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Child with pancreatitis
My 16 yr.old son has had what is diagnosed as recurrent idiopathic pancreatitis since he was 13. Hospitalized about 5 times and treated at home (no food, water and bed rest) when first signs of small pain starts. He has been on creon, nexium and a low- to no-fat diet since the beginning and recently on St. John's Wort for depression which is working very well. His attacks are comming more closely now.
The main questions my husband and I have are: 1.What kind of pancreatitis is recur. idio. panc.? is this an acute kind? 2. Each time he has pains are they outside warnings that the pancreatitis is eating part of it away? 3. can this progress to cronic pancreatitis and, 4.will he have this the rest of his life?
Thank you in advance for any information you can give us regarding this matter. We are very excited to have found this sight where people really do care. Thanks again.
The main questions my husband and I have are: 1.What kind of pancreatitis is recur. idio. panc.? is this an acute kind? 2. Each time he has pains are they outside warnings that the pancreatitis is eating part of it away? 3. can this progress to cronic pancreatitis and, 4.will he have this the rest of his life?
Thank you in advance for any information you can give us regarding this matter. We are very excited to have found this sight where people really do care. Thanks again.
Just to let you know, address change on my e-mail. It is now, pennie.***@****. Thanks and would appreciate it very much if you would use this new one for correspondence. Thanks again, Pennie.
Hi - read your comments and appreciate them. I am pretty familiar with cystic fibrosi and just learning about pancreatitis.
According to researachers at Duke University they say "The new study shows that in many patients with idiopathic pancreatitis, there is a genetic explanation for their condition. The gene involved in these cases of idiopathic pancreatitis is the same as the gene that causes cystic fibrosis." An associated press news article, September 1998 states: "The same genetic defect that causes cysstic fibrosis also appears to be involved in life-threatening inflammation of the pancareas, an ailment that affects about 100,000 Americans. Researchers estimate that the cystic fibrosis gene may play a role in about 10 to 15 percent of these cases, even though victims show no sign of cystic fibrosis". Log on to http://www.esiason.org/miscellaneous_research.html to read the rest. My daughter never really displayed the classic symtoms of CF except for nasal polyps. Then at age 13 a doctor suggested she have a sweat test (diagnoses CF) Well to make a long story short it came out positive even though she seemed very well. We are now learning that she is in a subcatagory of CF patients that don't yet have a lot of problems but unfortunatly, that subgroup does get pancreatitis and is pancreate sufficient. Most CF kid's pancrease's are burned out in the womb. That is why they are pancreate insuffiencient and always have to take enzymes with meals. I have so many questions I would like to ask you TazLady because we are new to this terrible disease but I have rambled on enough tonight. PennyS I would not worry to much about the CF thing. It is rare but something to keep in the back of your mind. No none in our family has it but we both had a recessive gene and suprise! Have a wonderful, beautiful daughter with CF and now pancreatitis - linked to her CF. Will stay in touch. Maybe we can learn together.
According to researachers at Duke University they say "The new study shows that in many patients with idiopathic pancreatitis, there is a genetic explanation for their condition. The gene involved in these cases of idiopathic pancreatitis is the same as the gene that causes cystic fibrosis." An associated press news article, September 1998 states: "The same genetic defect that causes cysstic fibrosis also appears to be involved in life-threatening inflammation of the pancareas, an ailment that affects about 100,000 Americans. Researchers estimate that the cystic fibrosis gene may play a role in about 10 to 15 percent of these cases, even though victims show no sign of cystic fibrosis". Log on to http://www.esiason.org/miscellaneous_research.html to read the rest. My daughter never really displayed the classic symtoms of CF except for nasal polyps. Then at age 13 a doctor suggested she have a sweat test (diagnoses CF) Well to make a long story short it came out positive even though she seemed very well. We are now learning that she is in a subcatagory of CF patients that don't yet have a lot of problems but unfortunatly, that subgroup does get pancreatitis and is pancreate sufficient. Most CF kid's pancrease's are burned out in the womb. That is why they are pancreate insuffiencient and always have to take enzymes with meals. I have so many questions I would like to ask you TazLady because we are new to this terrible disease but I have rambled on enough tonight. PennyS I would not worry to much about the CF thing. It is rare but something to keep in the back of your mind. No none in our family has it but we both had a recessive gene and suprise! Have a wonderful, beautiful daughter with CF and now pancreatitis - linked to her CF. Will stay in touch. Maybe we can learn together.
