Hello everyone! I've briefly touched upon what Chronic Pancreatitis is before, but I haven't really gone into detail about how it affects Shade's life and our lives. Like many diseases, Chronic Pancreatitis affects each individual uniquely. That means that while he may have symptoms in common with others, they may have several symptoms that he doesn't have or vice versa. Shade is lucky in that he doesn't have much pain in between bouts of Acute Pancreatitis. He also can eat pretty much whatever he wants without additional pain in between attacks. This is not the case for all. However, Shade has frequent, sudden Pancreatic Attacks where he is in excruciating pain and must be hospitalized for about 6 days each time. Each time we go to the ER and wait for hours while they process his bloodwork to determine if his Amylase and Lipase(pancreatic enzymes) are elevated and get him admitted to a room. The worst part of the admission process is getting the IV. Shade does not cope well with this at all. Remember, he is 9 years old, but with his Autism, he is more on the level of a 5 year old in many ways. He gets so scared and sort of zones out and screams and cries and begs the nurses to stop. He has even screamed "Mommy, why are they torturing me? Make them stop!" No amount of distraction or loving reassurance helps. The worst part is that his veins are not handling the frequent use very well and so it is hard to get the IV in a good spot and keep the vein from blowing. Afterwards, the only thing the doctors can do for him during an attack is give him nothing to eat or drink by mouth, hook him up to IV fluids, and give him pain medicine. Sometimes the medicine works fabulously and other times we have to pull out every trick in our bags to distract Shade from the pain until he can get his next dose. This is exhausting and gut-wrenching. To watch your baby suffer and not be able to make it better is the worst feeling in the world. It is so unfair that this innocent child has to go through all of this.
In between attacks, he must take large pills with everything he eats. The pills are enzymes to help his pancreas not work so hard to digest his food. Due to the acute attacks, he has permanent damage to his pancreas and it no longer works the way it should. He will have to take these pills with every meal or snack that he eats for the rest of his life. That is tough for anybody to grasp, let alone a kid. When he was first prescribed enzymes, he didn't swallow pills and we had to teach him how. We were so very, very relieved that he caught on quickly and even though he gags every now and then, he takes his medicine like a champ! Sometimes he even reminds us that he needs them. smiley
In addition to all of the trauma of the attacks and the hospitalizations and the hassle of taking pills all the time, Shade has missed a lot of school due to his disease. For a kid who already has trouble socializing, this is not good. It is hard on him to have his routine disrupted. Also, he has had to miss several school field trips and class performances because he was in the hospital. It's tough because we want him to get excited about special plans, but we've learned not to play things up too much just in case he has to go to the hospital. We never know when it is going to happen. We live in constant fear that today will be the day he has another attack. It makes it very difficult to plan special things and it is heartbreaking when Shade has to miss out on fun times. Don't mention "Suessical the Musical" in our house or you're sure to produce tears as Shade laments that time that he missed it because he was in the hospital. He doesn't understand and honestly, he shouldn't have to. I know life isn't fair, but it has been extra unfair to him.
Despite all of this, we have hope! We know that there is something that can help Shade and we are striving to make that happen. You can help him live a life free from Pancreatitis by donating. We also have hope because of stories from other children who have gone through this horrible disease and come out of it living life to the fullest. The Foundation for Childhood Pancreatitis was started by several Moms of children with this disease and they are an excellent source of information and support. Shade has a short part in a video that they produced which you can watch below. To visit their website go to http://www.childhoodpancreatitis.org/
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