Heroes come in ALL sizes
The end of 2019 had brought many days of missed school and the longest "episode" to date of pancreatitis for Jay. He now has a team of doctors at Children's Hospital: Pediatric Pancreatitis doc, Pain doc, and Psychologist.
From May 2019 to October 2019, his elastase test results have dropped (measures the function of the pancreas), categorizing him as an EPI patient. EPI is short for Exocrine Pancreatic Insufficiency. EPI is a condition characterized by deficiency of the exocrine pancreatic enzymes, resulting in the inability to digest food properly, or maldigestion. This is caused by a progressive destruction of the pancreas and it's tissue. Here is a link better describing EPI... https://pancreasfoundation.org/patient-information/ailments-pancreas/exocrine-pancreatic-insufficiency-epi/
From May 2019 to October 2019, his elastase test results have dropped (measures the function of the pancreas), categorizing him as an EPI patient. EPI is short for Exocrine Pancreatic Insufficiency. EPI is a condition characterized by deficiency of the exocrine pancreatic enzymes, resulting in the inability to digest food properly, or maldigestion. This is caused by a progressive destruction of the pancreas and it's tissue. Here is a link better describing EPI... https://pancreasfoundation.org/patient-information/ailments-pancreas/exocrine-pancreatic-insufficiency-epi/
This means that his disease is still progressing. In order for him not to become malnourished, he needs to take more medicine to help break down the food every time he eats. Three pills for every meal, and two for every snack.
Here's just a glimpse of a normal day full of pills... 3 viokace with breakfast, 2 with snack, 3 with lunch, 2 with a snack, and 3 with dinner. Then before bed: 1-2 vitamins (right now selenium, vit C, D, or E), 3 gabapentin, and 4 other supplemental gummies (fiber and vit B). He gags and almost always has to be reminded to take his medicine, but I guess if I had to take that many, I'd avoid it as well.
Oh and on bad days, add a few more pain relievers and the newest --migraine nasal spray.
Oh and on bad days, add a few more pain relievers and the newest --migraine nasal spray.
Jaylen is trying to keep up with everyone, even though we can tell his body is worn out some days. Basketball and weight training keep him active for this season. He asked me this year if he has a disease. It was extremely hard to explain chronic pancreatitis to our 14 year old without scaring him or crying.
H.O.P.E.
HOLD ON PAIN ENDS
https://pancreasfoundation.org/patient-information/childrenpediatric-pancreatitis/chronic-pancreatitis-in-children/H.O.P.E.
HOLD ON PAIN ENDS
