LIVING

With EoE, Allergies, Asthma and a G-Tube

It Hit Harder Than I Expected.

This is long…

Gage has been trialing dairy. He had been begging to trial it. Our GI said okay, let’s just let him trial it and see what happens. The thing about dairy is it’s a huge trigger for the majority of EoE kids. The last time Gage had dairy he was 4. It was the very last thing we removed from his diet before he got his feeding tube.

Gage has had symptoms. He’s typically not symptomatic. He has had blood in his stool, his throat burns, chest pain, reflux, dark circles around his eyes… all signs he was failing. I only knew about the eyes and blood. He was keeping the other stuff from me, but told the GI doctor at our appointment. The thing about my boys is they don’t tell me these things unless it becomes unbearable. They’re tough kids. 20160128_080054A few days after the check up with GI Gage had his dairy trial scope. I knew it probably wouldn’t be good. After the scope the doctor came out with pictures as usual. He said it really hadn’t changed since his last scope, which was a fail. So I assumed dairy was a fail, but had hopes that maybe it was a low fail and it may be something he can have every now and then. He has so many Ige allergies it almost seems like we’re running out of options to trial. Ige allergies are separate from EoE triggers. They can sometimes cross paths, but if he’s having a reaction to a food he’s not going to trial it in fear of an anaphylactic reaction. 20160128_095525

Today the nurse called me with the results. Dairy is a huge fail for Gage. Eosinophil counts should be zero in the esophagus. Gage’s mid esophagus count was above 120, his lower esophagus was above 100. We will have to remove dairy for 6 weeks to let him heal and not add anything new in. We then need to decided if we want to wait 2 more weeks and scope him to make sure he is back at zero. We had removed rice, his first passed trial, because his numbers continued staying elevated. Which I think we will scope at 8 weeks. Then he will begin a lamb trial. With $5 strawberries and blueberries right now, along with $6 bags of shrimp and Tinleigh’s $5 chocolate chips why not add a super expensive meat. I may need a go fund me page just for our grocery bill. 20160128_100201

I am so sad for Gage. I don’t even want to pick him up from school today because I don’t want to tell him it’s a fail. Dairy was his dream food. He can’t have it, probably, for the rest of his life. This disease sucks. I can’t stop crying today. It’s rough on a mom. I know it’s him going through all of the scopes, skin prick testing, allergic reactions, pain from food trials, disappointment from failed scopes, it breaks my heart though to watch him endure all of this. It’s becoming harder and harder for me to stay positive for him, but I do.

This was a hard year for me. I’ve spent the last 6 years navigating this disease for 1, then 2, now 3 kids. I’ve learned so much about food, ingredients and have memorized so much. I’ve learned to keep them safe and taught them how to keep themselves safe. Crossing into 2015 I sort of took a step back and focused on myself for a bit. Something I hadn’t done in a long time. I chopped my hair off, got glasses that I had been avoiding for 10ish years, got myself into shape and started delegating jobs around the house so I didn’t feel so overwhelmed. It was the scopes in June that it hit me. I was feeling really good about life then I got the phone call that they had failed their scopes. I’ll never forget the feeling I had after that call. It hit me like a ton of bricks. Sort of like a back to reality hit. I cried and was really upset, more than I normally am. It really got me thinking and I’ve had a million conversations in my head the rest of the year.

I think I’ve entered the next phase of a mom with chronically ill children. The first phase was figuring everything out. Not it’s just a this is life, forever, phase. The reality is, it’s really sad. Do other moms like me go through these phases as well? It’s exhausting to think about. I don’t know why, but I feel really emotional now about the kids when it comes to EoE. Maybe my mind was so occupied before trying to figure everything out that I didn’t really see this lifelong disease for what it is. Now that I seem to have a lot more knowledge I can see the LONG road ahead of us. It seems like yesterday that Gage was diagnosed. It’s been 6 years. It flew by so fast.DSC03429

I’ll never forget the first few videos about EoE I watched in horror thinking that will never be my kid and we’re going to beat this. Boy was I wrong. Maybe that’s also part of why I feel the way I do now. I am exhausted from hearing blow after blow for them when it comes to more Ige allergies and more failed scopes. I know that’s how it’s always going to be. Today when I told Nathan about Gage’s scope results and how I just can’t quit crying for him he told me “Gage is strong. I need to get it (crying) out of my system and be strong again for him.” He also said “You are much stronger than you should be asked to be.” He’s right. That makes me wonder, maybe I’ve just held all the tears in for 6 years and I just can’t anymore. I don’t know. It feels like I’m somehow on the other side of things now looking in. Does that make sense? Maybe this seems silly to some for me to share all of these emotions, but there may be another mom out there wondering and feeling the same as I do. My blog has always been to help others stay positive and keep going. I have hopes to let other moms know, they’re not alone and that I’m not some wonder woman. I have feelings too. I’m going through my own journey as the kids face a chronic illness.

