Monday, July 7, 2014

You know when you're so behind in blogging you don't know how to catch up? Yeah that.

Since I last posted, a lot has happened. To summarize, in brief:

  • Elias got up to 75 mg of peanut flour in OIT!
  • Kids got sick. Elias had to downdose his peanut flour from 75 mg to 25 mg. Bad, bad, bad croup episode for E.
  • We packed up and spent the week at Disney. 
  • Came back and brought some high fever virus with us. Elias had to downdose again to 12 mg. (One more sickness and we would have been back at the beginning.) Asher had a fever at one point of 104.5 with Motrin and Tylenol in his system. It was a wretched, wretched virus and I about had multiple panic attacks.
  • Tried to catch up on work. Got some cool new opportunities.
  • Packed up to go to the beach for the Fourth of July. Rented a boat and the boys swam in the ocean like little fishes.
  • Blogged about OIT on WRAL's Go Ask Mom. (That's where my writing energy has gone lately.) 
Now, since I feel like accomplished something by posted a fast recap, I will get on board with some legitimate updates. Stay tuned (if you're patient enough). 

Happy Monday!

Friday, April 4, 2014

OIT: halfway through week 2



Well, folks. We're halfway through our second week of OIT for my sweet, vibrant Elias. And, you know, it's been pretty uneventful. Which is AMAZING!


He's been happy choosing between 'o-gurt' or applesauce each morning. Yogurt is the current fave, and has the added bonus of great stuff for his belly. I give him the dose each morning after breakfast, and he is under the watchful eye of his Nini during the two-hour watching period. Asher has picked up that there is medicine each morning, and he doesn't love that this means there is no outside morning play time. But, they are both little champs about it!

How am I feeling? Honestly, I walked away from that second day in Dr. Nash's office and felt lighter. I told my mom that while we are only at a tiny, tiny, tiny, tiny dose, I feel like Elias is on the way to protection. We aren't just walking around on eggshells and trying to avoid everything. We are doing something about it. We are helping him. We are able to tackle this allergy, not just live in fear. And that is so amazing. I'm so very thankful.

And something else that is certainly notable is my support system from other OIT moms. Holy crap those women are amazing. I'm not even sure how I landed in the private OIT groups on Facebook to begin with. But whatever that route was, I'm eternally thankful. I'm in close contact with a handful of these strong women, some even also see Dr. Nash. Others are much further ahead of us on this journey are so wise and reassuring. And they get it. They know exactly how I'm feeling. They don't have to try to understand, they do understand. And that bond and that support and those conversations and advice and stories and laughs are definitely a gift from God. I almost feel like I have a new group of close friends that I've never even met, but they 'get me' in ways that is so impactful in my life. Thank you to each of you. You know who you are.


Two really important things that I want to share with those in our lives. Consider this my Elias Service Announcement.
  1. It's really important that we keep Elias as healthy as possible. If he gets sick, we have to skip doses and then down-dose following that. This early in the game, that means we'd have to go back to even lower than our start dose. Not to mention, if fighting an illness, his immune system will be compromised and could lead to a reaction. Which, would suck. I know germs are everywhere, and Asher will probably bring home something gross from preschool next week. But, in general, if you aren't feeling well -- avoid us. Please and thank you.
  2. It's even more important that we continue to remain nut free and be extra diligent to protect Elias. In fact, we got his blood work back last week during our OIT appointment. His level went from a 9.3 (considered high) to a 74. (whoa). This was in a year's time. Dr. Nash said he has not seen a number go up that much in that short of a time period before. This means we have further to go to get the number down to 0, aka no longer reactive.

    I think the fact that we're in OIT can be a little confusing to those who aren't familiar with it. Yes, we now have tiny crumbs of peanut flour in our house and yes (praise God!) he's tolerating them well. But he is still very allergic, life-threateningly allergic. Please, if you are blessed enough to have this amazing boy in your life, continue to be diligent in helping us protect him. For the next two years or so, we are still nut free and will need to operate the same as we always have as far as protecting him.
Ok. Elias Service Announcement ended. :)


So, what's next? We go to Dr. Nash next week for an updose to 12 mg. I just have this really settled and calming feeling that it's going to go well, too. For now, the anxiety of an updose hasn't even begun to set it. Would be great if it didn't!

Thanks for following along on our journey and keeping our sweet boy in your prayers.

Wednesday, March 26, 2014

Day two: peanut oral immunotherapy

For Elias. Read the story behind the shield.
Alright. Well this should be an interesting appointment. On top of my nerves, Elias is in a terrible mood. He didn't sleep well at all, wasn't interested in anything I offered for breakfast and is overall cranky pants.

