Gary and I met in the Fall of 2003. And we have been together ever since! We have three beautiful, amazing, courageous Children who all suffer from a rare white blood cell disease called Eosiniphilic Esophagitis and Eosiniphilic Gastroenteritis. These conditions are also known as EGID's. All three of our children have asthma, eczema, and other aero digestive conditions they each deal with individually.
What is an EGID?
Eosinophilic gastrointestinal disorders (EGID) occur when eosinophils (pronounced ee-oh-sin-oh-fills), a type of white blood cell, are found in above-normal amounts within the gastrointestinal tract.
Eosinophils are important in your body's defense against parasitic infections (e.g. worms). However, they are also involved in allergy. In some individuals, eosinophils accumulate in the gut in response to food and/or airborne allergens and can cause inflammation and tissue damage.
The abnormal amounts of eosinophils can occur in the:
§ oesophagus (eosinophilic oesophagitis) EE/EoE
§ stomach (eosinophilic gastritis) EG
§ small intestine (eosinophilic enteritis)
§ large intestine (eosinophilic colitis) EC
§ throughout the gastrointestinal tract (eosinophilic gastroenteritis) EGE
My children can't eat hardly anything. The air they breathe makes them sick. Our friends and family's homes are not safe because of the severe reaction to pet dander they all three experience. Birthday parties, holidays, family parties, every event for school, etc. we have to stress, worry and prepare because the smallest amount of food can either kill them or make them violently sick for weeks. Nothing ever feels normal. The amount of medical bills has been catastrophic ending in two medical bankruptcies as we are on the heels of our third. It has robbed us of our plans for the future of things like family vacations, owning our own vehicles or even more a home. Every dime we work so hard to earn go straight to medical co pays, prescriptions, expensive allergy friendly foods or medical equipment and supplies. There is never anything left over. There is treatment, each of our kids need and we do not have near the funds we need to cover the costs. It is devastating to be repeatedly knocked down by the financial burdens of chronically ill children who have needs that as parents we cannot meet.
As parents we have learned more about life, people, and hope than we ever anticipated. Our path is far from where we planned or dreamed it would be but it is ours and we walk it with great appreciation and honor. We have three beautiful, smart, brave, little fighters. Who through more pain and trauma than most adults have experienced, are HAPPY, and HOPEFUL. They see the world with the intent to live it, and rise above the restrictions that have been put on them. They are examples of strength, and will to me. They Pull me through each day and remind me that we are so blessed. We have gotten to take each of our children home after life threatening complications of surgery, severe asthma attacks, run ins with MRSA, RSV, Rotavirus, C-Diff, pneumonia's and so much more. There are so many parents that spend months and months in the hospital or never have the chance to see their children grow up. For that we are blessed beyond measure. We are more grateful than words can describe. We continue to have hope.
Jaxen age 7
Jaxen was diagnosed with asthma at 8 months old, he had reflux, milk intolerances and allergies, eczema and a weak immune system. As he got older and new symptoms came Jaxens health declined. He began refusing food, and dramatically loosing weight. He had gained a few new allergies and we got a referral to see the gastroenterologist. Jaxen was diagnosed with an extreme lactose intolerance, and Eosiniphilic gastroenteritis. Jaxens caloric intake was far below his needs and he began dramatically loosing weight. He would vomit daily, and experience terrible stomach pain and motility issues. His growth had gone down by 45% and at age five barley weighed in at 40 lbs. Jaxen received a feeding tube in October of 2011 to supply him with the safe nutrients he needed badly. He had significant weight gain and began improving rapidly. Not too long after he was diagnosed with Obstructive sleep apnea in the spring of 2012 that would require him to use CPAP therapy. This was a problem because Jaxens feeding tube he received night feedings through along with the air that is pushed into the stomach through CPAP; could possible cause Jaxen to vomit during sleep and aspirate into his lungs. Our specialist's were at odds about how to treat Jaxen but started off recommending he have his large tonsils and adenoids removed. Surgery was scheduled for May 2012. Tonsil and adenoid surgery and a Uvulopalatopharyngoplasty (UPPP) it is typically a minor procedure but nothing about Jaxen is typical. Immediately after surgery Jaxens airway collapsed. He spent three days in the hospital before being sent home. We made it less than 24 hours at home before Jaxen was admitted again for emergency Uvulectomy and another UPPP surgery to try and open his