Hunter & Karsyn's Journey with APS type 1

told me I had to have a c-section. Hunter was born 5-10-10 at 6lbs 4oz. And 20 inches long. He was prefect, his cord was wrapped around his neck, so he had to stay in the nursery at the hospital for 6hours so they could monitor his breathing. Once Hunter was brought out to me, I can honestly say that was the greatest day of my life at that time. We were released 2days later. Within a week we noticed small things, he sounded congested. So we took him to the dr. They told me it was normal for C-section babies to be congested and it was just a mucus plug and he would lose it soon. 2 weeks later he developed a small cough. Again they told me it was just from him being a c-section baby and it would go away. When Hunter still didn't get over his cough and congestion we repeatedly took him to the dr. They placed him on allergy medicine, cough medicine, breathing treatments, etc. when Hunter was 6months old he started running a high fever 102.9, we took him straight to his dr where they did x-rays. Hunter was then placed in the hospital with pneumonia. After a week there the dr decided to transfer him to Shreveport La. To a children's hospital. 3 days there Hunter was released. We got home everything was fine, until 2 days later. Hunter again started running a high fever 103.5 took him to his dr and he told me I could try Texas Children's Hospital in Houston Tx. On December 15th 2010, We drove 4 hours and when we got there Hunter was immediately hospitalized. After several x-rays they decided to do a swallow study. Hunter's results weren't good. It showed he aspirated all thin liquids into his lungs. The hospital then placed Hunter a NG Feeding Tube. We were released December 23(my birthday). Best present ever! We celebrated Christmas and even found out i was pregnant with Hunter's little sister Kayleigh. Hunter did great on his NG tube feeds. In Jan Hunter had a repeat swallow study, it still showed aspiration of thin liquids, but on thickened liquids he did fine. So we were sent home with Simply-Thick Honey, to add to all bottles. In Feb Hunter again started running a high fever. We went straight to our local ER. They then transferred him to Beaumont's hospital where he stayed for 11 days then was transferred to TCH on Valentines, in March while still hospitalized in TCH for the pneumonia Hunter went into liver failure. Worked around the clock trying to figure out what caused it. In April after several thousands of dollars of tests were preformed they had several diagnosis. Hunter was then diagnosed with APS type1, on April 20th 2011

APS type 1 info:
How common is autoimmune polyglandular syndrome, type 1? Autoimmune polyglandular syndrome, type 1 is thought to be a rare condition, with about 500 cases reported worldwide. This condition occurs more frequently in certain populations, including Iranian Jews, Sardinians, and Finns. What is APS type1:
Autoimmune polyglandular syndrome, type 1 is an inherited condition that affects many of the body's organs. It is one of many autoimmune diseases, which are disorders that occur when the immune system malfunctions and attacks the body's tissues and organs by mistake. In most cases, the signs and symptoms of autoimmune polyglandular syndrome, type 1 begin in childhood or adolescence. This condition is characterized by three specific features: mucocutaneous candidiasis, hypoparathyroidism, and Addison disease. Affected individuals typically have at least two of these features, and many have all three. Mucocutaneous candidiasis is a fungal infection that affects the skin and mucous membranes, such as the moist lining of the nose and mouth. In children with autoimmune polyglandular syndrome, type 1, these infections last a long time and tend to recur. Many affected children also develop hypoparathyroidism, which is a malfunction of the parathyroid glands. These glands secrete a hormone that regulates the body's use of calcium and phosphorus. Hypoparathyroidism can cause a tingling sensation in the lips, fingers, and toes; muscle pain and cramping; weakness; and fatigue. The third major feature, Addison disease, results from a malfunction of the small hormone-producing glands on top of each kidney (adrenal glands). The main features of Addison disease include fatigue, muscle weakness, loss of appetite, weight loss, low blood pressure, and changes in skin coloring. Autoimmune polyglandular syndrome, type 1 can cause a variety of additional signs and symptoms, although they occur less often. Complications of this disorder can affect the skin and nails, the gonads (ovaries and testicles), the eyes, a butterfly-shaped gland at the base of the neck called the thyroid, and the digestive system. Type 1 diabetes also occurs in some patients with this condition. Hunter also has several other health problems such as
-Autoimmune Hepatitis
-Chronic Lung Disease
-Central and Obstructive Sleep Apnea
-Difficulties Feeding/Eating
-Prior History of Aspiration Pneumonia
-Liver Failure
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