Category Archives: TJ’s Journey

Thankful

Because of TJ’s multiple food allergies, finding breakfast foods that he will and can eat has been the most challenging. This weekend we were able to safely and successfully introduce the first real cereal to his diet. So far, he seems to really enjoy it and his body is doing wonderfully with it. Although this may not seem like much, to us this is amazing news! Because I know God is working within TJ and guiding our steps, we are beyond thankful and continue to smile on…

HOW GREAT

Source: http://www.ibelieve.com/

Round 4 Results Are In

To start, TJ’s hemoglobin and iron levels are all in the normal range! What amazing news! Despite his very restricted and limited diet, we did not need to use an iron supplement to bring up his slightly low levels.  Instead, we just added in iron wherever we could for the past three months and it worked! What a relief and confirmation that we are indeed following the right directions, taking the best steps for TJ through this journey.

Since we needed this blood work done anyways, we had more food allergy testing done as well.  We tested current levels of some grains and the components of peanuts and dairy to gain more information about those specific allergies. Right now, I am waiting to hear back regarding what everything means.  After that, I will post more explaining the breakdowns of the components.

However, what I do know is that his body isn’t ready to outgrow any of his current allergies yet, which is totally okay.   With day care and going back to work again just around the corner, I will definitely need to make sure that every staff member is fully informed of his allergies and the current severity of some of them. For example, they need to understand that based on the breakdowns and current levels, the dairy and peanut allergies could be anaphylactic. The fact that his classroom is already a peanut/tree nut free classroom is definitely a relief.  On the other hand, dairy is everywhere so certain practices and activities need to be regulated and watched carefully for TJ’s absolute safety. My initial reaction is always to start worrying about this, becoming anxious of September.   However,  that is no longer an option for me, for us. I just need to ensure all staff members that come into contact with TJ are fully informed and prepared.  We already had his Food Allergy and Anaphylaxis Emergency Care Plan updated and copied for them.   Sometimes or most times, I wish I could just stay at home with him and protect him from the unknown. However, those are not the cards we have been dealt.

On what I believe to be another positive note, there is a declining trend happening though with his wheat, peanut, and cow’s milk allergies.  While I am no doctor and far from one, I feel like this is definitely a positive sign.   However,  I asked my doctors and am waiting to hear back.

Wheat

In December: 6.14

In April: 6.43

(Now) in August: 5.50

Milk

In December: 16.9

In April: 53

(Now) in August: 33.20

Peanuts

In December: 6.3

In April: 4.5

(Now) in August: 4.22

Every time we have another set of blood testing done and I wait for the results, deep down I pray for a miracle, that I open up all of the results and he has outgrown all of them. Not one or two, but all of them.  It’s funny how irrational this is when you base it on the facts of food allergies. Yet, despite those facts and that my dreams have no scientific evidence behind them, they give me something more powerful than any statistic.  They provide me with hope.  Hey a girl can dream! After all, “miracles start to happen when you give as much energy to your dreams as you do to your fears.

I truly believe that TJ will out grow his allergies, but that his body just isn’t ready yet.  Today was the first time that I read through his results and did not break down in tears of fear.  Instead, I felt a strong and strange sense of peace because we are truly blessed. The time will come when his body is ready but in the meantime we need to continue to keep living life to the fullest and smiling on…

“The biggest adventure you can take is to live the life of your dreams.” – Oprah Winfrey

Blood Work Round 4

Since December, TJ has had three rounds of allergy testing through blood work.  Today, will be round 4.   TJ is currently allergic to dairy, eggs, wheat, barley, oats, tree nuts, peanuts, sesame, and coconut.   He is no longer allergic to soy and peas.

Here is a quick recap:

Round 1 (December 2014): Initial testing to test for all of the foods in a jar of baby food that caused hives at day care. This is the round that told us that he was allergic to oats and barley.  This was in addition to the already known allergies of dairy, eggs, wheat, tree nuts, and peanuts.  Unfortunately, we found these out after his initial anaphylactic reaction to his first taste of yogurt aka scariest night of my life.

My Reaction: Whenever TJ is around, I put all of my energy into being happy around him. However, the second he is at day care or sleeping, I am a mess.  I cried a lot through my winter break from work.   Even after I went back to work, I cried when anyone asked me how TJ was and even when I was alone during my daily breaks.   Honestly, my tears were constant because I was terrified of everything. From being along with TJ, to being the cause of these allergies, to any food he ate or I ate, regardless of blood testing,  I was living in total fear.


Round 2 (January 2015): Since he was still having random hives and red rashes despite both of our elimination diets, I wanted to make sure that he was not allergic to soy since I was now consuming a lot of it.  Soy had only been tested for with a skin test.  This type of testing is not accurate for someone like TJ who has dermatographic urticaria as well. Because of this, TJ’s skin is hyper sensitive and reacts much more to irritation than the typical person’s skin. Through this testing, we found out that TJ was allergic to soy, sesame, and coconut.

My Reaction: I had been nursing TJ when I noticed these lab results had been posted to our online portal system.   Before opening the results, I remember distinctly praying to God that if TJ was not allergic to soy or anything else new, we would be okay.  I also promised that I would snap out of this world of depression and anxiety that I was living in.   However, my plan was not the plan that God had for us.   Instead, he tested positive for these allergies and we cut more and more out of our diets.  I fell deeper into a black hole of anxiety as my fear intensified.  


Round 3 (April 2015): I was still breastfeeding on an elimination diet of all of his allergies and TJ was eating the very basics: fruits, vegetables, some meat, buck wheat.  All of his unsafe foods were tested and soy, sesame, and peanuts went down. Peas at a 0.5 was added to the unsafe list or so they thought. (Later, we learned after a food challenge that his body was not allergic to peas.   Now, he loves and eats peas almost every day.)  Dairy jumped up very high and eggs got slightly higher. The rest stayed about the same according to the numbers.

Unfortunately, we also learned that his hemoglobin/iron levels were slightly lower than they should be.   After meeting with a nutritionist, our pediatrician, and two allergists about this, there were two different positions on what we should do about bringing this level up as quickly as possible.   Some thought an iron supplement was crucial; however, in the end, we decided to follow our pediatrician’s stand on it.   She strongly believed that the level was slightly low due to TJ’s very restricted diet.  She wanted us to add more of the safe foods to his diet that could bring up this level such as beef, turkey, and iron fortified foods.  It is important to explain how scary it was to even add these safe foods  because of his eczema and skin sensitivity. Sometimes, even a safe food would cause his eczema to flare up a little bit.


My Reaction:  By April, I had started to climb out of the hole that I had allowed my anxiety and fear to throw me into.  Like I had done during other times of anxiety in my life, I began to retrain my brain and way of thinking.  For every negative thought or worry I had, I made myself think of three positives ones.  Instead of spending my time crying about our situation and that I could not change it, worrying about everything that could go wrong every day, I embraced myself in scripture and quotes about faith like the ones below.

I began to believe that God was going to perform a miracle and take all of TJ’s allergies away.   I put all of my faith in the belief that He was going to do this.  However, once again, I was thinking of only my timetable.   I chose not to plan ahead or think about what our life would be like with a toddler with multiple food allergies.   Instead, I trusted that all of them would miraculously disappear and be revealed through this round of testing.  While it may make me look beyond naive, uneducated, and even delusional about food allergies and the scientific facts, it was what I needed to do at that time to gain strength to climb, step by step, out of the darkness I was living in. I needed to do it for TJ, for my husband, for myself, for us. Therefore, when I got those results, I cried my eyes out to some amazing people at work in an auditorium full of middle school students. (Thanks again guys for always listening!)   I cried not because I didn’t have faith anymore but instead that I knew God was challenging me, he had different plans much bigger than mine. I needed to stop fighting them and instead, once again embrace them by continuing this journey.

“Let your faith be bigger than your fear.”

“Faith – it does not make things easy.  It makes them possible.”

“Faith is not believing that God can.  It’s knowing that He will.”

“Faith is taking the first step even when you don’t see the whole staircase.”

“With God, all things are possible.” – Matthew 19:26


Round 4 (August 2015): This afternoon will be round 4, mainly to test his hemoglobin/iron levels to make sure that with his broadened diet, his levels are in the normal range and where they should be again.  In addition, our allergist is testing wheat, sesame, barley, and rye as well as the components of dairy and peanuts.   We asked to test wheat and sesame because those are potentially the next two food challenges.   After the coconut milk challenge did not go well, I am not comfortable doing challenges with sesame and wheat if either has not gone away or dropped significantly. Barley and rye are being tested because TJ’s diet is very limited with his grain intake and we are always looking for ways to increase that.   The components of dairy and peanuts will help to better understand the allergies and his likelihood of outgrowing them.

Since April, so much has changed.  However, the biggest change is that I am not living in fear anymore.  Instead of just trusting that God will answer our prayers, I have a new understanding of it all.  I was trying to convince God that I would be okay if he changed our circumstances to the way we wanted them, the way we had imagined them.   However, He was trying to show me that we would be more than just okay even if he didn’t.  Now, I trust that He is leading us to where we need to be, protecting TJ, and all of us along the way.  Therefore, while I am not sure what today’s blood work results will reveal, I am confident that we will be able to walk on, living for today, having faith in our tomorrows, and like TJ does so very well, smiling on because we have so much to be thankful for in the meantime…

Aftermath of Coconut Milk Challenge (July 11-21)

Following TJ’s coconut milk challenge that ended with a dose of Benadryl and monitoring him, I tried my hardest to remain confident that God is protecting him and leading our steps in caring for him.  However, it was extremely difficult.  Anxiety started to creep in more than it had been in awhile.   The intensity of this worry and fear did not show up until Monday since my husband had been around all weekend.  However, once Monday hit, against my will, I started to dread everything that we had planned this upcoming week.  The fact that TJ was cutting his fourth molar and his eczema had flared up, irritating him, was not helping the situation. I feel guilty even using the word dread to describe my emotion.   But, it was only the truth.   I myself wasn’t feeling well so that too intensified it all.

On Tuesday, one of my close friends had invited all of our friends over for the day and night.   If we had kids, they were invited too.   While I had always loved going there, being at the beach, and hanging out with friends, I had a sick feeling in my stomach.   Before Friday’s coconut milk challenge, I had seriously been considering staying over even though of course I worried, mostly about food and eczema issues.  (It’s funny how different the things are that I worry about now than what I worried about five years ago or even a year ago.) Anyways, after the challenge, I was feeling 50/50 on whether or not to stay the night with TJ or not.

Then, I found out that my friend would be making a pesto dish for dinner for us.  I knew then I could not go.   Now, this is where I battle myself often.   Do I realize that this may be irrational to most people? Yes! Do I realize that this may even be over the top for TJ? Yes! I even asked my husband over and over again (as I tend to do) what he would do and what he would have done? While he helps most of the time, his answer did nothing but frustrate me even more because I really had just wanted someone to decide for me.   It was easier than making the “wrong decision.” My husband continually told me that “I don’t know what I would do because I am not in that situation. There is no wrong decision.   You have to do what you are comfortable with.” Then, after more questioning, he admitted, “I probably would not have taken the 1+ hour drive down at all because I am lazy.” Oh, how I love him. =) Grrr… I was so frustrated mainly with myself.

Final decision: I drove down for the afternoon which only turned out to be two hours about since TJ’s skin was not good.   The car ride both ways where not so pleasant because cars are where TJ scratches with his eczema the most.  Car rides involve me singing, talking, praying, dancing, tickling, playing, trying not to crash…. Car rides with a screaming baby/toddler are the worst especially when he is making his skin red and more irritated.  Part of me did not want to go at all anymore due to his skin but then I thought about what was best for TJ and I thought getting out and socializing with a bunch of other kids would be great.   Not once, did I think about what was best for me. I wasn’t sure that is what you do anymore as a parent…

I did not stay over though because being in a room where pine nuts were being used to make a pesto that would be eaten by everyone and then being in a room full of people eating it, were both not what i was comfortable with for two main reasons. 1) We don’t know TJ’s reaction to nuts at all.   Both his classroom and our house are nut and peanut free for now.   We only know he is allergic based on his blood work results and levels.   After seeing that a low 0.6 level of coconut could make TJ mildly vomit, I did not want to find out whether or not he would have a reaction, nor what it would be.  2 ) We were over an hour away from home.

The hardest part was once we were there, I wanted to stay and he was having so much fun.   I know I am not suppose to think this but on the way home, I could not help but to reflect on the fact that if our story did not involve multiple food allergies and eczema, we probably could have managed staying over even without all of our packed belongings.   However, this is our story for a reason.   TJ is mine for a reason and despite how frustrating Tuesday was, I am forever thankful and blessed.

However, Tuesday night I cried my eyes out to my husband.   I wanted to stay.  I felt like I was losing a lot of friends with all of this.   I felt like I was very alone with it all.   It is a difficult feeling to describe when you have so many family and friends around you to be grateful for and then you have these thoughts of being standing solo.Then of course, I started to feel worse for getting frustrated because I know that so many people are living with much worse battles than ours.

The next day when a friend nicely questioned my decision to leave, asking questions about it.  At first, I started to get upset because I felt like this confirmed people everywhere in my life were judging me and how overprotective and careful I am with all of this.   Then, I realized that this is exactly what I needed and wanted.   I wanted people to question my actions and driving forces and reasoning.   I felt more connected that way.

