|
More of Hailey’s History |
|
The doctors still weren’t very worried. They had us start her on Pediasure/Carnation Instant Breakfast, by 15 months she was consuming close to 3000 calories a day and had come back up to 80%ile. At her 15-month well-child we reported instances to the doctor that concerned us about Hailey and the bathtub. She would be playing in the bath and would stand up and turn stark white (pallor) and become a little “loopy” the pediatrician thought it might be absence seizures, but did not send us to a neurologist at that time (of course those instances turned out to be cold Urticaria). Although he did refer us to a gastroenterologist. At 14 months Hailey had been diagnosed with pneumonia number 2, her vomiting had become worse and she still had not had a solid bowel movement. She also continued to have bouts of croup and viral infections with high fevers and “mosquito bite” hives. She saw the gastroenterologist at 17 months for the first time and Celiac was number one on the list, her blood and stool were tested for a gazillion different things, she had a Cystic Fibrosis genetic test and sweat test, the genetic test revealed she is a carrier and the sweat test came back negative. Her Gluten antibodies came back slightly elevated and she was put on a gluten-free diet which DID help her diarrhea, diaper rash and vomiting a lot, the consistency of her stool didn’t change, but the frequency dropped tremendously. The endoscopy and colonoscopy were scheduled. She was sedated for the tests and the biopsies came back negative for Celiac, the gastroenterologist told us and showed us that she had “nodes” in her colon which had been biopsied and found to be eosinophilic and she had eosinophils in her small intestine as well, he, however, did not tell us what that meant, the diagnosis of Eosinophilic Gastroenteritis was made by an Immunologist almost two years later based on those biopsy results. Hailey battled off pneumonia number 3 at 23 months old and number 4 at 26 months old. Pneumonia number 4 was the first time asthma or RAD were suspected as she was wheezing when the doctor listened to her lungs. Hailey had sleeping difficulties of both natures (too much and too little); until she was gluten-free she slept between 15 and 21 hours a day. Once she went gluten-free and battled off pneumonia number 4 with orapred and albuterol (on top of abx), she stopped napping altogether and would sometimes sleep as little as four hours a day, however, she seemed to be much less tired and her attitude improved. She has nightmares almost 100% of the time if her Periactin dose is missed at night, they are not night terrors, however, she has gotten out of bed and run out the front door on several occasions believing she was being chased by something. She has, on occasion, taken her Periactin during her “awake” hours and she doesn’t seem to be sedated at all some of that could be the opposite effect that antihistamines can have on children, where they don’t sedate, they actually make them hyper, however, Benadryl knocks her out and she sleeps just fine when she takes the drugs at night, we have never noticed a sedating effect, just a lack of nightmares. We believe the nightmares may be RAD related, and the RAD is triggered by allergens, therefore making the Periactin helpful in preventing that, however, that has not been confirmed by a doctor. Hailey is a very difficult child, she is stubborn and aggressive, interestingly enough, when she is on steroids (inhaled or systemic) her attitude improves ten-fold, her sleep improves, and she is far less aggressive. Given the normal side-effects of steroids, it is incredibly clear that she benefits tremendously from the drugs, however the risk of osteoporosis and hormonal effects for a still developing girl keep her off the steroids most of the time. Hailey also had perioral dermatitis which started out as a hives outbreak from ranch dressing on her face, she required six weeks of zithromax to cure the infection. After that and several other severe outbreaks of hives (and a change in pediatrician) we were sent to the first of two allergists/immunologists, there they immediately diagnosed the Dermatographia and mentioned Cold Urticaria was a definite possibility. Two months later they confirmed Cold Urticaria and Reactive Airway Disease. When Hailey had some crazy outbreaks from snow we went back and they put her on the Periactin and prescribed the epi-pen. We were not aware that the Cold Urticaria could be anaphylactic in nature until two months after her diagnosis. Hailey went to the neurologist (almost two years after initially reporting the bathtub instances) to be evaluated for absence seizures, the best doctor we’ve seen yet, she had many histamine issues herself and immediately knew that this was not a seizure, she believed they were drops in blood pressure, related to the cold Urticaria and called them anaphylactoid reactions, apparently anaphylactoid reactions are anaphylactic reactions that the body resolves on it’s own and don’t require medical intervention. However, these reactions can quickly become full-on anaphylactic reactions requiring the epi-pen and emergency medical treatment. From there we went back to the allergist, he believed that it was a serious possibility. Hailey’s pediatrician sent us to another allergist at National Jewish, this is when I learned that our “old” allergist never had full records from the gastroenterologist and in fact the pediatrician didn’t either. I picked up copies of the records from gastroenterology on the way to National Jewish and the allergist/immunologist took one look at her biopsy results and diagnosed her. At this point they do believe that the EG, Dermatographia and Cold Urticaria are “food dependent” meaning there is something or a lot of things in her diet that must be present in order to produce these reactions, however they believe they are all independent of each other. There is also talk that the Cold Urticaria may actually be some kind of Cold Dependent Aquagenic Pruritus, however that would be incredibly rare, so nobody really wants to go there at this point, but she only reacts (at least that we have noted) to cold when the cold is wet, or she is wet and exposed to cold air. Generally speaking the definition of Aquagenic Pruritus (allergy to water) includes the fact that the water can be of any temperature.
Please check Hailey’s blog for more recent information! |
