Ella's Turn

When we found out we were pregnant with Ella, it was about 2 days before Eli was admitted to the inpatient feeding therapy program, Our Children's House, at Baylor University Medical Center in Dallas. It was also about 2 months after Eli was diagnosed with Eosinophilic Esophagitis. Once Eli was diagnosed, we began researching like crazy; what causes it, how is it diagnosed, is it genetic.... One thing that we did learn was that, while researchers have not been able to identify a gene that is passed along, EoE does tend to run in siblings. So when we went for our first visit with Dr. Osuntokun at Cook Children's, I asked him what the possibility was that Ella would end up with the same disease. While I was expecting an answer of "50/50", "There's no way of really knowing", etc., I was kind of shocked to just get the short and simple answer of, "Yes."

So once Ella was born, we knew that we would need to be very diligent with watching for symptoms, documenting what she ate, how she reacted.... dissecting everything that went into her system. At least with Ella, we knew what to look for. And we knew we would need to follow-up with Eli's GI doctor.

Ella was initially breastfed. I also supplemented with Similac Supplementation formula. Ella was spitting up thick, fluffy, soured milk. This continued when I stopped nursing and switched to Similac Sensitive formula. Her pediatrician suggested trying Similac Alimentum formula, a hypo-allergenic form. Her spit-ups lessened, but it was still soured milk. Finally, they gave us samples of Elecare for Infants, the non-dairy based, hypo-allergenic "elemental" formula Eli is on, only for Ella's age. The difference has been pretty dramatic.

When Ella was about 6 months old, we introduced rice cereal. She seemed to handle it okay, but we did notice that she began to break out with eczema, one symptom of EE that Eli also had. One day when I was feeding her, I just took her shirt off. A bite of rice cereal dropped on her chest and she quickly broke out in a rash where it had touched. We've been able to introduce apple, sweet potato and green bean all without incident. With carrots, she began spitting up quite a bit, all of it orange, like it was not digesting.

We did do skin-prick allergy testing with Ella, like we did with Eli. Amazingly, she tested negative for everything. Once we met with Dr. Osuntokun on Thursday, he explained it that she tested negative because her body has never been in contact with these foods. So naturally, her body is not yet reacting to it. He said she was basically just too young to allergy test. However, Dr. O said that, based on these reactions Ella has had to dairy, grains and carrots, she is allergic to them and they need to be avoided.

Dr. O prescribed Nexium for reflux and ordered that she stay on Elecare for Infants. We were so glad for this order! When the pediatrician was wanting her on the formula, it was basically without reason since she did not have a formal diagnosis. So, we were going to be stuck paying for it out-right ($68-93 per can), then being reimbursed for it. With the GI's diagnosis, Ella's insurance will cover it! We are so thankful for that!

So, at this point, Ella is diagnosed with food allergies and GERD (Gastroesophageal reflux disease). We will continue to monitor Ella's foods and reactions to them. We will also return to Cook Children's in February with Eli to follow up. Dr. O does not want to have to do an upper GI scope at this point, but it may be something we have to do in the future. We will also look at repeating the allergy testing later on, once Ella has had more contact with different foods.

So, the process begins. We just have to continue to be diligent and cautious. Again, at least we still have more information and awareness with Ella than we did with Eli. Hopefully this awareness will be in our favor as we proceed with Ella!

Adding Another Doctor to the Mix

Eli and Ella had doctor appointments at Cook Children's Hospital on Thursday. On top of his regular GI follow-ups, Eli also met with a new doctor, Dr. Pfaff, with Pulmonology.

Eli has always struggled with asthma symptoms and upper respiratory infections. At his GI appointment and upper GI scope in August, Eli had a horrible asthma flair. The doctors were hesitant to do the scope, saying there was too much of a risk that his lungs could collapse during the procedure leading to him being admitted to the hospital and being put on a ventilator. But they sent us for chest X-rays to check his lungs and to the hotel to do back-to-back nebulizer treatments until his scope the next day. Once we arrived to the hospital the following day, his lungs were clear and they felt confident in going forward with the procedure. Once it was done and they removed the breathing tube, Eli coughed so hard that he ended up busting the blood vessels in his face. His body also had a bit of an adverse reaction to the meds, so his face and neck were very puffy and flushed.

Since then, we have been doing nebulizer treatments every morning and night with Albuterol and Pulmicort mixed and cough medicine every morning. The treatments haven't necessarily "helped", but we could always tell when we did not do the treatments; he would cough non-stop and wheeze horribly. A few days before his first Pulmonology appointment, Eli asked me why he coughed so much. I assured him that we were going to try and figure that out.

I know I say this all the time, but I continue to be impressed each time we go to Cook Children's Hospital. Dr. Pfaff was absolutely amazing. From the time he entered the exam room, he was incredibly engaging with Eli and respectful of Eli, treating him not like a child, but like an equal. Eli even said that he liked Dr. Pfaff, which is NOT normal for him.

One of our major concerns with Eli stems from testing that was done several years ago, before we had the Eosinophilic Esophagitis diagnosis. Before this, the doctors had questioned if Eli had Cystic Fibrosis. They tested him three times for it. The first two times came back "elevated", with the final test coming back "negative". Dr. Pfaff explained that the sweat chloride test probably did not collect enough sweat, so it was very concentrated, leading to the "elevated" results. But after looking at all of the results, Dr. Pfaff felt confident that Eli does NOT have CF!

Dr. Pfaff does believe that Eli does have cough-variant asthma. This is the diagnosis the docotrs had given him in Lubbock. However, Dr. Pfaff feels that, with the combined diagnosis of EoE and cough-variant asthma, the "medium guns" treatment we had been doing to control his asthma was simply not powerful enough. So, he gave us a "big gun" treatment plan. We are changing the medicines that Eli has been taking, plus changing from nebulizer treatments to inhaler treatments. He also gave us a prescription for an oral steroid to have on-hand if Eli's asthma gets to the point of treatments simply not working.

Dr. Pfaff went ahead and ordered another set of chest X-rays so he could make sure that there are no anomalies that have been missed during past X-rays. He also wanted to do another test to check Eli's lung function, but Eli was not willing to cooperate. He sent a piece of the test equipment home with us so that Eli can practice with it and get a little more familiar with it. We follow up with Pulmonology again in February and can hopefully complete the Lung Function test.

After Pulmonology, we went to Eli's GI appointment. We were concerned because Eli is only eating sweet potato, carrot and butternut squash. His skin is starting to turn orange again! Dr. Osuntokun assured us that this is actually a GOOD thing! It is called Carotenemia and it simply means that Eli's intestines are working very well and it is not harmful in the least.

Because all of Eli's veggies are orange, we had hoped to introduce a new vegetable to his diet: peas. We found several "mixes" that include pea, so he wouldn't be eating straight peas. However, peas are very high on Eli's allergen list; TOO high actually. So, Dr. O recommended that we do NOT introduce peas and that we, in fact, NEVER introduce peas to his diet.

He sent us to speak with the Dietitian/Nutritionist on staff for suggestions. Tomato is very low on Eli's Allergen List, but we didn't know how to go about introducing it. We were pleased to find that Campbell's Tomato Soup is dairy and soy free! So our next plan is to introduce tomato soup! We're also very excited about this because Eli has NEVER had warm food! All of his foods have been room temperature or cold. So this will definitely be a new, although difficult, experience for him. We plan to water it down a little bit and let him "drink" it rather than try to eat it with a spoon. I have also been able to find Sweet Potato soup and Butternut Squash soup for him to try!

Dr. O also gave us samples of a probiotic to keep on hand for Eli based on the oral steroid that Dr. Pfaff from Pulmonology gave us. Oral steroids tend to be hard on Eli's tummy, so the probiotics will be very helpful for him.

So, it was definitely another successful trip to Cook Children's Hospital! We are pleased to have been able to get in with Pulmonology. Even though it adds another doctor into the mix for Eli, we feel that it is one more huge step toward making sure that Eli is as healthy as he can possibly be!