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The Latest in Our EoE World

19 Jul

Button Boy had his quarterly EGD at the end of June.  This time we only had to travel to Birmingham to have it performed instead of Cincinnati, OH.  It was definitely easier on us!!  Button Boy still had anxiety about it, but I mean, really, who doesn’t get anxious when you are having any procedure done.  The major problem was that we could not find Spike the Strong and Courageous Rhino.  Spike was a gift from the Child Life Specialist at Children’s in Birmingham before one of Button Boy’s procedures…he was quite anxious, didn’t want to take his Versed and was crying….the Child Life Specialist came in with Spike and told Button Boy that Spike had enough courage and strength for both of them…and Spike has been in every procedure and doctor’s appointment since….until this one.  We had a lot of tears over not being able to locate Spike, but luckily we were able to find Jungle, the steadfast and diligent monkey.  Jungle was happy to pinch hit for Spike!!  Thank goodness!!!

The pictures from this EGD are very promising.  They show absolutely no furrows and no thickening!!!  We should have the biopsy results back any day — we are very hopeful that they still show ZERO Eosiniphils…if that is the case, we will add back egg to Button Boy’s diet.  That means he can have waffles, pancakes, scrambled eggs, cake, cupcakes, brownies, cheesecake….do I need to go on????  He has missed so many foods over the last year and three months, but I wouldn’t change a thing if it means we have some answers as to what may be causing his eating/feeding issues….that has been a lifelong struggle for him.

Baby steps are what we are willing to take if we have to….we do whatever we have to while making sure Button Boy is getting the food he can have and the nutrition he needs!!!!!

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National Eosinophil Awareness Week

16 May

Eosinophillic Disorders are rare white blood cell disorders where the body misinterprets food as if it were a parasite and sends eosinophils, a type of white blood cell, to attack parts of the body.

Button Boy suffers from Eosinophillic Esophagitis, the most common of these rare diseases.  When he eats certain foods his body sends eosinophils to his esophagus where they attack and damage the tissue.  This disease causes sever chest and tummy pain, vomiting, gagging and the desire not to eat because of the irritation in his esophagus.

There is no cure for Eosinophilic disorders and no good treatment.  The current treatments are steroids and/or the elimination of high allergen foods.  Right now, Button Boy is on an inhaled steroid (which he swallows to coat the esophagus) and a partial elimination diet.  We have seen an improvement in his eating and return to Birmingham in June for another endoscope that will hopefully tell us that he can continue to eat wheat, and we can add back egg into his diet.

At this time, the National Institutes of Health designates $0 in annual funding for research for Eos Disorders.  Fortunately, Congressman Spencer Bachus has stepped forward and expressed his concern to the director of the NIH.  However, we need much more congressional support to fund the research that is needed to advance the management of the disease and ultimately find a cure.

What you can do for Eosinophil Awareness Week:

Sunday, May 15:  Tell 10 friends about Button Boy….send out emails….post on FaceBook.  Feel free to link to this post.

Monday, May 16:  (Button Boy’s 8th birthday!) Wear Hot Pink or Purple (the color of eosinophils in biopsy slides)

Tuesday, May 17:  Hand out Dum-Dums to friends and co-workers.  Many kids who have Eos disorders cannot eat anything with food proteins.  However, Dum-Dums suckers are allergen free candy!

Wednesday, May 18:  Send emails to your Congressmen reminding them that this is National Eosinophil Awareness Week.  Also, send a thank you to Congressman Spencer Bachus, thanking him for all that he has done in showing his support research funding.

Thursday, May 19:  Pray for Button Boy and other children & adults like him that are suffering with this disease.

Friday, May 20:  “Eat Like an Eos Kid for a Day Challenge”  We realize it is impossible for us to eat like many of the Eos kids have to eat, since a lot of them are on elemental diets (usually fed through a G-tube).  Therefore, we are asking you to give thanks for everything you put in your mouth this day.  think about every bite, every drink, and every medication.  Remember that everything you come in contact with could be a potential trigger and danger for Button Boy.

