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.

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

3 Comments »

  1. Hi! I have a son with EoE and EG and I have been following your blog. I was wondering how you prepare tapioca as a trialed food. We are currently trialing apple, pear, potato, orange, and grape, and the only safe foods are sweet potato and carrots. Scoping next week for the 5 trial foods so I’m trying to gather ideas for what to trial next. (Another I am going to ask the docs about trialing is hemp, since it can be made into a rather nutritious beverage or a flour.) Any info on tapioca would be really appreciated!

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    Comment by Tanya | October 8, 2013 | Reply

    • We trialed tapioca with the intentions of him being able to eat chebe. Are you familiar with chebe bread mixes? We used the all purpose bread mix. It calls for egg but I used the water, oil and baking powder mixture for that. So basically we were trialing chebe. I had taken in the ingredients to the doctor and she said go for it. I can also use tapioca starch now for baking. Once we got rice I was then able to use rice flour with the tapioca starch and make him pancakes. We did try to make tapioca pudding but using rice milk it didn’t stand up very well. He didn’t care for it much.

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      Comment by livingtheallergylife | October 8, 2013 | Reply

  2. Thank you! Hopefully we will be able to try more interesting things like chebe. I am convinced reflux won’t be as much of an issue if he can eat more than just fruits and veggies. I am glad to hear your son did well with rice. Apparently at CHOP it is one of the more common triggers they see in their patients. (We don’t go to CHOP but their docs spoke at the APFED conference.)

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    Comment by Tanya | October 11, 2013 | Reply


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