I do know that we will move forward as we always do. Gage and I will probably share some tears tonight. Tomorrow is a new day and this is our life. We will focus on something happy, like our upcoming vacation, and push the bad aside. Please lift Gage up in prayer that he has the strength to keep moving forward with a positive attitude. I know that God will give you, at times, more than you can handle. That’s when you lean on Him for guidance, strength and all you need.

Isaiah 26:4

Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal.

If you have a $1 or two to spare, please donate in our name to CURED and help us find a cure so one day Gage, Charlie and Tinleigh can eat food again.

February 2, 2016 - Posted by | Gage's allergies, LIVING | , , , , , , , , ,

7 Comments »

  1. Thank you for sharing. I understand so much of what you shared here. I find myself going through similar phases. Failing dairy was also the hardest blow for my EoE son. It’s good to shed those tears and mourn for your son’s loss. I will pray for strength and peace for you as his momma. When I’m really sad about the magnitude of everything, I try to focus on how much love we have in our lives, and give the hugs and kisses nonstop. Hang in there!

    Like

    Comment by Elise | February 2, 2016 | Reply

  2. Oh Kara, I hope you know I am that other mom who knows the heart ache your feeling. Your also not alone- we have so so much in common. Having kids (3) or however many with a chronic illness requires a grieving process that is continual. There are times when we feel empowered, and like we got this and we get through hard stuff without any grieving, and then there are other times where I feel overwhelming heart ache for them, for all of us as a family and it feels like too much. Honestly I feel like we’re in a constant cycle of levels of grieving and I don’t think we will ever not grieve at different levels and different times because as this disease is chronic so is the process of coping! We are chronically coping with so much. I am so grateful and blessed to live in a time with the ability to connect with others from all over the world that are battling the same villains and can share their strategies, or just be an ear to listen that totally understand what I am going through. That is the sver lining to me, that so many around me don’t understand what I am battling and coping with. They try to be the best support they can be but they don’t understand like you do or many other moms I have been so blessed to find. Just knowing I can reach out to my fellow chronically coping mom’s who actually get it, is priceless! Give yourself time to grieve, and in no time you will be back to feeling like a BOSS, and can be strong for your sweet boy! If you need an ear to listen I am a PM or phone call away! I would be honored to listen when you need a friend! Prayers coming your family’s way!! Xoxo

    Like

    Comment by Jenny Frisk | February 2, 2016 | Reply

  3. Reading your story is so uplifting, we don’t have children or grandchildren with this illness and can’t imagine. Your families struggles everyday. When I saw them at Bible school this summer you wouldn’t know that they have health issues!! To me they were happy little kids having fun with everyone and enjoying life. Thank you for sharing your journey with your family , Prayers Prayers and more Prayers !!

    Like

    Comment by Carol Howell | February 2, 2016 | Reply

  4. Thank you for sharing your story. We paralleled your story with wheat, as we just got our results of fail. He was so hoping for a pass, but deep down I think we all knew it was not. (They scoped on it in June and passed but my gut feeling was that they missed it, and he was getting worse and worse, hence it was a re-scope!) I’m so sorry that you are on this horrible roller coaster (x3) with me, but like you say, trust God that he put these precious children in your care because you are strong! You are a warrior mom, and have a wonderful support system of moms like us that you can cry to anytime, without judgement! Stay strong, and your whole family will forever be in my prayers! PM me to chat anytime–we can do it together (my son just turned 10 if your son wants a friend to talk to!).

    Like

    Comment by Cathy | February 4, 2016 | Reply

  5. So thankful I found your blog. I have a two year old who is about to be diagnosed (GI doc told me he has it based on EGD pics but waiting for counts next week). It’s a lot to take in for a mama. I’ve already read a ton of your posts. I’m not sure what I’m looking for, I guess just getting a better idea of what the future will look like. Thank you for being so transparent. It really is a help to all those other mamas out there seeking help for their children.

    Liked by 1 person

    Comment by hobsonhomestead | February 17, 2016 | Reply

  6. We are an EoE family and have been following your family’s journey for a few years now. I hope you’ll resume blogging. You have a wonderful gift as a writer, and I appreciate that you have been willing to share so much.

    Like

    Comment by Shaun G | September 25, 2016 | Reply

    • Thank you Shaun. It’s so hard to find time. I just returned from FABlobcon. A food allergy bloggers conference. It really inspired me to get back to it. Life is just so crazy with 4 kids and dealing with all we deal with. I hope your EoE family is well.

      Like

      Comment by livingtheallergylife | November 7, 2016 | Reply


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: