LIVING

With EoE, Allergies, Asthma and a G-Tube

Something’s fishy

It’s been a great summer. The only epi pens used were on Nathan. That’s just stubborn him going out to lunch where he probably shouldn’t.

We attempted a triple scope day this summer. Couldn’t have gone better. 20130815_142150The results of that day is where we are now.

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Charlie was clear. We had removed chicken from his diet. That did the trick. So his only meat was pork. We decided to give fish a try. He had never had it and went both ways on allergy testing for it. After a four-hour food challenge at the allergist’s office we are happy to announce Charlie is trialing fish! He LOVES Gorton’s fish sticks. I love how easy they are.IMG_20130930_105929

Gage’s scope results from that day were wonderful as well. Gage is now up to seven foods: blueberries, rice, strawberries,lemon, cocoa, tapioca and green beans. We really wanted to add a protein to Gage’s diet. The only thing we had left was fish. So after a negative blood test he did the same four-hour fish challenge at the allergist’s office. Let’s briefly touch on what happens at a challenge with such a highly allergic food. I bring the fish of choice ready to go. They first do a skin prick test with the fish that I bring in. Next they rub fish on his lips and leave it sit for 15 min. In the mean time I’m sitting there watching him like a hawk making sure there are no hives, coughs, itches or anything that looks like a reaction. They then have him try to hold a little piece in his mouth for 15 minutes. After that, they give him bites to eat every 15 minutes. Each bite increases in size double of the previous bite. Each bigger bite results in my nerves climbing through the roof wondering “is this the bite that will set him off into a reaction?” It’s very exciting each time we hear the timer go off, no sign of a reaction and they come in with another bite. Very exciting for a little guy who loves to go fishing but has never had the pleasure of tasting it. The mom side of this is absolutely nerve-wracking. Imagine feeding your child something you have done your best for the last 5 years to keep away from him. Lots of praying went on in that room. There were no tears allowed. It was Gage’s exciting day, this mom wasn’t going to ruin it for him. I’m not sure how I made it through that day, or Charlie’s. I did though, and so did they. Now they both get to eat fish. Gage doesn’t get to enjoy the Gorton’s fish sticks. However, I have found a wonderful rice flour based tempura I can use to make him fish nuggets. He loves them.  I love that he loves them.IMG_20130924_165944

The results of that scope for Tinleigh were horrible. On the highest dose of steroids she was still very inflamed and with high eosinophil counts. So we removed the last of the grains and meats which were rice, oats and pork. Our hopes were to get her to  drink more elemental formula. The pressure was on. I managed to start getting 26-28 oz a day down her. Which was great because with not much left for her to eat I couldn’t figure out what to feed her. Then she caught a cold and started throwing her cups of formula back at me saying YUCK!! Now she will only drink the unflavored mixed with some coconut milk in her bed in a bottle. Don’t worry, we’ve seen the dentist and her teeth are fine. We recently had her scoped again. Results were confusing, she had less than one in the mid and upper esophagus. Her lower esophagus was actually worse than last time, more than 50. WHAT?? How is that? We’re hoping that its reflux. Although that’s a high number for reflux. So we are starting her on a reflux med and will scope her in 8 weeks. We are also going to do a fish trial on her. Since she’s stopped drinking as much formula we need to get something else into her. Do I agree with this plan? Not 100% I don’t like her on the steroid, all we’re doing is masking anything that may still be effecting her from her diet. I hate adding foods when on steroids. Again, the steroid just masks problems. However, she doesn’t have enough food to thrive. She’s two, she has to grow. I did manage to help her gain some weight while I was getting her to drink the formula. In my perfect world we would add the reflux med, stop the steroid and re-scope in 8 weeks. That wold be the real truth of what’s going on with her.DSCN3424

So my kids are now eating fish, Tinleigh will trial it tomorrow. Who would have thought I would ever be preparing fish for these three? I’m so happy that its working out. I just hope and pray the scopes in December are still good.

October 8, 2013 Posted by | Charlie's allergies, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , | 3 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

Our new enemy – CORN

Here’s a list of Gage’s food allergies that was stay clear of: beef, wheat, soy, sesame, celery, mustard, eggs, peas, potatoes, sweet potatoes, all nuts & fish.

Since doing the blood test yesterday to check for more food allergies we are staying clear of corn. CORN is in everything. It was in 75% of the baby food he could eat. While making him Gage safe pancakes this morning I learned corn starch is in baking powder. There goes our egg substitute for baking. Then at lunch I learned corn syrup is in the safe hotdogs he can eat. What else will you pop up in corn. Oh there goes a snack – popcorn!

This will not be a fun week and a half while waiting the results.  

May 4, 2010 Posted by | Gage's allergies | , , , , , , , , , , , , , , , , , | 2 Comments

A little Gage introduction

Gage is my latest creation.  I would best describe him now as shy, strong, loving, mellow and a great dancer.

He started with his food allergy issues before we even realized what was going on. Around 8-9 months when I started some table foods he would choke and puke everyday. I mentioned it to the pediatrician and we wrote it off as a sensitive gag reflux. A few months went by and he was still vomiting. But now it would be 15 – 30 minutes after a meal. He would also become horse. Knowing what I know now, we’re so lucky he never had an anaphylactic episode. My husbands food allergies are so severe that he instantly becomes covered in hives and basically has an anaphylactic episode if he eats the tiniest food allergen. So we didn’t really think of what was happening to Gage as being food allergies. Charlie had a few when he was little but he would get hives. So again I mention it to the pediatrician and he says we’ll watch him and we may have to check a valve or something. Well I was keeping an eye on the foods he was puking up and it seemed to be cheeses and things with egg. So I made the dreaded allergist appointment. This was in the fall of 2009. We didn’t do a full panel on Gage because I thought I could tell what it was and we did a few other highly known allergies. POSITIVE! I didn’t cry because at that point it was only egg, nuts, peas, all fish and wheat. No biggie I can handle that. Actually peas were negative but I had seen him get a few hives while eating them. We did a control test and he broke out in hives eating only 1/3 of a pea. So no peas. His wheat count was low so he was still getting that in small doses.

A few months later he had a horrible reaction at dinner and he didn’t have anything in the meal that had shown a positive reaction so back we went. I insisted it was soy, the allergist questioned it but tested it anyways  – BINGO! What is it they always say? A mom knows hers kids best or something like that. So we added soy to the list.

Another month went by and he started getting hives after more meals. So back to the allergist, this time we did a full panel. I actually laughed when the allergist told me all the positives. I guess that was how I kept myself from crying; egg, peas, soy, wheat, fish, all nuts, beef, all potatoes, rice, celery, mustard and sesame. What is this kid going to eat.

I can honestly say at this point I have no longer enjoyed grocery shopping. Those first few trips I went alone trying to find anything for him to eat. I do need to mention we kept him on rice because it was low and he had never shown a reaction. Still to this day I find myself almost in tears looking at certain kid foods feeling bad that he can’t eat it. I then struggle because his brother can, so do I buy it and sneak it to him? Should he miss out too? It’s these sort of thoughts and things that bother me the most. Gage is actually fine and doesn’t know any different. He’s healthy and huge – always been on the 75% for his growth.

After his last allergist appointment he mentioned EE to me and said let’s get him tested for it, it’s something that can be treated with medicine. Oh well that sounds great! Let’s do it. I hate the thought of him on meds all the time but if it helps him eat let’s check it out!  BUZZ WRONG ANSWER  I went home and did a little google search. Not really what I was expecting. Made the GI appointment and made my list of questions.

At the GI appointment she walked in, we spoke a little, she looked at Gage and said “He really doesn’t look like he has EE. However, he does have a lot of strange food allergies. We can scope him now or we might be scoping him down the road when he comes in with something stuck in his throat.” She was really positive that he didn’t have it. My husband and I decided let’s go ahead and scope him now because we’re going to have to do it at some point anyways. We had Gage scoped the end of January this year. Sure enough his little esophagus was so swollen the Dr was surprised he could even swallow food.

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

   

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