More to come when we get started. I probably won't be able to blog as much because Rusty is not with us today. I'll be on solo toddler duty. 

Praying for no reaction and a happy appointment. 



Well we get here and his mood improves. Has a Poptart in the waiting room and tells Sondra all about playing choo choo with daddy. Hopefully this is a good sign from God that this visit will be smooth!

8:55 The nurse just checked him out. We are waiting for our dose! 

9:00 Chat with Dr Nash. Told him I live blogged OIT. He laughed. 

9:10 6 mg dose down the hatch. Elias was thrilled about his newly beloved applesauce. Got mixing lesson from Sylvia. Now we wait. He did get a runny nose as soon as we got here but glad that happened before the dose. I told the nurse he must be allergic to this room. We are now watching Yo Yo Gabba. So far no reaction. 

Love this kid. 


9:49 We have had a nurse check, a field trip to the bathroom and a FaceTime sesh with "Ash" at Elias's request. It's so cute to me that he now calls Asher 'Ash' like we sometimes do. 
 
 

Still no reaction! Hooray! What an answered prayer. Almost an hour post dose.



10:55 Looking good! Two hours up in 15 minutes.

 

Tuesday, March 25, 2014

Day one: peanut oral immunotherapy

Yep, I'm live blogging some OIT. 

For Elias. Read the story behind the shield.


We got here around 9. Lugged in all our stuff. Felt like I was going to labor and delivery. 

 
Nurse Sylvia came in to check Elias out and get his weight (26lbs). 

We have made ourselves at home in our room. Elias is busy coloring with Dad while we wait for our first dose. 

 
Elias will open a prize after each dose. Here's his bag he's already gotten into to. (The polka dotted bag, not the food Ziploc.)


My heart is beating fast. We shall see how this goes. 


Dose 1: .1mg down the hatch. Watching now. 

Waiting. Seems well so far. Rusty is falling asleep on the exam table. We are coloring snowmen. 


Dose 2: .2mg 10:25 am


Video entertainment:


So far no reactions! Praise God!

Dose 3: (not sure of amount) 10:55 AM

Took it happily. Loves that Sylvia cooked him some more applesauce.



Now he's coloring. 

 
Dose 4: .8mg 11:11PM

Elias says "thank you nurse!" as she leaves. 

Next dose will be 1.5 mg. Then 3 mg. then 6 mg. hopefully. 

We have his shirt off to make it easy to keep an eye on him without upsetting him. But that also means every trip or bump or being held leaves red makes on his sensitive skin. So we are all observing closely. 

Dose 5: 11:35 1.5 mg 


Watching Mickey. 

 

Dose 6: 3 mg 12 noon 

We are now playing with our balloon rocket prize. If this dose goes well, we can go up to 6 mg. wait two hours and eat lunch at some point. 

Dose 7: 6 mg 12:25 pm




He's been an angel. Cooperating. Happy. Charming. 

This will likely be our last dose today. We are being observed for 30 minutes. Then we can have our lunch picnic on the floor in the room. Observed for I think two more hours. Then head home!

Thank you for praying for us. 

15 minutes after last dose, "my nose runnin momma!"  Yep. Snot flow. Went to get nurse who has gone to tell doc. 

Ok. No more snot. No other reactions. Visited with Dr. Nash and we are now settling in for lunch. 

The runny nose could be a transient reaction or completely unrelated. In either case, it cleared up fast and we are well now. 

We have made ourselves right at home. 


Now we watch our boy and wait. He's done SO well. Honestly, totally impressed me. He's been a trooper. 

2:35 Still waiting. They've been in to check on us. Just waiting for the time period to be up. Dr. Nash is so calm and reassuring. 

 
The Ann and Cille in me needed to straighten the room and reorganize the pallet. Much better. 

And we are on the way home. Given clearance to leave and come back tomorrow. 

Elias did AMAZING. 
 
 

Monday, March 24, 2014

The story of the shield

For Elias.
Psalm 3: For you, Lord, are a shield around me.

Last year, when we first received the diagnosis of Elias's life-threatening allergies, I was a wreck. 

One of my close friends called me one day and told me that she thought of me in church that Sunday. The preacher was speaking about Psalm 3. She went on to explain that God would be a shield around Elias. That we would also be a shield around him. And, he'll be okay.

I've recalled that conversation with her many times. And I believe the shield was a message to me from God through her. And I'm so thankful.

