Alisha Coupe's True Story
Alisha's son John was diagnosed with severe food allergies/anaphylaxis at 15 months of age. Currently, he is anaphylactic to eggs, nuts, peanuts, lamb, beef, garlic, mustard and onion. He has oral allergy syndrome to many fruits and comes up allergic to various foods.
John was diagnosed with eosinophilic esophagitis in November 2006 after a year of vomiting almost on a daily basis. Prior to this, doctors kept telling us that John was just building more and more allergies, which he was, but we didn't know why. When John was first diagnosed via endoscopy with multiple biopsy's, he was put on a double dose of prevacid and singulair (asthma control). We thought treatment was working since his vomiting slowed down a lot, but at our visit with CHOP (Children's Hospital of Philadelphia) in April, we were told that his 2nd biopsy showed a higher count of eosinophils and inflammation. At this point, John needs to come off all foods that he is eating (which was mostly milk and wheat) and to go on a formula only diet with a few fruits and veggies that he is not allergic to (sugar is allowed). The real task is getting John to drink this formula-we will try everything, but if he doesn't take it, he will need a feeding tube to maintain his health. After 6 or so weeks, we will re-scope John and if his esophagus scopes clean, we can add one food per week, maximum of 5 per month and rescope every 6 weeks. If the scopes are clean, he keeps those foods. If the scopes are not clean, we yank those foods and start all over. We do this process until we have enough food for John to live on and at least one protein that he is not allergic to (currently there are none).
We need to focus on non-food activities and try to get creative with the fruits and veggies that he can have.
Update: 10/2008
Well it has been 2 years since John was diagnosed with eosinophilic esophagitis and 1.5 years on a feeding tube. He is now 4 years old. Honestly, I can say the feeding tube isn't a big deal to us anymore. It is just a way to feed him and keep him healthy (plus a side benefit is if he gets a regular virus like kids get, he can vomit as much as he wants and I don't have to take him to the hospital for dehydration-I can keep him hooked up to his machine). You have to find the humor/light in some things.
On a sadder note, John has not passed oat and corn. His biopsy revealed more than 50 eosinophils per high powered field which is considered moderate to severe. At this point, we were given a few options; we could take John off all food for a while until perhaps his system matures (this could take years), we could start all over which means limit all food for another 6 weeks and then scope every single food or we could try steroids. We cannot imagine limiting all food again and so we are going to give steroids a try. Although our son is already on enough medication, we now feel that it is something we must try. There are some promising studies going on right now
at CHOP so we are hopeful for their future role in John's disease.
John has the capability and desire to eat but his body just won't let him. We know he is not coming off the feeding tube any time soon. We are just looking to give him some oral satisfaction and to have some normalcy.
John goes to Universal Pre-K in our district and has a nurse ride the bus and attend school with him. I provide him with a safe treat for him to eat every day at snack time with his classmates. When they do a cooking project that doesn't involve his safe ingredients, the nurse takes John out of the class so he is not in any danger. John absolutely loves going to school and riding the bus each day.
Does your child have Eos and severe
food allergies?
You've come to the right place.
The latest (9/17/10):
John was scoped for Dairy in April 2010 and his numbers were borderline. He was re-scoped in August 2010 and Dairy became a pass with just a few eosinophils present. (Springtime may have something to do with a higher
eosinophil count). We are all so excited that Dairy is in the picture. One of our main goals right now is to try getting John to eat on a more regular
basis. After being on a feeding tube for over 3 years and not being able to eat much, it will take time to develop more consistency. He is doing phenomenal though and we are always so proud of him!!
John is still anaphylactic to eggs, tree nuts, peanuts, mustard, onion, beef and lamb. We are going for some allergy testing soon to see where it all stands. Fortunately, most will never know what it feels like to have your child
allergic to the very thing that is supposed to nourish and complete them, much less the possibility of threatening their life. John is in 1st grade,
has an aide at school and on the bus (epi on bus). Middle Country Schools have taken every precaution with our son and for that we are truly grateful.
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Updated: 3/3/10
John is still on swallowed flovent for his EE, along with a double dose 2x day of prilosec, singulair, nasacort, as well as miralax for the constipation issues brought on by formula. His most recent endoscopy (his 10th) was in January 2010. He passed WHEAT. Wow, this is so huge for him and us. I always felt wheat was the one food I would give anything for him to be able to eat. He can now eat crackers and bread, pasta, and obviously so much more. Wheat is everything. And yes, I know there are lots of wheat alternatives out there and some are good, but wheat just makes things so much easier on him.
Now we are going for the big one: DAIRY. No idea how it will go, only the biopsy will tell. Praying for good news in April.
So here are John's safe foods that we know for sure he can eat as long as he is on flovent: corn, oat, rice, chocolate, chicken, and wheat.
