Anyone have a child with genetic pancreatitis? My husband (28) has had it since he was 8 and my daughter was diagnosed with it at 18mo. Would love to chat with anyone who has a child with this.
Hi! You are not alone! I know it feels that way. My son has HP also. He is 10 and was diagnosed at 5. My father had it as well as my cousin (his sister’s daughter). I am obviously a carrier, but have not been affected. My son is on a low fat and very vegetable and fruit rich (fiber? anti-oxidants?) diet and is actually very healthy, maybe 1-2 attacks per year now - knock on wood! When he gets an attack, he is kept home now and has just clear liquids and Tylenol with codeine for pain until Amylase and Lipase are back to normal. His attacks are so much less severe than when he was in the hospital. We are very lucky. He doesn’t feel very lucky at bday parties, etc. when he can’t eat the chips, french fries and pizza that the other kids are eating, but he is doing well. Dr. Victor Fox at Boston Children’s has treated kids for this and is WONDERFUL!!! I won’t ramble on now, but please feel free to write and if you have anything that has worked for you, let me know! DQ
Hello, I am new to the group. Interested in talking with other caregivers. I have two children with hp. My daughter was diagnosed at 2 and my son at 3. My daughter was very sick her first two years of life but we did not know why. My children are now 8 and 5. My daughter has been having a very good year. Only one hospitalization! My son does a bit better. His attacks usually don’t lead to a hospitalization. My daughter is on enzymes and there has been changes to her pancreas. Hope to talk with you!
It's so wonderful to hear from all of you. Sometimes this disease does make you feel so alone. I have 3 kids and praying the other 2 stay healthy. Did any of you notice early symptoms before diagnosis... like constipation? My husband has hp also and the one thing he and my daughter had in common as babies was severe constipation. Do you all notice that to be an issue too?
Jill
Hi,
I have sent you a message as I am an HP sufferer also.
Fliss
Yes, my daughter had awful constipation. It was so bad we had to treat it on a regular basis. It was horrible. We give both our son and daughter fiber daily to assist with this. My daughter has gotten better but when she was little - from birth to probably two it was horrible! We would try to clean her out at home but sometimes would have to go in and have her cleaned out. Fortunately we found something that doesn't taste horrible.
In fact one of the day cares we went to was going to make her drink prune juice before she could go out and play. She was already on so much to help her. Fortunately my doctor stepped in and said no way! My son has constipation but it was not as severe as my daughters. We only identified he had hp a few years ago although I was suspect. He would scream this terrible scream and wrench his stomack forward. At first amalyse and lypase did not show any elevation.
My daughter just had one illness after another when she was young. Also, they both have dry skin and asthma. I don't know if this is related to anything. I know when my daughter gets a cold (drainage) often times she ends up with an attack. Also, it seems that she gets sick in september october for some reason??? It has been a pattern.
Enzymes and diet changes have assisted in decreasing the amount of attacks. Pain medication and anti -nausea drugs have decreased the amount of hospitalizations.
Hi , I am 39 years old and have cp. I have 3 children, two of them have been diagnosed with hp. They were both diagnosed within a year from each other. And that I think was 6 years ago. My son is now 12 years and my daughter is 18 years. My daughter seems to have alot more flareups. She was hospitalized 6 times in the last year. My son was hospitalized 2 times. They both take enzymes and prilosec. When my daughter got her period it really caused her pancreas to act up. It seems to have something to do with her hormones. I can’t get a doctor to agree but we keep on trying. We are from a small town in Oklahoma. We have some really good doctors but are a couple of hours away. We have a family doctor in our town that does the best he can. God bless.
hello strawberry
yes i have suffered severely all my life with constipation but nothing as severe as when i became sick i thought it could not get worse well it did once a mo was my norm. now i take the powder laxative ech day and that is the only thing that helps me go.i hope this helps you cause i asked the same question earlier. thought i was the only 1 with the opposite from all the others mostly hear frequent bowel movments. hope this helped you. n my prayers are with you and ur family.
nancy
Hi I do not know if we have anyone in either side of the family with pancreatitis. But who really knows. There is an awful lot of diabetics in the family. My husband is deceased since 1997 but he had some of the same symptoms that my grandson has now. Hunter,my grandson, is the only one we know of that has been diagnosed with pancreatits. He also has Von Wildebrand along with his older sister. Hers is much worse. The only thing that has seemed to help Hunter is viokase medication, low fat diet and drinking lots of fluids. If he gets dehydrated he will get an attack, if he gets the flu or strep throat it will cause an attack. We have been told that not many children have this disease unless they have cerebal palsy or something else. Apparently this is not true just by finding this site. there seems to be alot of children. All we know is that as he gets older the attacks are less frequent. Hopefully it continues this way. Has anyone besides us…been told…this is terminal? We are nervous but keep living every day and just keep going. Write me a line…I am very very interested in learning more about this disease.