I asked a designer friend to create a shield for me for our first day of OIT. I explained the meaning behind it, and told him I wanted it to say 'me' but with an emphasis on the 'E' for my Elias. So, here it is. And I love it and I'm so thankful again.

Tonight, as we prepare for our first day of oral immunotherapy tomorrow, I'm a range of emotions. It's a big leap, that starts with a tiny step. I'm scared. Nervous. Shaken. Thankful. Blessed. Happy. Anxious. Prayerful.

But I'll work through our new normal. We will figure it out. And with the tremendous support of our family and friends (seriously, you guys are the best), we will champion on against that darn peanut.

Stay tuned for updates tomorrow. 



Twas the night before OIT

And Momma is a nervous wreck.

Little One has no idea what a big deal tomorrow is.

Momma feels kind of guilty for putting him through this when he has no say.

At only age two, though, the benefits of getting him desensitized sooner make OIT a top priority.

Momma focuses on the future.

Starting kindergarten with no fear.

Learning to let go a little with less fear of food and more fear of riding his bike too fast or other normal boy things.

Tomorrow morning at 9 AM we report to Dr. Nash's office. With blankets and games and prizes and a cooler and a lunchbox and a backpack and the mighty iPad - we will arrive.

I'll probably be visibly shaking.

We're going to feed my sweet, sweet boy .1 mg of peanut flour. Yes, that is point one mg.

We'll wait 20 minutes. Hopefully he'll be bored as I stare at him looking for any remote sign of a reaction.

If all is well, we'll proceed to .2 mg I think. Wait again.

And we'll repeat, gradually all day.

I pray my boy will take the doses without a fight. Because if he fights me or cries, it will break my heart and just make it worse.

By the time we reach the day's final dose, we hope to be at 3 mg. We'll wait several hours to be sure all is well (no reactions). Then we head home.

Momma probably won't sleep. Momma will thank God for the Angelcare monitor in the crib.

Wednesday morning, we head back to Dr. Nash's office for one dose. This time we'll start right at where we stopped the day before. Wait and (hopefully) tolerate. And then we go home with two weeks worth of 3 mg.

We will dose at home, daily. In two weeks, we go back for an updose.

We'll repeat this until we reach 2400 mgs of peanut flour (the equivalent of 8 peanuts).

I think I have those numbers right. Gosh, I need to take better notes.

If/when we get sick, we stop for a max of 4 days and then down dose. We must have two hours of quiet time after our dose every day. Sickness or raised body temp can cause a reaction. We have to adjust our lives and routines around this very important journey. 

We'll stay at 2400 mgs for a year, as maintenance. Then after a year, we attempt to pass the peanut challenge. I think that's 24 peanuts? I'm not sure. It feels so far off.

What I do know is Dr. Nash uses the protocol from Duke. It's conservative. It's very slow going. And he won't budget from it (from what other moms tell me). I like conservative. Slow and steady wins the race.

Momma needs to go pack the bags and stuff. And maybe take my anxiety meds. Or something.

Please say a prayer tonight for our Elias. Please help us as his parents to trust in our decision to do this. Please pray that his body will adjust according to God's will and that if a reaction occurs we have the wisdom to recognize and help our sweet boy. And please help him to cooperate and one day be extremely thankful for this life altering journey. That starts tomorrow.

Thursday, February 27, 2014

You'll Be Okay - My song for Elias



As we venture into the world of oral immunotherapy for Elias, I stumbled upon this song.

And it spoke straight to my heart.

I hope he trusts what we're doing for him and with him. I hope he grows up and reads this and thinks, "My parents flipping rock."

I pray if we have a reaction during treatment or an accidental exposure in the years ahead that we have the strength to be strong and that he marches through it with the same zest and vivacity that he portrays every day, in all that he does.

I pray when it seems overwhelming to us as parents, and scary, that we can look at each other and say it'll be ok. Elias will be ok. And know that without a doubt.

So, my sweet boy. My brave, brave boy that doesn't even know how brave he's about to be. You are amazing and we're going to get through this together. Just as we've gotten through every day since we discovered that we needed to protect you from your allergens.

And, you'll be ok, E. You got that? We'll all be ok.

You'll be okay 
You'll be okay 
The sun will rise 
To better days 
And change will come 
It's on it's way 
Just close your eyes 
And let it rain 
'Cause you're never alone 
I will always be there 
You just carry on 
You will understand 
You'll be okay 

Wednesday, February 26, 2014

OIT and being hopeful


What do you do when you find out your child has life-threatening food allergies? When they test 'high' for the peanut protein, which is one of most dangerous food allergies? How do you manage in your heart and brain that any activity and any trace of this peanut protein could signal his body into anaphylactic shock? How do you educate everyone around you without losing your mind and alienating yourself (and your child)?

I'll tell you what you do.

You research. You find common ground with other parents. You research some more. You sign up for local support groups. You get your name on the clinical trials lists for exploratory treatment. Your heart leaps at every news story of someone dying from accidental exposure to peanut. You watch the documentary that was just released equating the rise of allergies to an epidemic. You raise money and walk in the FARE Food Walk. You think and prepare for the worst.

You ask questions. You hover over your child. You switch to parks with sand instead of mulch. (Yes, mulch can harbor peanut parts. See? The research pays off when you discover such things.) You dismiss the looks as you wipe down tables and high chairs and put down those plastic table covers. You ask for the manager. You stare at your child as they eat. Every meal.

But along the way, you learn. You learn to be cautious, perhaps overly-cautious to some, and protect your child. You learn that there amazing doctors out there making strides to helping those with food allergies. You change allergists and learn, by conversation during an hours long appointment, that OIT is an option for your child.

OIT?

That sounds familiar. Yes, that research. It indicates that OIT - oral immunotherapy - is working for children with food allergies. Hold up, Mr. Allergist. This is an option for us? But we aren't even two years old here.

Yes.

You run to the car and tell your husband. He thinks you've been sold on some crazy treatment that's just a gimmick for the doc to make more money. Not covered by insurance. Super expensive. That's all your husband hears. You rally the troops. You talk to the grandparents. You pray about it. You talk to other moms with kids in OIT. You drag everyone back to the allergist for a consult. Your heart leaps with each news article and research report that comes out, promising hope with this treatment.

And you decide, as my husband put it, that there are some things you just do for your kid no matter what. Who cares the cost. Who cares if the FDA isn't on board yet. Who cares if it'll be stressful and time consuming. It could free your child, and it could free your family. You make it happen.

So, this is where we're at. A month from yesterday - March 25 - we will begin OIT for Elias.

To put it simply, we will give him tiny, tiny, tiny, tiny amounts of peanut flour (for starters) daily. For two years. Gradually increasing the dose. Until his body learns to tolerate peanuts. It's just like allergy shots, same premise. We'll start out on the first day, for eight hours in the doctor's office. We'll head back for the second day. And then we'll continue at home. After each dose, a two-hour rest period. And hopefully no reactions. And every few weeks, we go back for an updose. If we're sick, we down dose - and pay careful attention for reactions during illness since his immune system will be overloaded.

And, after two years, if all goes well, this allergy will be old news. The stress, and fear and panic that I feel daily trying to protect my son will never be felt by him. He won't bear the weight that I bear right now. And that is worth everything to me. We could potentially send him to school without this cloud looming over our heads. We could go to birthday parties and family reunions without carrying our own food. We could vacation without me vacuuming the hotel room. We could eat cakes from bakeries and ice cream from ice cream shops. We wouldn't have to fear for our child's life every single minute. Hopefully.

I'm pretty terrified. I'm sure I'll be a wreck, particularly if he has a reaction. But, I tell myself that a reaction in a controlled environment - with the end goal of moving beyond this allergy - is better than an accidental exposure at any point for the rest of his life.

The only thing that scares me more than OIT is the fear of Elias living with this allergy for the rest of his life. So, we'll step up and out and into the unfamiliar. And we'll remain diligent. God will be a shield around my baby boy. I believe that. And I'm hopeful.


Wednesday, February 5, 2014

Life, lately. On allergies. On anxiety. Inside the brain of this food allergy mom.

There are some things you don't know until you have to know them.

Like, a fever of 104 degrees in your child doesn't necessarily mean you have to rush to the ER in the middle of the night. And sign-ups for preschool that starts in August actually take place in February. And you can function for an entire day, quite well, on only a few hours of real sleep. And bird seed and yard mulch and duraflame log starters include peanuts or peanut shells.

Yep. These are the things I know now. And know so well that my head wants to explode. Specifically, regarding the latter set of things.

My baby boy was diagnosed with a life-threatening peanut allergy and in many ways, all that crippling worry I felt while struggling with post-partum anxiety came rushing back. All of a sudden, worrying about germs seemed so trivial. The flu? We'll manage and I'll worry through it. Just please Lord, protect my child from peanut proteins.

And that's just it y'all. The things I didn't know, I now know. And need to know. And they are with me every minute and every hour of every day. Tiny little minuscule, invisible pieces of peanut protein can harm my child. There are stories that I read on the support groups of something you can't see or even identify that are sending children like mine into anaphylactic shock. Trying to understand and appreciate this fact -- while making safe changes to our family's way of living -- without totally turning into a crazy person is really hard. Especially for me.

I have been pretty silent on this blog since the diagnosis. I've had a thousand conversations in my head that I've wanted to share. But it's upsetting to type them. I remind myself that we thankfully are not dealing with an ongoing serious illness, or struggling to put food on the table. In the grand scheme of things, having a food allergy is manageable, and preferred, even, to something just awful like cancer or a debilitating accident. Right? And, when I think about how hard this feels, I think about parents who struggle with more food allergies to things like milk, soy and eggs.

I am just having a hard time, if I'm honest. A really hard time. Rusty told me the other day, "I don't think an hour goes by in your day that you don't think about peanut allergies." And he's probably right.

We struggled through Halloween. We trick or treated with Elias in the wagon and Asher actually going door to door. We left the candy in the garage, swapped it out and washed our hands. And I kept vigil on Elias all night.

Then came Thanksgiving. We asked our family to please not eat any nut items at the table with Elias (he's also allergic to pecans and pistachios that we know of) or bring the popular pecan pie to the pot luck gathering. It reality, pecan pie was probably consumed at the cafeteria table before we got there and could be on the surfaces. And, now that I'm thinking about it, it could quite possibly be on the doorknob to the bathroom. And we all know a not-quite-two-year-old is going to gnaw his fingers constantly. So, while we were able to provide some cushion in our requests, there was still 'that chance' in a cafeteria or large family gathering environment. How to cope with that? My heart beats fast just typing it.

Christmas went smoothly. I managed without medication (yes, I medicate to get through tough times without shame). We hosted a big family dinner here at our house and everyone was so kind and gracious to check labels for me. I felt we were safe under our own roof, but I still watched him closely.

Here we are in a new year. I'm working with my doctor to try to get a grip on my anxiety. I need to feel joy more. I'm trying to rely on prayer and the trust that God is a shield around my Elias. And we are following very closely the findings coming out about the ability to desensitize peanut allergic children. There is some real progress there from amazing doctors who see that this is an epidemic and care enough to find a cure, not just arm us with EpiPens. (Much more on this later.)

I'm hopeful.

Meanwhile, I'm trying to balance my worry with reality. I'm trying to not fault my husband for rolling his eyes every time I tell him about other kids who had reactions. Like the kid who had a serious reaction when they were playing with bird seed in the sensory table at preschool. Or the families that had to ask their neighbors to not feed birds or squirrels the bird seed with peanuts in it because it was found in their yard by their allergic child. But these things happen, and are happening. And we need to know where dangers are.

I'm trying to educate those around me. And be appreciative when they listen and help. I try not to obsess about what we'll do when it's time for Elias to go to preschool or kindergarten. I try to not cry when I think about him having to deal with this allergy for the rest of his life. I try to not let the Snickers bar wrapper on the playground ruin our time together playing. But, it's hard.

I read labels like a fanatic. The FDA doesn't require companies to put 'may contain' or 'trace' warnings on labels. But many do. I try to stick to those brands when I can, knowing that if there was a possibility of a trace of cross contamination it'd be written there. I ask Joni to please check labels behind me when feeding the kids. And she'll call me in if something like a hive pops up on Elias so we can both examine the situation.

See? It's constant the things to think about. My anxiety is greater in unknown situations. And dealing with a food allergy is a big unknown. You don't know how or when a reaction will occur. And, it's hard to turn my brain off.

I want to turn this anxiety energy into positive energy. I want to advocate for my child. I want to hug my husband and kids extra, extra more. I want to thank our families over and over for their support. I want to push for better legislation for restaurants and labeling.

This crippling cloud of nut allergies that's hanging over me - it's over me for now. One day it won't rest on just us as his parents and caregivers. It'll be over him, too. And that just breaks my heart. I don't want him to feel what I'm feeling. And we vow to do whatever we can to help him and protect him, and hopefully eventually desensitize him.

I'm hopeful.

For now, though. I felt it heavy on my heart to share my personal story with where I'm at with all this. And now that I've 'broken the ice', so to speak, I hope that getting back to writing and sharing will help bring a little bit of healing. For my brain and my heart, and as a result, some healing for my family.
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