and build a relationship with him, follow his progress and perhaps use him for upcoming tests when he turns six. Either way, our doctors feel like their doctors should meet Ty and learn of his story. Sometimes it really makes me sad to think that he really is that bad to need to be sent to different doctors just to "meet" him. To be honest, I've really been struggling lately. If there is ever a word to describe our life, above scary, it would be "isolating."
Last night, Chad and I got to go on a very last minute date and as we were sitting down eating at the restaurant my husband looks at me and says "Do you know what my dream is?" and as I shook my head he said "to take my son out to eat." People don't realize what a treat that is. Not only for the food aspect but also just to have a fun outing together and share that time of bonding over a good meal. Also, I realize that it is getting harder to hang out with friends and such because unless we are at our house, it really is an inconvenience to try to "Ty-proof" the situation so it is just easier to not involve us. Praise God for such an amazing family who really goes out of their way to keep Ty safe and luckily there are a lot of cousins so there is no shortness of friends. Lately we have hung out with some new friends and I thank God everyday for slowly expanding our "bubble" :) All I want is for my children to be happy and alive and if I get healthy along with those, than I will have won the lottery :)
As I was feeling extremely sorry for myself this morning at church (I was wishing I could be in the choir but can't b/c I work at nights and Ty can't go to any kind of daycare, and VBS was beginning and i was praying he wouldn't notice b/c it was not going to be safe for him) God did an amazing thing through me this morning. The preacher at Praise Cathedral was speaking about God working miracles but only for those who are right with the Lord. Although I love the Lord, I am definitely making more time for Facebook than I am for my Bible. Thanks to the preacher it hit me, I care more about Ty being healed than I do about God using this whole situation to further His Glory. What a shame!!!!!! I now realize that God specifically chose our family to deal with this and He did so for a reason and I have to believe that He will provide every step of the way what He sees to be fit. That means no more pouting, no more crying, and no more pitty parties. Instead PRAISE for the fact that all five times Ty has gone through anaphylaxis, God has given Ty LIFE!!!!! Already a miracle!!!!!! And just like when you read a book, you know the beginning and the only way to get to the end is to keep reading page by page and eventually you will know how it turns out. But you can't put the book down b/c it got too scary or you feel alone, you have to march on and keep reading. That is what we are going to do. And as our amazing church and Pastor Jerry laid their arms around us and prayed for our son, I knew at that moment God is working. I don't know how, when, or why, but God is working through us and though Ty. And for that alone I will always sing His praises!!!!! So the statement earlier from the doctor that Ty will never outgrow this according to science.....Luckily I pray to God and not to science and my God is an awesome God who can do ANYTHING!!!!!! I can't wait to see how our next chapter turns out.

Tuesday, June 28, 2011

Fifth Anaphylaxis

That's right-it happened again!!!!! Most of you already know from Facebook but Ty had his fifth anaphylaxis last Thursday. Keep in mind, he is only four. We were hit by what seemed to be a tornado last Wednesday and lost power for about 24 hours so we packed up and went to our other safe "haven" my mom's house. Everything was fine until that evening after I had gone to work and received an urgent call from Chad telling me to come home because it didn't look good. By the time I got home, Ty's face was completely red and slightly swollen and the rash had taken over his body. Chad and my sister Stefanie had already given him benadryl but now was the time for the epi-pen. They held him down as I gave it to him and my dad called 9-1-1. The ambulance took us to Greenville Memorial where they ordered a bunch of blood work (our new allergist Dr. Pulcini)and monitored him for about 24 hrs. They were testing for a condition where your body has random reactions like this but luckily he tested negative. However, his food allergy testing came back from the previous allergist's appointment and we got good news and bad news. The good news is Ty's IgE levels for egg and nuts has gone down significantly from when he was one PRAISE GOD!!!! But the bad news is his milk allergy was off the charts. A normal allergic IgE level is 15 (on a scale of 1-100), Ty is still testing 100+ since birth. Which means he can't even be in the same room as the milk protein.
The doctor's concern is that since we have had two reactions with no known causes, Ty might have some sort of exercised induced anaphylaxis. That basically means if Ty comes in contact with one of his allergens, any normal time it might not send him into anaphylaxis, but mixed with exercise it could. Just a theory at this point. Our allergist has decided to send Ty to Duke for more testing and to see more doctors who are familiar with cases like Ty. Out of the allergists here in town, he is the worst they have ever seen. But we are very thankful that Dr. Pulcini is being proactiv and wants to help us. Ty is four years old. He should be concerned about toys, dirt, and candy not epi-pens and anaphylaxis. But God is in control and yet again, like a cat, Ty survived. :) In fact, he handles it much better than I do. Just the other day he comforted me by saying "don't worry mom, soon I won't have these allergies anymore." wow. I guess if he can do it, I better figure out a way right? Still working on that one. But in the mean time I have decided to take over the SAFE meetings (a support group for people living with food allergies) so I am already finding people to share stories with and to support each other through our isolating lives. God is good-all the time!!! Its just up to us to remind ourselves of that. We will keep you posted on our Duke appointment (in August) and you guys-keep up the prayers :)

