Eosinophilic esophagitis
My 6 year old was just diagnosed with Eosinophilic esophagitis. Unfortunately, I think it has been going on for years but was misdiagnosed over and over and at this point it is pretty serious. Can anyone out there share their experience of treatment and recovery/remission? It has been a long road and very stressful at times. My kid is currently struggling to get baby food down and I'm just feeling so sad and angry that this had to get to this point. Would love some words of wisdom and experience. Thank you so much in advance.
Mar 6, 2019
Parent Replies
Hi - I know what you are going through, our youngest daughter (now 15) was dx when she was 6. Hopefully you are with a team that specializes in EGIDs. We're seen at UCSF by Dr. Wild and her team, and really like them. Our daughter scopes clear on a full diet taking the 'slurry' (pulmicort respules mixed with a thickening agent - we used applesauce instead of the recommended 10+ packets of splenda, though she is now using the flovent inhaler instead but has yet to be scoped on that), but not every child is as lucky. I have TONS more information and resources for you, including invaluable facebook groups (Eosiniphilic Family Support Network is the largest, but there's also a group for Norcal peeps.) Feel free to contact me: emily [at] emilyadesigns.com
I don't have personal experience, but have worked with soem children who have EE. Have you found this resource: https://apfed.org/?
If a feeding tube is suggested, know that for many families, it improves their life, so don't automatically discount the option.
I’m so sorry that you’re going through this. My husband has a similar condition (achalasia) and we think my son might have it as well. We can’t speak to your son’s diagnosis, but I thought I’d share a few things my husband has figured out over the last 20 years. My husband always has an easier time eating food that is hot in temperature and not soupy/runny in texture. He also always has to drink a lot of cold, uncarbonated liquids with every meal (like 32-48ounces). Crunchy foods like potato chips are easier to get down than bread, but again everything requires a lot of cold liquid to push it down. Small, but frequent meals are a must for him.