Day 3...Allergy Results and a Fever

And the whelps begin. If you look closely you will be able to see the whelps form from his skin prick testing.




Here is a list of foods that Ross has tested positive for: milk, wheat, peanut, soy, apple, banana, blueberry, cantaloupe, coconut, lemon, orange, strawberry, watermelon, barley, corn, oat, rice, rye, sesame, sunflower, all tree nuts, all fish, all seafood, green bean, broccoli, carrot, celery, lettuce, onion, pea, tomato, molds, ragweed, grass, trees, weeds, mites, cockroach, and cat. Basically, he is going to be a meat and potatoes kind of guy. It could always be worse. We will have to wait to see what his scopes show tomorrow before the doctors will be able to make a plan of action for his treatment. Poor guy is doing his prep for his upper and lower endoscopy that he will have at 8:00 in the morning. As soon as we have results, we will let everyone know.

Wow! Abigail has grown up so much from the last time we were in this allergy waiting room. What happened to my little baby? She is really beginning to turn into a little girl.


Now for the fever part...Abigail started running a temp. of 101.2 degrees. We are assuming that she has picked up a virus from spending the past three days in and out of doctor's offices. We are praying that she doesn't have the flu! The hospital has a strict visitation policy in place during flu season where children under 12 aren't allowed to visit and all of the "community toys" are locked away, but she still managed to pick up something. I guess we should feel fortunate that this is the first time that she has gotten sick from one of our many visits to the doctor.

Snow, GI Visit, and a Little Fun

Ross' appointment with the GI went well today. Dr. Kushner was very nice and more importantly, he was well educated in EE. He asked a lot of questions about Ross' previous history and prepared us for the scope on Thursday. Tomorrow's appointment with the allergist will be more eventful I'm sure. That appointment will be at 11:30 am.

On another note, it snowed here a little today. Unlike Arkansas, they know how to treat and scrap the roads here. However, if you ask people that live here, they say they don't know what they are doing...obviously they haven't been to Arkansas when it snows! :)

We have been able to have some fun while we were here this time. We went to dinner with our friends that we met the first trip we came to Cincinnati. Poor Conner wanted to get down and play like any normal 18 month old, so he ended up with Grandpa for a while. Next time Conner, we will have to go somewhere that will allow you and Abbz to run around and play! Thanks guys for working us into your busy schedule and for a wonderful dinner.

Monday, Dec. 14, 2008

Our sweet baby had her 7th scope on Monday. Abigail did very well, and Dr. Putnum said that her esophagus looked normal. He also said that when they look that good most of the time the results come back clean. That is what we have been praying for. If that is the case, it will be her first clean scope she has had since she was diagnosed a year ago. We will hopefully have the results before we head back home on Friday. All in all today was a quiet day. Tomorrow, Ross has his consultation visit with the GI at 8 am.

Yummy Recipe!!

Grilled Parmesan-Crusted Chicken with Alfredo Sauce and Quinoa:
3-4 Boneless, skinless chicken breast
Salt, Pepper, Garlic Powder, and grated Parmesan Cheese

2 cups heavy whipping creme
1 cup shredded Parmesan cheese
1/4 cup fresh minced parsley
6 slices of bacon, cooked and crumbled
1 tsp. tapioca starch (opt.)
1/2 tsp. salt

Coat chicken breast with salt, pepper, garlic powder, and parmesan cheese to taste. Grill chicken on prepared outdoor grill and cook until done (or until no longer pink inside). While the chicken is cooking pour whipping creme and tapioca starch (if using) into a sauce pan and mix together with a whisk. When well blended, add all of the other ingredients minus two crumbled bacon slices to the whip creme mixture. Heat until just boiling. Once the chicken is done slice on a diagonal.

To serve:
Prepare Quinoa as directed on box. Scoop as much Quinoa as is desired onto plate. Pour Alfredo mixture on top. Top this with grilled chicken slice, and a drizzle of Alfredo sauce. Garnish with crumbled bacon from reserved bacon and shredded Parmesan cheese. Can serve with bacon-wrapped asparagus on the side.

Although this recipe is "allergen-free" for us, it is really very delicious. Let me know if anyone tries it. Oh, and by the way, Quinoa is a grain much like rice, but packed with much more protein. I actually like it better than rice and I think it is much more flavorful.

100 Top Pediatric Health Blogs

Ross and I are proud and honored to announce that Mothers Encouraging Mothers of Eosinophilic Children has been reconized on 100 Top Pediatric Health Blogs. You can view this site by clicking on the link labeled "Top 100 Pediatric Health Blogs" on the top right-hand side of this page. There are many pedicatric related issues ranging from health and wellness to rare childhood diseases. I encourage you all to check it out; it is really very informative and can hopefully connect families dealing with the same issues.

Joy and Patience

"Count it all joy when you fall into various trials, knowing that the testing of your faith produces patience." -James 1:2-3

I have known this verse since I was a child, but came across it again in my reading last night. This verse and this verse alone may be the single most important verse for my family and the trails we are facing together. "Count it all joy..." I can honestly say that I see the joy in this disease called Eosinophilic Esophagitis. Yes my daughter and my husband both have this disease, but I see that my God has a bigger plan. A plan bigger than the disease, bigger than not being able to eat, bigger than the strange and confused looks, and much bigger than the tears. I know that this is for HIS glory. I am honored and blessed to be the wife of an incredibly strong man that restricts his foods so that he can be healthier, and so that someday he can tell his baby girl that he made sacrifices that paid off so they can both be well. A man who is willing to face this disease knowing that God is standing there with him through it all. Ross and I are equally as blessed to know that our Heavenly Father entrusted us to provide for such a sweet and beautiful little girl. Although Abigail isn't able to eat the foods we eat, she has brought us joy beyond words. Her name has truly brought meaning to our lives; even more so than we could have ever imagined. Abigail means "My father's joy," and she is just that. Not only has EE brought us joy, but it has also brought us patience. Patience in waiting for doctor's appointments, money to provide the medical care needed, test results, and the unknown. Through this trial we have met amazing people with children that posses unexplainable strength. We have seen doctors with passion like nothing I have ever seen before. We have become a part of a church family that many do not find in their lifetime, and relied on family and friends for the support they have promised to show. So, if asked, yes I have found divine joy and patience during this trial, and thank God that He knew that with Him we could handle it. This trial is a process, but someday I know there will be healing, and we will give Him and Him alone all of the glory!

Cicninnati Follow-Up

After much anticipation, we have our next trip to Cincinnati planned out. We will be leaving December 14th and returning December 19. Abigail will be scoped on Monday, and the rest of the week will be dedicated to finding out more about the severity of Ross' case of EE. He will have his consultaion with the GI on Tuesday, allergy tested on Wednesday, and scoped on Thursday. We sent Ross' initial pathology reports and slides to Cincinnati, and the results were more shocking than we had expected. His highest eosinophil count was 169 eos/hpf. Needless to say, we are anxious to hear what Cincy has to say about his treatment options!

Second Meeting

Thank you Cassidy and Laura for another successful meeting. It was great to express our concerns, pain, sadness, and frustrations with other mothers who understand life with an EGID. Don't forget to find your recipes. We are pulling our resources and recipes together to hopefully help one another out. Who knows, one day we may have a cookbook!

Also, a special thanks to Cassidy for letting us borrow her cotton candy machine. I can't wait to Abigail's face when she takes that first bite!

Newest Developments

Our newest development consists of Ross having acute symptoms of eosinophilic esophagitis. For two weeks he felt as if someone was strangeling him; so on August 20he had an EGD. The scope showed a pretty nasty looking esophagus just to be frank. He has several rings, furrowing, strictures, and plaque. All indicative of EE. While waiting for the pathology reports from the biopsies taken, we decided to have him allergy tested. He had been tested for environmental allergens as a teenager; but they tested limited foods. His results showed the following: wheat, corn, oat, rice, rye, onion, yeast, green bean, green pea, orange, and soy. This is in addition to peanut, tree nuts, fish, and shellfish we already knew to be positive. Finally we received the results from the biopsies. He has 50 eos/hpf in his distal esophagus and 80 eos/hpf in his mid esophagus. If you have read Abigail's Story, you will see that her eos/hpf were 90; so they are both in pretty rough shape. We are hoping that since Ross' symptoms have just now exacerbated many years since his first onset (which looking back, was when he was a toddler), that his case will be less severe than Abigail's. We have been having difficulty finding an adult GI that has experience with EE, so we are also taking him to Cincinnati. We have begun the process and look forward to an acceptance call within the next 2 to 4 weeks.

