LIVING

With EoE, Allergies, Asthma and a G-Tube

What’s new?

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.kids3

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.

c3

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.c1

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.

c5If 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.

c2Charlie’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. c4

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. g3

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. scopecg

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. gageerDuring 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. scopegtThis time Gage was clear and GI let him add rice back in!g2So 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. g1

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. t2This 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. t3That 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. t4She 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. scopet

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.

l1Layton 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. l2

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.l3Lucky 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. fab

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February 4, 2017 - Posted by | LIVING

1 Comment »

  1. Reading your latest post helped me know that you are not giving up on yourself, or your family. It gives me courage to walk the path with my son who is suffering from eosinophilic esophagitis. Thank You.

    Comment by Amy | February 16, 2017 | Reply


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