Button Boy with his NG tubeButton Boy at 6 months old in Children’s Hospital in Birmingham, AL.

Button Boy at 7 1/2 years old.  G-tube is gone, and he is on an elimination diet that excludes Egg, Nuts, Fish, and Cinnamon.  His next EGD is on June 21.

You Said WHAT?!

1 Apr

We have been on the EoE (Eosiniphillic Esophagitis) road since 2008.  It is very hard to believe that we have known about this disease’s existence for that long.  It really does seem like we only learned about it last year when Button Boy had to begin the elimination diet to attempt to control the effects of EoE.

It has been one year today since we took most food out of Button Boy’s diet. On April 1, 2010, we began eliminating Soy, Nuts, Egg, Wheat, Dairy, Fish and Cinnamon.  The fish and cinnamon were the only two high allergen foods that he reacted to, and the reaction wasn’t even on the “prick” test — it was on the patch test.  Anyway, we began eliminating food last year.

Skip to March 21, 2011. Button Boy has his third endoscope at Cincinnati Children’s Hospital performed by Dr. James Franciosi (who I believe is a little scared of how close my family is!).  The initial pictures taken during the procedure looked promising.  They, however, did not look as clear as they did in December 2010; therefore, Dr. Franciosi was guarded in his plan for Button Boy.  My mom did “put up her dooks” to threaten Dr. Franciosi with bodily harm if he didn’t add Wheat back to my baby boy’s diet!!!  The look on Dr. Franciosi’s face was PRICELESS!!!  Like I said — scared of how close my family is!  Dr. Franciosi’s recommendation was to go ahead and add back Wheat and to remain on the same *lower* dosage of Flovent until we got the results from the biopsies.

Monday we got the call.  The call about the biopsies.  I had prepared myself for what we considered the worst — the eosiniphills were back and elevated above 24 — and Button Boy would have to go back on the higher dose of FloVent, which would lead me to probably have a nervous breakdown in the next month or so, because he had some side effects from the higher dose that he didn’t have with the lower dose.  The call did not end that way, though!

He has ZERO EOSINIPHILLS AGAIN!!!!  I almost cried!!!!  The lower dose is working, but there is some thickening in his esophagus with some furrowing.  Dr. Franciosi is not as concerned with it and we are still adding Wheat back to Button Boy’s diet.

We have transferred our file back to Children’s Hospital Birmingham since we are finished with the clinical trial and are controlling the EoE with the FloVent.  Button Boy will have to have another endoscope in Birmingham this summer to see how adding back Wheat effects the EoE….but, HEY!  it isn’t driving to Cincinnati!

Y’all make sure and do the HAPPY DANCE with us!  and send us any recipes that include wheat without Eggs, Nuts, Fish, and Cinnamon!!!!  The next high allergen food we will add back will be eggs, that way Button Boy can enjoy some Krispy Kreme Doughnuts again!!!!

In the Beginning…

22 Feb

EmmyJMommy

There is always a beginning, a middle and an end….always.  Whether in life, in a relationship or in a blog.  No, I am not leaving my blog.  I am not posting as much as I did at one time, but I am still around to give my takes on days, weeks, and even months and years in my family’s life.

Today I got to thinking about the beginning of this blog.  There was no rhyme or reason.  I just would write things that were on my mind or things that were going on.  Then I got on a cooking kick.  Trying new recipes and posting the end results…even getting together with a group of bloggers all trying the same Barefoot Contessa recipe in the same week.  A lot of those were very successful, but I am finding that right now, I need quick and easy…and Barefoot Contessa is not always quick and easy!

So, now basketball season for Button Boy is almost over…gymnastics is in full swing for Girly Girl…baseball season for the Montgomery Biscuits and Atlanta Braves will be here before you know it….along with the 100 degree dog days of summer.  Man, life just keeps on going!

We long to get home to the North Carolina mountains.  To show the kids Mount Mitchell and Grandfather Mountain, but everytime we get to Shelby, I don’t want to get in the car for another day of driving or riding…but we may have to next time.

