Deseret News | Reader comments: Allergic to food: Digestive disorder leads to child's feeding tube

Reader comments
Allergic to food: Digestive disorder leads to child's feeding tube

Sue | 1:13 a.m. March 31, 2008

I wonder if leady gut syndrome has been considered and has the child been treated for that. Hang in there it will get better! I know, I have it!

MG Duchene | 8:15 a.m. March 31, 2008

Why don't they put the feeding tube in the stomach?
It does not show and is more comfortable?

Ashley's Dad | 9:23 a.m. March 31, 2008

On Friday the 28th of March, she received her stomach tube. It was inserted just below her ribs and above her belly button. She is still very sore and still fairly depressed but is getting better each day. She is just so tired of dealing with this, but she tries to make the best of it. She is really quite strong, but still, she's only 9 years old. It's really been hard on her and even on the rest of her family. Dinner times are the worst.

Comments continue below

April | 10:29 a.m. March 31, 2008

Hi to Ashley and Ashley's parents. My 7-year-old son Nate has eosinophilic gastroenteritis and eosinophilic colitis. His known allergies are peanut, soy, pork, gluten from wheat/rye/barley/oats (he also has Celiac). We just found out about his EGE recently and are trying to identify additional triggers. Nate's little brother Drew drinks Neocate plus a few foods, but he started it when he was very young and actually likes the taste. Thanks for sharing Ashley's story. It is helpful for kids with EGIDs to know that there are other kids out there with the same thing. Tell Ashley she is very brave, and God bless you guys!

Pamela | 12:31 p.m. March 31, 2008

My 8 year old son, Noah, has an IGE level of 9800. He's allergic to things we haven't discovered yet. Noah has had many tests performed and we found out that he has IBS also. I really don't know where to turn to help for him. In our state we have exhausted every avenue available. He is considered a medical anomaly by every medical personnel he has met. The mere fact that he is 8 is nothing short of miraculous, as we have found out his anaphylactic reactions by accident, resulting in many trips to the ER. If anyone has any suggestions it would be much appreciated. His doctors remain baffled and don't know what to do other than what they have. He has severe eczema, asthma and lots of life threatening allergies. It's easier to tell people the few things he can eat rather than to explain what he cannot. All seafood, all nuts, peanuts, milk, eggs, soy, garlic, cats, mold, grasses, trees, and weeds are off the charts and can kill him if he did not take daily meds & carry an epipen. Thankfully, he's a trooper and an inspiration to all who know him.

Kay | 1:22 p.m. March 31, 2008

Ashley is truly an amazing, strong young girl! The Zundels have done an incredible job with staying positive about this disease. A disease that is very complicated and misunderstood. Like it said in the article Tammy has started a local support group for kids dealing with eosinophilic disorders, very restrictive diets and formula issues. The next meeting is on April 29 (see article for location).
There is also a group in Utah that deals with kids with food allergies please check us out at www.utahfoodallergy.org. Best of luck to Ashley and The Zundels.

stephanie | 6:46 p.m. March 31, 2008

hi pamela, i just wanted to suggest something called NAET which is an allergy elimination technique. you sound like you really need some help, and it might be an answer for you. it works so wonderfully with children, especially.Do some research, i have seen it perform miracles.i wish you the best.

Katie | 2:25 p.m. April 1, 2008

Hi - My daughter has EE and EG. We just went to an elemental diet on March 15, and she will drink it fine. We use neocate E28 Splash and neocate one + with flavor packets. We get about 50 ounces in her a day. Have you tried any of these products yet? brooke is 6 and it was hard at first, but it is going OK. I hope that everything goes great for you, and i hope that your insurance company will pay at least a portion of it. Ours will pay 75% if we go through our durable medical equipment policy. They deliver it right to our house whenever we need it.

Deanna | 2:27 p.m. April 1, 2008

My son was recently diagnosed with EE. He is 10 years old. We have eliminated rye, wheat, soy, and beef from his diet. He tested positive for these foods by patch testing, he has non IGe allergies. He is to be retested on April 21st (after 2 months of eliminating the foods). We do not believe it it the foods. We believe he is sensitive to medications, he was taking Miralax 17 grams daily (adult dose).

Tammy | 3:51 p.m. April 1, 2008

Pam, I am so sorry to hear about your son. I know how difficult it is to try and try and still see your child sick. My suggestion ( if you have not already) is a good pediatric gastro and a really good allergist.It really does make a difference to have a good one.We tried a few until we found doctors at the PCH and a great allergist. We also do a lot with a Nutritionist. I would be a little skeptical of people who claim to have cures that seem to good to be true. They usually are.
If you think that your child may have an eosinophilic disorder, we got a lot of info from APFED.org. I have an e-mail address at eos.utah@gmail .com. if you need any other help.
I also do a lot of research myself on the web late at night. I have learned a lot and sometimes I feel like I lead my doctors along the way. That may be your case. It is a tough road though.Good luck.

Jenn | 2:14 p.m. April 2, 2008

Another EG family, here! You guys are doing great, hang in there! We've been dx'd for about a year and a half, now. It's definately a work in progress but she sounds like a positive person and that is so important, to have a good attitude through the treatments, trials and eliminations.

Leslie | 4:00 p.m. April 2, 2008

I feel for those who suffer with long term health conditions, especially children. I'll share what we went through in hopes that it may help someone, I know every situation is different. My 5 y.o. son also had eosinophilic colitis, we were told by a GI specialist after a colonoscopy. We have a family member who has had colitis for years and now has a life threatening condition. In my mind I was fighting for my child's life in trying to figure this out and find a solution. We tried for 1 year going to GI specialists, allergenists, doing lab tests, colonoscopies, stool tests, and endless hours of research on our own to find a solution that was acceptable. Prednisone, repeated colonoscopies and eventual removal of the colon did not seem right to me. We did everything we could for him through traditional medicine, but he was not getting better. One of our trusted friends finally told us, that it may be time to take a look at alternative medicine. As a nurse, that was very hard for me. I am so glad I did, my son is better now. Ask someone you trust to recommend an alternative healthcare provider.

Leesa | 11:27 p.m. April 11, 2008

I am very sorry for the suffering of your children. My son at 8 months had developed allergies to almost every food. He suffered from severe eczema and asthma. We worked with Dr. Michael Biamonte, a Nutritionist & Naturopath that is in New York through phone consults & home test kits. He had helped me when I came home from my mission with a number of chronic health problems that were all related to my digestive health. He was able to heal my son's bowel problems, along with his eczema, asthma, and food allergies. We are finishing up his program for my son, and have now added in all vegetables, berries, eggs, seeds, fish...ect...
These were all symptoms of leaky gut and candida.
I wish you the best on your path to healing for your children. Explore all your options, and pray to be lead to the right ones.
I was very medical minded before I became so sick, and a trusted Mission pres. recommended to be open to alternative ways to heal, since traditional medicine could not help me. I have a website to share our experience in hopes of helping others. Just search for Leesa, Isaac, candida.

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