Gidday Sheila
Chidhood Idiopathic Acute or Chronic pancreatitis is devastating. I will let Ambers Mom and Dad to tell their story with the unhappy ending.
#1 Develop a F&ED [Food % Event Diary] WQhen an attack or episode happens, then write down everything he did in the previous 6-12-24 hours. Often the TRIGGER will hvae been in the prior 6 hours, but we are all different.
Stress, Cold and lack of heat can be trigger features for people.
Each of us have a unique set of triggers tho.
Hot spices attack me, cayenne, chili and all those good ones in mexican and asian food can attack the pancreas.
Roasted Meats, perticularly Beef and Sheep seem to attack the pancreas. Skinless Chicken, Fish, non oily, and lean pork with all fat trimmed off b4 cooking.
Mild spices are very often fine, I can eat mega garlic with no hassles.
When I am "delicate" all physical movement will cause aggravation, Standing, vendbing, twisting, stretching and all the other ones will aggaravate my panc.
Tomato and PApples can attack you, with the food acids, funnt this one can be a bit hit and miss but if it is attacking the KID, then cut it out.
What you need to do is record faithfully over time, keeping it in a database or spread sheet. Look at it for patterns and if you don't see them, take it to you medical team.
Next #1, get the best pancreatic doctors you can, just cos they qualify, they may not be the most effective. Check out Celeste and Jerry story where they went to 59 doctors until they found the right one for them. Don't EVER settle for second best. Also, asking questions about what they said last week will help to build respect with your medical team and educate you.
Don't underestimate respect.
When facing up to an appointment, write down all your questions and make sure you get answer. Remember you can ask for written answers, even email.
Above all, research, research and more research will be your friend. Don't go looking for answers, look for questions to see if this is relevant to your son.
In the acute phase, this can KILL you, much less so in the chronic sphase.
None of us here are medical doctors, so take NOTHING We say and your medical team will have access to the total files with your son's condition. We talk about our lives and medical adventures and misadventures. We will talk about medications and doses, but do not listen to us. The WORST thing you can do is turn up to a doctor with a list of demands for meds etc. That will cause you to lose face badly. If you have got medical queries, then ask your medical team.
Anytime surgery is mentioned, get a 2nd opinion, and then get another 2nd opinion, and then get another 2nd opinion. Then get some more. Up til the mid 90s, there was a 30% mortality chance just from cutting into the pancreas. Thank fully it is now generally less than 1%, but they have specialised, Some Whipple, Puestow, Roux Y N etc, and there are variaties for all of these, find the best in the discipline and then recondser going ahead.
Folks here and at other medical forums, means there is a lot of personal stories, for and against these procedures.
I don't believe in luck or religion so what I will say is be the best son supporter you can be. Be his mom and dad and guardian. Research like madmen, follow CJs links, she is regonised as our best web scavenger. Talk to everyone, even the nutters, and get great questions to put b4 your medical team, don't be afraid to sack them and seek out better ones, after all, it is a LIFE we are looking at the mo!
WHAT IS WRONG WITH HIS PANCREAS?
Are they suggesting surgery?