The Girls' Stories

ANNA

Anna is now 5 years old.

Anna was born 6 1/2 weeks prematurely. At birth, she was not breathing, but within minutes she was successfully breathing on her own. She remained in the NICU for a few days after birth and then went to the Special Care Nursery, a step down from NICU, to finish out her 12 day stay after birth. Her only real issue that kept her from going home was maintaining her body temperature on her own.

When she went on to formula at 10 months old, we had to put her on a hypoallergenic baby formula because she couldn't keep milk and soy based formulas down. A bit after she turned one she went on to soy milk but didn't tolerate it well so we switched to a toddler follow-up sort of formula. Around 18 months she started drinking Lactaid milk. We were told she was lactose intolerant. During the first year of life, she had chronic ear infections and was on a load of antibiotics. Those cleared up when she turned one. During the first year of life, she also dealt with what seemed like almost constant stomach viruses that always left her with vomiting and diarrhea.

At 18 months she had an anaphylactic reaction to something we were never able to identify but believe now was dog hair. Her daycare called Ryan to pick her up because she had a fever, had red welts covering her face and was having a bit of trouble breathing. Within thirty minutes, when they arrived at the ER where I worked, her face swelled so badly I could barely recognize her. She was covered in thick patches of hives all over her face, neck and arms. She could barely breathe and was very agitated. The nurse and doctor were able to treat her with strong doses of antihistamines and breathing treatments to get it all under control. We were most afraid because we had no idea what had caused this reaction. Was it a pet hair reaction, bee/bug bite, or exposure to a food we didn't know she was allergic to?

A few weeks later, she and I were out one day at the farmers' market when a dog sniffed her face. Within minutes, the same symptoms began to reappear. I ran with her in the stroller back to our car and rushed her to the ER. Again, they were able to take care of her because I reacted quickly.

When Anna turned two, she was diagnosed with Reactive Airway Disease (asthma). She was put on a Flovent inhaler with an air chamber/spacer. Every time Anna would get a cold, it was always a bit more than a cold and would take longer to go away.

When Anna turned four her ear infections returned but not often. Her asthma seemed to start getting worse and we noticed that when she was exposed to dogs or cats she would have an asthmatic reaction but then be sick for several days to weeks following that. When she got a cold, it turned into much more than that for at least a few weeks. She started missing a lot of school because she was too sick to go or on breathing treatments too many times in a day to take her in to school.

She spent her fifth birthday in the ER. A few weeks prior to this, Anna had an allergic reaction to something that irritated her asthma. She ended up with a high fever for a few days, a lot of chest congestion and wheezing, strep throat and a double ear infection. The night of her birthday, I put Anna to bed at 8 pm. She couldn't stop coughing for what seemed like an eternity. Her cough would not stop long enough for her to lay her head back to relax and take a good breath. Around 1 am she came into our room because she was quite anxious. Ryan continuously monitored her BP and respiration and listened to her lungs. By 3 am she was extremely hyperverbal and still had not slept a wink or had a break from the coughing. The coughing had been almost constant. She started to get quite upset and asked repeatedly to be taken to the hospital. Ryan took her at 3:30 am once we realized she was really struggling to breathe at this point.

When they arrived at the ER, her oxygen saturation, the percent of oxygen able to get into her blood, was dangerously low at 89%. Her temp was 103.3 F and her heart rate was very elevated. She was soon to be admitted to another campus when shift change occurred and because she was stable when the new doctor checked her stats, he sent her home. The next day I asked her pediatrician to see her. He refused. I didn't understand why. After much arguing, he agreed to see her. Once he realized how serious she was, he offered to direct admit her to a nearby hospital but left the decision up to us. We decided to keep her home and take him up on the direct admit if she got worse through the night. Late that night (the day after her birthday) her fever reached 104.2 F. After Motrin, a nap, and a lot of prayer, she just sort of snapped out of it and started to improve. After about three weeks total of being sick, on several medications the entire time and missing a lot of school, Anna seemed to get better. She returned to school for a few days, but we had the teacher keep her inside during playground time.

A week after getting better, her symptoms returned. She got very sick again and ended up on more medications. At this point she was on Omnicef & Zithromax (two antibiotics), Orapred (oral prednisone), Albuterol or DuoNeb and Pulmicort in her nebulizer, and Tylenol and Motrin. She became quite mean and aggressive as a result of taking so many steroids. A few weeks later she was better again.

At this point, I decided to find a new pediatrician. While waiting to see the new ped, I took Anna to see a Pediatric Pulmonologist. The nurse practitioner saw her and decided to make some changes in her medications. She no longer would take the Albuterol and Pulmicort in her nebulizer. She would now use Xopenex in her nebulizer, Flovent inhaler w/spacer and Singulair chewable. She would use Xopenex or Albuterol in her nebulizer for rescue situations if necessary. The pulmo's office is also a sleep lab. Because Anna is quite a restless sleeper, the NP ran labs to check her iron and test for several allergies. She told me the results showed that Anna's iron was drastically low and started her on a liquid iron supplement. She also told us to remove all dairy, eggs, soy and wheat from Anna's diet. She also tested positive to dust mites, dogs, cats, pigweed and oat tree.

Anna soon saw her new pediatrician who specializes in asthma. He reviewed all of Anna's charts including info from the pulmo's office and decided to send her to an allergist.

The allergist also treats asthma. We saw the NP there as well. She is wonderful. She did skin testing which revealed Anna's allergic to pork and lamb. She prescribed an inhaler called Proair w/spacer for rescue when we are not at home and don't have access to the nebulizer. She also started Anna on Zyrtec (antihistamine). We also have several EpiPens to administer epinephrine in the event she ever has an anaphylactic reaction that may be fatal and closes off her airways. One is placed at her school. The allergist explained that Anna is also have histamines inside her body going crazy because of all the things her body is reacting to. She believes that Anna possibly still has GERD which she had quite badly as a baby and maybe some gastroenteritis as well. She explained that she probably has hives in her bowel at times from all of the allergic reactions occurring inside her body from the foods that are aggravating her immune system.

A little over a week ago Anna was exposed to a dog. The contact was extremely minimal yet she broke out in hives within minutes. This is a reaction she hasn't had externally in over three years.

The allergist sent us for lab work to test for allergies to several more food items. The new results showed Anna is also allergic to all nuts (including tree nuts), beef, pork, chicken and lamb.

Anna saw her pediatrician yesterday, a different one in the practice, who told us that there was never anything wrong with her iron levels and that she should not have been placed on an iron supplement.

Anna saw her allergist again this morning. She sent Anna's records to the Pediatric Gastro for their review. The gastro wasn't able to see her until the middle of July. However, once he reviewed Anna's records he was able to make the decision that he needed to see her much sooner. She will see the gastro at Nemours Children's Clinic on Thursday, April 24th. At this time, he will be able to set Anna up with a Dietitian we're hoping who will help make sure that Anna receives proper nutrition while eating a very limited diet. He will also be able to look farther into the possibility of her still having GERD (acid reflux) and any lower GI issues.

We return to the lab tomorrow for more bloodwork. This time we will be testing for all the foods in the post below. Some of these foods are the only alternatives to the foods mentioned above that she can not have. We need to be certain she's not also allergic to these before we use them.

For now, Anna's on Rice Milk, Rice cheese slices, allergen-free (gluten, soy, milk, nut, egg, wheat-free foods made in a totally allergen-free facility with no possibility of cross contamination with allergens) cereal, snack bars, cookies, pancake mix, chips/crackers, bagels, fruits, veggies, juice and fish. She eats SunButter which is made from sunflower seeds and is an alternative to peanut butter, made in an allergen-free facility. When we see the gastro, we will be discussing testing and treatment for any vitamin/nutrient deficiencies she may have or end up having due to this very limited diet.

She saw the ENT a month ago. The fluid from her prior double ear infection is almost gone. She will return to the ENT in another month to make sure her ears are empty of fluid and that they are responding properly to sound again. They were not responding to sound exactly as they should be, but the dr was quite certain they would in another month's time.

MEREDITH

Meredith is 2 1/2. She was born healthy and quite unhappy, three days late.

At 7 weeks of age, after many weeks of screaming and not keeping much down, we found through testing that she was allergic to milk and lactose and had to be put on the same hypoallergenic formula that Anna was on at one point. She also had reflux. At 8 weeks old we started putting baby cereal in her bottle to help thicken her formula to get it to stay down better since her reflux was bad (under dr's advisement). At 8 weeks she slept through the night and then some! This was something that Anna NEVER did and still does not do. Meredith became a new baby and was usually always happy, but a bit high maintenance.

She never got sick until she was about 1. Around that time she got croup. She got croup two other times after that all in one year. She also ended up with her first double ear infection. From there she's had a few more. She's had her share of visits to the ER as well.

When Anna dealt with that three week time of being very sick around her birthday this year, Meredith was also quite sick. Meredith was also on Zithromax, Orapred, Oral Albuterol and a decongestant.

She saw the ENT who found that the fluid in her ears wasn't empying in a timely manor. Because of this, her ears were not responding properly to sound, especially her right ear which was not responding at all. She returns to the ENT within the next several weeks to retest her ears.

Our new pediatrician diagnosed Meredith with asthma when we saw him a few weeks ago. We will use the same medication we use for Anna in the nebulizer (Xopenex or Albuterol), for Meredith when she has an exascerbation (flare up of asthma). So far, she's been fine.

Meredith will see the pediatrician again on Monday, April 14th for a check-up.

She will see the allergist on Monday, April 21st to begin testing her through labwork for food allergies as we believe she is allergic to dairy and soy as well.