Thanks to both of you for posting to my questions. I feel so much for both of you especially seeing what my son is going through. I can't express how reassuring this makes me to be able to talk to others who are going through this. At least I know we are not alone. TazLady, as you have read my other postings on the other forum and this one, I am very determined to find the answers to these four questions (and you are so kind to help me with them).
Even if they have a sour ending, we must know. I am now over the shock and am looking for honest answers to this disease. I still believe in positive thinking and feel we will beat this so at least so he can live as good and happy a life as possible.
Thank you Squash for your messages. I sure do know how you feel being a mother - But we are going to help our kids no matter what and I feel education on this matter is a start. I will e-mail you soon. I am not taking e-mail right now because I have not told my son everything yet (he gets my email for me). He knows he has it and what to do, but not how bad it may be yet. Not till I talk to his doctor and get the answers we need which great people like you guys are giving us.
Thanks to you both and God Bless, Pennie
Even if they have a sour ending, we must know. I am now over the shock and am looking for honest answers to this disease. I still believe in positive thinking and feel we will beat this so at least so he can live as good and happy a life as possible.
Thank you Squash for your messages. I sure do know how you feel being a mother - But we are going to help our kids no matter what and I feel education on this matter is a start. I will e-mail you soon. I am not taking e-mail right now because I have not told my son everything yet (he gets my email for me). He knows he has it and what to do, but not how bad it may be yet. Not till I talk to his doctor and get the answers we need which great people like you guys are giving us.
Thanks to you both and God Bless, Pennie
Hi - I have as 20 year old daughter that was just diagnosed with chronic pancreatitis. She also has cystic fibros but not bad. Anyway I have been doing a lot of research and idiopaathic pancreatitis has just in the past couple of years been linked to the cystic fibrosis gene. It does not mean your son has CF but this does explain the idiopathic part of it. Log on to http://www/pslgroup.com/dg/ad3e6.htm. As to what the future holds - I have the same questions because we just found out about my daughters pancreatitis. It's ruining her college life. Email me if you want at ***@****. Good luck.
Thank you both, TazLady and Squash. Decided to give out my e-mail address should you need to talk also: ***@**** I am thankful for your info and hope to hear from you, God Bless Pennie.
Hi Squash,
I know of the possibility of developing CF with pancreatitis. It is a realativly low number. And I know that there is a blood test that can test for a mutated CF gene or Trysinogene gene. Both are known to cause CF. My doctor told me that Idiopathic pancreastitis does not necessarily mean you have CF, or will develope it. It means that they do not know the orgin of the disease. Did your Dr. tell you differently? There are as many different answers to this disease as there are doctors. Wish just once, that the doctors would be in agreement about something.
TazLady
I know of the possibility of developing CF with pancreatitis. It is a realativly low number. And I know that there is a blood test that can test for a mutated CF gene or Trysinogene gene. Both are known to cause CF. My doctor told me that Idiopathic pancreastitis does not necessarily mean you have CF, or will develope it. It means that they do not know the orgin of the disease. Did your Dr. tell you differently? There are as many different answers to this disease as there are doctors. Wish just once, that the doctors would be in agreement about something.
TazLady
Hi Penny,
I read your post from the other pancreas forum.
All idiopathic means is the doctors can not determine how the person got pancreatitis. 70-80% of all cases are from alcohol use and abuse. Obviously that is not the case in your senario. I am an adult (37) and have found it a trying thing to convince the specialists that I do not drink, nor did this happen because of drinking in the past. I haven't drank alcohol for 12 years and before that it very light drinking. Maybe a beer or two here and there. I have been having problems since 1999. So you can do the math in my case.
I read what your son has been through, and at such a young age, and my heart goes out to you and your family. With God's help and blessing's, you will all get through this just fine.
TazLady
I read your post from the other pancreas forum.
All idiopathic means is the doctors can not determine how the person got pancreatitis. 70-80% of all cases are from alcohol use and abuse. Obviously that is not the case in your senario. I am an adult (37) and have found it a trying thing to convince the specialists that I do not drink, nor did this happen because of drinking in the past. I haven't drank alcohol for 12 years and before that it very light drinking. Maybe a beer or two here and there. I have been having problems since 1999. So you can do the math in my case.
I read what your son has been through, and at such a young age, and my heart goes out to you and your family. With God's help and blessing's, you will all get through this just fine.
TazLady
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