We long to get to Atlanta to visit my Uncle Johnny and Aunt Gail.  We always have a wonderful time with them…and Button Boy loves to get into the woodshop at Uncle Johnny’s house to build stuff….last time it was a wooden boat!

Button Boy and I will travel to Cincinnati again in March for his next EGD at Children’s Hospital.  He has been on the lower dose of Flovent since December and hopefully these biopsies will show the same improvement as the last ones and we can begin to slowly add back some of the restricted food he has been off of….you know, Wheat, Egg, Nuts, Fish and Cinnamon.

Girly Girl is an amazingly bright child.  She is 10 years old and in the 4th grade, but she is learning things that I didn’t learn until I was in high school.  She loves school, loves her teacher (as she has every year at CCCA), loves her friends, and loves learning.  It is amazing to hear her recite what she has learned.  We pray that her enthusiasm continues over the next few years when school get more tough.

Button Boy enjoys school, but doesn’t want anyone to know it!  He adores his classmates, loves his teacher, and really loves reading!  He constantly asks if he can go to Books A Million and buy a book or two….and most of the time we allow him to, but now he is running out of room of places to put them.  Guess we’ll have to find a new bookshelf for his room!

I hope that the next few months sees our family doing a lot of activities together and taking loads of pictures and video to share with our friends and family who read this to keep up with us!

Keep checkin’ in…you never know what you’ll find!

LOOK, What’s for Dinner!

7 Jan

LET IT SNOW!!!

18 Dec

We were just in Cincinnati, OH, for another round of testing for Button Boy at Cincinnati Children’s Hospital.  While we were there they had a snow the likes that we had never experienced!  The white powder was just that…..powder!  It was so powdery that it would not make into snowballs!  They just fell apart!

We loved getting to play in the snow!  We stayed in Covington, KY, and were right on the river across from Cincinnati.  Cincinnati covered in snow was just beautiful!!

We had requested a meeting with Dr. Mark Rothenberg who is the lead researcher on the EoE Flovent Trial that Button Boy has been on the last three months.  Dr. Rothenberg was a wealth of information and we were happy to get to meet him and have him meet Button Boy.  We felt strongly about him putting a face with Button Boy’s file. 

Button Boy’s surgery was on Monday afternoon.  He was apprehensive and worried, as usual.  He had Spike the rhino (he got him before another surgery at Children’s Birmingham), who is Strong and Courageous, to take with him into the operating room, but he decided that since Spike was from CHS-Birminham that he needed a special stuffed friend from Cincinnati Children’s.  We took him down to the gift store and he found Cobbler the kitty and Little the hamster (with a Santa hat) to take with Spike.  He was happy with his new friends!  Once he got his “joy juice” (Versed) he relaxed tremendously.

Dr. Saeed, Dr. Franciosi, Bridget (she is our contact in the clinical trial), and Angie all came to see us.  It was such a blessing to be able to hug Dr. Saeed and tell him how much we miss him!  He has been such a great doctor, and we are thrilled to be able to keep in touch with him.  We also let Dr. Franciosi and Bridget know that they have been “assimilated” into our family….they are taking care of my baby, and therefore are a part of our family!

After finishing the procedure, Dr.Franciosi met us in a conference room to discuss what he saw.  He was very pleased to tell us that Button Boy’s esophagus looked better….much better!  He was very careful to tell us that just because it looks better does not mean that the biopsies would reflect that.

The rest of our stay was pretty uneventful…the kiddos were tired of being cooped up in the hotel, but it was 12 degrees outside, and no one wanted to go out in that!

We spent Tuesday night in Nashville, which is where one of my college roommates lives with her dh and cutie pie son!  We met them at Rutiers, one of Jimmy Buffet’s top 10 Cheeseburgers in Paradise!  It was such a sweet time to get to visit with CJ and AW (another friend from college)…I miss them so much!

I have been blessed beyond belief with a terrific and supportive family (I have been having anxiety attacks when it is time to do any traveling) and friends that are caring and loving through thick and thin! 

Oh, we did get the results from Button Boy’s biopsies Thursday evening.  The eosiniphil count (which back in August was over 235) was ZERO!!  The Flovent has done what we were hoping it would do!  Now, we begin the second phase of the trial, we are halving his dosage.  We will be returning to Cincinnati in roughly 12 weeks to repeat the EGD and biopsies to see how the lower dosage controls the EoE.

 

FINALLY!!! A Post About Friday in Cincinnati!

22 Oct

It has been almost two months since we returned from Cincinnati, and so much has been going on….I apologize for not updating much, much sooner!

Friday was the day we were expecting all of the answers to be passed onto us.  We went to the allergy clinic expecting to meet with Dr. Abonia, but quickly found out that was not going to happen.  Dr. Abonia had left town, even though he had told us that he would be in the clinic to give us the results of the patch test and let us know what direction we would go in.  So, no Dr. Abonia, no results, no direction.  VERY FRUSTRATING! 

We met with Bridget, who is in charge of the Flovent Trial with Dr. Rothenberg, after hearing from one of Dr. Abonia’s associates that Button Boy has no allergic reactions on either the 75 pricks the placed on his arm or the 30 patches they placed on his back!  Bridget said that Button Boy is the perfect candidate for the Flovent Study.  We were still overwhelmed with the news that Button Boy has NO ALLERGIES!  How can you have Eosiniphil cells in the numbers that he has them and not have ANY ALLERGIES!!!  UGH!

So, we met with Bridget and got the information about the Trial, and were so overwhelmed that we could not make such a huge decision (effecting the next 7 – 9 months of our lives) that day.  Mojo and I needed to be able to discuss it some more….talk with my parents….and with Girly Girl, because it will effect her life as much as the rest of us.

So, we left Cincinnati Children’s Hospital as lost as we were when we arrived.  No answers as to why Button Boy has not eaten well since he was 5 weeks old…why food was effecting him this way, but has no allergies….why we need to keep a child 7 years old on a diet that prevents him from eating foods that he loves (i.e. eggs) and put him through 6 – 7 months of a medication that he has already used and saw no results from. 

After the meetings with the doctors, we left Children’s Hospital Cincinnati…saying good-bye to Bridget, who we have come to like….and good-bye to Dr. Saeed.  Before we left Dr. Saeed, he gave us all gifts!  My mom & dad, and Mojo & I received Chidlren’s Cincinnati key chains…he gave Button Boy a Cincinnati Children’s baseball cap, and Girly Girl a Cincinnati Children’s t-shirt!  We do love him so much!

Button Boy had been such a trooper all week, that we gave him the option of eating *anywhere* he wanted to lunch.  No restrictions.  No diet.  Just whatever food he wanted!

His choice — WHITE CASTLE!  So, we went to White Castle!  He loved it!  He had a White Castle Burger, french fries, and a Coca-Cola!  He loved it so much…as did the rest of us. 

After enjoying our lunch, we headed to King’s Island Amusement Park.  It was Button Boy’s choice of where to go, and what to do first.  It was a beautiful day…and we rode the haunted house game ride more times than I could count!  Girly Girl got to ride as many of the roller coasters as she wanted.  Mojo got to spend part of the day with both kiddos…as did I.  It was such a  sweet day!….it was also sweet to know that we were headed back to Alabama over the next two days.

Saturday, we got up and headed back to Alabama through Kentucky.  We stopped at Mammoth Caves.  We missed the guided tours (you would not believe how busy that place is!) and were only able to self guide ourselves through the big room.  It was pretty neat, but a little disappointing that we didn’t get to take the tour.

We spent the night in Nashville and went to P.F. Chang’s for dinner….um — YUMMMM!!!!

Sunday, we got home and had Monday (Labor Day) to recover from the busy week! 

We are now on the medication for the trial, and will find out in December whether we are on the actual drug or the placebo.