Back to Food Trials & Hoping To Blenderize Food

My son has stopped taking swallowed Flovent and is back to food trials.  He is currently trialing beef, which he has to have every day for 3 months before having another endoscopy with biopsies to determine if it is safe for him to eat, or if he has eosinophilic infiltration in his esophagus.  So far, he doesn't have any definitive symptoms that would indicate he is reacting, so I'm crossing my fingers.  He still has 2 more months to go before his scope.

The problem we've been experiencing is with his weight.  He lost a lot of weight when he stopped getting his enteral formula (an elemental liquid medical food that goes though his feeding tube) but his intake has improved and he is growing.  He looks VERY skinny now, and his pants will literally fall off without drawstrings or belts to hold them up, but his current growth spurt may be playing a part.  It's difficult not to be concerned when I see how skinny he has become, but I have to try not to overreact.  I'm trying to keep tabs on it to make sure he isn't dropping any more weight.

We would love to have him discontinue his enteral formula and get rid of his feeding tube, but thus far we haven't been able to get enough nutrients in him to do so.  He still supplements what he is eating with formula and if he isn't feeling well, that's all he will take.  So, I have been trying to figure out how to get enough nutrients and calories into him with the safe foods that he has.  His nutritionist recommended making shakes/smoothies with a safe protein powder (understanding that he can't have soy, dairy, wheat, etc.).  I have found a very good brown rice protein powder which can be used to make protein packed shakes.  He can have rice milk, coconut yogurt, berries, peaches, pineapple, pears, grapes, etc.  However, he can't have bananas.  He failed (reacted to) a combination of bananas and oats and will need to retrial bananas by themselves in the near future to determine if they are safe or not.  I suspect it was the oats, but there is no way to be sure without trialing them separately.  He also can't have melons or citrus fruits, which he definitely failed (they caused an eosinophilic reaction in his esophagus).

Since he does not like most vegetables, I would really like to put them into a smoothie.  However, my blender can't properly handle raw vegetables.  It doesn't make them smooth (it leaves chunks) so it isn't sufficient and you really can't make a good smoothie with cooked fruits and vegetables.  I'm trying to find a blender that CAN handle raw fruits and vegetables, so that I can make him smoothies that will provide him with the natural nutrients that he is otherwise lacking.

I am trying to find out if there are any potential medically-related tax deductions or if medical flex spending accounts can be used for the better blenders (with proper documentation and letters of medical need or Rxs from physicians).  There is one in particular, the Vitamix Blender, that I think would be perfect.  I have seen them demonstrated locally and I could make so many things that he could eat or drink, which would greatly benefit him.  If is not tax deductible or eligible for flex spending reimbursement, I won't be able to afford it.

If I do find that it's possible to purchase one, I will gladly post recipes (and videos if I can figure out how) that are free of the most common allergens, as well as others that are common triggers for Eosinophilic Esophagitis.  I truly feel that it would be beneficial to many parents of kids with Eosinophilic Gastrointestinal Disorders as well as adults with EoE / EGID.  It may greatly reduce the stress of trying to provide proper nutrition on a severely limited diet.

In the meantime, I will continue to struggle with getting enough nutrients and calories into my teenager who desperately needs them.

Holidays with Food Allergies and Eosinophilic Esophagitis

Thanksgiving has passed and the winter holidays are quickly approaching.  Many parents who are new to food allergies and restricted diets are undoubtedly panicking, not sure what their kids will be able to eat, if anything at all, and hoping to make the holidays special without focusing on food.  Thankfully, we now have plenty of information at our fingertips.  There are some really good suggestions for dealing with the holidays and any special event, regardless of your dietary needs.  


I just came across a wonderful PDF booklet with allergy-friendly suggestions for celebrating Christmas.  It was put together by Kids With Food Allergies:  http://www.kidswithfoodallergies.org/KFA-Celebrates-Christmas.pdf  Take a look at the recommendations for a food-free holiday as well as the recipes for candy canes, rice nog and gingerbread cookies, to see if they might be safe for your family, or if you can modify them to make them safe.  


There is also a PDF for celebrating Chanukkah:  http://www.kidswithfoodallergies.org/KFA-Celebrates-Chanukah.pdf, which includes two latke recipes (white potato and sweet potato).


They have various pamphlets with ideas for dealing with the different holidays, as well as an article with some tips from Psychologist John F. Taylor, Ph.D., author of the book, "Why Can't I Eat That!  Helping Kids Obey Medical Diets." 
http://www.kidswithfoodallergies.org/resourcespre.php?id=120&title=food_allergy_restrictions_during_the_holidays.  


