My Name is Aaryn Dalton, I am Kyle’s mother & this is Kyle’s story.
Kyle was born on May 15, 2005. He lives in rural New Mexico with his father, Josh, his younger brother Tyler (2) & myself. Josh & both our children suffer from a rare blood disorder called Hemolytic Anemia or Hereditary Spherocytosis, this is where the marrow produces blood cells that are shaped like spheres causing the spleen not to recognize the blood cells as it’s own & therefore the spleen destroys the blood cells & increases the number of white blood cells to ‘fight the infection’ that doesn’t exist. This of course complicates everything! Josh & Kyle have very mild cases, Tyler on the other hand has a more severe case. I was so busy tending to my younger child who was very (obviously) ill that I pushed all of Kyle’s symptoms aside as ‘normal childhood’ illnesses & viruses. I never imagined that he was suffering from something so complicated & so painful. After reading some of the stories on the web page, I am just shocked at how blind I have been & all this time my baby was suffering. I never put anything together & now it seems so obvious, so ‘in my face’. I feel like I have failed my son, like a failure as a mother. However, I will not let him down again, & with the good Lord on our side we will beat this.
Kyle is a (very active) 3 year old boy that has just been diagnosed with EE by the wonderful team of GI doctors @ Denver Children’s Hospital. It has been 13 months since Kyle began showing symptoms ( we thought). As I sit here with tears streaming down my face I am thankful that the Lord has led us to such an amazing team of professionals (all women!) to help this amazing child. I know very little about this disorder, but from what I have been reading Kyle may have been suffering all his life & the disorder has been slowly progressing.
At approx. 12 months of age Kyle began experiencing excruciating abdominal pain & difficulty having bowel movements. He would literally curl up into a ball on the floor, crying & screaming in pain. These episodes would range from 10 minutes to 45 minutes at a time & would occur several times a day. During an abdominal ultrasound done to check for gall stones (which are common with the blood disorder) which were thought to be causing Kyle’s abdominal pain & inability to have bowel movements; the doctors found that Kyle has 2 accessory spleens, but no gall stones. The accessory spleens were quickly determined to be the cause for Kyle’s constipation & pain, we were directed to laxatives & suppositories. (Kyle will under-go a splenectomy at age 5.) These seemed to be helping, though not alleviating the constipation completely. Just a few short months later Kyle began waking during the night screaming & kicking, seeming to be fighting with something or someone; even me when I would try to hold him or comfort him. After weeks of sleepless nights Josh & I finally convinced the doctor that something was wrong. Kyle was diagnosed with Night Terrors & was put on Valium, to be taken at night just before bed time to help put him into a deep sleep. We thought this made sense, after all I had leg cramps & problems sleeping as a child; maybe it was hereditary. This was not working though. So, Josh & I thought maybe a new bed would help; that maybe, just maybe, Kyle was too active a sleeper for a toddler bed, so we moved the queen sized bed from our guest room into Kyle’s room (sorry Mom & Dad!). This seemed to help but only a little. Almost simultaneously, Kyle began coughing a lot. The coughing seemed to be endless; while he was playing, while he was sleeping, while he was not doing anything’ he was diagnosed with Childhood Asthma. We were assured that he would out grow this but for the time being, Kyle was put on an Albuterol Inhaler & Pulmnicort nebulizer treatments ( he was already on Xopenex nebulizer treatments for seemingly constant sinus & upper respiratory infections). Josh & I both quite smoking & that also seemed to help a little. Again, life began to normalize a little for us, but again this was short lived. Just a short while later Kyle began vomiting non-stop, sometimes 8-10 times a day. He was once again crying out in abdominal pain & also having diarrhea 4-5 times a day. Both these symptoms would come & go. He would have projectile vomiting for 2 or 3 days then he would be fine again. He would have diarrhea in the same pattern. The vomiting would hit with no warning at all; one minute he would be playing, the next minute he would begin vomiting multiple times sometimes dry heaving also, then he would go right back to playing as if nothing was wrong. I was so confused! I would take him to the doctor & they would find nothing. The child has had so many ‘viruses’ that he ought to be immune to them! Shortly after the vomiting started Kyle was admitted into the local hospital for uncontrolled vomiting & dehydration. He had lost 4 pounds in 3 days. Though Kyle never did have a huge appetite, he was growing ok & his development was always very advanced so the thought that something bigger was going on here never occurred to any of us. After 4 days in the hospital & no improvement our family doctor (who is an absolute God send) determined that Kyle needed to see a Pediatric Gastroenterologist; she referred us to Denver Children’s Hospital in Aurora Colorado. That was Christmas 2007.
With in a week I had spoken to Dr. Stephanie Petersburg several times & we had an appointment for what would be the first of many scopes for Kyle. It was determined that Kyle was suffering from GERD; he was placed on 15mg of Prevacid twice a day for a period of 6 months, then we would revisit Dr. Petersburg. The follow up went well, Kyle was showing signs of improvement. Dr. Petersburg wanted to try to slowly decrease Kyle’s intake of the Prevacid to see how he reacted. With in a few days of being off the medication his symptoms began to increase again. So, back on the medicine we went but only once a day this time. This seemed to be sufficient for controlling his symptoms for the most part, but again this was short lived. In December of 2008 Kyle underwent his second scope where biopsies showed a large number (15) of eosinophils & Kyle was officially diagnosed with EE.
I encourage every parent, family member, or friend out there reading this that has somebody or knows somebody dealing with this disorder to stay strong, stay supportive. Remember what these children are fighting is difficult & strenuous on them physically, mentally, & emotionally. Children are not always equipped with the words or the ability to communicate their pain or their fear; so take a moment when your child is acting out to realize that they are overwhelmed. Put yourself on their level, try to understand what they are experiencing & try to help them cope in a loving way.
In retrospect, our fight has been long & difficult, but our toil with this disorder is just beginning. We have been blessed with an amazing support group of family & friends (Thank You all) & a great team of doctors. Our Lord shall strengthen us to fight the battle set before us. He will give us the strength, the patience, & the comfort; we need only to believe & stay faithful.