Ready to roll! May 18 begins our journey through OIT!

XOLAIR is underway - Faith has received her third round of injections.  

OIT is back on for May 18.

We are not nervous....OK well we are nervous!  However we are so ready to begin this journey that will take us to a life filled with more freedom.

A life that will allow our children to eat food that "may contain nuts" that they are allergic to.  The goal of Oral immunotherapy for our children is to become "bite proof".  They  will likely never eat a hand full of nuts.

So this begins the countdown to OIT.

12 days
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For more information regarding OIT please visit the website of Dr. Chad Mayer

www.oitcenter.com

After Months of Silence....

Where have I been?

Why the silence?

I have spent months of dealing with the anxieties and the after math of a severe allergic reaction. Our allergist suggested Faith's immune system would reset itself after 6 to 8 weeks.

That would have been September at the latest. We are now into April and her immune system never did reset itself. Chronic hives, major anxiety and asthma flare ups became a part of our daily lives.

Our allergist recommended we try Xolair injections.  Xolair once approved for asthma is now approved for chronic hives as well.  Faith qualifies in both spectrums which translated into the insurance approving what may have taken months and months of reviews in just two short weeks.

I have leanred that Xolair was originally in development for use with food allergies when a pharmaceutical bought the rights and developed Xolair for a much bigger market "asthmatics".

The best way I believe to explain Xolair is that it has the potential to put asthma in "remission".

Faith has received Xolair for the past two months.  Three injections followed by a two hour waiting period.  The next visit two injections and a three hour wait (due to allergy concerns).  

Xolair itself can cause an anaphylactic reaction in A small percentage of 

people.

Faith's allergies and asthma are not yet under control.  Hopefully this month and the next series of injections will be the beginning of that control.

We have scheduled OIT for May 18. Our hope is that Faith's allergies and asthma are at a place where she can move forward. We have waited along time to begin this process of desensitizing food allergies. One year from today our lives could be so different, the quality of life so much better. It is our prayer that this OIT is successful for all three kids.

So the countdown begins. 

Again.

If you're reading this, please keep us in your prayers and believe with us in faith for healing.

Another vacation and a new approach to eating while out of town

A vacation to Gulfport Mississippi and a whole new way of working on avoiding food allergens. It is amazing how creative you can be when you need to cook food in a room that does not have a stove and microwave. We brought a griddle and foods that can be microwaved in the hotel microwave in the lobby.

We will be making a trip to the local grocery store to get food that can be prepared simply and easily.

Our goal is complete control over every food the kids eat to avoid another allergic reaction while on vacation.

The real story of life after an ANAPHYLACTIC reaction

I believe most people think of an allergic reaction as an unfortunate but brief inconvenience.  I believe they probably think...reaction, medicine, recovery...simple & easy. 

I know this because I formerly was one of those people who thought it was as simple as giving an epinephrine injection, going to the hospital and then easy street to the road to recovery....piece of cake.  

Was I ever wrong.

As a result of being exposed to their nut allergens, I have watched my kids be suddenly unable to walk due to joint pain from inflammation, one experienced a collapsed trachea, two experienced chronic hives, all experienced major anxiety attacks, fears of eating, the list goes on.  Whether these things resulted from anxiety, psychologically or physically, the result is the same - life altering.

Faith's most recent reaction a few weeks ago has resulted in chronic hives, asthma, fears, separation anxiety, food anxiety and resulting withdrawal from life and activities.

Our lives are most definitely interrupted to a degree I cannot begin to explain.  My heart breaks for Faith's constant fear of eating and separation anxiety.  Leaving for a quick trip to the grocery store is almost too much for Faith as she texts and sends me picture of her hives in fear that she is in the beginning of another anaphylactic reaction.

Two of my kids who experienced lingering health issues and fears also would not wear the clothes they had on during their allergic reactions.  As if somehow the clothes played s role in the nightmare of Anaphylaxis.

If I did not have hope in God and believe that there will be better days, I don't know how I would get out of bed in the morning.

This is one of the messages I recently received when I was out for a quick trip to the pharmacy.  I had turned my ringer off at church and forgot to turn it back on...

This is another reminder of why we must pursue our plan to start OIT at the earliest possible opportunity.  Avoidance has failed us time and time again. When the time is right, full steam ahead!  

Until then I continue to put my trust in God to see us through and to heal our kids one way or another.

OIT - the journey continues

Remember the last post "Starting OIT, God willing"?

Faith's chronic hives and rash continue, along with a sore throat.  Dr. Mayer advised us we need to get Faith's current issues under control before starting OIT.

Frustrating... However it is important to be in the best health possible when starting OIT as it introduces serious allergens to the immune system.

Dr. Mayer will give us another date toward the end of August or early September.

God has a plan and it is GOOD!  So we patiently wait and know that eventually, we will begin OIT.

The Aftermath of an Anaphylactic reaction

It has been five days since the allergic reaction, epinephrine and time spent in the emergency room.  Faith is extremely food and contact allergy phobic.

There is not much I can say or do to change this, she continues to have hives and a cough and the mental scars of ingesting of food she was told would be safe however ended up causing a life-threatening allergic reaction.

The allergic reaction as terrible as it is and is scary as it can be, is only part of the problem. The fear and phobia that rises up inside of us when suddenly we wonder if there is a food that we can trust. God help us🙏

http://allergicrevolution.blogspot.com/2015/07/food-fear-factor.html?utm_source=twitterfeed&utm_medium=twitter&m=1

Vacation, AuviQ and a brief stay in the ER

Day 8 of our vacation ended with one child experiencing an allergic reaction after eating at a new (to us) restaurant.

Despite questioning and confirming the safety of the food we ordered, she began experiencing breathing difficulty and stomach ache as soon as she began eating. 

We calmly went to the car to use the AuviQ, however she did not feel immediate relief.  Thankfully the hospital is within 2 miles of the restaurant.  I drove to the hospital as a precaution.

The ER staff at McLaren Petoskey was the absolute best with their response to our allergic reaction.  We have not received better ER care for our allergic reactions than this trip tonight.  

As frustrating as these food allergies can be, there is nothing gained by getting angry or upset.  I am thankful that my daughter is stable and for wonderful medical support.

God is faithful to see us through each challenge we face and this challenge

is no exception.

Needless to say it may be awhile before we brave a restaurant dinner again.