Ross' Treatment Decision

Well, it's been a while since I have updated anything about Ross' condition. After our last Cincinnati trip, he kind of took a little hiatus; eating whatever he wanted. Now that the baby has arrived, he is ready to get back on track. He is doing a 6 week steroid burst and elemental formula only to hopefully jump start the process of eliminating the eosinophils. After the completion of the the steroids, he will add beef to his diet. This time we are choosing to use only grass-fed beef as his source for this food trial; since he is severely allergic to corn. Hopefully avoiding grain-fed beef this time will be enough to knock out those extra 10 eos he had the last time he trialed beef. We will let you how our theory turns out.

Gene Linked With Eosinophilic Esophagitis!

CCED and CHOP have discovered a gene linked with Eosinophilic Esophagitis. Click HERE to read the article. This is huge news for those living with EE, and the future treatment that will hopefully come from this new discovery.

EE vs. GERD

Children's Memorial Hospital in Chicago, IL, produced an excellent article explaining the differences between Eosinophilic Esophagitis (EE) and Gastroesophageal Reflux Disease (GERD). There is a handy chart midway through the article comparing these similarities and differences. Click here to view the article.

It's Been A While...

...and this is the reason why! Our sweet son, Jonathan Ross, was born December 10,2009. Weighing it at 8 lbs. 1 oz. and 20 1/2 inches long.



We finished out 2009 with a bang by bringing home a baby boy to a family filled with girls! ;) His three big sisters are in awe of him. Although 2009 ended on a good note, 2010 started with a hospitalization and pending food trial. You know it isn't a good sign when your three year old falls asleep during a breathing treatment at 5:00 in the afternoon. That is exactly what happened Friday evening, January 29th, when Abigail was getting what I thought to be a "normal" breathing treatment. After realizing that she had fallen asleep, I checked her forehead and sure enough she had fever. No biggie, we had had a few late nights so I thought she was just overly tired. I let her rest for a little while, got her up, did our nightly routine, and put all the kids to bed. She woke up early Saturday morning and crawled into bed with Ross and I and fell back asleep. This is where she stayed all day. In our bed. When I say all day, I literally mean. All. Day. Long. I had to carry her to the bathroom to go potty; with her crying the whole time. She slept for hours at a time, and just when it would get to the point where I felt like we needed to take her somewhere she would wake up for a little while. She was only awake for about 20 minutes at a time, but at least we knew she was still responsive. Up until this point Abigail has never really been sick. Sick with EE, yes. Sick with a cold, yes, but really sick with an illness? No. I had listened to her lungs and they sounded clear and her temp wasn't terribly high; so we called it a night and all went to bed. Then Sunday arrived. Same thing. Won't get out of bed, won't drink her formula, won't talk, and temp is hanging out right around 103. The only good thing we had going at this point is that she had been drinking water so we knew she wasn't getting dehydrated. After giving her a bath, I noticed that her hands and feet were kind of gray in color. Thinking they were just cold, I tried warming them up. Then I had Ross try. While he was trying, I decided I needed to listen to her lungs. That is when I knew we needed to take her to the emergency room. At this point she wasn't wheezing, but she had significant crackles (indicative of pneumonia) in the bottom right lobe of her lung, which had been perfectly clear the day before. By the time we could get to the ER she was retracting at the trachea, indicating that her breathing was becoming more labored. Her pulse ox was 87 and dropping rapidly, even after a Xopenex updraft. She had two more breathing treatments and was placed on oxygen. After each of the breathing treatments, her pulse ox continually dropped, and she was admitted for RSV (Respiratory Syncytial Virus) and viral pneumonia. She was on continual oxygen for five days straight. Just when they thought they could wean her down, they would have to up it again. Let me just say that it is very frustrating to see your child get weaned down to 1/4 of a liter of oxygen just to turn around a few hours later and see her back up to 2 1/2 liters. The oxygen levels continued going up and down until Friday morning when she woke up and was suddenly much better. After several hours off of the oxygen (including a nap without it) we were finally able to go home. Of coarse during this hospital stay, the other 3 kids ended up sick; none of which got it as badly as Abigail. The point of this post is that these are the issues that we have to face when dealing with EE. It is not just the EE itself. It is the illnesses that would not typically cause a problem for healthy children her age, but because of the underlying EE, those illnesses are exasperated. This is even true for the "common cold" that lingers for weeks upon weeks in people with EE. With that being said, she is doing much better now and we anxiously await the start of her food trial. Although I am very excited to begin this process, I am also just as nervous if not more about how she could react to the food. I know that we will begin with either apples or grapes; we will leave that up to her. We decided that allowing her to choose between the two would give her some control and feel more involved in the process. We hope to begin this new part of our journey the first week of March. Here's to praying our sweet girl will pass her first food trial with flying colors!

Inhaler Propellant and Corn Allergies

Just FYI, if your child is using an inhaler and doesn't seem to be getting better after the treatment; and in fact seems worse, it could be the propellant. Abigail uses an Albuterol nebulizer at home as needed, and if she happens to need a little help with her breathing while we are out and about, we used an Albuterol inhaler. Both Albuterol, they should be the same right? Wrong. Abigail also happens to be very allergic to corn...did you know that most inhalers use ethanol (a by-product of corn) as the propellant? This would explain why time after time we would use the inhaler and I would swear that it was making her worse. Because it was! Of coarse, I countered myself by saying that couldn't possibly be since she used the nebulizer and responded well to treatments. It finally got to the point that more times than not we were counteracting the inhaler with the nebulizer until one day, I happened to catch the word "ethanol" on this side of the inhaler. By the way, Xopenex also uses ethanol as the propellant. We now have a portable nebulizer that travels where ever we go, and we haven't had any problems since. I figured I wasn't the only one who didn't know about the ethanol, and wanted to spread the word to you other mom's and dad's who might be experiencing similar scenarios.

Ross' Results

So, Dr. Kushner called with Ross' preliminary results. He still has mild to moderate eosinophils, but the numbers went down from 245 to 26. That is huge improvement but the disease is still prevalent. He is going to continue his beef trial along with the formula until all of the the doctors (from U.C. and Cincy Children's) meet sometime in July. They will discuss his further treatment options and get back with us. He also still had eos in his small intestines as well as in his esophagus; so this may change his diagnosis a bit, but we will have to wait and see.

Abigail's Results

I received a phone call from Dr. Putnum today. He said that Abigail's scope looked great! There were only minimal eosinophils; nothing to prevent food trials. However, because of Abigail's status with this disease and her age, he suggested that we wait another six months to a year to begin trialing foods. This is because most of the children like Abigail fail their food trials, especially at her age. Another big reason we are waiting is because Abigail shows little to no interest in food. She is curious about what certain foods are, but other than asking what it is and if you eat it, she shows no desires to consume it herself. If and when she shows an interest and we cannot put her off any longer, then we begin the trials. Unless of coarse, we reach close to the year mark at which point we will begin them either way. When we do begin, we will start with grapes. She will have to eat them for 3 months and then be re-scoped. Although this was a bit disappointing, I agree that this is in her best interest. I would hate to set her up for failure by beginning too soon.