Meet Brian, a four year old living with Eosinophilic Esophagitis. Along with his dad, Matt, mom, Erin, and sister, Addison, he is learning and living with this rare condition.
Please join us as we wade through the confusion of a diagnosis few understand or know about, and work to give Brian a bright future.
For more information regarding this condition, visit http://apfed.org or follow us.
“Education is the most powerful weapon which you can use to change the world.” – Nelson Mandela
Daddy and Addi miss you very much…3 weeks down and hopefully only 5 to go!
LikeLiked by 1 person
Erin, praying that you will stay strong (and I know you will), and prayers and positive thoughts sending Brian’s way. I hope all goes well and you’ll be able to go home with some solutions. You are Super Mom raising a Super Brian, so glad you have family and friends’ support. love you guys!
LikeLiked by 1 person
Love you, too!
LikeLike
If you have the time after things calm down, I’d like to talk. In 1976 I was diagnosed with Eosinophilic Granuloma, which I have been fighting my entire life. I’ve seen it go through name changes, they now classify it as “Histiocytosis”. It seems to involve the same white cell working against your body, from what I read. We have an association if you go to Histio.org they may have info that could be useful if its related. We have a Dr McClain, he is amazing for pediatric patients. If you have any questions, please email me. I will keep you all in my prayers. Tanya
LikeLiked by 1 person
Thank you, Tanya. I would love to speak with you regarding your experiences. They are considering other “Eosinophilic” disorders in addition to the Esophagitis.
LikeLike
Hope more good days are happening and you are getting the guidance you deserve. I have a question if you don’t mind. How old was Brian when he was diagnosed and what were earliest symptoms? Stay strong! Continuing to pray for all of you.
LikeLike
Brian was diagnosed with EoE shortly before his second birthday. We began noticing allergies when we first introduced foods at six months, and the milk allergy was hindsight, because we realized he was not developing properly. When we switched to Elecare at ten months, his development took off. The only reason we were able to consider this diagnosis was because he has an amazing speech therapist who pushed for me to request an endoscopy and colonoscopy. Thank you for your support.
LikeLike