LIVING

With EoE, Allergies, Asthma and a G-Tube

Our EoE video

I’ve been wanting to do a video for a few years now and have never found the time to do it. Even now I’m typing one handed and feeding Layton. I stayed up until 2am last night after the kids went to bed and got a video made!! Then of course I had issues converting it and uploading it.

Here it is! It shares a quick glimpse of our journey with EoE from January 2010 until today.

EOE

May 23, 2014 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

The Final Clinic Day

As we head off to the see the three doctors I was anxious. Not knowing what the results would be I felt out of control.

We see the allergist first who looks at their backs again. Gage went first. Gage showed a reaction to soy and peanut. He showed an irritant to barley, quinoa, ham and green beans. So I start in with my questions. For instance: Gage was off of wheat and oats, had a clear scope, we added wheat and oats to his diet and at his next scope he was horribly inflamed with the highest eosinophil count he’s ever had. Why isn’t wheat or oats showing up? The doctor explained that it could have been one of the other foods he is eating that he showed an irritant to like pork. He also explained that the prick test and blood test have nothing to do with the patch test. Gage is possibly allergic to all the foods he tested positive to on the prick test. The foods that showed up on the patch test are the ones that are effecting his esophagus and his body isn’t necessarily allergic to them. Holy crap this is all crazy. So basically we now have two food lists for each of the boys. An actual allergic reaction list and a list that effects their Eosinophilic Esophagitis.

Let’s move onto Charlie.

The doctor read Charlie’s back then explained his findings to me. He said Charlie’s back had really changed from the day before. I knew this wasn’t good. Charlie’s positives are milk, wheat, barley, quinoa and carrot. Charlie heard the doctor say carrot and he got so excited. He hates carrots. I on the other hand want to crawl out of the room hearing wheat and milk. The doctor told me that milk is a tough one to test. If a kids tests positive to milk on the patch test then that means it really must be bad. I held my shit together, the day wasn’t over and we might not have to give them up. So with that all done the allergy doctor calls the GI doctor as we’re walking to her office to talk about what he had found.

The GI doctor admitted we had her a tad stumped since we were such a freak family with allergies. She was very nice and wanted to keep things easy for me. I had told her on the very first day no way would we ever do the elemental diet, where the boys are only on a drink and no food, so she was going to work through this with me. We first talk about Gage. Then jump to Charlie. It sort of kept going back and forth. Having a long list of actual food allergies along with these new foods made it hard. Gage for instance can’t eat wheat and eats a lot of quinoa as a grain. However, he tested quinoa as an irritant to his esophagus. She was also concerned about Gage because in his last scope he is showing signs of his esophagus becoming hard with scar tissue like Nathan has. We want to avoid that at all costs. She said because he was on the steroid at the time of the scope that really worried her. He should not have been so inflamed. So we decided that even though pork is a huge food for Gage we will remove it along with the other new foods. We will also take him off his steroid and scope him December 1st. She wanted to do it in 6 weeks but I told her no way would I be in the right state of mind for a big scope day with a new-born. I am very sad to remove pork from Gage’s diet. He’s loved bacon from the day he could chew it up. That and sausage links. We’ve tried turkey bacon but he doesn’t care for it.

Gage’s lists.

Food allergies: soy, peanut, beef, celery, mustard, wheat, rice, oat, sesame, peas, fish, shellfish, tree nuts, peanuts, eggs and potatoes. We did not put egg on the patch test because he is anaphylactic to it and is already off of it.

Eosinophilic Esophagitis irritants: soy, peanut, barley, quinoa, pork and green beans.

Charlie was a tough one to talk about. I expressed my strong feelings about removing wheat and milk. She totally agreed but told me that even though he’s had clear scopes the steroids might be masking the real results. The milk and wheat might be why Charlie is doing the constant clearing of his throat after he eats. We’re taking Charlie off the steroids and see what happens. She gave me the choice to go ahead and remove all his new foods or keep him on them. I chose to keep him on them. I knew with this new baby arriving soon I wouldn’t have it in me to be keeping things straight. I have frozen meals ready and no way am I redoing everything! Charlie will also be scoped December 1st. If Charlie is inflamed then we will remove (gulp) milk, wheat, barley, quinoa and carrot.

Charlie’s food allergy list: Beef, eggs, soy, rice, tree nuts, peanuts, all melon, celery, pea, pineapple, fish and some shellfish. He recently had lobster and that one was fine.

So after we had our game plan my thought was what if they both have clear scopes? How do we go about adding foods back? Do we start with the foods that effect their esophagus or do we start with foods that they tested positive to in the prick test. We’ve been adding food back for Charlie and he’s doing awesome. I think we’re up to 10 foods back in his diet. She said let’s just wait and see what happens because she wasn’t completely sure which route to take.

She then informed me that she wanted a blood draw on both of them to check for a few things. OH FUDGE! We keep them trapped in little rooms for 4 hours and now you want to take their blood. Shoot me now. I instantly felt super hot and dizzy. So down we go to the lab. They had not been in this particular lab before but as soon as they walked in the little room with “The Chair” they both turned to tears. Mom why are we in here? What are we doing? Can we just leave? I was silent. I couldn’t even bring myself to tell them. So I sat down and held them as they cried. They knew what was coming. Charlie then hid behind the table as Gage wept in my lap. The girl walks in and I mouthed “This is going to be horrible” She then realized Charlie was behind the table and I could see in her face the look of oh no. I scooped up Gage and we went to the chair. He cried and told me no over and over. He didn’t fight me though. We got it done and he got a sticker. He was still upset though because Charlie was crying out loud the whole time Gage was doing it and I know Gage felt bad that Charlie had to go next. When we do Charlie it always takes a few extra people. However, it was the end of the day and she was the only one left. So I had to get him out from behind the table. I tried the whole bribe thing, which didn’t work, and I had to put on the stern mom voice. Which I hate doing when I know he’s so upset. I finally got a hold of his hands and feet and slide him out. I scooped him up keeping his legs in the air away from my belly.  He is at this point screaming. I quickly sit down and she puts the arm rests down hoping to hold him in. Just then the door opened. Apparently while I was trying to get him out she called for back up. So the new nurse asked to hold him and I was fine with that. She gets him on her lap and he freaks out more. “I want my mom to hold me!” The nurse told him we would do that but he had to promise not to hurt my tummy. He agreed. So we switched again. I wrapped one of my legs around both of his and she held his other arm. He is just screaming and trying to get away. The needle nurse wastes no time and just gets it done. I think I forgot to thank her for doing that and not trying to make it better. It was horrible but it was over. I finally look over at Gage who is just so worked up after watching his big brother go through that. Just then super nurse showed them the treasure chest. So sucking up tears and their breath they both dug until they found the most wonderful plastic little toy. I wanted to just lay down and take a nap.

Now that the boys are off their steroid I am worried about how the next few months will go. We don’t even know if Gage’s esophagus is still inflamed. If it is we run the risk of it becoming completely swollen shut and the risk of food impacting. Keeping Charlie on the foods he showed positive to in the patch test could do the same to him since he’s not on his steroid. So I’ll have my eagle eye on them every time they’re eating these next few months.

Overall I’m pleased that we did this. A bit bummed with the results. We have to do what it takes to keep them healthy and I will still remain super mom in the kitchen!

Sure could use a glass of wine!

September 16, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING | , , , , , , | 2 Comments

Patch Removal – day three

The boys woke up and remembered today was the day they get their patches off. I woke up with some pretty strong anxiety about how bad it was going to hurt them. Even though a few came up in a few spots this stuff was like super glue.They have mom take it off one hour prior to the appointment because the tape can irritate their skin when you take it off. I had to tell Charlie 100 times that we would eat lunch then take them off and head to see the doctor. Noon rolls around and I ask who wants to go first. Charlie is so excited he wants his off first. So I give him a sucker and wedge him between my knees. I had him bend over one knee so that his skin would be pulled tight. I grab a corner of a patch and RIP! Charlie jumps up and starts crying. FUCK. 20 more to go. So Gage runs and gets Charlie’s yellow (blankie) and we go at it some more. Charlie jumps every time and starts crying more. I try to stay calm and try to convince him if he stays put we’ll get this done quick. Gage in the mean time has told me no way am I taking his off. UGH.  Then I hear Sponge bob. I hate that little yellow man but he might be my life saver in this instance. So we move to the family room. I sit on the coffee table and get Charlie between my knees again. He can see the tv, has his yellow and I have promised another sucker when we’re done. Every single patch hurts him. Some spots of your back are more sensitive which made it hurt worse. This was horrible. Gage still telling me “no way, my not gonna do it.” We approach the last 5 and do a countdown. DONE! With a huge sigh I looked at Charlie’s poor little back.  Having never done this before I had no idea what to look for. I did see a few hives but it really didn’t look that bad. Onto Gage.

Poor Gage. After watching his big brother try to be tough he just didn’t want to do it. So I let him pick out a sucker and we went to the family room where Sponge Bob was still laughing his annoying laugh. I told Gage to get his froggy (blankie) but he told me no, he was tough. Aww. So between my knees he goes. I rip the first one off and he sort of giggles a nervous laugh and again says “I tough”. I asked if he wanted froggy and he said no, so on we went. He squirmed, winced and grunted but never shed a tear. My 3-year-old is TOUGH! Apparently his skin is more sensitive to the tape. Just made me want to cry when we were done, they were brave and let me do it. I was just glad I didn’t have to pin them down and have them screaming. They both did it and it was over, time to head to our appointment.

Since it took a tad longer than I had expected we were running late. I got them in the car and just grabbed Gage’s tennis shoes. When we got to the hospital I went to put on his tennis shoes and I had grabbed his left and Charlie’s left tennis shoe. DAMN IT! Luckily we had brought the girl boots to return them on our way home. So he got to wear them.

We got right in and the nurse had them put on gowns. I love how cute they are in them. Circumstances always suck when they wear them though. The doctor comes in shortly after we have our gowns on and the boys both immediately ask if they’re going to get needles. Oh what have I done to them. The anxiety they must feel each time I say we’re going to the doctor. The doctor and I both assure them no needles today. So he takes a look at their backs then explains to me what he was looking for. He also informed me that he reads their backs at 48 and 72 hours. So still no baths tonight. I didn’t really pay a whole lot of attention to what he found because he said it could all change by tomorrow. So the boys each get stickers and we’re done for the day! Off to the boot store.

We take the boots in and I explain how I had accidentaly bought girl boots. The good ol’ country folk working there got a good laugh and told us to go find another pair. So as I’m on my knees looking at pre-schooler boots a man approaches me and asked if I needed help. Um, yes, as I’m 9 months pregnant crawling around on a store floor. I told him we needed the widest pair of boots he had. He told me it was my lucky day that he had just gotten in a load of wide width kids boots! Said they had never had kids boots in widths before, I told him I already knew that. So he went and got us a pair. They’re western boots with the pointed toe. Gage slipped them on and LOVED them. He was so excited. So we took them up to the counter and they were $10 cheaper than the other pair we had. Turned out to be a great day after all!                                   That night I again stood them in the tub and gave them a sponge bath. I then laid them on the counter and washed their hair in the sink  along with washing their face. All clean and ready for our last day!

September 16, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING | , , , , , , | Leave a comment

Keeping the Patches On – day two

Upon waking I immediately check the boys backs. They turn into the sweatiest little things when they sleep. We had turned the air down to 70 in hopes they wouldn’t sweat as bad as they normally do. Everything looked good. I had to add a bit more tape to each of them but so far everything was still in place.

My plan for the day – to keep them busy but not running around getting all sweaty and dirty. Keeping the tape dry also means no shower. Ew.

We get dressed and eat breakfast then head out to run errands. After the errands we head to the cowboy store for some boots! They were so excited. They both have wide feet so they haven’t been able to get any because they all tend to run so narrow.

We did finally find a pair for each of them. They couldn’t have been happier!  That is, until Daddy got home. Daddy looked over their boots then wrote something on a piece of paper and handed it to me. “Do you know you bought Gage girl boots?” UGH! I was so frustrated. He got the first pair he tried on, loved them and they were wide enough! How do you know I asked?  He then pointed out to me on the bottom it said Lil Flirt. There was also a scalloped edging across the toe. Not very manly.

So we explained to Gage that we accidentally got him the wrong pair and we would get him different ones tomorrow. He was totally fine with that! Phew

It was definitely the longest afternoon of my life. Trying to keep two little boys from wrestling, wanting to play outside in the heat and keeping them entertained and calm. I felt bad for them. They have so much energy it was hard to contain themselves.

That night I stood them each in an inch of water in the tub and did my best to get their stink off. It was hard for Gage to understand that he couldn’t sit down. He’s still on the steroids for his wheezing so he’s extra irritable, made for a fun sponge bath.

They both made it into bed with out loosing a patch. I was so proud of myself. 🙂

16 more hours till the patches come off.

September 16, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING | , , , , , , | Leave a comment

Our First Clinic

When we first discovered the boys had Eosinophilic Esophagitis we debated on going to the specialty clinic in Cincinnati. Once we found trust in our allergist and GI doctor we changed our minds. Since moving to a new state and finding new doctors I quickly realized I did not like our new allergist. While on the phone with one of the nurses she had mentioned that maybe we should go see the specialty clinic group. Having a group so close we decided we would give it a shot.

The specialty group is an allergist, GI and nutritionist that all work together. They actually sit down together and discuss each patient.

It took 3 months for us to get in and today was our first day. The papers said it would be a 2-1/2 hr appointment. We would review their history and what was to come, along with patch testing. Patch testing intrigued me. We’ve only done blood work and the ever dreaded prick testing.

So with a bag full of entertainment, snacks and two thick stacks of files we headed off. It takes an hour to get there so we ate lunch in the car. Strapped in and nothing to do, that’s when they eat best! We arrive and head right in. They must have been on top of things. We learned Charlie is finally gaining weight, he’s up to 44lbs now!  Gage is still putting on some pounds, he’s an ounce away from 36lbs.  With only 4″ between them I’m wondering how soon Gage will catch up! The nurse leads us to our room where another one comes in to get our computer file pulled up. We only had to wait about 10 min to meet with the GI doctor. I was impressed things were moving along. I had a timeline of the boys reactions, allergy testing and scopes all written up. This made things so easy. We covered all angles of their allergies, EoE, possibly scope plan and their diets. She quickly learned the boys are not the typical EoE patients as they don’t have the symptoms. The only proof of the disease is their scopes. Typical kids have lots of tummy troubles, heartburn, diarrhea, trouble swallowing…etc. So with that said we’ll approach things with caution and have our game plan on Thursday. After we went over everything came time for the patch testing.  Patch testing is taking an actual piece of food, mashing it up and putting it on a small disc. The disc is in the center of a square piece of medical tape which is then placed on their backs. They wear them for 48 hours. Charlie was nervous and upset at first, the unknown was going to be placed on his back where he had been stabbed with a stupid little caterpillar in the past. Once he realized it was only tape and didn’t hurt he was just fine. Gage’s reaction was to immediately tell me he would not be doing it too. With the promise of  a sucker when he was done Gage did get his patches on. Since Gage has anaphylactic reactions to egg and recently had blisters around his mouth from peas we avoided doing those two foods. So now I have two boys with tape all over their back that cannot come off until Wednesday. This should be interesting. No bath or shower, no getting sweaty and no taking them off!

We go back on Wednesday and remove the patches and read the results. It’s suppose to be an in and out appointment. Wednesday afternoon/evening the three doctors meet and go over a plan for the boys. Thursday afternoon we go back and go over things.

On top of having his back all taped up Gage came down with yet another cold on Friday. I’m guessing from his first week at pre-school. By Sunday he was wheezing and today he keeps going down hill. I have called in his oral steroid because the albuterol in the nebulizer just doesn’t seem to be helping things this time.

September 12, 2011 Posted by | Charlie's allergies, Gage's allergies | , , , , , , , | Leave a comment

   

%d bloggers like this: