Meeting date correction!

Please note that the next meeting is NEXT Thursday, January 15th at 6:30pm. It was listed incorrectly in the "Upcoming Events" section of the blog (now corrected there too).

Don't miss out on our very first guest speaker! The talk will be informal followed by a roundtable question and answer session: "Meeting Nutritional Needs on a Restricted Diet", guest Kristen Middleton, RD.

See you there!

support groups/hospital calendars

I looked on MCG Health's Community Calendar and saw a number to call for more information about support groups:  706-721-CARE (2273).

University has a listing of support groups with good information about each (location, cost, goal, etc.), however, each support group looks like it has a tie back to University.  There is a general "contact us" form so I'm going to go ahead and ask about if they would advertise for us. 

Doctor's Hospital has a short list of support groups and easily accessible pages for health conditions.  The pages for specific conditions have links to resources and other organizations.  Oddly enough, nothing for EGID...8).  For contact it looks like the general form is the only way through the website.  

Trinity's website isn't working right now.....

Maybe the thing to do would be to use the 'contact us' forms to get the mailing address for their community event organizers and ask if they would advertise the support group.  I'm thinking that MCG is the best place to advertise, but want to cover all the bases.

Speaker topics - input?

As we discussed briefly at the last CSRA Eos meeting, we can invite "expert" speakers to talk to our group (and other EoE families). The topics covered can vary, depending on what you are interested in hearing. So far, the following have been suggested/mentioned as potential topics:

Dietary issues - more info regarding food elimination, etc. from our Pediatric dietician

Alternate flours - how to use them successfully in recipes

I am happy to seek out speakers, but I want to cover topics that are interesting/helpful to you. For example, what specific questions would you have for our dietician speaker? (ways to inrease calories in a restricted diet? new ideas for 'fun' food substitutions?) Or, would you rather hear more about medications? how they work or why certain meds are chosen? Just think about what issues/concerns your family faces and let me know!

What topics are you interested in?

More about medications - specifically Anti-IL-5 (mepolizumab)

We talked briefly about a something-a-mab drug at the meeting tonight and it sounded interesting. I found some Wikipedia links describing cytokines and IL-5 - amazing. They're worth a read...and then another...and another. There's also a link to a report discussing the use of a medication specifically to treat EE. At a conference last summer the anti-IL-5 medication was mentioned a couple of times but it was stressed that the process to make it to production, cleared by the FDA, and then matched to the right patients was a loooong process.

Katy - help?

The links:

Cytokine Interleukin Interleukin-5


Anti-IL-5 (mepolizumab) therapy for eosinophilic esophagitis

Auteur(s) / Author(s)

STEIN Miguel L. ⁽¹⁾ ; COLLINS Margaret H. ⁽²⁾ ; VILLANUEVA Joyce M. ⁽³⁾ ; KUSHNER Jonathan P. ⁽⁴⁾ ; PUTNAM Philip E. ⁽⁵⁾ ; BUCKMEIER Bridget K. ⁽¹⁾ ; FILIPOVICH Alexandra H. ⁽³⁾ ; ASSA'AD Amal H. ⁽¹⁾ ; ROTHENBERG Marc E. ⁽¹⁾ ;

Affiliation(s) du ou des auteurs / Author(s) Affiliation(s)

⁽¹⁾ Division of Allergy and Immunology, Cincinnati Children's Hospital Medical Center, ETATS-UNIS
⁽²⁾ Division of Pathology and Laboratory Medicine, Cincinnati Children's Hospital Medical Center, ETATS-UNIS
⁽³⁾ Division of Hematology /Oncology, Cincinnati Children's Hospital Medical Center, ETATS-UNIS
⁽⁴⁾ Digestive Diseases, University of Cincinnati College of Medicine, ETATS-UNIS
⁽⁵⁾ Division of Gastroenterology, Hepatology and Nutrition, Cincinnati Children's Hospital Medical Center, ETATS-UNIS

What's your medication?

By the time I went in for a diagnosis we already strongly suspected that I had EE. Reading up about the condition after Liam was diagnosed brought up several things that seemed to point that direction for me: dysphagia, genetics, and probably some allergies.

I looked for as many scientific-like articles I could find that specifically mentioned the symptoms I had - didn't want to look like a hypochondriac. At the first appointment, with printed pages in hand, I brought up the dysphagia and suspicion of eosinophilic esophagitis. Being in the military, I expected a technicolor response from the PA peering over the top of his glasses. He didn't disappoint. So much for trying not to look like the hypochondriac. At least I didn't walk in and ask for drugs...

I was able to prove my case and made the cut to be scheduled for an upper GI (barium swallow) to look for structural problems and also get some blood work done to look for other stomach/intestinal problems...."It could be feline diabetes...." (another story)

40+ ounces of chalky "vanilla" fun later and a few pricks (both with normal results) I got to meet with an ENT. He was ready to prescribe flonase without further tests. Since we had already been through everything with Liam and been told that the only way to really diagnose was with an endoscopy, I opted for it. I was also still hoping like a lottery addict that I would win with the slim odds and not have it.

After the endoscopy and a confirmed diagnosis of EE, I was prescribed Flonase (fluticasone propionate - 50mcg) to be taken orally twice a day; two sprays each time. I've also found out that I'm allergic to milk, peanuts, and "clams" as well as every possible grass and tree. Since the chart didn't say "mussels" I'm still having ale and mussels mostly guilt free.... Since I had the EE diagnosis, food elimination with fluticasone *should* effectively treat it. We'll see at the next endoscopy.

So...what's the difference between flonase and flovent? Why prescribe one over the other? Should I be concerned about swallowing the "for intranasal use only" medicine? What about combining cromolyn with the anti-inflammatory?

What medications has everyone else been prescribed?

Halloween Non-Food Festival

Just 2 weeks until Halloween! Hopefully, you have all received invitations to the Halloween Non-Food Festival (with Trick-or-Treating and fun games/activities!). The event will take place on Thurs. Oct 30th 3-5:30pm at the Health Science Building at MCG (map available on the blog). I hope you will all join us for the fun - those who attended last year had a great time!
So that we can plan appropriately, PLEASE be sure to RSVP, either to the phone number on the invitation or to me (via the blog, email, phone). All children with significant dietary restrictions are welcome, so feel free to invite any other children you may know who face diet restrictions (due to food allergy, eos, diabetes, etc). Of course, siblings are invited too!
Besides being fun, this event is a good way to increase community awareness of EoE, so we may have some local media coverage too.

Hope to see you at the Halloween event!

Katy

Formula anyone??

Thanks to our reps and generous families, I have a good supply of some types of elemental formula right now. Anyone need some? In descending order of amount, I have Chocolate Neocate Jr, Splash (mostly orange boxes, a few of other flavors), Neocate Infant, tropical Neocate Jr (powder), unflavored Elecare.

I try to help decrease your costs for formula so please let me know if you need some - I can bring to the meeting tomorrow evening or we can make other arrangements to get it to you. Respond here or to me directly via email/phone.

Katy