I am looking to find support from other parents and caregivers with children that have pancreatitis. My 7 yr. old son has bouts of pancreatitis that are a result of a rare gentic disorder called lipo protein lipase deficiancy. When my son was 3 months old we discovered that his cholesterol level was 7,000 and his triglyceride levels were 13,000. Over the past several years we have managed his lipid levels through a daily low fat diet as well as routine exercise. However, recently we have not been able to get his triglyceride levels to stay normal, thus resulting in frequent bouts of pancreatitis. Any information about children and pancreatitis would be greatly appreciated.
I am not a parent of a child with pancreatitis but I have hereditary
pancreatitis and I was born with it so I have been battling attacks my
entire life. I am 26 and my mother also had it but passed away when I
was 18. I don’t know that I can give the support you are looking for
from a caregivers perspective but I have been a patient of it through
childhood and now young adulthood so I wanted to let you know that I
am open to any questions or support that I may be able to give.
Lindsey
Lindsey,
Thank you so much for your kindness and willingness to be a source of support. After rereading my message, I realize that I should not have limited my request for support to just parents and caregivers. I welcome support and advice from anyone suffering from or that is affected by pancreatitis. I look forward to communicating with you. Thank you again.
Bec
Absolutely I am very open with my illness so please do not hesitate to ask anything you may have questions about.
Lindsey
Hi, I have been a member but have been gone for a long time. my grandson has pancreatitis. He is 8 years old. He has had this since he was 2. They have told us it is ideopathic. In other words, they have no idea why he has this. He has to take enzymes to digest his food. So, no pills, no food. He has not had an attack in over a year. From age 2-7 he had 15 attacks. He is finally gaining weight and is doing well. I hope things are getting better for you. I do not know alot about children with pancreatitis, but we are learning. If anyone wants to chat, i am at doreen3381@yahoo.com.
Hi Bec,
My 19 yr old daughter has hereditary CP and also my husband. It runs through his side of the family-so needless to say I have been a caretaker with this for many, many years and many, many procedures and surgeries. Even though both my husband and daughter have the same genetic problem the pancreatitis presents itself completely different in each of them.
She has it much worse and has just recently had the Puestow procedure because of continual blocked duct. But it never really goes away-it is a very tough disease and I have actually had both of them in the hospital at the same time a few times. When my daughter was going through a very rough patch, my husband’s stress level was so high because he feels so guilty for passing along this disease-that it put him in the hospital. So I have to try to keep both of them as stress free as possible(I know that is a HUGE factor for their cases).
So it is very difficult to be a caretaker(as with so many other diseases also, I am sure) with this. And I’m sure you are like me and always looking for the answer to this.
Please feel free to vent with me and even a good cry-it can really help to have someone understand what you are going through. Good luck to you and your son and please keep in touch-many wonderful people on this site, with alot of great knowledge.
Terri