It is awesome that Gage and Tinleigh are eating now. As of today Gage has added apple, buckwheat, corn, pickles / cucumber, VeganEgg, squash and oats. Tinleigh is up to banana, corn, squash, potato and pear. Tinleigh tried pickle and coconut but had a reaction to both. When she tried pickle her bottom lip swelled up and with coconut her throat felt funny she told us.
What I completely forgot about was how hard it is to cook for all the people! I try to make fun things for them to eat so they get the full spectrum of foods with what little they have. I’ll tell you what though, it’s tough. Every recipe is 50 different ingredients. The dishes pile high and then it feels like you’re starting all over again.
I have successfully made Gage some buckwheat cornbread. Just to see the smile on his face when he eats it defiantly makes it all worth the while. He’s also had buckwheat pancakes and buckwheat apple cinnamon muffins. I think he’s in heaven . I tried to make Tinleigh some banana coconut muffins but those bothered her throat. She’s loving corn and we had totally forgotten about corn pasta! Huge hurrah for that. She keeps telling me she is just having the best days of her life because she can eat different foods. Makes my heart smile and break all at the same time.
I’ve found them dried fruits to snack on along with safe fruit leather. Gage can eat crackers and they both have noodles now. It’s all so exciting to them. Potato chips, corn chips and popcorn! Things every kid should be able to enjoy.
On the new news front we had Layton’s allergies tested. She was so cooperative and brave. Poor thing had no idea she was about to be pricked 50 times. She didn’t even cry out. She did hit me twice when it was done though and that’s okay. Lucky for her only 3 things showed up; clam, oyster and flounder. She’s eaten fish sticks and snuck some of Charlie’s shrimp before but never had a reaction. Her testing was so small they said just use caution. Well I don’t think she’s a huge oyster fan so I doubt we’ll have any trouble telling her no. We still plan to scope her in April and see if anything is going on in there.
Tinleigh had a huge reaction to playing with play dough so that’s completely out now. She’s had smaller reactions here and there. Sometimes even played with it and didn’t have a reaction at all. This last one really got her so I told her no more. She wishes play dough was never created.
Tinleigh’s airborne reactions seem to be under control. She did have some freak eye incident a few days ago. Her eyes just swelled up. I have no idea why. We threw her in the shower and gave her some Benadryl and she cleared up. You never know who’s going to react to what here.
What I’m most excited about soon is spring break. We LOVE the beach and the beach loves us. It will be even more awesome that this year we can actually go out to eat. We never do because it’s just too hard to eat in front of them. This year I can pack them food and everyone will get to eat together!
Gage’s new adventure for the week is buckwheat. You have no idea how excited he is.
Buckwheat isn’t actually related to wheat at all. It’s actually in the rhubarb family. Even though Gage wants to eat wheat while on the steroid I just don’t feel like it’s a good idea. So we’ll give buckwheat a try for a while.
We found cereal, noodles, crackers and groats at the health food store. He is loving it all and is so stoked.
Last week we started a trial on VeganEgg. It’s an eggless substitute for egg made of algae. It stinks like sulfur yet is amazingly egg like. He can actually have scrambled eggs. How awesome, yet strange, is that to see him eating an “egg”? Gage has a very anaphylactic allergy to eggs, this picture is so surreal. I think VeganEgg is going to be a big changer for him. It will really help in our baking once we get some more ingredients added into his diet. I need to strategically plan it out though.
I’ve tried making him oatmeal cookies. They’re pretty basic, but I’ve failed. Not once but twice on appearance. It’s so frustrating. He loved them though. Probably because it’s a “cookie”. He didn’t love the second batch as much as the first batch. That happens. I think we need a better flour. I need to get my hands on some buckwheat flour and see how it does. Anyone got a good oatmeal cookie recipe using: oats, oat flour, sugar, veganegg, tapioca starch, enjoy life chocolate chips, cinnamon, brown sugar and baking soda?
Here though, is why I cringe at the thought of Gage and Tinleigh eating. We’re back to the crazy high grocery bills at the specialty food store. It’s totally worth it though to just see them eating and smiling. Eighteen items at $75? Plus the$110 I just spent on amazon pantry for them. These will last them a week tops. Phew, mommy better log some more hours for work!
Kitchology – allergy friends and non-allergy friends find some new favorite recipes custom tailored to your diet needs!
Layton seems to be taking a different route to the allergy world than the other 3 did. She was on neocate as an infant, after that though, we’ve fed her normally.
I’ve always fought her to eat. She hates eating. It’s definitely her least favorite thing to do. Unless it’s dum dum suckers.
Tonight I fed her toasted cheese filled ravioli and spaghetti sauce with mushrooms. About 4 bites in she said no more sauce. She then gobbled the rest right down. It made her gunky and stuffy. Was it too much dairy? Was it the egg in the ravioli? Was it the tomato sauce?
Layton is still covered in these tiny little bumps. It’s eczema. I’ve started giving her daily allergy meds and slathering her in Eucerin cream. It’s still spreading though. She’s even started waking up with welts. Very itchy little welts. As of today she has 2 on her belly, one on her hip and more on her thighs.
I just look at the eczema and welts but I haven’t said it out loud yet. I think I’m waiting on the allergy testing and scope in April. I’m just not ready for one more. It’s already too hard. Maybe the timing of giving Gage and Tinleigh a trial break is just what I needed to be able to get Layton figured out? We’ll see. I’m praying maybe it’s all environmental at best. If she really is joining the crowd hopefully she’s more like Charlie and not part of the “rarer club”.
I will say, as insane as this life we live is, things always fall right into place for me. I guess it’s time for Layton.
In December the decision was made to remove Tinleigh’s 3 safe foods and scope her to make sure she’s clear when only on the formula. Turns out, she wasn’t clear. In fact, she was worse with no foods than she was at her last scope. Her previous scope with her 3 foods was zero in her mid and 20 in her lower esophagus. This scope she was 7 in her mid and 30 in her lower.
We know it’s not reflux. Her numbers were even lower when she trialed watermelon 6 months ago. Then they spiked up, then back down and now up again.
Our GI spoke with other doctors and aside from saying “good luck with that one” we are now wondering if Tinleigh is an even rarer bird. Is rarer a word? Tinleigh’s been having airborne reactions. Could those be part of this problem? What if it’s environmental allergies causing her eosinophil counts to stay high? We can’t put her in a bubble.
Our game plan is to test Tinleigh’s environmental allergies and see where that gets us. She’s only ever tested positive to a few environmental things but that was in New York. She hasn’t had those tested since moving here. Is Tinleigh allergic to our new state? Wouldn’t that be just awesome, did you catch the sarcasm there. Will our doctor prescribe a new state for us?
Before we dive into trying to figure out Tinleigh though we’re going to give Tinleigh the same break we’re giving Gage. Tinleigh is going on the same swallowed steroid twice a day. Each week we’ll let her have one need food. As long as she’s not showing symptoms we’ll keep going. She’ll be scoped around the end of April to make sure her dosage amount works for her. She will get to do this for a year or two. Then we’ll go back to figuring her out. So far she’s had squash and all of it’s varieties. This week we’re working on potatoes. She will tell you French fries are amazing.
I’m really going to enjoy this time with her of letting her eat. It’s almost like introducing food to a baby for the first time, except, it’s a very expressive talkative baby that has a million things to say about the food.
I’ve been debating on if I should share this letter or not. It’s the one I sent to the school.
I’ve decided that I should share it.
Hopefully it can help someone else.
Holidays are such a fun time for kids. As parents, we want to make them the best memories our kids have.
Imagine though being in your child’s shoes for a day. You’re at a party in your classroom, which you consider safe, and then something appears that could kill you in a matter of minutes. Your little head races as you try to figure out what you should do. You’re questioning why this is happening because you were told you would be in a safe room. It’s a party for your whole class and you’re being singled out, even possibly killed. Thank goodness, your mom is there to save you and remove you from harm.
I am not over exaggerating when I use the word kill. As harsh as it sounds it’s the God’s honest truth. I am referencing the peanuts being in the classroom during the Valentines party. There is a sign on the classroom door that says the room is peanut free zone. There were also letters sent home with in the first weeks of school explaining there is a child in the room with severe peanut allergies. I get it that allergies can be “annoying”. Believe me I know. I have 4 kids and a husband all with lengthy lists of foods they can’t eat. You want to talk about annoying, none of them even have the same food allergies. Why would you bring a known anaphylactic allergen into a classroom a risk a child’s life just so the other kids can have peanuts for their sundaes? I could have suggested many other toppings to use that are just as crunchy and salty as peanuts.
If my son would have stayed in the room while the other kids ate peanuts and gone into an anaphylactic asthmatic reaction how would that have impacted your child? It’s not a pretty scene. It’s happened more than once before. He would have started coughing, then a rash would have overcome his body, his eyes would swell and his voice would have become raspy and probably disappeared altogether. He would have ended up gasping for air between coughs, possibly even vomiting. If a child would have touched a peanut and then touched his arm it would have set his reaction off and ruined the day for everyone. Especially him. You see though, his day was ruined as soon as he was aware there were peanuts in there. He already doesn’t get to participate in the food part of any social event. This day he also didn’t get to exchange Valentines. He will forever remember his 3rd grade Valentine’s day as the one when he had to leave because someone brought peanuts. I also fear how he’ll do in class the rest of the week as the room has been contaminated.
Today could have ended horribly. I’m so thankful I could be there. It breaks my heart that he already goes through so much in life dealing with food and then we run into situations like this that never should have happened. I am always available to make sure we keep things safe for my son. I’m not sure how it didn’t happen this time.
I am more than happy to answer allergy questions for anyone that isn’t familiar with how allergies work as they’re different for everyone.
It’s been 4 days since my coffee pot broke. Luckily my new one showed up today. Today was so emotional draining I just knew I couldn’t go another day with out my coffee pot.
Last night I typed up a letter and attached it to an email I sent to the VP at the school. I was expecting her phone call at anytime from the moment I woke up. I was on pins and needles worried about how the call would go. I was also extremely worried about Gage and if he would have reaction in his classroom from something not getting wiped down good enough after the Valentines Day peanut fest 2017.
Today I was asked by a few different people “Why didn’t you say something right then?” and “Why didn’t you have them throw them away and allow Gage to stay?”. I’ve learned that since the time Gage was born my gut instincts with him are typically correct. In that instant my first thought was to get him out of there. So I did. As we walked down the hall I knew that anything that needed to be said didn’t need to happen in front of the class. I also knew Gage was safe by my side.
I called the school nurse first thing to let her know that if Gage came to her itching, coughing or feeling weird that she needed to call me asap. She was so upset by what had happened yesterday. She was in action all morning making sure the right people knew how wrong it was for there to be peanuts in a peanut free classroom.
Finally the VP called me. We discussed what happened, how it happened and what will be done. In the end everyone at the school is going to get a refresher course on allergies. Tomorrow I am going to ask that the line of action for figuring out what to serve at parties be changed. Which may include me becoming more involved at the school which I don’t have time for, however, with my kids life on the line I’ll figure it out. The phone call was a huge relief. The correct actions are being taken and hopefully a situation like this one will never happen again.
Something funny about this whole situation, Gage didn’t even know what an ice cream sundae is. When I told him his class was having ice cream sundaes for the party he asked my why were they waiting until Sunday to eat their ice cream. Poor kid was so confused. How sad is it that he didn’t know that?!
On the home front I also dealt with Tinleigh having an airborne reaction to my eggs I had for breakfast. I forgot her allergy meds at bedtime. I hate to think that one missed dose is all it took but I can’t figure out what else it could have been as far as timing goes.
