LIVING

With EoE, Allergies, Asthma and a G-Tube

EoE, It’s in the family

I had mentioned not too long ago my niece Ellie was recently diagnosed with Eoe. Here is her story written by her mom.

My daughter, Ellie, was diagnesed in mid-July, at age 2, with EoE.  Her diagnosis suprised me because she does not suffer from the “typical” EoE symptoms.  Ellie was born with a cleft soft palate.  Early on she was on reflux medicine because she constantly spit up; however, once she had her repair surgery, the spitting up stopped.  Ellie has always been a good eater, especially compared to my older daughter.  At 14 months, , Ellie had her first, and only, “true” allergic reaction.  After one lick of cake batter, the area around her mouth broke out with hives.  I had her allergy tested for the top eight.  She reacted to eggs and peanuts. For reasons, I cannot remember, I felt like she also had a milk allergy; however the skin test came back negative.  By testing time, Ellie had already started soy milk and liked it so much, I never switched her back. 
Ellie has never had a solid bowel movement.  Her butt is and always has been red, had sores, and irritable.  Though she was always a 12 hour night time sleeper, starting around Februrary of this year, she began waking several times a night.  Around this time, too, Ellie’s eczema, which we have battled since infancy, became a permanent fixture.  I have tried four steroid topical creams but none have worked.  Ellie has asthma, but it is only noticeable when she is sick.  She is a thriving child that does not choke, vomit, or ever appear to be in pain. 
So why have her go through an endoscopy and colonoscopy?  I had been telling her ENT that I believed, as a mom, that she has more allergies because of her constant diarrhea, sores, etc.  Of course, I mentioned that my brother and two nephews have EoE.  My concern was that she had EG, EGE, or EC, but not EoE.  After being referred to a local GI and being scoped, I learned that I was wrong, Ellie does have EoE.
After her diagnosis, she went egg, peanut, nut, wheat and milk free.  Blood work indicated a wheat and milk allergy, but the skin test did not confirm.  No other allergies were confirmed with a skin test.  Since taking her off wheat and milk did not clear her eczema, last week I removed soy from her diet.  To my excitement, her eczema has improved tremendously. 
I am still confused since she is not testing positive for many food allergies, but I am hoping to get a greater clarification when I meet with the doctors at Cincinnati’s Center for Eosinophilic Disorders (CCED) in September.
When Tina called me with Ellie’s news I was so upset for them. It angers me that kids are dealing with this and there is no cure or clear answers for anyone yet. We definitely know that EoE is in our genes. Leads me to wonder what will this disease do when my boys have kids. Tina doesn’t have EoE but could she be a carrier of the gene like women do for colorblindness. Will Tina’s other daughter carry the gene? There are a thousand questions and I hope someday soon we get some answers.
Thank you Ellie, and Tina, for sharing.

August 16, 2011 Posted by | LIVING | , , , , , , , , , , , , , , , , | 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

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

Beautiful Donkey Trees

We took a trip to Florida a few months ago. When we left the airport in our rental Charlie kept saying “Hey look at those donkey trees!” Like I said, he takes a speech class. My husband and I were really struggling trying to figure out what he was saying. We said yes they’re palm trees or tropical trees. Charlie was getting more and more frustrated repeating donkey. Then it hit me, he had never seen real trees like this – “Charlie are you saying FUNKY!”   “Yes Ma, look at all the donkey trees!”  We held our laughter in.

Recently in Southern Indiana everything was blooming. We were riding in the car one morning and Charlie took notice. I hear him in the back seat talking

Charlie: Wow, look at all the beautiful trees Gage. It’s like we’re in a jungle. Oh look there’s some with flowers. Hey Ma

Me: What Charlie?

Charlie: Did you see all the beautiful donkey trees?

I chuckled silently to myself. I sort of hope *donkey* sticks around a long time.

April 27, 2010 Posted by | Life according to Charlie | , , , , , , | Leave a comment

   

%d bloggers like this: