Nikki-A Mother’s Story
My familiy’s life has changed forever….
I am a mother of a son that has been diagnosed with Hereditary Pancreatitus. He was diagnosed this last March 2010. My son was staying at his grandparents house while my husband and myself went to a wrestling tournament with our older son. I received a phone call and my mother-in-law stated we needed to come home. I heard Derek in the back ground screaming and telling me to call 911 and put him out of his misery. I told them to take him to hospital which they did. I left the match and headed 2 hours back home and met them at the hospital in Apple Valley. As soon as I arrived the Dr. stated that Derek had pancreatitus. Any trauma he asked I state no he was a football player but that ended in November when they won the Superbowl. He then did a CAT scan and ultrasound to back up the diagnosis and it did. He contacted Loma Linda Medical center to transport him since there are no pediatric Gastroenterologists in the area. We ended up there that night and they started to give him Diloted. He was in terrible pain. The Dr. came in and stated that they needed to pretty much starve him for 5-7 days just IV fluid. It seemed to work with the meds and the IV fluids. However, they ran tests Lipase was 2917 and slowly going down. Finally it went down. Sent us home with pain meds and pepcid. Before we left they did another test for the mutated gene. They stated that they would more than likly not find out what caused the pancreatitus. The test would take approximately 4-6 weeks. Derek had returned to hospital 1 week late in pain the lipase was not elevated but still in pain. Another week went by and he still had some issues. We just observed him. After 4 weeks had passed. I call for the results and the nurse said that the Dr. would call me due to them receiving the results. it seemed like and eternity. The next morning I got the call Dr. Bultron calls me and states that the results came back positive that derek’s prss1 gene in mutated. What does that mean?, i asked. He has Hereditary pancreatitus. I asked what does that mean he explained. That was the most difficult thing to swallow my perfect son had a condition that is rare and we would not know his fate. Even though he was still on a strict low fat diet he still was in some pain. A week went by and he went back to hospital this time they kept him and treated him the same as pancreatitus. He is only 9 and now is scared that he could die or get cancer and die. He has received many awards for baseball and football however the Dr said he still wants him to be a kid and allowed the sports for now he is terrified. My son is very emotional and now would like to get involved to help a cure. He knows that there is not a cure but maybe in the future. He talks about how when he gets older he doesn’t want his children to go through the same. I have 3 other children hopefully they will not be diagnosed with the same. We have no clue how Derek got this gene but no one in the immediate family has had pancreatitus. We are still at a loss and hopefully in the future we will understand this disease.
Nikki, I know what you are going through. My 12 year old son has suffered with chronic pancreatitis since around the age of 6. He is in the hospital with pancreatitis right now as I write this-his third flare up this year (and many more before these). He is also on a strict low fat diet and he takes digestive enzymes. From my understanding, our son has 2 out of the 3 genetic mutations that are looked for in someone who has chronic pancreatitis. If I can say anything about our son’s ordeal, it is this: Only God can carry us through this horrible disease. We can only trust Him day by day and sometimes minute by minute as we watch our son deal with the sufferings of his painful pancreatitis. I will pray for you and your family.
I thank you so much. We are very scared and now was told no football. He is taking a medication that somewhat bypasses the pancreaus. Now we are going to get a lab done to check the stool for fat and if he does have it then we are on enzymes also. Please let me know what happens my son has been in the hospital 3 times this year so far just need someone to talk to that understands.
Nikki,
My son is now 12. He was diagnosed initially with hereditary pancreatitis in early 2007. In 2008, he had numerous flareups and six hospitalizations. In October 2008, he had an ECRP done and was found to have pancreatic divisium. He had four stents put in to open the ducts. Since then, he has been doing okay. He stays on a strict low fat diet. At present, he does not take pancreatic ezymes. He does have lab work done on a regular basis to insure that he does not need the ezymes. Since the ERCP, he has four to six flareups a year and one to two hospitalizations a year.
My son also liked playing football and karate, and can no longer participate in those sports. We have been able to redirect some of his interests to other things. He now loves drama and writing.
