Tuesday, October 29, 2013

allergy testing

The next step in Eosinophilic Esophagitis is find out what foods are making Little M miserable so off to  allergy testing we went. His back was swabbed and the nurses commented on how little his back is and that they would have to make all the pricks fit.

The pin pricks were painful for Little M. He wriggled and he winced but kept quiet. After 15 minutes, there were a lot of welts. But the right side of his body didn't form welts so the nurses had to prepare injections to put on his arms.

I thought maybe 6 or so injections, but no. There were about 20 and I was told to hold him down. This one was painful for my little guy. He cried. He cried silently. He didn't scream, he didn't thrash around which was to me, a lot sadder. He took it better than adults and the nurses told him so.

He tested positive for dogs, cats, molds, dust mites, trees, grass. For food he tested positive for rice, wheat, soy, eggs, peas, green beens, chicken, beef, lamb, pork.

As far as food allergies goes, most people are only allergic to a few. Being 3 years old, and the history of skin tests, it is deemed not highly reliable but this test does give people a starting point on which foods to avoid and reintroduce in order to narrow down the list.

From what I've learned, all foods are eliminated at once for a couple of months or until the absence of any symptoms and then reintroduced one at a time. Each time a food is introduced, we determine whether it is a pass or fail. Any symptoms would be a fail. We wait a certain amount of time, and then another endoscopy to wait for a clean one before another food is introduced. 

Pause. Breathe. Breathe. Breathe. 

I thank God for giving me such an easy going kid as my youngest. Ever since birth we noticed how he just rolled with flow. I dragged this little monkey everywhere, to his sisters and brother's appointments, my appointments, school functions, etc. I still do. He was easy. Nowadays he is exercising his own will, but he is such a great kid. I thank God that his siblings are in school and I can take him to his appointments without much disruption to our routine. I thank God it's not cancer. I thank God it's not life-threatening. I thank God. But being thankful doesn't stop the bad days from coming.

First Endoscopy, the beginning of our journey to Eosinophilic Esophagitis

I need to document this to get my dates straight. On August 29, Little M had his first endoscopy in order to find out why he has been vomiting constantly for the last year and a half. His GI has put him on Prevacid 2x a day for the last year and yet every attempt to wean him to 1x a day has failed. It controlled his vomiting very well, with flare ups every now and then.

The day started out with a 2-hr drive to the hospital in order to make his 1pm endoscopy. But with my error in preparing, his procedure was pushed back to 5pm. With a teary conversation with the GI, he managed to push back the procedure instead of sending us back home. This little guy was hungry and thirsty.

Numbing cream were put in 2 spots of his arms before the IV was placed. When the nurses came back, I was told to lay down with him and hug him so I could hold his arms and wrap my legs around his legs. They were prepared for a thrashing screaming 3-year old.

But true to his personality, he was very easy going. He winced but he did not move. He was very brave and he knew it. The nurses phrased him for being better than most adults.

The endoscopy itself only lasted 10 minutes. Once he was wheeled in to the OR, my wait was a total of 20 minutes. Though short, it was the longest 20 minutes of my life. Several times I thought I was going to faint but everything went well. The doctor was glad we did this endoscopy because he found a polyp in his small intestine. Several biopsies were taken.

A couple of weeks later, results came in. His eosinophil count in the mid esophagus was 100, and the close to the stomach is 25. Eosinophilic Esophagitis and Juvenile Polyp were the diagnoses. 

Monday, October 28, 2013

Eosinophilic esophagitis

Eosinophilic esophagitis is Little M's diagnosis after his endoscopy in August. In September he had allergy testing and tested positive to all meats except fish and shellfish, and tested positive for rice, wheat, soy, green beans, peas. After a year and a half of constant vomiting, we finally have an answer and it's all hard to take in. 

So after all that I have read, there are children out there who are younger than Little M who only have a handful (I read of some with only 5 safe foods to eat) of foods to eat along with a formula to sustain them. There are children in constant pain, children who are in feeding tubes. There are adults who have gone undiagnosed who are facing the possibility of esophagus replacement. 

The first step for us is to narrow down the list of allergen foods by eliminating them all and them reintroducing one at a time, followered by an endoscopy after introducing one kind of food. In such a shock after the allergy test, I started refusing little M bad foods and he went hungry for a couple of days. It was depressing.

His GI has ordered a different medicine (swallowed asthma medicine with sugar) without avoiding bad foods. I agreed. But how can one go through life being allergic to certain foods and not avoid them? It is a patch solution. While doing research there really is no way to do this without taking away the foods and giving them back one at a time.

The magnitude of this realization is immense. What will we feed this already small guy? I had a good few days and thought we can do this because what else can we do? The  days later I had a breakdown. What is his life going to be like from now on? What am I going to feed him? Bad days. 

Thankfully there are online communities who have families supporting each other through this life long journey. They validated my need to grieve, but said I have to be strong. Daddy is being positive for me, but sometimes it's hard. People don't understand. How can a happy active little guy be sick. He doesn't look sick. Surely all he has to do is avoid the foods he is allergic to. I wish it were that simple.

His life is going to be full of hospital visits. That alone is depressing.

I am thankful though, that he isn't like some kids with this disease that are in constant pain.