Just before Thanksgiving, they also provided the following allergy-friendly recipes:


Just-Sugar Lollipops:  http://www.kidswithfoodallergies.org/allergy_free_lollipop_recipe.php


Homemade Candy Canes:  http://www.kidswithfoodallergies.org/candy_cane_recipe.php


Sugar Sculptures:  http://www.kidswithfoodallergies.org/allergy-free-sugar-sculpture-Christmas-tree.php


Sugar Shapes:  http://www.kidswithfoodallergies.org/allergy-free-sugar-shapes.php


Hokey Pokey or Honeycomb:  http://www.kidswithfoodallergies.org/allergy-free-sugar-honeycomb.php
  


You can find lots of wonderful allergy-friendly recipes at: 

Kids With Food Allergies:  (many require membership, which is quite worthwhile, but some are free).

FAAN (Food Allergy and Anaphylaxis Network) also has plenty of recipes on their site

LivingWithout Magazine (lots of allergy-friendly and gluten-free recipes in their magazine and on their site)


Cybele Pascal's website and cookbooks:  http://www.cybelepascal.com/

APFED:  Recipes and suggestions and their "Extreme Cooking for Exceptional Diets" cookbook 


I also have some of my personal cookbook recommendations in the EosMom Store.

There are so many more resources; too many to list, but I think this is a good start and hope it will be helpful.  


As for my own family, thanks to swallowed Flovent, my son has been able to eat holiday meals without restriction for the first time since he was 6 years old.   However, some of the things that you would assume would be a hit were foreign to him, and were not automatically welcomed with an open mouth.  He's getting used to them, though.  


My daughter still has to avoid dairy, and I found a really good french toast recipe, which we made on Thanksgiving morning and will again on Christmas.  The recipe is found on the carton of So Delicious Coconut Nog, or you can also find it here, on the manufacturer's website.  It calls for gluten-free bread (use whatever bread is safe for you) and uses bananas in lieu of eggs.  Since we didn't have to avoid eggs or glutens this Thanksgiving, I just used my own recipe and substituted the coconut nog for milk.  It was absolutely AMAZING!!!  After the holidays, my son will discontinue the Flovent and will re-trial bananas to see if they are safe.  If they aren't, I will have to see if I can find another substitution so that I can use this recipe in the future.   


Whichever holiday you are celebrating, I wish everyone a happy, healthy, and peaceful holiday season and all of the best in the coming year. 

True Life | I'm Allergic To Everything

True Life | I'm Allergic To Everything: Raelyn And Zeke are two young people who suffer uncertainty every time they take a bite of food. Can they get their allergic reactions under control so they might find relief in their everyday lives?

Zeke is from Texas and has Eosinophilic Esophagitis. He and his family have also co-founded a charity called "Angels For Eosinophilic Research Alliance" http://www.angelsforeos.org

True Life - MTV Shows

Eosinophilic Esophagitis: Finally seeing the light at the end of the tunnel

My son is now 13 years old.  He is officially a teenager, although I still can’t understand how that happened so soon!  It feels like he just learned how to speak, read, write, ride a bike, and just got through all of the childhood milestones that we, as parents, eagerly look forward to & document.  Among those milestones is a child being able to eat on his own.  This is one that we have struggled with and he is still working on to some extent.  However, it is not because of a developmental disability.  It is because of a gastrointestinal disability. 

My son has had a feeding tube for the past 6 ½ years and has been consistently trialing foods for over 6 years.  Most have been successful, and he has been fortunate enough to keep the majority of the foods he has trialed.  We have been able to pinpoint most, if not all of the foods that trigger his Eosinophilic Esophagitis.  We still have a handful of foods left to trial, but for the summer, we decided to have him trial a medication (swallowed Flovent) and eat everything that would otherwise make him sick.            

While the long-term goal is to have him control the disease with a safe diet, he also needs to know what options he will have going forward into adulthood.  As an adult, he will likely be going on vacations, out to lunch with friends or co-workers and, dare I say it…(gulp) DATES!  He needs to know if there is a medication that will work and, if so, how well it works, what the side effects might be, and so on.  

Flovent (fluticasone) is one of the medications that are used as off-label treatments for Eosinophilic Esophagitis (EoE).  It is an inhaled steroid medication that is commonly used for asthma, but for the purposes of treating EoE, it is swallowed instead of inhaled.  He takes 2 puffs in his mouth (one-at-a-time), swallows, and then waits 30 minutes before eating or drinking.  He does this once in the morning when he wakes up and once at night before bed.  So far, so good!

He has been taking the medication and eating a normal diet since the end of May.  He was able to enjoy a week at Boy Scout Camp without worrying about getting enteral feedings at the nurse’s cabin or having to wait while I warmed up the safe foods that I brought with us.  He is able to enjoy “Pizza Wednesday” with everyone else at school (he is going a few days a week during the summer).  He was able to eat out during field trips, too.  We have been exposing him to a variety of different types of foods.  He is still getting used to the flavors and textures, but he’s adapting quickly and enjoying the ability to eat all of the things he has been avoiding for the past 6 ½ years.