Miss Layton woke up covered in eczema. It’s been in spots here and there but it really took off last night. She has it all down her thighs, her fore arms, groin and on the sides of her back. I know what’s coming, want to guess? She’s also not been eating much at all, toddler phase or does her throat hurt? I’m holding out until her scope in April unless she gets a lot worse.
I’m emotionally exhausted.
He tends his flock like a shepherd:
He gathers the lambs in his arms and carries them close to his heart;
he gently leads those that have young.
Come back and I’ll fill you in on Tinleigh’s new adventure in food.
Sigh. I dread holidays while the kids are at school. They play a game or two and have a treat. You would think that having done this for 6 school years I would be use to it. I’m not though. It always makes me sad that I have to take in a special treat for my kids. I wonder what they’re thinking as they see there friends eating things they can’t have. Especially the fun party treats. Does it make my kids sad? They’ve never expressed sadness to me. I do wonder.
Today was another typical Valentine’s Day party for Gage. We made the box, made the cards and I had the special treat ready for him. I knew he would get treats from his friends he can’t have and that’s another bowl of sadness. I do see him get upset as I pluck treat by treat away from his pile of goodies. I keep catching myself lately saying “Your day will come”. I think maybe that’s how I can keep hope in their heart, and mine.
As usual the girls are in tow and we went to Gage’s class room for the party. When we arrived at the school Gage was waving to me from the nurses office. It was time for his last bolus of the school day. So we waited on him and then headed up together. When we walked into the room we stood near the door where the Guinea pig is as the kids played a game. I knew the class was going to have ice cream sundaes today so I didn’t want Tinleigh near the food table. I said hello to Gage’s teacher and tried to keep the girls near me. Once they had reached their max of waiting I took them down the hall to say hello to Charlie’s 4th grade teacher. When I turned around to head back to Gage’s room there he was standing in the bathroom entrance. He says to me “Mom there’s peanuts in the room.” I was a bit confused. I asked him what he meant and he said they told him they had peanuts for the ice cream sundaes. My heart crumbled to the floor right there in the bathroom entrance. I told him we would have to leave that it just wasn’t safe for him. He pleaded with me that they hadn’t exchanged Valentine’s yet. I told him to go ask his teacher if they were eating or doing Valentine’s next. So he went to ask as Tinleigh be-bopped into use the restroom. I walked towards Gage’s classroom but stayed in the hall so Tinleigh could find me. Gage came back out and told me they were going to eat then wash hands and then do Valentines. I explained that it still wouldn’t be safe for him because they would be touching their food and if someone didn’t wash good enough or got peanuts on something then touched his Valentine it wasn’t worth the risk. He looked sad so I quickly told him we would go buy a new video game. He was okay with that. As I stood in the hall I overheard the helper mom say “I just want to point out that there are peanuts here on the table so if you’re allergic don’t take any.” Did I really just hear that? Once Gage gathered his things and came into the hallway I asked him if there were any other kids in there with a nut allergy because we needed to get them out as well. He said he was the only one. Off we went.
We had to stop in the office so I could check Gage out. We briefly spoke to someone about what was going on and it was quickly made known to the assistant principal. What happened is not resolved yet.
The thing was though I had found a special ice cream bar that Gage could have. He needed to eat it before we left because it was melting in my bag. So we camped out in the entrance to the school and Gage enjoyed his “ice cream” treat.
I am upset that the event happened. It did bring me out of my allergy world bubble. I didn’t know much about allergies when our journey began. I didn’t have allergies and neither did anyone I knew. Now I know too much. There are still people in the world that aren’t familiar with allergies. Even though Gage’s class is peanut free and there’s a sign on the door I guess that mom just assumed it would be okay if Gage didn’t eat them. What she doesn’t know is that if anyone touched Gage with peanut residue on their finger, or if Gage touched something that has peanut residue on it, it would have been bad. It’s happened before and Gage went into a full blown asthmatic anaphylactic reaction. I’m sure the party mom wouldn’t want to witness one of those in front of a classroom full of kids.
Poor Gage. Even though he got a new video game out of the day he will always remember his 3rd grade Valentine’s Day party the one where “they brought peanuts”.
So if I’m getting back into blogging why not just turn this into our allergy reaction diary instead of a blog? Is there a difference?
I need notes. The daily what happened to whom. I really need someone just following me around all day with a pad and paper writing things down for me.
Today was great. Aside from Layton’s typical not wanting to eat anything. Which has been worse for the last week, but I am blaming her cold right now.
This evening Gage started in with his typical “I’m hungry”. He says this even while hooked up to his feeding tube. He misses eating more than I could ever imagine, even though his tummy is full. I ask him what he wants and his response “something crunchy but chewy, something like French fries”. This kills me to the core. Not only do I not have a solution for his want, I painfully know that he will never have French fries. The last time Gage ate potato he vomited everywhere, he was one. He only knows what a French fry looks like. He has no ide what it tastes like. He’s anaphylactic to potato, he’ll never taste one.
You see, now, when Gage asks me for something to eat he’s very descriptive. He knows what texture he wants, he knows if he wants sweet or salty. He wants to eat real food. It makes me so sad that it’s also started making me angry. There is nothing I can do for him. Nothing.
I think though, Gage still has hope. That’s the one thing I feel is slipping from me. Even though Gage is so frustrated and hates his disease, he still see’s the future and him not having a feeding tube. He can see himself eating food. We’ve been in this for 7 years and we’re not where I had envisioned us being. I guess that’s why my hope is falling.
It’s all the little events too that are killing my spirit. Like tonight. Once Gage settled on some raw cauliflower with salt I thought all would be well. I knew it wasn’t what he really wanted, but he crunched away. Then after he had crunched through one big tree he says mom my eye is itchy. I told him he was getting in the shower next and he would be okay. However, he comes over to me and says and there’s a bump on my lip. Sure enough he had a little blister right there on his lip as his eye was becoming more and more red. He went into the bathroom to hop in the shower. When I took him in a towel I noticed he also had a big hive on his back. That’s when the partial panic sets in. Is this going to be a full blown anaphylactic reaction? So we gave him a Benadryl and I told him if he starts feeling anything in his throat or with his breathing to get out of the shower and come get me. Luckily, his reaction didn’t get out of control. His throat did hurt a bit but the Benadryl kicked in and he was fine.
So now we have the issue of what the heck happened? Was it just the salt? Has he become allergic to cauliflower? I’ll have a talk with him about it and see what his judgement is on it. I’ll let him make the decision on if he tries it again or not.
Be strong and courageous.
Do not be afraid;
do not be discouraged,
Lord your God
will be with you wherever you go.
I can’t believe I’ve neglected my blog for an entire year. Yet, I know how busy life is at this stage and I know I just didn’t have time.
So what’s new? We’ve gone through a lot this last year. That’s the one thing I hate about not blogging, I won’t remember everything. This blog provides me with so many memories about things that we’ve gone through. It’s so constant in my life that I push a lot of it out of my memory.
I’ve been thinking about writing this blog for a few weeks now. I couldn’t decide if I wanted to do one big summary and just touch on each kid or do a 4 blog, one per kid, series. Because I know my time constraints I’m going to just do one post.
So here we go, oldest to youngest.
Charlie: I think Charlie’s last food trial I posted about was beef. He had passed and is still eating it. That’s a huge add to his diet. He then moved on to crawfish and lobster. That one was a fail.
Charlie then took a break and was just scoped again in January just for a check to make sure he was still clear before starting his egg trail. Charlie’s been eating egg baked in things like cookies and cake for quite some time now. He was ready to trial scrambled egg. So far so good. His eyes do look a tad dark to me but we’re not going to stop unless he starts having bigger symptoms. If anything he’ll at least get to eat them for 3 months.
If my memory serves me right Charlie only had 2 weird allergy reactions in the past year. One being a swollen lip. We still have no clue what caused it. It was the only symptom he had. It got pretty big, Benadryl helped but it didn’t go away completely until the next evening.
Charlie’s other incident was eye swelling caused by a large dusty brand new barn. It was crazy. The barn was brand new. Absolutely nothing in it. About a half hour after being inside his eyes just swelled right up. We showered him off and gave him his inhaler. He was fine.
Charlie also had a little hernia surgery. To any other kid it would probably be a big deal. Charlie told the anesthesiologist where he wanted his IV. LOL
There was a rough patch in November when Charlie had some bowl issues for 2 weeks. He ended up on some super strong antibiotics that finally kicked it. If it reoccurs he’ll have a colonoscopy. We’re praying it was just a super strong illness and nothing GI related. Only time will tell our doctor told us.
Before school started this year we toured Charlie’s new building he would be in. Once we were done with our tour Charlie’s eyes were watery and itchy. I was panicked that he was allergic to the building. Luckily we’re in an amazing school system. We took Charlie back for another private tour not telling him we were just testing his allergies. He passed that time and has been okay so far this school year. I though who in the world would be allergic to their school building?! Of course it would be one of my kids.
Gage. My sweet Gage. This poor boy. He’s had a rough year. You would assume that starting out life with this disease you would be use to it and it wouldn’t be a big deal. Well I’m quickly learning that, that isn’t the case. This year has proven to been our hardest emotionally by far. Gage is done. He’s done with the disease. He’s done with his feeding tube. He’s done. He hates it, asks me why him, gets angry and sad. Having a chronic illness is not easy. Learning to cope isn’t easy either.
Last I posted Gage had failed dairy. We then had to wait for 6 weeks to let Gage heal from how horrible his esophagus was. The GI dr wanted to scope him again and make sure he was cleared up before starting a new trial. If my memory serves me right we had pulled rice from Gage’s diet before starting dairy. He didn’t get it back either. I don’t think he was clear after pulling the milk and waiting. So we decided to have him trial something we thought would be a pass. Gage trialed raspberries. During his raspberry trial Gage was still eating fish. One day at the store he declared he wanted some salmon. So Nathan grilled him up some for Gage’s dinner. After eating it he said his throat was gunky. That’s not uncommon for him. He didn’t complain and we went on with our evening. An hour after eating the salmon Gage came to me and was starting to cough. It escaladed quickly. We gave him Benadryl and an albuterol breathing treatment. During the breathing treatment we noticed his face was becoming more and more red. I asked him to lift his shirt. He was beginning to be covered in hives. Nathan grabbed the epi pen and I had Charlie keep the girls in his bedroom while we administered the epi pen to Gage. After some time spent in the ER Gage was released with some steroids and a sad heart that he can probably never eat salmon again. Two days later was mother’s day. That was the day his emotions hit an all time high. Gage failed raspberries. His scope was horrible. GI had us pull fish. One of his very first safe foods. We then waited a period of 8 weeks and scoped him again. This time Gage was clear and GI let him add rice back in!So he trialed rice for three months, and failed. That was super hard on him mentally, emotions were high. We decided to let him trial lamb. Our GI had, had good results with lamb on her tougher to figure out patients. Unfortunately, he failed lamb too. He loved lamb burgers. Nathan was also making him lamb jerky. The kid was in meat heaven.
After that we made the decision to put him on the steroid slurry. That’s where you mix nebulizer steroids with sugar, or in our case pixi sticks, and he swallows it. The steroid suppresses, or masks, the disease allowing Gage to eat. We will do this for a year or two and basically give Gage a mental break. As long as the steroid doesn’t mess up his cortisol levels we will stick with this. It will give him a break from scopes as well. So the game plan is we will add one new food a week and as long as he’s not having symptoms he will continue to eat it. In April Gage has to have the hole to his feeding tube dilated because it’s slowly closing on him. If his tube would happen to fall out we would literally have seconds to get it back in there as the hole would close. We will scope him at that time just to make sure that the dosage amount of steroid is the right one for him. He still has wiggle room to move up in dosage. So far he’s had apple and oats. He does have dark circles around his eyes but we’re going to ignore them.
One of the downsides to doing this is that in 2 years time when we stop he will go back to those same 8 foods and we will start food trials all over again. We explained that to Gage, he understands and feels the break is worth it.
Tinleigh. This child. I would say she’s had a worse year than Gage, if that’s possible. Last year this time Tinleigh was trialing black beans. She loved them and still talks about them. She had noodles, beans and I would turn them into powder and make her a mug cake. While she was trialing black beans she also really started having airborn reactions to dairy and beef. She would break out in hives on her face, become stuffy, sneeze and even get an itchy throat. They progressed from there and I’ll touch more on that. Tinleigh trialed black beans for quite a while. If you remember back to when she had the episode in the OR or remembering the procedure. We decided to give her a break from scopes. Because she wasn’t being scoped she had a very traumatic g-tube change in the GI office. It doesn’t hurt, it’s just scary when you’re 4. Right after that appointment her g-tube fell out. That g-tube falling out was horrible. Of course she wasn’t about to let one of us touch her and get it in so off the to ER we went. The poor nurse was young and nervous. I’m certain Tinleigh’s screaming and begging to just stop wasn’t helping things. They couldn’t get a catheter in her but they were able to get a ng-tube in. That’s the tiny feeding tube that goes into the nose. So because of this happening she now needed her feeding tube hole stretched to get a g-tube back in. Which meant we could also scope to see how she did on black beans. Luckily they allowed me to dress and come in to the procedure. With a heavy dose of versed Tinleigh still screamed bloody murder as I carried her limp body into the OR. However, after the procedure was over she didn’t remember a thing. The anesthesiologist said he gave her quite a bit more meds than she had, had previously by a different anesthesiologist. She failed black beans.
Next up Tinleigh trialed watermelon. She loved it. She failed it.
After that we needed to make sure Tinleigh was clear on her 3 safe foods. So Tinleigh did not get to add anything new and we scoped her after 3 months to time it up with her g-tube change. This time we swapped out versed for valium. It helped calm her prior to the scope but we realized she needed a bit of a higher dose. Which makes sense since she needs more meds than required by her weight to knock her out. She failed her scope on 3 safe foods. That was a super sad day. It was even worse that her g-tube popped out the day after the scope. Luckily that time She let me put it back in. It was a magical.
It was 4 years to the day that Tinleigh was diagnosed with EoE that we had to tell Tinleigh she had failed her 3 safe foods and she couldn’t eat them anymore. Four very long years of trials and even a feeding tube and the poor girl can’t eat anything. Tinleigh was just scoped on Jan 27th having only elemental formula in her diet. I just learned on Friday, yesterday, that she failed the scope. None of her numbers make any sense when comparing to recent scopes. She was actually better during her watermelon trial than she is now. GI thought maybe Tinleigh is a kid that environmental allergies effect her EoE now. Unfortunately, because of Tinleigh’s airborne reactions she’s been on a double dose of allergy meds every day and those cancel out that theory. We’re at a really tough cross-road with Tinleigh. She’s going to need medication to get clear at this point. The trouble is Tinleigh was on steroids before she got her feeding tube and her numbers were still climbing. Our GI did notice that Tinleigh was on rice during that time and that was a huge fail for her while on elemental. So do we risk wasting time and having her go on steroids again to see if they will clear her up and allow her to eat foods? If they do it would be wonderful. Except being that she can only be on them for a year or two I’m not sure what happens after that time frame. Our other option is to put Tinleigh on a low dose of chemo. That’s another blog topic I’ll cover if we come to it. Our GI is talking things over with her boss and colleagues and will come up with a plan in the next week or two. It’s been SO HARD having her be elemental again. This child just wants to eat again.
Oh, her airborne reactions. They got out of control. By November they had started becoming almost daily and in December they were. It didn’t matter what we were cooking Tinleigh would have a reaction. We even tried just ignoring her to see if maybe she was making things up. Unfortunately she wasn’t. We tested her for mast cell disorder and it’s not that. Luckily a daily double dose of allergy meds has put a stop to them. She went 3 days this week with out any, on accident, and on day 3 she had a reaction. Our allergist has spoke to a specialist and they’re both at a loss as to why this is happening with her. Hopefully we will be able to wean her off the allergy meds by the end of summer. They’re hoping this was just a fluke thing that happened to her.
Layton is awesome. As of now she doesn’t have any Ige allergies that we know of. We are teaching her about allergies and how she can’t have certain things around Tinleigh. She’s catching on rather quickly. With that said though, she did chase Tinleigh around the house one evening with a slice of wheat bread. No harm done. We do have to keep a close eye on her at the table. If Tinleigh has a snack and gets up to leave Layton often tries to get a bite of what ever it is Tinleigh is having. On one such episode it ended up with me not knowing it happened and Tinleigh vomiting because of a reaction.
We scoped Layton last summer and we’re not going to say that Layton officially has EoE. However, she does have minimal eosinophils through in her mid and lower esophagus. We will treat her with reflux meds and pray that clears her up for now. Layton’s stomach was clear however, there were eosinophils in her duodenum. That’s where the stomach meets the small intestine. We’re just going to keep an eye on it for now. GI hates to say it but thinks, and I agree, Layton will probably have a mild case more like Charlie. Gage and Tinleigh were babies with issues. Charlie didn’t have any troubles until he was 4-1/2. We plan to scope Layton in April to see where she’s at. She’s still not the best eater. Her bottom gets strange random rashes, even being potty trained. We’ve also noticed more recently she has allergic shiners around her eyes. We weren’t going to scope her this year until she just told me that bologna doesn’t hurt her throat. Why would an almost 3 year old tell me that? Do other foods hurt when she eats them? So we’ll scope her to see if something is going on.Lucky Layton had a lot of firsts this year. First chicken nuggets, donut, homemade chocolate chip cookies, cake, lots of things that we just don’t have around.
Wow, Layton’s update is short and sweet!
So what’s it like at our allergic house? Still chaos.
Monday: drop Charlie off at school and immediately call the school nurse because he had decided to pet the neighbor’s cat before he got in the car and his eye was now swelling shut.
Tues: while Charlie and Gage set corn out for deer Charlie, again, touched his eyes and they swelled up.
Charlie also had a GI reaction to his dinner.
Wed: Nathan impacted shrimp in his throat. EoE symptom, not anaphylactic reaction.…
Friday: Tinleigh had an airborne asthmatic reaction to beef.
Saturday: Tinleigh had another airborne reaction to beef.
Nathan had a freak, out of no where reaction, that swelled his throat and he had to epi pen himself.
We’ve also still had our share of the icky stuff. One day I let the boys stay home today with nasty colds. We went to the Dr mainly for a Dr note for school. New school policy.
Gage tested positive for strep – they’re all being treated for strep.
Charlie is also being treated for a sinus infection.
Tinleigh is also being treated for walking pneumonia.
Then Layton got strep. Gage got pneumonia, or was it Charlie? Then Layton got sick from the antibiotics. Then Charlie had bowl troubles for 2 weeks. It was the longest November EVER.
The highlight of my year though was FABLOGCON. I met the most amazing group of people. They were my people. They knew my struggles and understood what we were going through at our house. My most favorite part of that was meeting a woman I’ve only know through FB and phone calls for 6 years! The creator of FABLOGCON Jenny Sprague. She’s amazing. I highly suggest going to anyone in the world of allergies.
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. A 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.
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.
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.
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.
Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal.