It’s been tough, it is everyday. What the feeding tube has done for Gage and Tinleigh though is wonderful. They are both growing and thriving like all kids should be. For that reason, I love those little extra buttons on their bellies. Visit back this week while we celebrate life with a feeding tube!
While I was pregnant with Layton I had a few allergic reactions to food. As my pregnancy went on my list grew. I could not eat tree nuts, peanuts, shellfish or fish. Each of these foods had given me some sort of reaction. Nothing that required an epi pen but enough that I knew I needed to stay away from them. Nathan and I joked that I had gotten food allergies through osmosis.
While meeting our new allergist recently I asked her about my experiences. She said there was a 50/50 chance that I’ll be able to eat those foods again. She told me it isn’t uncommon for pregnancy hormones to do this. She advised me to make an appointment and have some allergy testing done. Instead, I did my own testing at home. I would NEVER advise this to anyone. We’ve introduced foods to the kids enough times in a cautious manner at the allergist office why not do it on myself.
Last night I made Charlie fish tacos for dinner. I broke off a very small corner of his fillet and licked it. I then waited for a period of time and nothing happened. Next I proceeded to take a tiny nibble. When I say tiny, I mean smaller than a half the size of a tylenol pill tiny. I smashed it all around my mouth and swallowed. About a minute passed when my tongue began to itch and it quickly traveled down my throat. My throat then began to feel gunky like I needed to cough, then all the sudden my chest got really tight. Holy crap I’m having a full blown reaction. Wait, am I really? I took a drink of water and realized I wasn’t imagining this. So I immediately took a couple benadryl and called Nathan. I told him how I was feeling and he suggested I take one more benadryl then asked me if I would be able to epi pen myself. What?! It’s not that bad is it? I guess he would know best. I then told Charlie what was going on. I figured I better tell him so if I do have to use the epi he doesn’t freak out. The first words out of his mouth were “you’re joking right?” I shook my head no. He then offered me a hug. So sweet. I then called my parents, I felt like I needed another grown up around. So I spoke to them while I coughed and hacked waiting for the benadryl to kick in. I will admit I was a little nervous. After a while thankfully the benadryl did kick in and all of my symptoms started to lessen. The last thing to go away was the tightening of my chest.
So I now know to completely avoid fish. I’m thinking I may go to the allergist and be tested for tree nuts, peanuts and shellfish. I didn’t enjoy having a reaction and the next one could be worse.
This gave me a whole new perspective on the kids. I feel so horribly bad for them. More so than I already did. That was a scary horrible experience and they’ve all gone through it multiple times. No wonder they never take food from our kitchen without asking. They’ve never expressed fear when trying a new food. Is it because they have all their trust in me that I won’t let something bad happen? Or do they just want other food so badly they are willing to take that risk? Do they even think about having a reaction at all or have they blocked reactions out of their mind?
Guess I better update our family allergy page.
Kara : fish, possible shellfish, tree nuts and peanuts.
Formula, the breakfast of champions.
Have a great weekend!
Get out there and LIVE!!
Here’s something positive to make you ( I really mean me) smile.
Layton eats a normal baby breakfast of cheerios and banana!
She’s still doing well on food. She has began choking a little, but I’m trying to remind myself she only has 4 teeth and its not eoe.
Have a great weekend!
Keep on LIVING!
The last few days have been ok. Gage has asked for popcorn, chips and a few other corn items. I remind him that he can’t have corn anymore. He says okay can I have… and asks for something else. He doesn’t complain. It’s just matter of fact and that’s it. He has asked why corn messed him up and we talk about it. He hasn’t complained or thrown any fits. Tinleigh has also asked for food. We offer her blueberries, olives, Popsicles, candy or to make her snow. Of course she’s sick of all of those things and says no. So we try and distract her by suggesting she play something. It’s going to be a very long 6 weeks.
We’re on day 3.
I feel horribly for them.
So, that’s just what I’m going to do, walk in their shoes.
I am going to limit my diet down to just a few foods for the next 6 weeks.
NO cheat days.
NO “just one nibble won’t hurt.”
So here’s my list of foods I CAN eat:
Starting tomorrow I will only eat these foods for the next 6 weeks.
I’m hoping to get insight on how my kids might feel mentally about food. How it affects them socially. Just get an overall sense of how it is for them.
Anyone want to join me?
Follow along to see how I’m doing.
Sponsor my 6 weeks by donating to CURED and help my kids get the cure they need.
Help cure them so they can eat more than just a few foods.
Food allergies are no joke.
Here’s an example.
Tinleigh is anaphylactic to dairy. You might remember our Halloween episode. I have a tablet with a keyboard I let the kids play on. Yesterday Charlie got a few drops of milk on the keyboard. I thought i had cleaned it off well. This morning Tinleigh had the tablet. She announces to me her tongue is itchy. I was confused for a moment as to why it would be because she hadn’t eaten anything by mouth yet this morning. Then I realized she had touched the computer then put her hand in her mouth. Her whole mouth was breaking out. Her dairy allergy is very real.