Not all medications work the same for everyone, and thankfully there are now a few options.  Some people find that Flovent works well, but for others it doesn’t work at all or only works for a short time and then becomes less effective.  Budesonide is another medication that is being used to treat some patients.  It is mixed with Splenda to form a slurry, which is then swallowed.  Both Budesonide and Flovent are steroid medications.  Budesonide is also known as Pulmicort (for asthma) or Rhinocort (for nasal allergies). 

There are clinical studies being done with another medication, an anti-IL5 medication that is delivered via IV infusions.  That has reportedly been used rather successfully in many patients with eosinophilic gastrointestinal disorders.  Thankfully, it doesn’t seem that my son will need that particular medication, but it is good to know that one day it may be an option for patients who do need it.

So far, the major downside of this whole process has been the length of time it has taken to determine the trigger foods, the method of delivering the safe medical food (the formula, which tastes so bad that he couldn’t drink it and needed a feeding tube) and the invasive nature of the procedures needed to confirm whether or not he is reacting to a particular food.  Having an endoscopy with biopsies is currently the only way to be sure whether or not the eosinophils have infiltrated the esophagus and what they are doing in there (whether or not they have degranulated and caused damage, etc).

Of course, there’s also the affect it has had on him socially and emotionally, as he can’t normally eat what his friends are eating and that has limited his ability to socialize during lunch, parties, and so on.  When he had fewer safe food options, he couldn’t handle being near others who were eating.  He also understandably feels a bit self-conscious about having a g-tube in his stomach, although it has been much better than having an NG tube in that it is not easily visible. 

I have always taught my kids that everyone has their individual struggles in life; some more than others, and some are more obvious than others, but everyone has them.  We can allow those struggles to limit or even incapacitate us, or we can choose to overcome them as much as possible and not let them define us.    I hope they do remember that through their lives, because our struggles will vary and change throughout our lifetime.     

My hope for those with eosinophilic esophagitis and other eosinophilic gastrointestinal disorders is that, one day, there will be a safe and effective, yet less-invasive way of diagnosing the disorders and then determining if a reaction is taking place with food elimination and food trials, medications, etc.  While I am obviously hoping for a cure, as is EVERYONE who is dealing with it personally or in a loved one, I am also hoping for cures to other autoimmune disorders like celiac, diabetes, vitiligo, alopecia, Hashimoto's disease (thyroid) and so on.  I would also love to see a cure for asthma.  Maybe one day, enough will be known about all of them to prevent the body from having the inappropriate immune reactions that occur in these disorders.  I would love to see that in my lifetime. 

As for Eosinophilic Esophagitis specifically, I am hoping that what my son has gone through will no longer be necessary in the not-so-distant future.  I hope that there will soon be methods to more easily diagnose, determine the particular allergens responsible for each person, and treat the disease.  I am very thankful that there is the knowledge and understanding to treat it at all, because it has helped him to become very healthy as a result, but he has gone through a whole lot to be healthy.  At least he will have the knowledge to make informed decisions about his own care as an adult.  

Just as when the mother birds kick their babies out of the nest, they hope those babies will fly, I hope and pray that my son will make good decisions as an adult and will be able to remain healthy throughout his life so that he will not just simply able to fly, but SOAR and accomplish whatever he attempts to do.  

Special Education Laws and Resources: IEPs, 504 Plans, Classroom Accommodations for ADHD Children | Information on Attention Deficit Symptoms, Treatment, Diagnosis, Parenting, and More - ADDitude

Special Education Laws and Resources: IEPs, 504 Plans, Classroom Accommodations for ADHD Children | Information on Attention Deficit Symptoms, Treatment, Diagnosis, Parenting, and More - ADDitude

Discover the eight most common problems parents of ADHD and LD children have with school IEPs, 504 plans, and accommodations -- and how to solve them -- with this expert special education advice.

http://www.additudemag.com/adhd/article/8417.html

I know it's the middle of summer, but as the time for school approaches, we should make sure we have the proper accommodations in place. If not, the school should be contacted to set up a child study team meeting. That meeting can take place as soon as school begins, but it is also possible to have them over the summer if needed.

New name for the NJ/PA Eosinophilic Website

NJPAEos.org, which I originally created several years ago to help those in the NJ/PA Eosinophilic Support Group, is now called "NJ/PA Eosinophilic Information" (with the same URL address).  It still has the same information, including news and resources, but I am hoping to expand on that information in the near future. 

Please feel free to visit the site.  Hopefully the information provided will be helpful. 

Eosinophilic esophagitis: Updated consensus recommendations for children and adults

"Eosinophilic Esophagitis: Updated consensus recommendations for children and adults"
(from The Journal of Allergy and Clinical Immunology Volume 128, Issue 1 , Pages 3-20.e6, July 2011)

http://www.jacionline.org/article/S0091-6749%2811%2900373-3/fulltext

New consensus recommendations for the diagnosis and management of EoE! This is an important article to read if you are dealing with Eosinophilic Esophagitis!