On Friday, we had plans to see some amazing family and to go swimming in their salt water pool which I had read and heard so much about it being good for eczema.   However, TJ’s skin was much worse and as we were getting into the already packed car, he scratched at his legs so much that they both started to bleed. We couldn’t go…

However, TJ napped and woke up, like usual, smiling on and on…

July 10, 2015 – His Body Just Isn’t Ready Yet – Coconut Milk Challenge

Things have been going extremely well this summer with everything.   TJ and I have our own routine and are having a blast.   I have been working through many of my food fears and even introducing new foods to his diet such as raspberries, strawberries, chick peas, and spinach.   This may not seem like anything at all; however, with a child with multiple food allergies, any new food that is introduced with no reaction is an amazing feeling, an amazing step.  I prayed a lot leading up to the summer months and continue to do so that I would trust in God to guide me because if I didn’t I would be sitting in the house all the time sheltering him and myself from everything.  On a positive note, his skin has been pretty good despite some problem areas and minor flare ups.   Every new food or new activity I feel myself become stronger and the bond between TJ and I also growing.  It sounds quite dramatic but to be honest, it is quite liberating. Each new food or new activity that we try is a step closer to normalcy (if there is such a thing).  I don’t talk about these feelings often because I know that it just  labels me as even more of that “crazy allergy mom.” Don’t get me wrong, I speak up and protect TJ from his allergies in all situations and am told by my husband at times that I am too cautious.   I know and am 100% fine with this protector/advocate role that I play as his mom.   In a way, all moms are like this.   However, I would be lying to everyone including myself if I said that the thought that others who do not know this world of food allergies/eczema are definitely judging me for this same detrimental role,  I would be lying. However, the past few weeks have been ones full of baby steps forward.  While I was still only comfortable with baby steps, they were getting slightly larger since really everything seemed to be working in our favor. Or at least that is how I felt before today’s challenge.

Today’s food challenge was for coconut milk.   According to blood work numbers, this was and is his lowest allergy.  With a 0.6, I was never told to eliminate this from my diet during the six months of the elimination diet.   Our doctor, allergists, and nutritionist all agreed, this was probably not a true allergy.  Since you had passed soy at a 2.6 and peas at a 0.6 a month ago and doing very well with both of them, I was not as worried as I had been in the past.  Plus, all of the forward steps, we had taken together since summer vacation started were also building up my confidence.

There was only one part of me that still worried about this challenge and it was solely based on the fact that we had cancelled it back in March when TJ was ten months old.   It had been suggested that we do this challenge so that he could drink coconut milk when he turned one.  However, the morning of the challenge, TJ woke up puking with the stomach bug. This had never happened before so  I took it as a sign back then that his body wasn’t ready for any food challenges and that we would wait until his allergies were retested around his first birthday to come up with a plan. Since TJ was allergic to all types of milk when tested at 7.5-8 months including cow’s, oat, almond, soy, goat, this was a tricky next plan.   Today, it confirmed that this was indeed God’s way of warning me not to put TJ in the food challenge back in early March.   However, now he seemed to be doing much better so I talked myself out of that slight doubt in the back of my head.

We arrived at the challenge and our allergist, Allergist #1, informed us that recently he had two unexpected challenges.   A child challenged beef which was a level 3 allergy and passed while another child challenge cow’s milk which was a level 1, low allergy and failed. I hate that wording “failed.” Let me restate that, his body just wasn’t ready yet.

(That little voice of doubt in my head was becoming a bit more vocal…)

Coconut Milk Challenge:

9 am – We gave TJ about an ounce of coconut milk in his sippy cup. He licked his lips a little bit and our allergist asked if he usually does that.   “No he does not.” – However, TJ was is usual happy self running around, smiling, playing so our allergist left for ten minutes.  I didn’t have a good feeling; however, I never had a good feeling during any of these.

9:10 am – Our allergist comes back and inspects TJ’s body, throat and mouth. We are instructed that we can give him more coconut milk.   He drinks 1-2 more ounces and he leaves us again.   About a minute later as TJ ran around, he spit up the milk.  I went to go get the allergist and we stopped the challenge.   TJ received Benadryl just in case he had more of a reaction.  His body just wasn’t ready yet.

Two weeks before the challenge we had emailed out pediatrician asking if we should do the coconut milk challenge at all since we really didn’t plan to give it as the milk.   He was doing so well with soy and we didn’t feel the need to switch it up.  However, she informed us that we should always go with the food challenges if suggested by our allergist because it is good to cross more and more of these allergens off of our long list.   We trust her and went through with it.   However, he did not have the outcome we prayed for.   His body just isn’t ready yet…

As much as I continue to tell myself this and that I am okay, I do feel myself taking several steps back.   My fear is a bit greater again and I feel like there is no one to tell this to.  Therefore, I pray that God guides my steps and us on this journey.   I put all of my trust in you God.

While my smile has been overshadowed by fear again, I still am so much better and stronger than this past winter.  Of course, I have to find it in me to smile since TJ just continues to keep on smiling and smiling even without coconut…