If your family is allergy free you might not understand how careful allergic people have to really be. If there’s a child in school that’s allergic to nuts and the class is asked to wipe their hands after eating, this is a great example of why. Gage’s nut allergy is so bad if he touches someone that has eaten a nut he would go into asthmatic symptoms and require a breathing treatment.
Please try and understand how scary our big world of food can be to someone that could die from coming in contact with a food normal people would never blink an eye at.
Last week we drove 3 hours to our new GI to have Charlie, Gage and Tinleigh scoped. They hadn’t been scoped since June. Gage was trialing corn and Tinleigh was trialing rice and green beans. Charlie was just having a check up due to some tummy issues and what I thought was reflux.
The kids were less than thrilled but I just keep reminding them getting scoped allows us to possibly add new foods to their diet.
Our start time was noon and we arrived on time. We answered questions, signed papers and got them dressed into their gowns. Thank goodness for technology. Gage was waiting for me to hand him back my phone.
It didn’t take long and before we knew it Tinleigh was drinking her loopy medicine and placed in a wagon to head back for her procedure. We part ways in the hallway and she wasn’t to sure about saying goodbye. She wasn’t screaming though so I knew she would be just fine. Procedures seemed to take about an hour this time around. They took 4 biopsies in the upper, mid and lower esophagus, the stomach and where the stomach meets the small intestine. Gage received his loopy medicine and placed on a cart, he was feeling pretty happy by the time it was his turn. Back he went and they informed me Tinleigh was in pre-op in a heavy sleep still. About the time Charlie received his loopy medicine they called me to go down and be with Tinleigh while she finished waking up. Just so happened I met them in the hallway with her where she started sobbing. The nurse said this was the first of the tears for her. So we took the elevator down to recovery and Tinleigh continued to sob. She didn’t want held. She didn’t want to watch tv. She didn’t want a drink. She wanted left alone. So we did just that. After a few minutes I turned on the TV in hopes it would distract her from her sobbing. It did help, until a commercial would come on. Soon Nathan came down to join us because they had taken Charlie back for his turn. Again Tinleigh started sobbing hard. So we let her sob. No explanation other than it’s just Tinleigh waking up. We’re glad she’s graduated to sobbing from the screaming wild animal she use to be.
Right before they brought Gage to us Tinleigh declared she was happy and that was it. She was ready for pop and a snack. Gage was awake when he came into our cubby. He also did not want out of his cart. So the two of them sat drinking pop and having a snack while watching cartoons. Gage kept gazing off with food in his mouth and we would have to remind him he was eating. It was comical for Nathan and I. It seemed to take forever before Charlie finally came to join us. That’s when the fun began. He was SO out of it yet determined to “shake it off”. He immediately had to go to the bathroom. So the nurse, Nathan and I managed to lift his limp body into a wheelchair and off we went to the bathroom. The boy pee’d for 5 minutes straight. He wasn’t joking. When we arrived back Tinleigh was sobbing again, she thought we had left her. So I calmed her down as Nathan and the nurse fought Charlie to stay in the wheelchair. He kept telling us he was going to get up and walk it off. He couldn’t even hold his head up or keep his eyes open. I was laughing so hard. Everyone eventually got their IV out and some nausea medicine for the 3 hour car ride home. We got them all dressed and we were ready to head out. Everything went as smooth as it possibly could have. SUCCESS! About 6 days later our GI doctor called me personally with the results. Not at all the news I was hoping for. I will admit going into the scopes I had a gut feeling they weren’t going to be good. One by one though the performing GI doctor handed me pictures after each scope and they didn’t look bad at all. Looks can be deceiving.
Charlie – As you can see in the first picture there is some redness. This is at the bottom of the esophagus. My instant thought was reflux. The rest of his esophagus looked normal as did his stomach and small intestine. When the doctor called she informed me Charlie’ upper esophagus was normal. However, his lowest esophagus biopsy showed 30 eosinophils. I mentioned reflux and she agreed, so he’s now on some medicine for that. This means the eosinophils are caused by reflux not something he’s eating because it’s all contained just in the lower esophagus. She then informed me he is now showing eosinophils in his stomach. My heart sank. I told her about the tummy issues he’s been having and so we’re starting him on some meds for that as well. Hopefully they help with what’s been going on with his tummy troubles. We have the go ahead to try to add a new food for him. A follow-up with the allergist will have to happen first. We also did some allergy blood work at the scope. Charlie still shows positive to every outdoor thing they can test for, trees, molds, grasses, weeds, animals, everything. His beef and chicken blood work were negative so after a skin prick test of those we’re hoping to add one of them.
Gage – Gage’s scope does not look bad at all. In the second picture you can see some striations, lines going down into the esophagus. They aren’t bad though, we’ve seen worse. So we were feeling pretty good about things. When the doctor called however she had different news. Gage failed corn pretty bad. His mid esophagus was showing 42 eosinophils, the disease was very active, and there is fibrosis. Fibrosis is scarring which is what causes the esophagus to become hard and narrow. This all means fail. If you look at picture number three there was a spot that the GI took a biopsy of. He said he wasn’t concerned, but biopsied it anyways. Turned out to be a cluster of eosinophils. So we now have to remove corn which includes grits, fritoes, corn on the cob, frozen corn, pop corn, taco shells, corn chips and corn tortillas. That’s huge. It’s sad. So we will remove corn and wait 6 to 7 weeks for his esophagus to heal. At that time we’ll meet with the allergist and figure out what he might trial next. His blood work was promising so the skin prick testing will hopefully coincide with what the blood work showed and he’ll get something good back like chicken, dairy or apples.
TinleighHer esophagus was a little inflamed but nothing horrible like we’ve seen in the past. We could see some striations. Same as Gage though her esophagus was showing eosinophils, the disease was very active, and there is fibrosis. She knocked it out of the park though showing more than 50 eosinophils in her entire esophagus. This is back to where we were prior to getting the tube. So rice is a huge fail. Since she was also trialing green beans they have to be removed as well. We will trial green beans at a later time and they will more than likely pass. This really stinks for Tinleigh. Rice is 90% of what she was eating when she ate. She still gets the majority of her nutrition through her tube. So we were pretty bummed for her. As usual Tinleigh’s allergy blood work came back clear. Nothing was positive. So after a lengthy discussion with the doctor we may switch gears with Tinleigh and follow a different route for getting foods back for her. Instead of trying to think of foods that have many various paths we’ll go with foods that are just likely to pass. I was trying to keep her diet similar to Gage’s for my own sanity and to keep things a little easier for me. Like the other two she’ll have to do some skin testing at the allergist but first we must wait 6 to 7 weeks for her esophagus to heal. They will all be scoped again 3 months after they start their new food.
We sat the kids down last night and explained the results. There were no tears. I don’t think the reality of it sank in because I quickly changed the focus to talking about allergy testing and what we might get to try next. These next 6 weeks will be hard, especially for Tinliegh as she will only have blueberries and olives to eat. Gage will slowly realize how many corn foods he was eating and that will suck. We’ll muddle through it though as we always do and keep on LIVING!
I can’t believe Tinleigh has had her tube for one year.
It has been rough, I’m not going to lie. Tinleigh is a grazer and loves to eat.
We have found that we can curb her cravings by grinding up ice in the blender and letting her eat “snow”
Like Gage she’s sick of all the sugary candy she’s allowed to eat.
I don’t think she really understands what it means to be full or nauseous. Half way through a feed she’ll complain she’s going to puke so I’ll unhook her then she turns around and says she wants to eat. If she does do a full book bag then she’ll say she wants to eat so I’ll get her something and she’ll take a nibble then be done. So I guess we have to work on explaining those tummy feelings she’s feeling and help her understand what her tummy is really telling her.
She is now 3 and she understands allergies. She can explain to you that she can’t eat chocolate or she will need an epi pen but Gage’s chocolate won’t make her sick. Although she’s not actually allowed to eat Gage’s chocolate at this point.
She will also explain to you that when she’s 8 she won’t have her button anymore and she can eat all foods. I don’t know where she got this idea but she will go on and on about it. I hope it comes true.
She currently has 2 foods she can eat, blueberries and olives.
The variety of blueberries isn’t big. You can have fresh, frozen or dried.
She failed rice and green beans big time.
We took a 6 month break from scopes this year due to our move and insurance, that’s why she didn’t have the chance to add more.
She’s spunky as ever, happy and very healthy.
We learned she carries the strep virus around her button which has caused some problems. When it flares up it causes her pain and always one or more of us end up with strep throat.
When she got her button I think we went through 3 or 4 rounds of strep and then this fall we have had it twice.
She’s a typical 3 year old that can do everything your three year old can do.
She might be a little tougher than your 3 year old though.
I pray for Tinliegh to get to add a lot more foods over this next year.
This tube hasn’t slowed her down one bit and has been the best thing for her growth. If I remember correctly she’s gained 10 pounds and grown around 4 inches! Not to mention the CHEEKS!
I love you fancy pants.
I make 96 ounces of formula each day, not including what Layton drinks. I have made this as simple as possible so that I’m only mixing it 4 times a day. It’s super easy and quick.
Next time I will only have to add water to the line, no measuring.
This batch will last for 2 of Gage’s feeds or one of Gage’s and 2 of Tinleigh’s.
I keep a corner in our kitchen just for the kids supplies and meds. There’s really no sense in hiding it away in cupboards because I’m constantly using it. During bad times the perimeter is lined with prescriptions and breathing treatment meds. This picture is on a good day, just the basics.