swelling airway. He spent another 9 days in the hospital where he healed from a bleed and other complications of surgery . Jaxen began doing better and after a few months, was back to himself except for the Sleep apnea was not better. We were sent to see the cranial facial team at Primary Children's Medical Center for yet another Diagnoses of Mandibular dysplasia of the soft palate. This team of doctors did xray's test and MRI's before finding that Jaxen would also need a Tongue reduction surgery to give his small airway more room. We learned that during sleep his airway was still blocked by about 80 %. This surgery was the hardest for Jaxen to go through. Jaxen had a very rough post operative time in the hospital as we had learned he was very sensitive to IV pain medication. Jaxen's drive to breath on his own was nonexistent when the meds for pain had been given. Jaxen's doctors pulled the pain medication in hopes that he would not have to have a breathing tube re inserted. Watching Jaxen's struggle through the immense pain was almost more than we could handle as parents. No child should have to experience that. They were giving him Tylenol alone less than 24 hours after major surgery. We worked with many doctors and specialists to find another way to treat Jaxen's pain. After spending three days in the Pediatric intensive care unit Jaxen was moved to the surgical unit of the hospital were his sister had also just been admitted for yet another asthma attack. Having two children in the hospital was so hard. I felt pulled in different directions from each of them and the baby left at home why the rest of us were at the hospital. Jaxens experiences during the 11 days in the hospital were as of yet the most trying, painful, sad days in his 7 years of life. There is not a more helpless feeling as a mother want to fix or take away all the bad. Jaxen had a immune response to surgery that caused more severe swelling needing heavy doses of steroids to bring down the swelling. It caused some tongue paralysis and he is in even more desperate need of feeding therapy than before. He is swallowing a couple of small foods now and doing better each day. He has a 40% chance of needing one more surgery to correct his aero digestive disorder and weak airway. We are crossing our fingers that this surgery was his last. Within the next year Jaxen started complaining of headaches, severe headaches that would put him down and he would need to nap. they caused nausea and fatigue and he began sleeping on and off all throughout the day, he became more agitated in his sleep, restless, he would shake, flail, moan and throat itch loudly, scream, hold breath, wet the bed on particularly hard nights (which is super upsetting for him cause it isn't a normal issue for him) Jaxen's Brain MRI came back showing he has an arachnoid Cyst in his brain, and he has been having alot of increasing seizure activity on EEGs, His Nuero doesn't think the cyst is causing the seizures or migraines, and daytime somnolence. I am not sure what I think it is. Jaxens Nuerologist just thinks that the new symptoms are from the developing epilepsy. Jaxen experiences leg and muscle pains, joint pain, weakness and fatigue in his arms and legs. He will be getting an evaluation for physical and occupational therapy as well. So much of Jaxen's issues are not understood as to what's causing them. We are positive that his unknown motility disorder, and aero digestive disorders along with the rest of his diagnoses are caused from a genetic condition as all three kids have so many simulair issues. We keep adding on diagnoses even though we know and our specialists know there is an underlying issue that could help to make more sense and get him the adequate treatment but insurance has denied our claims for genetic testing multiple times now. Connective tissue disease is our current focus with each of the kids. In my mind this genetic testing is our top priority. If you know what your dealing with you can treat better and you know what to expect. Treatment can stop time stop or delay certain conditions as well. I really hate that insurance refuses to cover the cost of these tests when it could greatly improve the quality of life for my children. Jaxen is so affectionate. He is always hugging me, which I am so grateful for, he makes me feel so loved and appreciated. He has a giant heart and is very empathetic. He is so helpful in caring for his little brother and sister. Jaxen knows how careful we need to be with food in our house and his level of responsibility has always been so impressive to me. He is protective and kind. He is funny, smart and very matter of fact. He is fun and has a contagious laugh! He loves fishing, canoeing, playing soccer, swimming, video games, sledding, loves the snow, RC racing, fast Cars, likes helping his dad fix things, camping, building legos, watching the food network and funniest home videos. He is so responsible and wants to help others. I am so lucky to be his mom, he is one of my heroes. He has been through so much and keeps going!
All Grasses All Molds
All Weeds All Spores
All Trees Pollens
Pet: Dog, Cat, Horse, and Rabbit
Known Food allergies: Milk, Chicken, Potato, Corn, Beef
Dysphagia and loss of peristalsis (don't know why) Epilepsy, Organic Sleep disorder, Eosinophilic Gastroenteritis, Obstructive and central sleep apnea, Lactose intolerance, Allergic Rhinitis, Asthma, Mandibular dysplasia, Sensory Processing Disorder, PTSD, Gerd (Gastroesophageal reflux disease), LPR (Laryngopharyngeal reflux), Bradycardia, supratentorial arachnoid cyst, and an unknown motility disorder/ aero digestive condition.
Tieler age 5
Born in 2007, Tieler was a tiny 5lb 2 oz baby who seemed healthy until we took her home. Tieler would vomit up everything she ate and cry in pain 24 hours a day. She was not growing and constantly very sick. She was hospitalized 4 times in her first five months of life. He 4th extended stay at the hospital she almost received a feeding tube when they discovered her severe life threatening allergies. We were basically poisoning her when we fed her, due to her allergies of wheat, milk, egg, and nuts. She had also contracted a nasty virus in the hospital called C-diff that was making her very ill. Once we knew Tieler was severely allergic to many foods we put her on an expensive elemental formula and she was finally released from a 14 day stint in the hospital. Tieler was a whopping 9 lbs one ounce on her release at 5.5 months of age. She has always been our tiny princess. Tieler had been through so much at such a young age that she was very delayed physically she started receiving physical therapy so that she could finally sit at 12 months of age and walked at 20 months. She also has had occupational and speech therapy to catch her up with her peers. She has always been considered failure to thrive and was delayed at hitting every milestone. She has had 2 major seizures that the cause of is unknown and a history of possible absent seizures. She was diagnosed at the age of two with asthma and gained her fifth hospitalization, and spent a week at home on oxygen. She has had extensive allergy testing every three to six months her entire life. Tieler's testing has turned up more questions than we have received answers for. She was also diagnosed in 2010 with EGID in her esophagus. (Eosinophilic Esophagitis) Tieler's esophagus was full of eosinophils, damage and scarring even though she has been on strict allergy diets since she was born. Tieler has many anaphylactic allergies and after Blood testing we learned that Tieler's immune system attacks her own body with just about everything she can put in it. We have now chosen a few foods with the least allergic response and a98% elemental formula diet. She recently got an NG tube placed and is gaining weight and her skin is improving dramatically. Her vision is extremely impaired as she is near blindness legally without her glasses. She has a carnitine deficiency, without a known cause and is also in need of feeding therapy like Jax. She has trouble sleeping and can't run and play as long or as hard as most 7 year olds as she experiences severe leg muscle pains and tires easily. Tieler has not had it easy. She is not like any other little girl I know. Her innocence has given her strength in that she doesn't seem to realize how different and special she is. There is much to be learned of her conditions and we continue to see many specialists for clarification through testing. Tieler has had two more hospitalizations since her asthma diagnoses totalling 7 with loads and loads of steroids. She can't attend regular school as we feel it is not safe for her because of the amount of food allergies and their severity. In the last year Tieler has been loosing weight. She went from 42.5lbs on her 6th birthday to just 38lbs on her 7th birthday. We know that it is not because her caloric needs aren't being met because they are but she can't seem to re gain the weight and we do not know what's happening now within her little body. She has started "throat clearing" like Jaxen and it isn't due to her Eosinophilic disorder or her asthma. She has some new skin sores, and developed mega colon almost completely out of the blue without a prior history constipation, we have tried multiple forms of medication without success most likely it is assocaited with the undiagnosed condition. We do know she has a motility disorder, but our insurance denied our request to seek a motility specialist out of state for all 3 kids because there are not any pediatric motility specialists here in Utah. Tieler started physical therapy again this spring it has been helpful in teaching tieler how to strengthen and protect her joints as they are extremely hypermobile. The physical therapy will also address the hypotonia, muscle weakness and pain and breathing therapy. Now that she is not eatinf much and receiving most of her practically all of her nutrition through the feeding tube, she is having some symptom improvement with weight gain and skin healing! Victory! We are still looking for answers, Connective tissue disease is the current focus with Ehlers Danlos syndrome (EDS) at the top of the list. EDS is commonly diagnosed with eosinophilic disorders as well. We need to know what type of EDS they have as there are multiple types with different serious conditions and require monitoring and treatment. we have Hope that soon we will know more about her conditions to normalize her life just a little?! Tieler is our sunshine, She is our performer, singer, dancer, artist. She is very sensitive and doesn't have a mean bone in her body. She is so positive, with all she has been through She still keeps smile on her face! She is the easiest child to please and hates to see anyone sad. Tieler loves singing so much she "singtalks" Where all talking will be singing for a whole day. She makes life feel like a musical! She is such a fighter. She may be small but her heart and spirit are giant.