Doreen-Doreen,If your grandson inheritied this chronic pancreatitis, it is called HP orHereditary Pancreatitis. It is rare, but there are plenty of other children that have it and it is not terminal!!! You can learn more about it by doing a search for “hereditary pancreatitis” online. There is a lab in Pittsburgh (Univ of Pitt?) that does blood testing to see if it is HP for sure. Your local lab can just send the blood to them. My son is 10 and other than not being able to eat what the other kids eat (he eats very low fat - <10g/meal, 3 g or so for snacks) his life is totally normal, he is very athletic - 4 years travel hockey, soccer, lacrosse, and he healthy and happy and growing well. My cousin also has this and other than trouble during her pregnancies, she is doing well. My father also has it, but they didn’t know what he had and grew up on southern cooking (lots of fat!) and wasn’t diagnosed until his early 20’s by the Mayo clinic. He didn’t have many more attacks after that, but was diagnosed with Type 1 diabetes in his early 30’s. We think that maybe his pancreas stopped working altogether. But, he is now 65 and healthy. I can’t believe that you were told that only kids that have cerebral palsy have this!! HP is so misunderstood and so many doctors have never even heard ot it. If you have any questions, please write to me. I’ll help if I can! Try not to worry to much. I know we did when my son first got diagnosed almost 6 years ago, but there are so many worse things they could have. Best Wishes and Good Luck! Deb
Hello Doreen and Moe’s Mum,
I am 61 and have hereditary pancreatitis. I live on Merseyside in the UK and my specialist is Professor Neoptolemos at the Royal Liverpool University Hospital.
I have had symptoms of varying severity since the age of 5. 56 years of pancreatitis!! I have lived a normal life, studied, became a teacher, had two sons and am now soon to retire from my post as deputy headteacher of a large secondary school. Please do not think a diagnosis of pancreatitis is the end!
However, it is important to note that all cases are individual and each person will have different symptoms. Mine have sometimes been severe over the decades, sometimes much less so. Some patients have very mild symptoms while others have attacks which lead to hospitalization. I have never been hospitalized to date.
A great deal of research is being undertaken. Pittsburgh is a major centre. It was there that the main genes which cause HP were first discovered in the 1990’s. Liverpool is coordinating a number of European research projects into hereditary pancreatitis and other hereditary diseases of the pancreas. This is being undertaken under the title EUROPAC.
I sympathize with any child who suffers the pain of pancreatitis but, hopefully, Doreen’s grandson will be one of those having mild symptoms. I wish you all well and would be happy to answer any other questions about my experience as an HP sufferer.
Best wishes,
Fliss
hello fliss,
received your email, thank you . you give all of us hope . i do not have HP at least they have not said so. i developed pancreatitis from blockage due to gallstones in my common bile duct. it wrecked havoc on me i never been the same. i had an acth test done on wed (which is an hormone ) they are checking my cortisol levels they were low on the initial blood test. since doin the test on wed i have been in agony pain so intense in my belly and back with terrible nausea. on a lite diet and hoping it will pass soon. hate goin to the hosp. i hope all is well with you and again ty for sending me the email. hope to chat again soon.
nancy
My daughter has inherited Pancreatitis from her father. He inherited it from his father also along with his other brother. She was diagnosed at 5- Almost lost her- for 2 years our local doctors would not do the amylase blood test. Even though there was a history and they knew this. My daughter is 11 now and has had severe constipation throughout her life. She takes the powder med each day and sometimes twice a day. She has just gone through a battery of tests in Rochester last week and found that her pancreatic duct has enlarged to 6.6 in diameter. This may be the third set of stents for her. May 3 she will be getting an ERCP to find out. Otherwise if the Dr. feels this will not help her, then the Frey Proceedure. She has missed alomost 1/2 of the school year. Going in on Friday to discuss the 504 program that assists children that miss school due to illnesses that are out of their hands. Hope this works out well for her. She has gotten behind in some schoolwork because she hurts so much and is also afraid that she will flunk ohterwise. She does not need that over her head …HAS HAD ENOUGH ALREADY!!!
Jill, what exactly did your husband have done when he was 12? What surgery? Brianna is 11 and when she is feeling ill, which has been ongoing for months-NO EXAGERATION; is very VERY CRABBY- maybe combination of morphine, hormones and feeling sick. I want her to be able to live a normal life again also!!!
Don’t get discouraged Champ… I feel your pain trust me I do. My husband had a similar circumstance of missing school when he was a kid and they did summer school to catch him up. I highly doubt they would flunk your daughter over a medical condition. Have you considered home schooling her? I find that keeping my daughter in school helps because she is very social but I would highly consider homeschooling if she was missing a lot. My little girl has had lots of ERCPS and stents seems to do pretty well for her. She’s not real comfortable after the stent has been in for a couple months because they get plugged but using a big enough stent scarred the duct larger so all the enzymes pass better. Good luck with everything and WE ARE HERE FOR YOU. Drop us a line anytime you need to talk.
JILL
Doreen,
This disease is not terminal! I know many people that have lived long - HAPPY- lives with this disease. My daughter and husband have it as well as 3-4 of our extended family. My husband suffered severely from this from age 8-12. At age 12 they did an extreme surgery and since then he’s only had about 5 attacks. He’s currently 29!!! Even now when he does get an attack he’s says it’s much less then before the surgery. I’ve written about my daughters success she is not completely pancreatitis free but she went from more ill than I care to share to a happy 4 yr old living a very normal happy life. The hard part with kiddos is they have to learn to cope with something other kids will not. This is very unfair I know, but there’s a gift in the midst of the pain…
Don’t you appreciate the smiles and the laughs so much more?
Seeing them run and play is a gift than any average parent takes for granted.
And it’s my experience that kids that have gone through something this intense are the sweetest most loving, brave kids you will ever find.
Tasia is my hero!!!
I’m very determined not to let this ruin Tasia’s life. If her daddy got relief from it than so can she. And if Tasia can get relief than so can the rest of these kiddos. It’s just a matter of finding what works. Keep your head up, you WILL find what works. Don’t give up!
-Jill
Champ -
My husband was a patient of the very famous Dr. Lilly. Most specialist in this country have some connection to him and a lot of them studied under him. Back in the day it was unheard of for a child to have pancreatitis. Dr. Lilly did an experimental surgery very similar to the surgerys of today but at that time it had never been done. In fact there is not even a name for what my husband had done to him. But the goal was to re-route his intestines and have the lrg intestine directly connected to the tale of the pancreas. It’s very similar to one of the most common surgeries now (unfortunetly I don’t know all the names of them but have had consultations on several of them). Honestly it’s not hard for me to believe your daughter is dealing with this for months… that’s the way Tasia was. She got very serioiusly ill and it was only a miracle that saved her. But I’ll tell that story another day. Honestly we didnt’ start making some headway with this nasty disease until we started getting ercps and stents. One thing I did was get a recommendation to a doctor in Ohio that is supposed to be the best in his field and deals with pancreatitis in kids all the time. His name is Dr. Balistreri and he’s out of Cincinatti Childrens Hospital. I’m in Colorado but we did a big fund raiser and raised the money to send Tasia to see him and his team. Let me first say that our GI in Denver is cherished in our hearts and has helped us get Ta’ to the point she is now. But when I was at Dr. Balestreri’s office they knew exactly what I was talking about and didn’t seem surprised at anything. They told me we should try and get her a bit older before we consider surgery but they outlined her surgery that they would do if ever it was neccesary. Now our foot is in the door and they are part of our team. And boy does that feel good to have top specialists working together for my baby girl. The hard part is all the ERCP’s, gallblatter removal and hospital stays have made it super hard on us financially. But God is our source and He’s gotten us this far with Tasia’s health that I just have to trust him to help us through t he financial part too. Hope some of this info helps and glad to talk about it anytime. What is your daughters name? My heart is very heavy for you both as I know how hard this is. But just think of us and our families progess when you feel down and remind yourself that this too shall pass and you will get an answer to help her. Just don’t quit!
-Jill
My prayers are with your daughter.
Me, too. I’m not sure why some of these emails are going out to everyone.
I wonder if there are some kinks in the system.