I feel your need for someone to talk with who understands. When my son is healthy, no one thinks he has a health problem. And a flare up can occur so quickly, they are shocked when he gets sick. During the school year, he could be running around at recess and by the evening, be suffering with severea abdominal pain. I have had to explain to his teachers his condition and how quickly things can change. However, I must say that they have been understanding and helpful. My suggestiion would be to have a talk with the teachers at the beginning of the school year and have a plan of action set in case he gets sick at school and/or is hospitalized.
There is life with this disease. It is a process of learning how to handle it and not letting it handle you. It takes time and patience. As Joann said, it is our trust in God that gets us through each flare up and hospitalization. I will keep you and your family in my prayers.
Nikki -
I also have a son who was diagnosed last June with Hereditary Pancreatitis (PRSS1 mutation) at 3 years old. I have been told by several physicians that they have never head of a case in someone this young – in some ways we are lucky, because we will be able to monitor and treat his condition for virtually his whole life. We haven’t been able to find any familial history of the gene mutation, but we suspect that because he has both the PRSS1 mutation and a single CFTR mutation, the condition has made itself known. He currently takes enzyme supplements 3 times a day and has not had any serious issues since last November. Just as Jane said regarding her son, you would never know that he has a health problem. He is now a totally normal, active, goofy four-year old who has “tummy aches” from time to time, but none that have sent him to the hospital. The difficult part for us is that a four-year-old with a tummy ache is not an uncommon thing – we don’t want to jump to the conclusion of pancreatitis with every instance of pain, but we want to be careful nonetheless.
We are traveling to University of Pittburgh Medical Center later this month to meet with Dr. David Whitcomb and Dr. Andres Gelrud to receive further education on the condition. I’ll be happy to pass along any information we receive.
Hello,
I live in Liverpool in the UK. I have hereditary pancreatitis. I had my first horrible flare-up in 1951 when I just 5. I am now 64 and have just retired from a successful career in teaching.
This is just a word of encouragement. Yes, the disease is horrible. Yes, the pain is awful. But some of us have survived and have managed to lead a normal life. Obviously every case is different but my disease went through different stages and sometimes I felt better than at others.
Please feel free to contact me if you think it might be helpful. I haven’t put much detail but would be very happy to share my experience.
I do sympathise.
My specialist is Professor John Neptolemos at the Royal Liverpool University Hospital.
By the way…..I wasn’t finally diagnosed until 2003!!!
Best wishes
Felicity Brown (Fliss)
Thank you so much everyone. We have just completed a test and waiting on the results. My son has been complaiing of a stomach ache for a couple of years and now I feel horrible for not helping him faster. I will do whatever it takes and if anyone knows of anything please let me know I want to know and would love to contact you all and talk about things more in depth.
To all,
I am so touched by your stories. I too have a 5 year little girl who has had 4 attacks of Pancreatitis in the past 9 months. The doctors have run every test imaginable, and nothing comes up as “wrong or defective”. We had her tested for the PRSS1 gene, and it came back okay. She just got out of the hospital 2 weeks ago, and I had them test her for the SPINK1 and CFTR gene. We will know in a few weeks. I so much understand the pain all the families go through with this disease. We are trying to find a cause, but have had no luck. We have also talked with Dr. Whitcomb at the Univ of Pittsburgh, and may try to see him. We live close to Vanderbilt Children’s Hospital in Nashville, TN, and are trying there first. My heart goes out to everyone, and I pray we all find peace for our children and families.
Best Wishes. Stay Strong.
I have just found out that the test Quantitative Fecak Fat test came back elevated and now my son is on Creon 24, 2 pills every 8 hours. I know this is horrible however, I am looking into every option. University of Chicago children’s hospital has a program that may eventually help my son I am calling Monday as the Nurse Practitioner will be back from vacation. I know that the youngest person they performed this surgery on was 18. After I speak with her I will let all of you know what can be done. We all need to be our children’s advocate and do what we can. My email address is nikkiaguiniga@yahoo.com
[...] This post was mentioned on Twitter by Cancer Knowledge, Nat. Pancreas Fdn. Nat. Pancreas Fdn said: Nikki-A Mother's Story http://bit.ly/d0HsOS #fb [...]
Wow – finally some companionship!
I married a man with chronic pancreatitis, he and his brother had it since childhood and so did an Aunt developed it in her 40′s so we knew it was familial. When we planned to have children in 1984 there were no genetic test for the disease but a familal chart done by my OB indicated the odds of me having children w/CP was about 1 in 5000. I had two children , my daughter was diagnosed at 18 months old and is now 21, my son was diagnosed at five and is now 25. My son’s first attack come on when he was treated with eurthramiacin for pnemonia, which we soon learned could trigger an attack. Both of my kids grew up in the peds ward, and it was not easy. I was the crazy Mom because I had to be so careful about what they ate. Kids birthday parties were always scary. It was really tough as the kids became teenagers and young adults and made some unhealthy choices and paid the price with pain. My son is doing pretty good in spite of not taking care of his body and just quit smoking which I am SO happy about. My daughter takes good care of her body and has always been much more prone to attacks. She had two this year just with the stress of going to college, but finished her Jr. year – yeah! It is not an easy life but good nutrition can go a long way!! I was so alone for so long you can’t imagine how good it is to know there are others out there. I wish you were here 25 years ago, but I’m glad you are here for my kids as they start their own families. I’ve learned a lot about low-fat eating and sneaky foods that hurt them. Feel free to contact me to chat: threebyrds@cox.net Use the subject line: Chronic Genetic Pancreatitis…so you don’t go into my spam folder.
Hello everyone, We just got out of hospital again. This time for only 4 days. Thank goodness. Anyways Derek’s Lipase was over 2500 and Amalyse was over 700. His pain level was between a 5 and 6. The doctors stated that when he has an episode just take away food and water for awhile. Make sure he is not dehydrated. This should help him and if not we will be back to the hospital. Now Derek knows the routine he knows what to expect. Thank you all for caring and when anything else comes up I will make sure to let everyone know.
Nikki,
I am sorry to hear that your son was back in the hospital. The routine that your doctors suggested is what we do. Whenever my son starts to have any little pain or discomfort, he goes on a clear liquid diet for a day or so, then I start introducing fat free foods. If the clear liquid diet doesn’t work to reduce the discomfort or pain, or the pain comes back when I introduce fat free foods, then I call the doctor. As my son has got older, he is able to become more aware of any pain that is pancreatic related. As a resutl, we are able to handle more episodes at home.
He has constantly had pain does it ever go away? Also, he now has a sinus infection and is on sudafed I hope and pray this will not affect him. He is constantly saying that he is hurting so we go back on liquid again. We live in the Highdesert to where it gets to 110 degrees. I am so afraid he will get dehydrated so I keep him in the house and water. When I spoke to Derek’s Dr. he stated that this is life threatening and so I applied for the Make a Wish Foundation and see if they will give him a wish to see or do something that he would never have done if it was not for them. I asked the Doctors if the enzymes are causing the bloated tummy and the pain. Dr. Boultron stated that that was not one of the side effects. I am so tired of this I wish it would go away and he could be a mormal child again. I do not know what is normal but I pray alot. Also any suggestions on getting this insurance to pay for testing on my younger 2 children since it is hereditary? Thank you ALL FOR YOUR STORIES. I need to see and hear about them to help my family…
We are back in the hospital. I wish this would go away. I have called other doctors and tey have not returned my phone calls. Very frustrating however, Derek was hurting and became dehydrated at home now we are back at hospital and they did a MRCP to check the other organs in that area hope to get out Sunday the 12th. We have been in here since Thursday. I hope they find out if anything else might be causing this.
Nikki,
I am so sorry that to hear that your son is back in the hospital. Hopefully, the MRCP will show something. In 2008, my son was in the hospital four times in two and one half months. An ERCP was done and that is when it was found that he had pancreatic divisium, which is a structural defect in the pancreas.
NIkki, I live in an area where there are not many pediatric gi’s, and of those, none really specialize in pancreas diseases. I would suggest that you ask your doctor if he would not mind consulting with a physician who specilizes in this area. My son’s physiicans have consulted with a couple of physicians who speicialize in diseases of the pancreas. I will keep you in my prayers.
I asked the Doctor and he stated that he will contact other specialists. He is at Loma Linda University which is a leading Hospital in the US. So I feel good about the location however, just do not what else to do the MRCP was fine. Derek is feeling good now and hopefully he will not end up back in the hospital. The Doctor is calling me back every time I call him. It is better that it was. Please email me so that we can talk about our children and compare to see if Derek can have some other kind of help.
I just spoke to Dr, Mark Lowe and he stated that Derek would be a good candidate for the pancreas to be removed and auto islet cells to be transplanted. I will now have my son’s Dr. contact Dr. Lowe so that we can be on the same page. I hope and pray that we can get through this and move forward. This is an amazing day and hopefully all will be on board. Dr. Mark Lowe is an amazing Dr. that knows about this disease and I am impressed….
I too married a man with hereditary pancreatitis. Two of our three daughters are affected. Our 18 year old has had 12 ERCP’s. She has a duct that is looped which adds an extra challenge. But, Dr. Kosarek in Seattle has incredible skill with the ERCP. It was recommended to us also to do the complete removal. My daughter is 18 and decided she was unwilling to take the risks at this time. I understand that the removal is an option. My husband has had 2 major surgeries on the pancreas. Neither were successful for him. But then like others, the diagnosis was late coming and back in the early 90′s the choices we have now were not available. Research is progressing. In our extended family a spinctorotimy has helped two family members live relatively pain free. Keep talking to the doctor- that is wonderful he is so kind. We have been working with Dr. Whitcomb in Pittsburgh (they have a great study going on right now).
My son Derek is constantly in pain. I am called at least 2x a week to pick him up from school from the pain. If Derek can be pain free I will do what it takes. I have sent medical records to Dr, Lowe and hope that he will still agree for the surgery. I will keep everyone informed on the progress of this and let everyone know Derek’s outcome. I have 2 other children whom are 7 and 6 I hope and pray they do not have this horrible disease. Derek has the gene mutated of PRSS1 and N291.I will let all know what Dr. Lowe says. Thank you all for caring and it makes me feel like I am not the only one in this situation. Hopefully one day they will find a cure…..
Update on Derek,
I have recived a phone call from Dr. Bultron, Derek’s Dr. and he has spoken to Dr. Lowe. They both agree that Derek will benefit from and Pancrectomy with Auto Islet cells transplanted into the liver. We are excited that there is light at the end of the tunnel. Also, Jane has been helping me cope with this disease. I know that there are other complications with this but Derek is in pain everyday and now is in Home Hospital so that he can cope with the pain at home instead of school. Our Dr. is looking for a Surgeon that has performed this surgery in our area on the West Coast. I will keep you informed on the outcome and the progress of Derek.
I will be getting an updated Ct scan for Derek tomorrow. UCLA has a team that can do the Pancreatectomy with Islet Cell Autotransplant. We will have Loma Linda overnight the CT scan and fax over the Genetic Testing results to Dr. Lipschutz and Dr. Reiber at UCLA. They will need to meet and then have a consultation with us to let us know if Derek is a candidate for this surgery. Please all cross your fingers so that Derek will not be in pain from his Pancreatitis. So Dr. Lowe and Dr. Bultron are amazing and I am happy that we are getting this taken care of. Put it this way, Since my son’s Dr. has been calling other Doctors to see whom would be able to perform this surgery it has gone quick. I will update when we have heard if UCLA agree that Derek nwill benefit from this surgery…. Thank you all for your support…
It is wonderful to see that there others out there that we can share our stories, heartaches, milestones and challenges to. My son is 12 now and was diagnosed with HP when he was 2 1/2. It has been a long road and now that he is older he is able to know when an attach is about to come and be proactive. So glad this is here but certainly wish there would be someone to take this national so that more people out there like us did not have to go through all the research to find help and answers.
Udate to Derek and Suregry,
Went to UCLA and they will not do the surgery so we are now waiting to see what Dr. Lowe says when he gets back from out of the country. I will let you know what he says and Derek’s outcome and progress. Thank you for the support and stories.
Received a phone call from The Surgeon at Childrens Hospital of Pittsburgh and getting closer waiting to see if we can get out there by December 1 and the next week have surgery. The Surgeon needed to find out if the Dr that does the transfer of the autoislet cells and see if he can do it and Derek be considered a good candidate for the surgery. We have done all of the requirements that was given to us and hopefully will leave soon. Will update you if and when anything changes…
Update on Derek:
Great news Dr. Lowe and Dr. Humar have schedueled for Derek to come out there to Pittsburgh on December 7 we see the Endocrinoloigist on Dec 8 and the Psychologist. December 9 Dr. Humar, the Surgeon and December 14 Dr. Lowe. Derek’s surgery will be on December 21 we will be in Pittsburgh for 36 days. Remember we are coming from California. Even though we will miss Christmas with our family we will have a blessing in our life. Derek will be receiving an Pancreatectomy with auto islet cell transplant. This is amazing and I have fought every step of the way. We have An amazing Dr. Who is Dr. Bultron at Loma Linda and he has worked just as hard as myself to get Derek some help. Dr. Lowe has been communicating with Derek’s Doctor and now we will see the outcome. This is truley a miracle and would not have it anyother way. Thank you to Dr. Bultron, Dr. Lowe, Kate, Dr. Lowe’s Secretary, Becky at Miracle Flights For kids, Amy Singh, Transplant Coordinator, Dr, Humar,Jane McCall,My mother and Father who have sacrificed time to watch my other children. Sheri Kibbe to help push me to continue my fight and last but not least my friends and family that have come together to help out with my other children and support thay will be giving me when we return home, Thank you to all… I will continue to let you know how Derek is doing during his recovery.
Update on Derek,
We are in Pittsburgh and we have gone to the consults with the surgeon, Endo and Behavioral Health. We will do a Glucose test, and then see Dr, Lowe on 12/14/10. We have many tests to be done and tenatively the surgery is on Dec 21. This is an amazing facility and would recommend to anyone. This is a lonely Christmas however, it is a great gift. Update to follow after surgery…..
Update: Dr. Humar, Surgeon has agreed to do surgery due to Derek being a good candidate. We just received Insurance approval and willl be having surgery on the 21st for sure. Anxiety has set in with Derek however, he knows that this will help him for the future. Life is great and everyone in Pittsburgh is amazing and very caring. Can not wait to meet Dr, Loew and thank him for eveything he has done for Derek.
Update on Derek:
He had the surgery on December 21 2010
He has had some obsticles but doing great other than that they got many islet cells that they had to put in 3 different areas. Still in ICU but doing well.
Update on Derek:
He is still in the hospital. We are still dealing with some obsticles however they got 2 times more than they would have with other islet transplants. They put the islets in the Liver, Kidneys and the stomach cavity. This looks promising. I am glad that we have chosen this surgery he is in pain from the surgery but has not complained about the same belly pain. I will make sure that my son will not suffer and try to be a normal 10 year old boy. Life is great and we will overcome this obsticle. More updates to follow…
Nikki,
I’m so excited for Derek & your whole family. My son Dylan who had the same surgery as Derek 8 months ago, is doing awesome. Dylan was just taken off all insulin yesterday & I feel we were given nothing short of a miracle. Dylan is totally pain free thank God! I pray that Derek has the same outcome & Derek was blessed with having so many islet cells it’s just so amazing what the Dr.’s can do. It’s so hard to see your child in pain, but when Derek is recovered and pain free and back to doing all the things he loves the surgery pain will be worth it. Dylan still has some struggles which are more of an adjustment issue. We were prepared for the physical / surgical part but the mental part we weren’t prepared for, but with the help of counseling and family support he’s doing better. Dylan has been going through what our surgeon calls an adjustment disorder. It’s from being sick, to surgery, to recovering from surgery & then realizing that he still has medical issues to deal with. We were having a hard time getting Dylan to take his meds, and to want to check his blood sugar, and then when he went back to school he had a hard time balancing meds, school & friends. Dylan just felt different then his friends and felt left out. He had a hard time seeing the big picture at first. The surgeon told him to be patient and let himself heal & he’d be back to all the sports that he loves to play, of course that’s hard for a teenager.
Please know if you or Derek ever need a person to talk to that has been where you are please contact us. There’s very few people who understand and I know that all to well. I will continue to pray for Derek & your whole family.
Thank you so much. I would love to contact you please email me at nikkiaguiniga@yahoo.com. Derek is doing better he is on Coumadin and Creon 24 and Pen VK. He has blood clots still and hopefully will be taken off soon. They are lowering his Insulin all the time and hopefully he will not be diabetic. I am so happy and appreciate all who is involved this is amazing it has been almost 6 weeks and he is getting better everyday. I want everyone to know that our decision for my son has been worth it. He has pain but not like before. I will be an advocate for this surgery and will talk to anyone that needs information. I have pictures of Derek in ICU and room and now. It is amazing.
Our daughter was diagnosed with chronic pancreatitis when she was 12. After 2 hospitalizations we sought a second opinion and found Dr. Andres Gelrud, Dr. Humar and Dr. Whitcomb, and the wonderful transplant coordinator, Amy Singh. On July 7, 2010, following 16 hospitalizations and monthly stent exchanges, Anna underwent surgery at UPMC Children’s Hospital. Dr. Humar infused 478,000 islet cells (3 sacks) in her liver and behind her kidney. We live in Kentucky, but remained in Pittsburgh (and the Ronald McDonald House) through the month of July.
Anna is considered a type 1 diabetic, took the first semester off school to build her body back up and keep the islet cells “quite”. She is able to eat well and has much better control of her life. There have been no further pains following the surgical procedures and normal amounts due to this type of surgery. She was on coumidin, and we do moniter her labs every three months to watch A1C and cpeptide. If the tradeoff will be that she remains diabetic it is fine by her. SHe hasn’t been in a hospital in 7 months – the longest stretch we’ve had in 4 years. They removed her pancreas, spleen, appendix and gall bladder. It is an amazing surgery, but one I would recommend and recommend at this location. The importance of having a :live technition as opposed to a machine that seperates the islet cells is the critical part of this type of surgery. Our insurance was going to send us to one of the “other” locations. Luckily we were able to change insurance companies so we could go to Pittsburgh. Love the physicians, the endorinologists, the hospital and the transplant team. Though they are just starting to transplant more and more at UPMC, they do a superier job and I highlly recommend. Should you want help in spreading the word or understanding this procedure, contact me at Riggerts4@gmail.com.
Derek has passed the 2 month mark from this surgery as well. He is doing great however some complications with his blood clot. He was gaining weight however, now he is losing more weight. His insulin is going down every week he is on 10 Lantus and Humalog is almost not there 1/2 or 1 Humalog with every meal. He is still not going to school as of yet until he is off Coumadin. Derek has a great team taking care of him. Since we are in California we have his Doctor taking care of him and his levels. We will be going back to Pittsburgh when it is required for post op. I hope and pray that soon he will go down on the medications and eventually be done with Insulin. I will continue to update
Update on Derek:
He is doing well some bumps in the road since surgery however, he is mentally staying strong. He has continued to stay on home hospital and now will be moving on to 5th grade. He is off blood thinners now and will be going sometime this summer to Pittsburgh. He will be getting his Make A Wish Granted soon. His wish is to be a comedian for a day with George Lopez. He is exhausted all the time so I think he will be put into physical therapy soon…. Will update soon
Udate on Derek:
He is still having some stomach problems however, Dr. Bultron has been testing his stool and giving him more medication and seems to be working. I can’t tell you enough what an amazing Doctor and person he is. We will be traveling to Pittsburgh on the 2nd of August for follow ups and hope he will get a clean bill of health and be able to participate in some kind of sport. School starts the 10th of August and he is a little scared knowing how much medication he needs to take and his Diabetes. He is still very weak and will be going into physical therapy. Our lives are good and hope soon to be great….. Will update soon…….
Update on Derek,
He is doing amazing. He still has stomach pain however, he is doing great he was released to play any sport he wishes. We are so greatful to whom all helped him and had him in your thoughts and prayers. Thank you all for everything and will continue to update
UPDATE ON DEREK!!!
He is doing great his islets seem to be working he is on 5 units of lantus and 1 unit with every meal if over 80 or above. The last week his blood sugar was in the upper 70s so he has his insulin about 1x a day. This is amazing Life is great. Not too many hospital visits anymore. Thank you Dr. Lowe, Dr. Humar, and Dr. Bultron you are amazing….