I realize it’s been some time since I have posted. As many of you know I also am responsible for the annual Food Allergy Bloggers Conference, #FABlogCon; and have been busy planning this year’s conference. It will be held in Denver Colorado November 3-5. This conference is for anyone managing food allergies or celiac disease, with two tracks of lectures- one on blogger specific topics, and one disease management. I hosted a teleconference tonight for #FABlogCon attendees, with kalèo Pharmaceuticals, who wanted to share exciting news with us to pass along to our readers.
As you know, Auvi-Q came back to market on Valentine’s Day, and has been very passionate about making sure the device can get into the hands of the patients who want it. As part of this they have introduced their Auvi-Q AffordAbility program which allows patients to download a form, fill it out, bring it to your Dr, then have it faxed to them, once received and shipping address and delivery is verified (Auvi-Q will call you), you can get the new devices shipped to your door in 48 hours!
Here is the BIG news!!~ As we enter Summer vacation, many of us are already thinking about how we need to schedule Dr appointments to get our Back-to-School epinephrine refills ready for the fall. Auvi-Q is pleased to announce that you can get your forms filled out and submitted now- and set your delivery dates for just before your Back to School dates! For example, I can submit my forms now, and get delivery for September 1st, just before a September 5th return date. This will ensure a long expiration date on devices being kept at school.
The Patient AffordAbility program will allow families with no insurance, or high deductibles, or whose insurance won’t cover Auvi-Qs to still get them- for FREE. For those that insurance does not cover AUVI-Q, you can get it for $0 out-of-pocket though their Direct Delivery program. It does not matter what your income level is. Then, they have another program, completely separate, that provides AUVI-Q for $0 for people without government or commercial insurance, as long as they have an income of $100k or below. SO even if you get letters from you insurance companies saying that they will ONLY cover generic Epi-pens, you can STILL qualify to receive Auvi-Qs. I am proud to share this news with my readers, and hope it helps make sure that the patients who need this life-saving medication can get access to it.
Managing food allergies and Eosinophilic food reactions gets tricky. My youngest son had been stable for the past two years. He was able to have many foods we lost when he needed to get his feeding tube placed. At that time, the only foods left were: sweet potato, pineapple, tapioca, chocolate, cranberries, and carrots. We eventually were able to add in many more foods to his diet: chicken, turkey, salmon, apple, broccoli, rice, corn, potato, blueberries, strawberries, orange, lemon, cranberries, raspberries, avocado, peaches, banana, watermelon, mango.
Then, this past August we scheduled an endoscopy to gauge where his disease was. He was showing no symptoms, but had been a year or more since his last endoscopy. The last scope looked decent with a slight increase in lower esophagus thought to be due to acid reflux; which was why a daily dose of prevacid was added to his daily medicine regime. He needed updated allergy testing prior to starting school, and I knew he had been getting exposed outside of our home to foods he was allergic to on previous allergy tests. The results were disheartening.
Eosinophilic esophagitis is a chronic autoimmune disease, where eosinophils (a type of white blood cell) gather and attack food in the esophagus. This buildup causes damage to the esophagus, inflammation, stricture, white pustules are seen, and linear furrowing. Damaged esophageal tissue can lead to difficulty swallowing, choking, coughing, pain when eating, or food impaction when food gets caught in the esophagus. To be diagnosed endoscopies are performed to visually view esophagus and to take biopsies. Healthy people should not have eosinophils in their esophagus. Greater than 15 eosinophils leads to a diagnosis of Eosinophilic Esophagitis (EoE).
The biopsy results were taken from upper, mid and lower esophagus. They showed greater than 15-20 eosinophils in the upper and mid biopsy results, and greater than 50-60 in his lower esophagus. This in spite of restricted diet, daily swallowed budesonide and daily prevacid to help lower esophagus. So now we knew he was having an EoE flare up we needed to determine what foods might be triggering the response. Thus began the allergy testing.
He has had 3 appointments for allergy testing in the past 2 months. His results showed new allergic reactions to: chicken, turkey, rice, apple, cherry, lemon, orange, chocolate, cucumber, lettuce, onion, tomato, cranberry. He also is avoiding: beef, soy, egg, wheat, peanut, tree nuts, shellfish, fish (except salmon), egg, dairy, all beans, peas, lentils, legumes, rye, buckwheat, barley, millet, oat, sunflower seed, flax seed, sesame seed, cottonseed,
He is tolerating: strawberries, banana, blueberries, black and raspberries, peach, watermelon, pineapple, mango, cabbage, garlic, salmon, pork, coconut, corn, broccoli, carrot, celery, mustard, grapes, canola oil, olive.
We have a follow scope scheduled this week and hope to see improvement after the strict dietary modifications we have enforced. My son keeps talking about what foods he wants to add back first. His short list is chocolate, chicken and rice. Then apple and lemon, cherry and cucumber. (apple juice and sauce, lemonade, shirley temples, pickles).
*Update: We have safely added rice back, and are now trialing chocolate, after a successful scope done in January 2017.