Tielers food Allergies:
ANA: Egg, Milk, Peanut, cashew, pistachio, pecan, sunflower seed, sesame seed, walnut, shellfish
Allergies: Egg, Milk, peanut, almond, pecan, hazelnut, pistachio, cashew, walnut, oranges, pears, apricot, watermelon, onion, chicken, lamb, Turkey, soybean, broccoli, oats, rye, fish, cat, dog, horse, rabbit, mugwort, ragweed, pigweed, timothy grass, elm tree, oak tree, Bermuda grass, mouse epi, barley.
Current Diagnoses's: Eosinophilic esophagitis, food and environmental allergies, GERD, Asthma, Carnitine deficiency, And some undiagnosed health conditions.
Boston age 2
Boston was our surprise baby. We planned he would be our healthy child But he isn't cooperating! He was also our biggest baby at 6 pounds 8 ounces. He was healthy, slept through the night and was happy as could be. We instantly noticed something wasn't right when he would choke over and over again. Boston was diagnosed with silent reflux and tested for allergies at 3 months old. He was positive for milk and eggs. We put Boston on the same elemental baby formula Tieler was on and he did well. He grew and was mostly healthy. Boston had RSV at 9 months old and was also diagnosed with Asthma. Like Jaxen he had multiple ear infections and received tubes at the same age his big brother did at 11 months. He was scoped soon after to determine if he had the same horrible disease his siblings had. Boston had a bad case of esophagitis but no eosinophils! we were happy but still unsure as his list of food allergies grew with tri monthly testing. At the time of his first scope he was eating a few fruit and veggie baby foods and elemental formula so we knew there was a chance the disease could expose itself after he got older and ate more of a variety of foods. As Boston got older he continued to be our more healthy baby. We began to see that he was refusing a significant amount of foods. He would not eat anything crunchy or hard just soft sweet foods like fruit and yogurt. Not long before the beginning of 2012 Boston had his adenoids removed for obstructive sleep apnea as well. He seems to be more and more similar to Jaxen's health conditions up until the last few months. Boston had not grown in 8 months and had lost some weight. Our gastroenterologist recommended we scope again to look for the eosinphilic disorder. This time she came out immediately following his endoscopy to tell me that his esophagus looked bad just like Tieler's and he did indeed have Eosiniphilic esophagitis. Before creating a treatment plan she had Boston get a more extended list of food allergy testing done to find the cause of his eosiniphil production. After removing multiple triggers from his diet we scoped again november 2013 and his number were almost double what they were before. symptomatically it is one of the hardest conditions to maintain because it is food! you need it to survive but for us it can also kill you. It is heart breaking to have your child cry and beg you for food and they refuse the few things they can have. For our family we have been able to base their treatment of their skin testing but for 50% of people who suffer from this disease skin testing is not accurate or is negative and they must find each allergen by performing multiple endoscopies. Boston is like the other 50% go figure LOL. He is starting new, from square one. We will be treating his disease completely differently from his siblings as we will follow his skin testing and trial and error testing through endoscopy. Boston started having facial swelling last fall and we have done some testing that normally would show conditions that would cause this type of edema. ENT said on CT the face just showed fatty tissue were the swelling was but they also noticed his sinuses where malformed and not draining at all and infected he spent 6 months on and off antibiotics but it kept coming back after each one. His nose, ears, and sinuses do not drain properly. He recently had another ear infection that would not go away. He had blood and infection draining from the ear and we soon found out that he had two separate types of MRSA draining though his ear but from the sinuses in the face. We set up a surgery day for a FESS (Functional endoscopic sinus surgery), Turbinate reduction, and his ear tubes removed along with granulation tissue and paper patch placement. All three procedures where done in one day. He stayed over night because he required oxygen and he was able to go home the next afternoon. He has still been recovering from the surgery so we are not yet to the place where we know if it is going to make things easier for him and be considered successful but it helped us avoid a 4 week hospital stay and strong picc line antibiotics. Boston is so sweet he is my snuggle buddy, and a huge mamas boy. He handles pain, and his treatments so well even more so for his age. I am so thankful that even though boston was a surprise and we were done having kids I know god knew I needed this snuggly boy desperately. I am so grateful he had a different plan for us and knew Boston was apart of it. He has brought so much joy to myself and Gary. Bostons favorite things to do are whatever Jaxen and tieler are doing, he wants to be just like them and enjoys playing with them most. He has a great imagination, loves to ninja fight, play GI Joes, Legos, and swim. Boston loves bugs, He calls them his friends and likes to pick them up and bring them inside in his insect carrier (which is currently a rolley polley graveyard) he likes to color with Tieler and have nerf battles in the back yard with Jaxen.
Food Allergies: Milk, Egg, Almond, Pecan, Peanut, treenuts, Rice, tomato. So Far...
Pet Allergies: Cat, Dog, Horse, rabbit
Bostons Diagnoses's: GERD, Eosinophilic esophagitis, sleep apnea, Asthma, chronic rhinosinusitis, sensory processing disorder, speech delay, tongue thrust, dysphagia, and esophageal achalasia, and an unknown motility disorder and aero digestive disorder.
The last 3 years have been particularly rough as my husband's health and my own has added to the financial, emotional and physical hardships we have previously survived. My husband Gary became ill in February 2012 with our first cancer scare. Gary had two tumors and some layers of the side of his bladder removed. He was treated with chemo therapy and is currently cancer free. Bladder cancer has a ridiculously high chance of reoccurrence so he will receive bladder scopes every three months for two years and every six months after for the rest of his life so that it can be again caught early and treated effectively. Not too long after Gary recovered I began feeling unwell but continued to work and care for my children as best that I could. It has been a nightmare after loosing an unintended 73 lbs of weight, experienced muscle wasting, the inability to control my blood sugar with a severe reactive hypoglycemia. Vitamin B12, potassium, vitamin D, DHEA and Folate Deficiency ( I receive injections every 3 days), Adrenal insuffiecency, Interstitial cystitis, Polycystic Ovarian syndrome, Pots, and Ehlers Danlos Syndrome. I have had 4 surgeries in the last three years with life threatening complications. It has made caring for my 3 special angels so much harder being sick myself.
We have been blessed mostly in our life with the people god has placed in our path. We have some amazing family, friends, co workers, and some complete strangers who have sacrificed their time, money, physical and emotional states to be by our sides and helping how they can. It is hard always being on the "needing" end of every relationship you have. I would give my right arm to just once be able to do something amazing for the people who have helped us get this far. It would be the most wonderful gift to treat these people to something wonderful for all that they have given us but like most other things in our life there is not any money or time left after caring for our families most basic needs to do anything. Our finances revolve around catastrophic medical bills. We have moved from rental to rental because our medical debt takes away the possibility of home ownership. Rentals are risky in the sense that people have had pets previously in homes, and we are unable to afford the luxury of choosing a home that is safe to live In and breath in for them.
Our current insurance will not cover multiple types of therapy each of the children need, they do not cover out of state specialists, we desperately need to be able to work with specialists and clinics out of state, they do not cover our elemental formula that all three kids are on and need which without coverage is almost 5,000.00 a month just for formula. We spend anywhere from 700.00-1000.00 a month after insurance in prescriptions for the family. We spend a few hundred a month for our medical equipment, each month after insurance. We have large copays for appointments, procedures, treatments, testing and monitoring, and surgeries. Allergy safe foods are also ridiculously expensive. Our grocery costs are higher than the average family and we eat way less food. The financial aspect of our life has been equally devastating as having kids with special needs in general because no matter how hard you work, there is never enough money to cover the costs. We are currently attempting to raise enough money through fundraising to get all 3 of our children Genetic Testing first and then hopefully to the specialists at Cincinnati Children's hospital as they have one of the largest departments in the world for eosinophilic disease.
The difficulties we have experienced make me appreciate life and the people in mine more than I ever could have under different circumstances. It has made me one of the toughest moms out there, who is willing to do just about anything to give her children what they need. I know our journey is special. And when I think I can't do it anymore I try to remember that I know my children will be compassionate, courageous survivors who will bring joy and be an example to others who are suffering, giving them a reason to fight in hard times and to never give up. I hope that our story gives others Hope- to get through whatever hardship they are facing.
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