Our Trip to Cincinnati

Our trip to Cincinnati was absolutely amazing! Other than the speeding ticket that we got on our way to have Abigail's patch testing read ;). Oh well, you win some you loose some. Back to our week in Cincy. On Monday, Abigail had her scope and amazingly her esophagus looked better than it ever has. However once we got the pathology results later in the week; they found eos still present. Dr. P. said that since the disease was still prevalent, he wanted to remove bananas (the one and only food) from her diet. Honestly, this was kind of a sigh of relief because we were terrified to introduce new foods. So long story short, she is drinking her Neocate Jr. only, and she may have the original Dum Dum Sucker flavors, Pixy Stix,and Smarties in order to maintain her oral motor skills. On Tuesday Abigail had allergy skin prick testing and also patch testing. The prick testing was well....horrible! She sreamed and flailed her body; wanting desperately to scratch the whelps that popped up immediately. Her testing confirmed the following allergies: milk, casein, eggs, wheat, peas, peanut, tree nuts, corn, barley, rye, mustard and sunflower seeds. Luckily however, her patch tests all came back negative. Like I said previously we removed the bananas (even though she did not test positive) because she has never been scoped on formula only. The theory is that if she has no eos present on formula only then she has the allergic-type of EE, and if there are still eos present; then she has the non-allergic type. Of coarse we will be holding our breathe for the next three months as we wait to find out at our next scope which type of EE she has. Here's to hoping that it is the allergic-type! I say this because although it is difficult to treat, it is much easier to control than the non-allergic type. I think that should get everyone up-to-date with our progress. I have attatched some pictures from our trip below.


Daddy, Mommy, Abigial, and Patches the Bear before the EGD.



Mommy holding Abigail as they are putting Abigail to sleep.



Abigail playing in the Allergy waiting room.



Look closely and you can see the whelps!



Abigail's Patch Testing.

CIncinnati Here We Come...

Finally, I thought this day would never come! Tomorrow we will be leaving to take Abigail to the Cincinnati Center for Eosinophilic Disorders in Cincinnati, OH. I am looking forward to being further educated on this disease, getting answers to our many questions, and finding the best treatment options for Abigail. We will be gone August 9-16.

Since I last posted, Abigail had an MRI of her brain. Everything came back normal with no lesions or abnormalities. She also had an orthopedic appointment. Her doctor wants to give her lower extremeties a little more time to correct themselves; we have a follow-up in 6 months.

Now that you are caught up, I am looking forward to posting our results from Cincy soon!

Thank You ABC...

Wow! I just watched an episode of ABC's Extreme Makeover: Home Edition via YouTube. The makeover was for the Stockdale family. They have four children with Eosinophilic Enteropathy, and the dad is going back to school in the field of Immunology in hopes to find a cure for his children and others with Eosinophilic Disease. It was an amazing episode and I encourage those of you who would like insight into this disease to watch it. If you view it through YouTube, it is split into 5 parts. Here is the first of five: http://youtube.com/watch?v=vDazFr6d-bY. Let me close with..."Welcome Home Stockdale Family," and thank you ABC for sharing with the world what Eosinophilic Disease is and how it affects our lives!

*Ross just showed me that you can watch the "Stockdale Episode" on ABC's website in its full length at http://abc.go.com/player/?channel=27718. Enjoy!

Abigail's Story

Abigail inside of Angel One on the way to Arkansas Children's Hospital on March 24, 2008.

Note: Abigail's allergies: milk, eggs, wheat, peas, peanuts, white potatoes, and goat's milk. She is also to avoid all tree nuts, shellfish, and legumes.

On December 18, 2007, Abigail was admitted to Arkansas Children's Hospital (ACH); after refusing to eat anything except breast milk for two weeks. I went to several different doctors that told me, "It's just a phase!" Our last option was to drive 3 1/2 hours and take her to the ER at ACH. We were there for 15 days, but it was "just a phase"! While in the hospital, Abigail was diagnosed with Eosinophilic Esophagitis. Meaning that eosinophils had gotten into the tissues of her esophagus causing swelling. This resulted in difficulty and pain when swallowing. The doctor's put Abigail on Elecare Vanilla, an elemental formula that is hypoallergenic because she has such severe food allergies.

The doctor's couldn't tell my family and I much about this disease because they themselves lack knowledge about this rare and incurable disease. We were discharged from the hospital on January 2, 2008. (That's right, Christmas and New Year's in the hospital). Abigail was sent home with an NG feeding tube, six different medications, and terrified parents with no knowledge of what's to come.

Even on the Elecare formula, Abigail still wasn't back to her "normal" self. She had a persistent runny nose and just didn't seem to feel well. Then, she began having chronic diarrhea. She was admitted for another three days to ACH. On March 3, 2008, she had her third EGD and Sigmoidoscopy with biopsies to find that she now has eosinophils in her colon. Her GI doctor finally changed her formula to Neocate; after I asked for this to be done two months prior.

Today, Abigail's sole source of nourishment comes from Neocate Jr. Tropical, an elemental formula. Bananas are the only solid food she can eat. Her diarrhea has ceased and her runny nose is gone. All of this has happened since changing her formula. She has changed into a different child; sleeping through the night, playing with her sisters, laughing, and squealing. The journey continues, but for today we will smile!

Food Bolus and Zithromax

Since I last posted, Abigail was air-lifted on March 24, 2008 to Arkansas Children's Hospital. As a result of food impaction, she spent five more days in Arkansas Children's Hospital. We originally took Abigail to the ER at Washington Regional Medical Center because she was having difficulty breathing. When we arrived her pulse OX was 85. Once the medical staff determined that she most likely had a food or foreign body impaction; she was moved to ACH. She passed the food bolus before the helicopter landed at ACH (9 hours later); so this made it very difficult for the ACH staff to determine what had happened. Their explanation for the breathing difficulty was pneumonia. However, there was no physical or medical evidence supporting their pneumonia theory so they did a bronchoscopy on March 28, to rule out aspiration of the food particle. The scope came back clear, and we were released the next morning, with no real explanation of what happened. Let me follow up by saying that Arkansas Children's Hospital is a wonderful hospital with excellent doctors, and I know we will be seeing them many times over.

Like I said, "We will be seeing them many times over," and we are back for another visit. Abigail started having feeding refusal again on May 29. This was a result of an allergic reaction/eosinophilic flare from the antibiotic, Zithromax. I had spoken with Abigail's PCP about the research I found with EE patients and antibiotics, and he insisted that the Zithromax would be okay. I discovered in my research that many eosinophilic patients could only take Omnicef or Duricef; so those of you reading this with children who have an EGID, keep this in the back of your mind. It always pays to listen to your God-given "gut" instinct. So, on June 2nd, Abigail had her fourth upper EGD and third Flex Sigmoidoscopy. Her GI saw slight furrowing in her esophagus again, and believes it is due to the antibiotic. We will have the biopsy results sometime next week, but we all suspect an increased number of eosinophils.

In other news, Abigail has a Neurology appointment on June 24, Orthopedic appointment on July 10 (both at Arkansas Children's), and will be seen at Cincinnati Center for Eosinophilic Disorders the week of August 11. Hopefully we will get more answers and insight into all that Abigail's little body is going through.Our journey with our little girl and her rare disease is just beginning, and oh what a journey it is going to be!

June 2nd Biopsy Results

I just spoke with Abigail's GI at ACH. The biopsy showed that Abigail has increased eosinophils at 12 eos/hpf in her lower esophagus. This number is no where near the 90eos/hpf like it was in December, but there should never be any eos present in the esophagus. There was also slight furrowing again. Her doctor doesn't want to change anything right now since we will be going to Cincinnati Children's in August. My question is; if we sit, wait, and do nothing will her eosinophils continue to rise? I guess that is something we will have to wait and see about. Abigail is still only drinking about a maximum of 21oz. per day, but she is maintaining her weight so her doctor is happy with it. For now anyway. Thankfully, her doctor is going to email, Dr. Putnum (Cincinnati GI) to give him the results of this last biopsy. Now, we continue to wait. Let me just say how fortunate we have been to have such a great Gastroenterologist. For any of you that are searching Arkansas or the surrounding area for a good GI that has experience with Eosinophilic Disorders, Dr. O'Connor is excellent.

Addendum: This scope was done less than 12 weeks after given steroids; therefore, these numbers are inconclusive. Most likely the eos/hpf would have been greater.