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

Apfed T-shirts and cookbook order

Below are the options and pricing for shirts, cookbooks, and a few other things from APFED. The shipping is $6. As far as I can tell that is a flat fee. We can divide this between each family that wants to order.  Please let me know what you would like to order and I will add shipping once I have everyone's order.  
I also looked at the DUM-DUMS website and we can order single flavors from them. I will be doing this as Liam only likes a couple of flavors and we end up with a lot of dum-dums nobody wants from the bag you can buy at the store. Their shipping is determined by weight and I would be glad to make one order and split the shipping costs here too. If you are interested in this please go to their website and let me know what you would like.
We hope to see you all tomorrow evening at the park! Remember, if it is raining we will meet inside the library.

Extreme Cooking for Exceptional Diets $14
Apfed Hat $15
Youth APFED T-shirt "Got Eos?" $15
(purple- xs, sm, med, lg: blue-sm, med: royal blue-xl)
Adult APFED T-shirt "Got Eos?"
(royal blue- sm, lg, xl)
Youth Phonetic T-shirt $15
(black- xs, sm,med, lg)
Adult Phonetic T-shirt $15
(black- sm, med, lg, xl)
Phonetic Sweatshirt $22
(youth- lg, adult- sm, med, lg, xl)
2008 Adult and Teen EE conference program ($14.00)
Includes copies of speaker slides.
2008 Eos Connection San Diego Program $29
Includes program with speaker hand-outs, conference bag and conference tshirt.

Halloween planning

Yes, already. (I know it is still August, but you know what they say: the early bird gets the best non-food-centered party!)

We have started thinking about Halloween and we plan to repeat our Non-Food Trick-or-Treat and Halloween Party as we hosted it last year at the School of Nursing at MCG. Just as the students shared their talents last year to make the event lots of fun for the kids, they are already chomping at the bit to do it again this October! So, you will all be getting invitations/announcements in the mail in several weeks about the event.

In the meantime - I have a question for you all and the more feedback, the better! Halloween is on a Friday this year. That may mean that many students are not on campus late in the day (we plan to have the event after school, as we did last year). Also, there may be parties/other events that evening for you guys.
So, the question: Would you prefer to have the Halloween event and Trick-or-Treat on Thursday 10/30 or Friday 10/31?

Thanks in advance!!
Katy

Looks like rain....

Plan B for a rainy day:

We will meet inside the library in one of the meeting rooms downstairs.  I do not know the room number but you can ask at the reference desk downstairs and they will be able to direct you.  We will have to leave at 7:45 for the library to prepare for closing.  Of course, if the weather turns out nice and some want to stay longer we can go to the playground.

We hope to see you all there!

Please call or email me if you have any questions.

Melinda Garrett

706-868-1874