LIVING

With EoE, Allergies, Asthma and a G-Tube

We’re EATING!

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.

PicsArt_03-13-09.45.23What 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.

20170313_131333On 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!

March 13, 2017 Posted by | Gage's allergies, Layton's food exploration, LIVING | , , , , , , , , , , , , | 1 Comment

Gage Update

Gage was scoped in December the same day as Charlie. We had tried to take Gage off his steroid when we took Charlie off his, but Gage started choking and coughing a lot so he went back on it. Before this scope we had removed wheat and oats from his diet because of his horrible bad scope in July. So we were really hoping there would be improvement.
It took a little longer than usual for the GI doctor to call me after their scopes so I called her. She gave me Charlie’s news with great enthusiasm. Her mood drastically changed when it was time to talk about Gage. Gage’s scope was still very bad and that is why she hadn’t called me. She didn’t know what to do and was trying to figure it out. His mid esophagus had 14 eosinophils and his distal was 54+ and there are fibrosis. Fibrosis is the hardening of the tissue which is what we are trying to avoid and the reason we do special diets trying to find the trigger foods. I got very upset. So it’s more than the wheat and oats that’s causing Gage’s issues. I told her that the only other food he’s eating that was removed before is corn. She reminded me that his patch test came back positive to pork and green beans. So after a long discussion she left it at we remove pork and green beans and keep him on his steroid twice a day. We’ll re-scope him in 3-4 months. At that time if he isn’t better, then we’ll remove corn. So Nathan and I had a talk that evening and we talked about why waiting to take out corn, because that eliminates a lot of everyday things for him. We then decided that we would let him try potatoes. If he did ok on potatoes then we would take out the corn. If he has a clean scope next time we know it’s probably pork, corn or green beans. If it’s a bad scope then we know it’s potatoes.
Gage is currently off the following foods:
Beef
eggs
soy
rice
seafood
peanuts and tree nuts
peas
mustard
celery
sesame
wheat
oats
corn
pork
green beans.
It’s tough. Although having potatoes allows him to have a few flour mixes and cake mixes he couldn’t previously have because of the potato starch. Now if he could just have rice our world would be so much easier.

January 17, 2012 Posted by | Gage's allergies, LIVING | , , , , , , , , , , , , , , , , , , | 2 Comments

Turkey pasta skillet

I wish I had a magic recipe book that would have every meal planned out for a month, including the shopping list. Trying to come up with something for dinner I just made something up.

I browned some ground turkey while boiling some corn pasta. For the veggie I cooked a little bit of corn. Once the corn and noodles were done I added them to the browned turkey in the skillet. I had the last part of a bottle of zesty italian dressing left so I dumped that in. I also tossed in some halved cherry tomatoes for color. The boys thought it was great and ate every bit! I was surprised. I’ll keep this one on file for something quick and easy!

August 8, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING, What's for dinner | , , , , , , , , , , , | Leave a comment

Made up Mexican

I tried to get creative with beans. I also wanted the meal to be something I could throw in the crock-pot. I had chicken on hand so I threw that in then started dumping in cans. I added black beans, kidney beans, corn, tomato sauce, diced tomatoes and a half packet of taco seasoning. I just let it cook all afternoon. About an hour before I was going to serve it I pulled the chicken out and cut it into bite size pieces, then dumped it back in.

I put a few ladles in each of the boys bowls and topped it with cheese. When I set it in front of them I told Charlie it was Mexican food. Much to my surprise he was so excited. He said he had always wanted to eat Mexican food and he dug right in. Ate the entire bowl! Gage wasn’t as excited, but like his enough to finish half.

I had enough left over for a few Tupperware containers and put them in the deep freezer for quick meals. I really didn’t think their little systems could handle that many beans for leftovers.

July 11, 2011 Posted by | Charlie's allergies, Gage's allergies, What's for dinner | , , , , , , , , | Leave a comment

Blood tests and scopes

Both boys got their blood test results back from the microarray test. At first I was so excited! Charlie’s showed he was only allergic to Peaches and Kiwi. Charlie’s environmental came back positive to basically everything outside including mold, dust, cat and dog. He should probably be in a bubble. Gage’s food test showed only nuts, eggs and soy. His outdoor came back with a few grasses, russian thistle (tumble weeds when they’re alive) and cockroaches. Darn cockroaches. lol

So pure excitement ran through Nathan and I. The boys are doing better, we’re going to get to add just about everything back into their diets!

Then the questions ran through my head. What about the foods that Charlie has shown actual reactions to? The blisters on his lips when he eats mustard, the itchy mouth when he eats beef or the hives he gets when he touches any kind of melon? What about the foods that made Gage vomit, have diarrhea or hives?

Even more thoughts crossed my mind about the test and what the doctor had said about environmental allergies triggering Charlie’s EE. Charlie was tested the first time for EE in May of 2010. He was just scoped again June 7th. With his environmental allergies at their highest right now I would certainly think that his scope will come back positive. He’s been having throat clearing issues, lots of asthma attacks and swollen eyes. So certainly this will prove Charlie’s EE is environmental.

June 7th – Charlie’s scope day. Gage had been on an oral steroid for his asthma the week prior so he would not be scoped the same day as we usually do it. Charlie’s scope went great. Everything looked perfect and he had zero eosinophils in his esophagus. He did have a few in his duodenum but the doctor said a few there is normal. SUPER! However, this does not answer the question is Charlie’s EE caused by environmental allergens. Charlie’s allergies are so bad right now I expected his esophagus to be a mess. So I’m now very leery of the microarray test and what it has shown for Charlie. So we have started adding more foods back into Charlie’s diet. We started with beans. He LOVES lima beans and green beans. Nathan gave him a can of bean and bacon soup for lunch this weekend and Charlie ate half the can! Things are going great for Charlie.

June 21st – Gage’s scope day. Very bad news. Gage’s esophagus was very inflamed, had furrows and plaque. The doctor said the plaque could be a yeast infection from the medicine that sits on his esophagus every night. We would treat it with nystatin if it came back positive for yeast. She also said the plaque is very common with EE. Not sure yet what the result of that test is. We did get Gage’s eosinophil count – 49. That is the highest his has ever been. It’s actually as high as Nathan’s. Broke my heart. He hasn’t shown any outward reactions, nothing. I don’t have the rest of the results for his stomach and duodenum. Since Gage’s last scope in December that was clean we had added back wheat, oats and corn. We have now removed wheat and oats. My mom gut feeling has told me from the start that wheat is Gage’s trigger. I hate if I’m right. We are basically back to the beginning with Gage. He is off all foods we started with except corn. We really hope his next scope is clean so he can keep corn.

So that’s where we are now. The highs and lows off EE.

Nathan is not being scoped at this time. He is doing well enough he doesn’t feel like he needs to be seen. I’ll push him more this winter to get things checked out again.

June 26, 2011 Posted by | Charlie's allergies, Gage's allergies | , , , , , , , , | Leave a comment

Things are looking up

Although we still have a long road ahead of us, right now things are great. Gage has been eating wheat and corn for a month now and no problems at all! He’s also ditched his crib, diapers and bottle!  He’s like a little man now. (sniff sniff) I knew that when he was asking for a bottle of warm milk it was time to give it up. I let him have it for so long after turning one so that he would get extra calories he needed. Knowing he always finished his bottle it was a win win for both of us.

We’ve had his toddler bed set up in his room for quite sometime but he’s been afraid of it. I think he’s going to be a gentle giant when he grows up. Finally one night I said let’s try the big boy bed again. He slept in it all night with no problems. Next day, crib came down. The great thing about it is he won’t get out of the bed unless I’m in the room. That includes during the day too. With Charlie we would always have to sit there until he fell asleep because he would never stay in it.

The potty training was super simple too. He’s not even 2-1/2 yet! First week we went right into underwear. He had 3 accidents and that was it. He’s even staying dry at night and during nap. He may be the easiest kid yet.

He recently had his first pop tart. It was like baby crack. Have to be careful though some pop tart flavors do contain egg. I’m still learning!

So let’s cheers to Gage for a great month!

October 26, 2010 Posted by | Gage's allergies | , , , , , , , | Leave a comment

Wheat -where have you been all my life?

Oh that’s right I’ve been allergic to it. Just some thoughts I’m sure Gage is having now. Let me back up a bit.

Gage recently was scoped for a EE check up. Everything came back clear! No eosinophils in his esophagus or blood stream! What a huge happy day for us. Dr gave us the go ahead to try corn. So after two weeks on corn with no reactions I called the allergist. He decided to go ahead and let us try wheat too. We’ll stop there until the next scope. For the past few days Gage has had wheat products. The very first thing he asked for were “Charlie noodles”. Coming from a two year old it was pretty cute. Oh he loved them! He knew just how to stick his fork in there and twirl it around. He’s also had a few Ritz crackers, two oreo cookies, a slice of toast and a cinnamon roll. No reaction. We’ll go slow on it for a while just like with the corn. I told my husband if he can have corn and wheat back then i’m fine with just that! Yeah wheat and corn!

September 17, 2010 Posted by | Gage's allergies | , , , , , , , , , , , | 2 Comments

Wednesday Challenge

Wednesday is Fun with family and friends.

My Challenge for you is to eat like us for a day! Here’s your list of do not eat foods: wheat, soy, sesame, rice, oats, mustard, beef, all fish, chicken, celery, corn, peas, green beans, onions, garlic, eggs, potatoes, all nuts, pineapple, all melon. Make sure and read those labels!

May 19, 2010 Posted by | daily life | , , , , , , , , , , , , , , , , , | Leave a comment

Are More Allergies Possible?

Took Charlie to the allergist today to get tested for mustard and eggs. We decided to do the whole food panel and seasonal allergies to get it out-of-the-way. No sense in putting him through more testing down the road. Plus Charlie is drama about somethings so I knew this wasn’t going to be fun.

Nathan holds Charlie on his lap while the nurse starts pricking his back. The first group of 8 he was ok with. The second group he started to cry and by the third he was screaming. We had to grab his hands and Nathan had to hold him tight. Poor Gage didn’t understand what was going on. I look over at him and he’s bawling at the site of his brother in pain. I’m trying not to cry and trying to get ahold of Gage’s hand to help console him. HORRIBLE

Once it was over Nathan takes Charlie to the play room. I have to change Gage’s diaper. He repeats over and over in his toddler language “needle?” 

Once the timer beeps we all head back to the room. The nurse holds Charlie on her lap as she measures and reads off a bunch of numbers to another nurse. The nurse writing says to me “You guessed mustard, right?” Right I answer. She says “mustard is one, and beef….” I just sort of ignore the rest of what she said. I could see he had a lot of hives but really didn’t want to believe them. The Dr comes in, looks over the paper then looks at Charlie’s back. He then starts to read: Soy, all nuts, all seafood, beef, chicken, cantaloupe, pineapple, celery, corn, green beans, onion, pea, garlic, mustard, oat and rice. I was head down, in complete tears and had to leave the room. So I gather myself and step back into the room. Nathan at that point is asking about the research they do in Cincinnati Ohio. The Dr said he is going to refer us there. He doesn’t want to come out and say Charlie has the same disease as Gage, but with Nathan’s food allergy history and the fact that Gage has it… We’ll get Charlie scoped and see what happens.

Charlie also has seasonal allergies to all pollen, outdoor mold, cats and dust.

May 13, 2010 Posted by | Charlie's allergies | , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Negative Corn

Blood results in and Dr says corn is negative. Rice is still a low 1.2 and oats is a 1. With both of those numbers being low and I’ve never seen a reaction we keep him on them. I argued about the corn and the Dr said we can do a test in office to see how he reacts to corn. He doesn’t want me to take him off corn because there isn’t a lot left with out it. I already know this. Dr says feed him corn, I will feed him corn.

So today at lunch I pull out a jar of baby food that is a safe veggie blend for him with corn. It’s all organic too. An hour later, diarrhea. Three hours later his bottom is starting to get inflamed again. I also gave him a popsicle (corn syrup) and his face flared up some more. It hasn’t gone away since this new stuff popped up. So Dr. still don’t think it can’t be corn. *gasp* I guess I have some anger. I told my husband tonight that I knew when Gage was allergic to soy and the Dr doubted me. BOOM big time allergic. I’m pretty sure I’m right this time too.

Not the most flattering picture of him but you can see how’s he broke out. It’s not eczema. It starts out as little dots, like on his forehead. Around his mouth the dots are becoming more dense in certain areas. I was told they are more environmental. He really doesn’t have any environmental allergies. Two came back positive: Russian Thistle and (get this) COCKROACHES! Who in the world is allergic to cockroaches? 

Hopefully the GI Dr can give me some more insight as to what’s going on. I’m very nervous now about rice and oats because who knows what’s going to make his throat swell more.

May 11, 2010 Posted by | Gage's allergies | , , , , , , , , , , | Leave a comment

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