Tuesday, May 10, 2011

Food Allergy Awareness Week

It is Food Allergy Awareness Week and most people are completely unaware of food allergies, yet alone a week devoted to that very cause. We as advocates have to be very diligent in spreading the news about how dangerous this epidemic has become. If you follow this blog, I challenge you to post something on your twitter page or facebook page to help spread the word this week. That being said I promise to deliver a different post today. Ok, so usually this blog is a way for me to vent about our daily struggles, well in honor of Food Allergy Awareness Week (FAAW), this is just a yummy recipe post. I forget to explain to people that we eat very well. I love food way too much to feel like I am missing out on anything. Let me clarify, all these following recipes are Dairy Free, Egg Free, and Nut free (peanut and tree nut).

Oreo Balls (my new favorite)

-1 package of chocolate oreos (could substitute gluten free oreos)
-1 8oz package of Follow Your Heart cream cheese
-2 bars of Bakers Semi Sweet chocolate (surprisingly dairy-free)

Place oreos in your food processor and grind until pretty fine. Add cream cheese. Mix with your hand until well incorporated (warning, a little messy). Roll into balls and place on a foil covered cookie sheet. Place in freezer. Melt the chocolate one bar at a time. When chocolate is melted, bring oreo balls out of the freezer and dip into the chocolate. Continue with each oreo ball until all are covered. Then take leftover chocolate and drizzle over oreo balls for a decorative affect. Place oreo ball in the refrigerator until time to eat. ENJOY!!!!


Brownies:

1 Box of Ghiradelli Double Chocolate Brownie Mix (always re-read the label b/c sometimes they change but this one just contains wheat...as of now)
1 can of Diet Coke

Preheat oven to 350 degrees and simply mix the two ingredients together-nothing more, nothing less (no eggs, no oil, etc). Pour into a greased 9x9 pan and bake for 45-55 minutes or until toothpick comes out clean. Enjoy!!!

*also a Weight Watchers Recipe


Banana Muffins:

-1 cup of sugar
-1/2 cup of vegetable oil
-1/4 cup of soy milk or rice milk mixed with 1 tsp apple cider vinegar (mix together and set to the side)
2 ripe bananas
2 cups of Self-rising flour
1 tsp vanilla

Preheat oven to 350 degrees, and simply mix it all together. If you are feeling crazy add chocolate chips or whatever dried fruit you would like. Grease the muffin pan and pour in batter. Bake for 20-25 minutes or until toothpick comes out clean. Enjoy with a nice cup of coffee in the morning or at night :)


These are just a few of my latest/favorite recipes. Hope you try them and love them as much as I do!!!!

Friday, March 25, 2011

#4

Three weeks ago today, Ty suffered his fourth, and probably most severe anaphylactic reaction.

Let me start at the beginning. For those who do not know our situation, four years ago, Ty was born with severe food allergies. To make a long story short, we knew when he was eight days old that something was wrong. He broke out in a severe rash from head to toe right after I nursed him. I'll never forget what I had cooked the night before-lump crab meat macaroni and cheese. I asked the doctor could it be a reaction to something I ate and the doctor said "there's no way food allergies can be passed through a mother's milk." Keep in mind this was four years ago and food allergies have risen 400% (something crazy like that). Ty was tested at 6 months old and we knew then the demon we were dealing with. At nine months old he suffered his first anaphylactic reaction. Since then we have had three more attacks. For those who are not familiar with the phrase anaphylactic reaction-basically if the epi-pen is not administered in time, he dies. He has been in anaphlyaxis four times now and HE IS ONLY FOUR YEARS OLD!!!!

Three weeks ago today, Chad had been out of town and came home excited to see the kids and wanted to get out of the house with. With Ty we are very limited on places to go so we took the kids to Target. I was there to get a sound machine for Tanner so we let Ty pick a toy out of the dollar section. Tanner and Ty were pretty good in the store but for some random reason Ty put the particular toy in his mouth like a two year old. I said to him "get that out of your mouth, you don't know if it has yucky food on it." By the time we got home everything seemed normal. We dressed the kids for bed and began reading one of Ty's favorite books. Ty usually likes to finish each line but tonight his cough kept getting in the way. He had just gotten over his second round of the flu the week before so I assumed it was leftover cough and a nebulizer treatment would do the trick. I took him downstairs and gave him a treatment while Chad put Tanner to bed. During the treatment Ty starting falling asleep and as I deliberated on whether or not to hold him and let him sleep on me for a while (get a little cuddle time out of it :) ) it was as if God whispered in my ear-GO TURN ON THE LIGHT.... As I did I turned around to see Ty's face swollen and red as if he was wearing a red ski mask. I knew right away it was bad. I told him he was having a reaction and like a champ he choked down his double dose of benadryl (along with plenty of vomit b/c he cannot take medicine without throwing up). Ten minutes later my parents show up and my dad and Chad have to physically hold Ty down while I give him the epi-pen and call 911. When the ambulance came, they had to give him a second shot and his symptoms (swollen face, swollen stomach, hives, rash, blue around eyes) did not get better for 2 1/2 hours!!! To someone who has never been through this, basically your body hates this particular food so much it will turn off each organ like you turn off each light in your house before bed. The epi-pen, if given in time, will act like a switch or back up generator, to turn everything back on (for 20 minutes at least to get to hospital). To come that close to seeing your child almost die is more than anyone should have to endure-especially the victim. All from simply touching a toy that may have had yucky food (milk, nuts, or egg for Ty) on it. FOOD ALLERGIES ARE THIS SERIOUS-LIFE OR DEATH. And PRAISE GOD He has given us life all four time. I can't even think about the other possibility or I will lose it. But God was with us every step of the way. There were so many little miracles that night that all played a part in sparing his life. It feels like pulling your child off the train tracks literally right before the train gets there.

Of course Ty takes it all in stride and is asking lots of questions and seeming to understand the answers. Yesterday he came running to me screaming that Tanner said a bad word (uh oh, one of them have heard mommy drop some bombs evidently). I asked what Tanner said and Ty said quietly "milk". LOL!!!!!! Praise the Lord it wasn't something I said-j/k. I then had to explain that it wasn't a bad word, just a bad food for Ty not Tanner, Tanner just doesn't eat it to keep Ty safe. Wow. Too funny. And sweet little Tanner, for those who worry about him, he is definitely getting better, bigger (on the "ty diet") and finding ways for his own attention. Yep, today my 21 month old (today to be exact) BROKE HIS LEG!!!!! So what Ty got three weeks ago (a lot of extra lovin'), Tanner will now get :) Note to self, don't ever prayer for a "break" unless you are specific :) So my prayer tonight is that God will not only protect Ty until the day He takes his food allergies away, but to protect and keep Ty and Tanner and maybe go a little easier on mom because God obviously thinks I can handle a lot more than I think I can.

Monday, February 14, 2011

I HATE FOOD ALLERGIES!!!!

The reason I have quit blogging is because I decided to spend more time and focus on kids and anything that took me away from that (interenet, TV, etc.) I would try to not use it while they are around. And after bedtime I'm too worn out :). Today I am writing purely as an outlet. I hate food allergies so much that I have quit talking about them. The more I talk about it, the more upset I get. I am definitely not dealing well with the cards we have been given. It affects every single minute of every day of my life. I'm not sure if there has been a day that I haven't shed a tear over it. I try to keep a peace with God that I know He is in control, but sometimes my human nature takes over and I feel burdened. Ty is amazing and handles his life with such grace. He had to come home from school one day b/c a little girl sat on his head and it was right after lunch so there was residue on her pants and he broke out all over. I cried like a baby for two hours and he said "don't worry mom, i got to play in the director's office!!!!"
Ty has recently started feeling a little isolated due to his severe food allergies. Every single children's channel is sponored by Chuck E Cheese's and he hates that he can't go. He pitched a royal fit one day b/c he promised me that he would just say "no thank you" if someone offered him pizza. I tried to explain that there is cheese everywhere, even on the games, and you are so allergic you can't even touch the games. At the end of the day, I can't expect him to understand cross-contamination. Afterall, he is only three!!!! We can't go to family member's houses without leaving with a rash, we can't go to the doctor's without leaving without a rash. School, stores, friend's houses, church, etc, all result in some form of mild reaction. Although those are not life threatening, they are annoying. Our home is our ONLY safe haven. Which brings me to my new issue-TANNER.
My sweet Tanner has no food allergies (sensitive to soy) and he has been on ty's diet (as all of us) for the past 19 months. Today was his 18 mo well check and the doctor is very concerned about his weight. He is now in the 3rd percentile. She believes if we incorporate things like cheese, mayonnaise, eggs, etc, that might put a little more weight on him. Sounds great but scares me to death. Now, i have to face losing my only safe place for ty-our home. After each meal i will need to bath, brush teeth, sanitize surfaces and tell them not to hug or kiss. How do i do this? How do i sufficiently take care of BOTH kids. How do i not rob Peter to pay Paul? I don't feel like anyone in this world understands what i am going thru and the severity of it. IT SUCKS!!!!!!!! i don't know what to do? On this Valentine's Day, I love my kids more than anything in this world and whatever i have to do i know is worth it if it makes both of them happy and healthy.